Re: frustrated, need to vent and get advice

[Guest guest]

It took me' a long time to get my levels down.Sent from my iPhoneK8 On Sep 10, 2010, at 9:59 AM, "alisonjhughes25" <alison.j.hughes@...> wrote:

Hi All,

So, I'm 6 months gluten-free post CD diagnosis in March 2010... I just had follow-up ttg igg/iga testing done and it still indicated a high level of antibodies (but it has come down from the initial test), but still not "normal". My GI called with the results and this is what he said "Do you eat out alot?" and I said "Yes I eat out sometimes". He told me to completely stop eating out and made an appointment for me with the nutritionist (mind you, I've seen her twice and although she is great, she hasn't told me anything I haven't learned from this board or read in my celiac's books). I know eating out is risky and I do think that's where I'm getting the gluten still. But seriously- the doctor is suggesting I completely stop it? I feel like he's giving me a solution he would never himself follow... I'm a 26 year old single woman! My friends already think I'm paranoid and crazy as it is with my eating habits. I'm just wondering how to maintain a sort of normal life... I suppose if I do eat out I have to be SUPER careful and selective about where I go. And what about traveling? Does the doctor think I never leave town for the weekend?

I'm wondering, besides the eating out thing.. which I clearly need to be more strict about and re-evaluate, if anyone can give me advice on any pitfalls they experienced when they were first diagnosed? I'm thinking... I need to do a thorough sweep of my pantry and bathroom again- do I need to go as far as tossing all my bathroom products with wheat (I've noticed in my shampoo there is wheat germ oil in it- do I need to stop using that stuff???). I've already gone through all my supplements and medications and called manufactures to ensure they're gluten-free... one thing is i found out my generic claritin i was taking could not be verified as gluten-free and i was taking it for several months so that could also be where the gluten was from.

I have been really strict, which is why I'm so disheartened by this news. I know making a huge major life change is not going to be easy and there may be something I'm over-looking. I was feeling great at first but this past month the symptoms have come back... I'm tired of feeling yucky and just want to get better!

Thanks!

Alison

[Guest guest]

It took me 3 years to figure it all out.  CC (CrossContamination), separate pots/pans, getting rid of shampoos with wheat protein,etc.  I didn’t eat out for almost a year and that helped.  I always traveledwith a mini cooler and came prepared with snacks.  It doesn’t always have to bethis way, but give yourself some time to heal and then slowly start eatingout.  Once you’re healed and you go out…you’ll know if that restaurant ismaking you sick or not.  Hang in there…it’s a lengthy process to get healed. You’re not going to be 100% perfect in getting down the diet, label reading,eating out etc.  It all takes time.  If you’re feeling yucky it could be otherfood groups too.  When I was first diagnosed I went through 6 month periods ofbeing on and off dairy.  It wasn’t until I was healed that I could toleratesome.  It’s a lot of trial and error and every individual is different.  Takeit day by day…it does get better/easier! From: [mailto: ] OnBehalf Of KateSent: Friday, September 10, 2010 10:25 AM Subject: Re: [ ] frustrated, need to vent and get advice It took me' a long time to get my levels down.Sent from my iPhoneK8 On Sep 10, 2010, at 9:59 AM, " alisonjhughes25 " <alison.j.hughes@...>wrote: Hi All,So, I'm 6 months gluten-free post CD diagnosis in March 2010... I just hadfollow-up ttg igg/iga testing done and it still indicated a high level ofantibodies (but it has come down from the initial test), but still not " normal " . My GI called with the results and this is what he said " Do you eat out alot? " and I said " Yes I eat outsometimes " . He told me to completely stop eating out and made anappointment for me with the nutritionist (mind you, I've seen her twice andalthough she is great, she hasn't told me anything I haven't learned from thisboard or read in my celiac's books). I know eating out is risky and I do thinkthat's where I'm getting the gluten still. But seriously- the doctor issuggesting I completely stop it? I feel like he's giving me a solution he wouldnever himself follow... I'm a 26 year old single woman! My friends alreadythink I'm paranoid and crazy as it is with my eating habits. I'm just wonderinghow to maintain a sort of normal life... I suppose if I do eat out I have to beSUPER careful and selective about where I go. And what about traveling? Doesthe doctor think I never leave town for the weekend? I'm wondering, besides the eating out thing.. which I clearly need to be morestrict about and re-evaluate, if anyone can give me advice on any pitfalls theyexperienced when they were first diagnosed? I'm thinking... I need to do athorough sweep of my pantry and bathroom again- do I need to go as far astossing all my bathroom products with wheat (I've noticed in my shampoo thereis wheat germ oil in it- do I need to stop using that stuff???). I've alreadygone through all my supplements and medications and called manufactures toensure they're gluten-free... one thing is i found out my generic claritin iwas taking could not be verified as gluten-free and i was taking it for severalmonths so that could also be where the gluten was from.I have been really strict, which is why I'm so disheartened by this news. Iknow making a huge major life change is not going to be easy and there may besomething I'm over-looking. I was feeling great at first but this past monththe symptoms have come back... I'm tired of feeling yucky and just want to getbetter!Thanks!Alison

[Guest guest]

Date: Friday, September 10, 2010, 10:55 AMAlison - I completely agree with - know that this takes time, and it takes awhile to get good at label-reading, etc. I carried list with me of names for gluten products and ingredients that could possibly contain gluten too - here they are if you want to print & carry them for awhile - http://www.gfreefoodie.com/g-free-foodie-guide-ingredient-names-for-gluten/ and http://www.gfreefoodie.com/g-free-foodie-guide-ingredients-that-may-contain-gluten/ - I also think you need to get rid of that shampoo - I was sick

for two weeks & couldn't figure it out, once I got rid of my conditioner with wheat protein in it, I was better. There are lots of companies that make G-Free hair & body care, here's a list to get you started: http://www.gfreefoodie.com/g-free-foodie-guide-to-gluten-free-make-up-body-care/Once you're

feeling better, you can start to add things (and restaurants!) back in to your life - the key thing here is your long-term health.best of luck - and keep reaching out to people for help when you need it!KC IFrom: Wallace <AWallace@...>Subject: RE: [ ] frustrated, need to vent and get advice Date: Friday, September 10, 2010, 10:38 AM

It took me 3 years to figure it all out. CC (Cross

Contamination), separate pots/pans, getting rid of shampoos with wheat protein,

etc. I didn’t eat out for almost a year and that helped. I always traveled

with a mini cooler and came prepared with snacks. It doesn’t always have to be

this way, but give yourself some time to heal and then slowly start eating

out. Once you’re healed and you go out…you’ll know if that restaurant is

making you sick or not. Hang in there…it’s a lengthy process to get healed.

You’re not going to be 100% perfect in getting down the diet, label reading,

eating out etc. It all takes time. If you’re feeling yucky it could be other

food groups too. When I was first diagnosed I went through 6 month periods of

being on and off dairy. It wasn’t until I was healed that I could tolerate

some. It’s a lot of trial and error and every individual is different. Take

it day by day…it does get better/easier!

From:

[mailto: ] On

Behalf Of Kate

Sent: Friday, September 10, 2010 10:25 AM

Subject: Re: [ ] frustrated, need to vent and get advice

It took me' a long time to get my levels down.

Sent from my iPhone

K8

On Sep 10, 2010, at 9:59 AM, "alisonjhughes25" <alison.j.hughes@...>

wrote:

Hi All,

So, I'm 6 months gluten-free post CD diagnosis in March 2010... I just had

follow-up ttg igg/iga testing done and it still indicated a high level of

antibodies (but it has come down from the initial test), but still not

"normal". My GI called with the results and this is what he said

"Do you eat out alot?" and I said "Yes I eat out

sometimes". He told me to completely stop eating out and made an

appointment for me with the nutritionist (mind you, I've seen her twice and

although she is great, she hasn't told me anything I haven't learned from this

board or read in my celiac's books). I know eating out is risky and I do think

that's where I'm getting the gluten still. But seriously- the doctor is

suggesting I completely stop it? I feel like he's giving me a solution he would

never himself follow... I'm a 26 year old single woman! My friends already

think I'm paranoid and crazy as it is with my eating habits. I'm just wondering

how to maintain a sort of normal life... I suppose if I do eat out I have to be

SUPER careful and selective about where I go. And what about traveling? Does

the doctor think I never leave town for the weekend?

I'm wondering, besides the eating out thing.. which I clearly need to be more

strict about and re-evaluate, if anyone can give me advice on any pitfalls they

experienced when they were first diagnosed? I'm thinking... I need to do a

thorough sweep of my pantry and bathroom again- do I need to go as far as

tossing all my bathroom products with wheat (I've noticed in my shampoo there

is wheat germ oil in it- do I need to stop using that stuff???). I've already

gone through all my supplements and medications and called manufactures to

ensure they're gluten-free... one thing is i found out my generic claritin i

was taking could not be verified as gluten-free and i was taking it for several

months so that could also be where the gluten was from.

I have been really strict, which is why I'm so disheartened by this news. I

know making a huge major life change is not going to be easy and there may be

something I'm over-looking. I was feeling great at first but this past month

the symptoms have come back... I'm tired of feeling yucky and just want to get

better!

Thanks!

Alison

[Guest guest]

My levels are still not normal and I've been strictly gluten free for 4+ years.

My gastroenterologist said this is normal. Also, she said the readings are

highly variable. Sigh.

At this year's Stanford celiac conference, one of the doctors (I forget which,

but it might have been Fassano) said that in his experience, people who eat out

for business, travel, pleasure, etc. find it virtually impossible to get to

normal on the blood tests. Sigh.

So . . . you're in good company, for what that's worth.

--lp

P.S. I use wheat free shampoo, cosmetics, etc., but mostly because I don't want

something on my hands that could find its way into my mouth or the mouths of my

daughters.

________________________________________

From: [ ] On Behalf Of

Wallace [AWallace@...]

Sent: Friday, September 10, 2010 10:38 AM

Subject: RE: [ ] frustrated, need to vent and get advice

It took me 3 years to figure it all out. CC (Cross Contamination), separate

pots/pans, getting rid of shampoos with wheat protein, etc. I didn’t eat out

for almost a year and that helped. I always traveled with a mini cooler and

came prepared with snacks. It doesn’t always have to be this way, but give

yourself some time to heal and then slowly start eating out. Once you’re healed

and you go out…you’ll know if that restaurant is making you sick or not. Hang

in there…it’s a lengthy process to get healed. You’re not going to be 100%

perfect in getting down the diet, label reading, eating out etc. It all takes

time. If you’re feeling yucky it could be other food groups too. When I was

first diagnosed I went through 6 month periods of being on and off dairy. It

wasn’t until I was healed that I could tolerate some. It’s a lot of trial and

error and every individual is different. Take it day by day…it does get

better/easier!

From: [mailto: ] On

Behalf Of Kate

Sent: Friday, September 10, 2010 10:25 AM

Subject: Re: [ ] frustrated, need to vent and get advice

It took me' a long time to get my levels down.

Sent from my iPhone

K8

On Sep 10, 2010, at 9:59 AM, " alisonjhughes25 "

<alison.j.hughes@...<mailto:alison.j.hughes@...>> wrote:

Hi All,

So, I'm 6 months gluten-free post CD diagnosis in March 2010... I just had

follow-up ttg igg/iga testing done and it still indicated a high level of

antibodies (but it has come down from the initial test), but still not " normal " .

My GI called with the results and this is what he said " Do you eat out alot? "

and I said " Yes I eat out sometimes " . He told me to completely stop eating out

and made an appointment for me with the nutritionist (mind you, I've seen her

twice and although she is great, she hasn't told me anything I haven't learned

from this board or read in my celiac's books). I know eating out is risky and I

do think that's where I'm getting the gluten still. But seriously- the doctor is

suggesting I completely stop it? I feel like he's giving me a solution he would

never himself follow... I'm a 26 year old single woman! My friends already think

I'm paranoid and crazy as it is with my eating habits. I'm just wondering how to

maintain a sort of normal life... I suppose if I do eat out I have to be SUPER

careful and selective about where I go. And what about traveling? Does the

doctor think I never leave town for the weekend?

I'm wondering, besides the eating out thing.. which I clearly need to be more

strict about and re-evaluate, if anyone can give me advice on any pitfalls they

experienced when they were first diagnosed? I'm thinking... I need to do a

thorough sweep of my pantry and bathroom again- do I need to go as far as

tossing all my bathroom products with wheat (I've noticed in my shampoo there is

wheat germ oil in it- do I need to stop using that stuff???). I've already gone

through all my supplements and medications and called manufactures to ensure

they're gluten-free... one thing is i found out my generic claritin i was taking

could not be verified as gluten-free and i was taking it for several months so

that could also be where the gluten was from.

I have been really strict, which is why I'm so disheartened by this news. I know

making a huge major life change is not going to be easy and there may be

something I'm over-looking. I was feeling great at first but this past month the

symptoms have come back... I'm tired of feeling yucky and just want to get

better!

Thanks!

Alison

[Guest guest]

Yeah - it took 3 months before i stopped eating out or even checking my salad dressings.  I was never better in that time.  it wasn't till i cut

it all out completely that I actually got better.  A little wheat, does

almost as much damage as a ton of it in our cases.

there's about 4 restos i can go to in SF that really feel like i'm safe.  I've also gotten incredibly sick at some. 

It's tricky but it's so worth it.  I know when i hit my year mark of being gluten free - i almost cried (tears of joy) at how significantly i had changed my

lifestyle.  it felt actually amazing.  so definitely keep at it.  it will pay off.

cheers,

On Fri, Sep 10, 2010 at 9:59 AM, alisonjhughes25 <alison.j.hughes@...> wrote:

 

Hi All,

So, I'm 6 months gluten-free post CD diagnosis in March 2010... I just had follow-up ttg igg/iga testing done and it still indicated a high level of antibodies (but it has come down from the initial test), but still not " normal " . My GI called with the results and this is what he said " Do you eat out alot? " and I said " Yes I eat out sometimes " . He told me to completely stop eating out and made an appointment for me with the nutritionist (mind you, I've seen her twice and although she is great, she hasn't told me anything I haven't learned from this board or read in my celiac's books). I know eating out is risky and I do think that's where I'm getting the gluten still. But seriously- the doctor is suggesting I completely stop it? I feel like he's giving me a solution he would never himself follow... I'm a 26 year old single woman! My friends already think I'm paranoid and crazy as it is with my eating habits. I'm just wondering how to maintain a sort of normal life... I suppose if I do eat out I have to be SUPER careful and selective about where I go. And what about traveling? Does the doctor think I never leave town for the weekend?

I'm wondering, besides the eating out thing.. which I clearly need to be more strict about and re-evaluate, if anyone can give me advice on any pitfalls they experienced when they were first diagnosed? I'm thinking... I need to do a thorough sweep of my pantry and bathroom again- do I need to go as far as tossing all my bathroom products with wheat (I've noticed in my shampoo there is wheat germ oil in it- do I need to stop using that stuff???). I've already gone through all my supplements and medications and called manufactures to ensure they're gluten-free... one thing is i found out my generic claritin i was taking could not be verified as gluten-free and i was taking it for several months so that could also be where the gluten was from.

I have been really strict, which is why I'm so disheartened by this news. I know making a huge major life change is not going to be easy and there may be something I'm over-looking. I was feeling great at first but this past month the symptoms have come back... I'm tired of feeling yucky and just want to get better!

Thanks!

Alison

[Guest guest]

It took my wife's body bout 2 years to get her igg/iga numbers down to normal. We stopped most eating out during that time because her villi were so damaged she had 16 pints of blood over 10 months plus ProCrit for about 6 months. We did, though, go to places such as PF Chang's and Outback that had GF menus and were knowledgeable about how to prevent cross-contamination. We also evaluated and eliminated everything, EVERYTHING (food, beverages, cosmetics, soaps, drugs, toothpaste, mouthwash, even eye drops) that could contain gluten or be cross-contaminated. What few things I still eat or use at that contain gluten (good bread, for example) are kept separate, and I thoroughly wash anything that came in contact with those items.All that being said, we do go out to a greater

variety of restaurants now, but she looks for dishes that are gluten free and asks to speak to a manager or cook to explain that she can absolutely only eat GF dishes and could they do whatever is necessary to prevent cross-contamination. They are almost invariably considerate of her requests, and many are aware of celiac disease or, at least, wheat allergies. If you do this, there should be far less chance of being glutened when you go out with friends.As for your friends, show them the responses (experiences and advice) you get from those who respond to you on this list. Also print out or have them look at the celiac page at the federal National Digestive Diseases Information Clearinghouse at: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac. Hopefully that will enlighten them as to how real and necessary a GF diet is for you. HogleFreelance academic librarianInstructor, online researchEmail: jjhogle@...Web: (under de- and re-construction) www.blueroom.comReality ain't what you think it isArt Graphics & Photographs[http://www.blueroom.com/realityaint.htm]From: Wallace <AWallace@...> Sent: Fri, September 10, 2010 10:38:18 AMSubject: RE: [ ] frustrated, need to vent and get advice

It took me 3 years to figure it all out. CC (Cross

Contamination), separate pots/pans, getting rid of shampoos with wheat protein,

etc. I didn’t eat out for almost a year and that helped. I always traveled

with a mini cooler and came prepared with snacks. It doesn’t always have to be

this way, but give yourself some time to heal and then slowly start eating

out. Once you’re healed and you go out…you’ll know if that restaurant is

making you sick or not. Hang in there…it’s a lengthy process to get healed.

You’re not going to be 100% perfect in getting down the diet, label reading,

eating out etc. It all takes time. If you’re feeling yucky it could be other

food groups too. When I was first diagnosed I went through 6 month periods of

being on and off dairy. It wasn’t until I was healed that I could tolerate

some. It’s a lot of trial and error and every individual is different. Take

it day by day…it does get better/easier!

From:

[mailto: ] On

Behalf Of Kate

Sent: Friday, September 10, 2010 10:25 AM

Subject: Re: [ ] frustrated, need to vent and get advice

It took me' a long time to get my levels down.

Sent from my iPhone

K8

On Sep 10, 2010, at 9:59 AM, "alisonjhughes25" <alison.j.hughes@...>

wrote:

Hi All,

So, I'm 6 months gluten-free post CD diagnosis in March 2010... I just had

follow-up ttg igg/iga testing done and it still indicated a high level of

antibodies (but it has come down from the initial test), but still not

"normal". My GI called with the results and this is what he said

"Do you eat out alot?" and I said "Yes I eat out

sometimes". He told me to completely stop eating out and made an

appointment for me with the nutritionist (mind you, I've seen her twice and

although she is great, she hasn't told me anything I haven't learned from this

board or read in my celiac's books). I know eating out is risky and I do think

that's where I'm getting the gluten still. But seriously- the doctor is

suggesting I completely stop it? I feel like he's giving me a solution he would

never himself follow... I'm a 26 year old single woman! My friends already

think I'm paranoid and crazy as it is with my eating habits. I'm just wondering

how to maintain a sort of normal life... I suppose if I do eat out I have to be

SUPER careful and selective about where I go. And what about traveling? Does

the doctor think I never leave town for the weekend?

I'm wondering, besides the eating out thing.. which I clearly need to be more

strict about and re-evaluate, if anyone can give me advice on any pitfalls they

experienced when they were first diagnosed? I'm thinking... I need to do a

thorough sweep of my pantry and bathroom again- do I need to go as far as

tossing all my bathroom products with wheat (I've noticed in my shampoo there

is wheat germ oil in it- do I need to stop using that stuff???). I've already

gone through all my supplements and medications and called manufactures to

ensure they're gluten-free... one thing is i found out my generic claritin i

was taking could not be verified as gluten-free and i was taking it for several

months so that could also be where the gluten was from.

I have been really strict, which is why I'm so disheartened by this news. I

know making a huge major life change is not going to be easy and there may be

something I'm over-looking. I was feeling great at first but this past month

the symptoms have come back... I'm tired of feeling yucky and just want to get

better!

Thanks!

Alison

[Guest guest]

It was Fasano...and he did say that.

-----Original Message-----

From:

[mailto: ] On Behalf Of Palmer,

Sent: Friday, September 10, 2010 11:03 AM

Subject: RE: [ ] frustrated, need to vent and get advice

My levels are still not normal and I've been strictly gluten free for 4+

years. My gastroenterologist said this is normal. Also, she said the

readings are highly variable. Sigh.

At this year's Stanford celiac conference, one of the doctors (I forget

which, but it might have been Fassano) said that in his experience,

people who eat out for business, travel, pleasure, etc. find it

virtually impossible to get to normal on the blood tests. Sigh.

So . . . you're in good company, for what that's worth.

--lp

P.S. I use wheat free shampoo, cosmetics, etc., but mostly because I

don't want something on my hands that could find its way into my mouth

or the mouths of my daughters.

________________________________________

[Guest guest]

While I strongly emphasize the importance of avoiding gluten where ever you can, keep in mind that it's you must make the choice -- not your doctor. It's your life; you decide.

Yes, you do have to be super careful and selective in order to avoid gluten. Finding a graceful, socially inconspicuous, yet effective way to handle eating out is tricky.

I gather you're not very reactive to gluten. You may become more reactive as time goes on; this seems to be a common pattern. At first, I never knew if I ate gluten by mistake. Now, I know it all too well!

You probably know the obvious pitfalls when eating at in a home shared with nonGFs: don't share a toaster or a toaster oven rack; don't use old cast iron or teflon; keep your flatware drawer clean of crumbs; wipe down counters; don't share condiments.

I'm very sensitive, but I've never had a reaction from cosmetics or hair products or even medicaitons. That said, I certainly wouldn't recommend hanging on to a gluten grooming product, as there are few that can't be switched for non-GF. Meds -- that's tough, especially for generics.

If your insurance will cover it, you might see about getting a bone scan to have as a baseline. I have no idea how it might be approached for someone your age -- I don't think there are any medical negatives to it, but I'm not certain.

Best wishes.

H.

-----Original Message-----

From: alisonjhughes25 <alison.j.hughes@...>

< >

Sent: Fri, Sep 10, 2010 9:59 am

Subject: [ ] frustrated, need to vent and get advice

Hi All,

So, I'm 6 months gluten-free post CD diagnosis in March 2010... I just had follow-up ttg igg/iga testing done and it still indicated a high level of antibodies (but it has come down from the initial test), but still not "normal". My GI called with the results and this is what he said "Do you eat out alot?" and I said "Yes I eat out sometimes". He told me to completely stop eating out and made an appointment for me with the nutritionist (mind you, I've seen her twice and although she is great, she hasn't told me anything I haven't learned from this board or read in my celiac's books). I know eating out is risky and I do think that's where I'm getting the gluten still. But seriously- the doctor is suggesting I completely stop it? I feel like he's giving me a solution he would never himself follow... I'm a 26 year old single woman! My friends already think I'm paranoid and crazy as it is with my eating habits. I'm just wondering how to maintain a so

rt of normal life... I suppose if I do eat out I have to be SUPER careful and selective about where I go. And what about traveling? Does the doctor think I never leave town for the weekend?

I'm wondering, besides the eating out thing.. which I clearly need to be more strict about and re-evaluate, if anyone can give me advice on any pitfalls they experienced when they were first diagnosed? >>

Thanks!

Alison

[Guest guest]

Thanks all for your responses! it makes me feel better to know i'm not alone in

this and that it's just going to take time to adjust to this big change in my

life. i am going to try not eating out except at places i know are really safe

like pica pica (i live in SF). its harder in the city because we dont have

chains like outback and pf changs. i live in the mission and eat at taqueria's

often enough. i will ask about 100% corn tortillas but i think i need to be

asking about how the tortillas are heated (like if they are heated in the same

thing as flour or touching the flour tortillas, and asking how/what the meat is

cooked in?).. i'm not sure exactly how to handle the traveling aspect, but

bringing a cooler with foods is a great idea and I will just have to research

quite a bit before traveling where to eat... I have a couple trips planned this

fall to santa rosa/healdsberg, denver, possibly santa barbara. so its going to

take some research before going.

i do have housemates but have keep my food separate, and also have a designated

space for my own silverware and other utensils, pots and pans, dishes, cutting

boards and bakeware. i have my own sponge and dishtowel.. i bought new teflon

and bakeware and utensils at diagnosis... i'm still using dishes and silverware

that was used back in the day with gluten... i do share glasses with my

housemates though. i think at some point in the sort of nearish future- when its

financially possible i'll get my own place, so i can have a gluten-free house!

also, at baseline i got a dexa bone scan and blood work- it was all good except

i'm anemic (have been ever since i can remember-- at least since i was 12) and

my vitamin d was " normal " but basically only one unit above the lowest limit. i

take lots of supplements.

i think at this point i need to sweep through the bath products and get more

serious about eating out.

thanks for your help!

[Guest guest]

Hi Alison,

Yes it's very frustrating. I have found that I pretty much had to stop eating out as well - except for the few super-safe places. Pica Pica has been added to that very short list.

As a thirty-something single woman, it makes life difficult, but it's what I have to do to stay healthy.

Best,

From: alisonjhughes25 <alison.j.hughes@...> Sent: Fri, September 10, 2010 12:46:12 PMSubject: [ ] Re: frustrated, need to vent and get advice

Thanks all for your responses! it makes me feel better to know i'm not alone in this and that it's just going to take time to adjust to this big change in my life. i am going to try not eating out except at places i know are really safe like pica pica (i live in SF). its harder in the city because we dont have chains like outback and pf changs. i live in the mission and eat at taqueria's often enough. i will ask about 100% corn tortillas but i think i need to be asking about how the tortillas are heated (like if they are heated in the same thing as flour or touching the flour tortillas, and asking how/what the meat is cooked in?).. i'm not sure exactly how to handle the traveling aspect, but bringing a cooler with foods is a great idea and I will just have to research quite a bit before traveling where to eat... I have a couple trips planned this fall to santa rosa/healdsberg, denver, possibly santa barbara. so its going to take some research before

going.i do have housemates but have keep my food separate, and also have a designated space for my own silverware and other utensils, pots and pans, dishes, cutting boards and bakeware. i have my own sponge and dishtowel.. i bought new teflon and bakeware and utensils at diagnosis... i'm still using dishes and silverware that was used back in the day with gluten... i do share glasses with my housemates though. i think at some point in the sort of nearish future- when its financially possible i'll get my own place, so i can have a gluten-free house! also, at baseline i got a dexa bone scan and blood work- it was all good except i'm anemic (have been ever since i can remember-- at least since i was 12) and my vitamin d was "normal" but basically only one unit above the lowest limit. i take lots of supplements. i think at this point i need to sweep through the bath products and get more serious about eating out. thanks for your

help!

[Guest guest]

Hi Kate,Even after TWO years, my antibody levels were through the roof, and I knew I was being super careful. It took FOUR years before my antibodies levels were "wonderful." I didn't change anything that I was doing (shampoo, eating, lipstick, etc.) It just took that long. By the way, my endoscopy came out great, too.Best Wishes,CarynOn Sep 10, 2010, at 10:24 AM, Kate wrote: It took me' a long time to get my levels down.Sent from my iPhoneK8 On Sep 10, 2010, at 9:59 AM, "alisonjhughes25" <alison.j.hughes@...> wrote: Hi All, So, I'm 6 months gluten-free post CD diagnosis in March 2010... I just had follow-up ttg igg/iga testing done and it still indicated a high level of antibodies (but it has come down from the initial test), but still not "normal". My GI called with the results and this is what he said "Do you eat out alot?" and I said "Yes I eat out sometimes". He told me to completely stop eating out and made an appointment for me with the nutritionist (mind you, I've seen her twice and although she is great, she hasn't told me anything I haven't learned from this board or read in my celiac's books). I know eating out is risky and I do think that's where I'm getting the gluten still. But seriously- the doctor is suggesting I completely stop it? I feel like he's giving me a solution he would never himself follow... I'm a 26 year old single woman! My friends already think I'm paranoid and crazy as it is with my eating habits. I'm just wondering how to maintain a sort of normal life... I suppose if I do eat out I have to be SUPER careful and selective about where I go. And what about traveling? Does the doctor think I never leave town for the weekend? I'm wondering, besides the eating out thing.. which I clearly need to be more strict about and re-evaluate, if anyone can give me advice on any pitfalls they experienced when they were first diagnosed? I'm thinking... I need to do a thorough sweep of my pantry and bathroom again- do I need to go as far as tossing all my bathroom products with wheat (I've noticed in my shampoo there is wheat germ oil in it- do I need to stop using that stuff???). I've already gone through all my supplements and medications and called manufactures to ensure they're gluten-free... one thing is i found out my generic claritin i was taking could not be verified as gluten-free and i was taking it for several months so that could also be where the gluten was from. I have been really strict, which is why I'm so disheartened by this news. I know making a huge major life change is not going to be easy and there may be something I'm over-looking. I was feeling great at first but this past month the symptoms have come back... I'm tired of feeling yucky and just want to get better! Thanks! Alison

[Guest guest]

kristin,

can you share with me what the other places are on your safe list?

thanks! alison

>

> Hi Alison,

>

> Yes it's very frustrating.  I have found that I pretty much had to stop

eating

> out as well - except for the few super-safe places.  Pica Pica has been added

to

> that very short list.

>

>

> As a thirty-something single woman, it makes life difficult, but it's what I

> have to do to stay healthy.

>

>

> Best,

>

>  

>

>

>

> ________________________________

> From: alisonjhughes25 <alison.j.hughes@...>

>

> Sent: Fri, September 10, 2010 12:46:12 PM

> Subject: [ ] Re: frustrated, need to vent and get advice

>

>  

> Thanks all for your responses! it makes me feel better to know i'm not alone

in

> this and that it's just going to take time to adjust to this big change in my

> life. i am going to try not eating out except at places i know are really safe

> like pica pica (i live in SF). its harder in the city because we dont have

> chains like outback and pf changs. i live in the mission and eat at taqueria's

> often enough. i will ask about 100% corn tortillas but i think i need to be

> asking about how the tortillas are heated (like if they are heated in the same

> thing as flour or touching the flour tortillas, and asking how/what the meat

is

> cooked in?).. i'm not sure exactly how to handle the traveling aspect, but

> bringing a cooler with foods is a great idea and I will just have to research

> quite a bit before traveling where to eat... I have a couple trips planned

this

> fall to santa rosa/healdsberg, denver, possibly santa barbara. so its going to

> take some research before going.

>

> i do have housemates but have keep my food separate, and also have a

designated

> space for my own silverware and other utensils, pots and pans, dishes, cutting

> boards and bakeware. i have my own sponge and dishtowel.. i bought new teflon

> and bakeware and utensils at diagnosis... i'm still using dishes and

silverware

> that was used back in the day with gluten... i do share glasses with my

> housemates though. i think at some point in the sort of nearish future- when

its

> financially possible i'll get my own place, so i can have a gluten-free house!

> also, at baseline i got a dexa bone scan and blood work- it was all good

except

> i'm anemic (have been ever since i can remember-- at least since i was 12) and

> my vitamin d was " normal " but basically only one unit above the lowest limit.

i

> take lots of supplements.

>

>

> i think at this point i need to sweep through the bath products and get more

> serious about eating out.

>

>

> thanks for your help!

>

[Guest guest]

There are several apps for GF foods. I can't remember their names now, but others can probably provide them for those interested.

H.

-----Original Message-----

From: K.C. Pomering <kcloquaci@...>

< >

Sent: Fri, Sep 10, 2010 11:47 am

Subject: Fw: RE: [ ] frustrated, need to vent and get advice

Date: Friday, September 10, 2010, 10:55 AM

Alison -

I completely agree with - know that this takes time, and it takes awhile to get good at label-reading, etc. I carried list with me of names for gluten products and ingredients that could possibly contain gluten too - here they are if you want to print & carry them for awhile - http://www.gfreefoodie.com/g-free-foodie-guide-ingredient-names-for-gluten/ ; and http://www.gfreefoodie.com/g-free-foodie-guide-ingredients-that-may-contain-gluten/ -

I also think you need to get rid of that shampoo - I was sick

for two weeks & couldn't figure it out, once I got rid of my conditioner with wheat protein in it, I was better. There are lots of companies that make G-Free hair & body care, here's a list to get you started: http://www.gfreefoodie.com/g-free-foodie-guide-to-gluten-free-make-up-body-care/

Once you're

feeling better, you can start to add things (and restaurants!) back in to your life - the key thing here is your long-term health.

best of luck - and keep reaching out to people for help when you need it!

KC

I

From: Wallace <AWallace@...>

Subject: RE: [ ] frustrated, need to vent and get advice

Date: Friday, September 10, 2010, 10:38 AM

It took me 3 years to figure it all out. CC (Cross

Contamination), separate pots/pans, getting rid of shampoos with wheat protein,

etc. I didn’t eat out for almost a year and that helped. I always traveled

with a mini cooler and came prepared with snacks. It doesn’t always have to be

this way, but give yourself some time to heal and then slowly start eating

out. Once you’re healed and you go out…you’ll know if that restaurant is

making you sick or not. Hang in there…it’s a lengthy process to get healed.

You’re not going to be 100% perfect in getting down the diet, label reading,

eating out etc. It all takes time. If you’re feeling yucky it could be other

food groups too. When I was first diagnosed I went through 6 month periods of

being on and off dairy. It wasn’t until I was healed that I could tolerate

some. It’s a lot of trial and error and every individual is different. Take

it day by day…it does get better/easier!

From:

[mailto: ] On

Behalf Of Kate

Sent: Friday, September 10, 2010 10:25 AM

Subject: Re: [ ] frustrated, need to vent and get advice

It took me' a long time to get my levels down.

Sent from my iPhone

K8

On Sep 10, 2010, at 9:59 AM, "alisonjhughes25" <alison.j.hughes@...>

wrote:

Hi All,

So, I'm 6 months gluten-free post CD diagnosis in March 2010... I just had

follow-up ttg igg/iga testing done and it still indicated a high level of

antibodies (but it has come down from the initial test), but still not

"normal". My GI called with the results and this is what he said

"Do you eat out alot?" and I said "Yes I eat out

sometimes". He told me to completely stop eating out and made an

appointment for me with the nutritionist (mind you, I've seen her twice and

although she is great, she hasn't told me anything I haven't learned from this

board or read in my celiac's books). I know eating out is risky and I do think

that's where I'm getting the gluten still. But seriously- the doctor is

suggesting I completely stop it? I feel like he's giving me a solution he would

never himself follow... I'm a 26 year old single woman! My friends already

think I'm paranoid and crazy as it is with my eating habits. I'm just wondering

how to maintain a sort of normal life... I suppose if I do eat out I have to be

SUPER careful and selective about where I go. And what about traveling? Does

the doctor think I never leave town for the weekend?

I'm wondering, besides the eating out thing.. which I clearly need to be more

strict about and re-evaluate, if anyone can give me advice on any pitfalls they

experienced when they were first diagnosed? I'm thinking... I need to do a

thorough sweep of my pantry and bathroom again- do I need to go as far as

tossing all my bathroom products with wheat (I've noticed in my shampoo there

is wheat germ oil in it- do I need to stop using that stuff???). I've already

gone through all my supplements and medications and called manufactures to

ensure they're gluten-free... one thing is i found out my generic claritin i

was taking could not be verified as gluten-free and i was taking it for several

months so that could also be where the gluten was from.

I have been really strict, which is why I'm so disheartened by this news. I

know making a huge major life change is not going to be easy and there may be

something I'm over-looking. I was feeling great at first but this past month

the symptoms have come back... I'm tired of feeling yucky and just want to get

better!

Thanks!

Alison

[Guest guest]

I should stress that in the eight years since I was diagnosed, I've chosen to never, ever eat gluten, not back when I had no symptoms.

I've always been as cautious as I knew how to be, but I've still been severely glutened when eating out, with dreadful results. I've learned bit by bit things to watch for. (Restaurant foods prepared with nonGF soy sauce or cooked in woks that had ever been used for such foods were the biggest problem.)

It gets easier, it really does. Ask questions, and we'll have suggestions.

An endoscopy five years after diagnosis, done by a different doctor, showed no damage at all -- he asked, quite seriously, if I was certain that I had CD.

H.

-----Original Message-----

From: Harper <flatcat9@...>

< >

Sent: Fri, Sep 10, 2010 11:55 am

Subject: Re: [ ] frustrated, need to vent and get advice

While I strongly emphasize the importance of avoiding gluten where ever you can, keep in mind that it's you must make the choice -- not your doctor. It's your life; you decide.

Yes, you do have to be super careful and selective in order to avoid gluten. Finding a graceful, socially inconspicuous, yet effective way to handle eating out is tricky.

I gather you're not very reactive to gluten. You may become more reactive as time goes on; this seems to be a common pattern. At first, I never knew if I ate gluten by mistake. Now, I know it all too well!

You probably know the obvious pitfalls when eating at in a home shared with nonGFs: don't share a toaster or a toaster oven rack; don't use old cast iron or teflon; keep your flatware drawer clean of crumbs; wipe down counters; don't share condiments.

I'm very sensitive, but I've never had a reaction from cosmetics or hair products or even medicaitons. That said, I certainly wouldn't recommend hanging on to a gluten grooming product, as there are few that can't be switched for non-GF. Meds -- that's tough, especially for generics.

If your insurance will cover it, you might see about getting a bone scan to have as a baseline. I have no idea how it might be approached for someone your age -- I don't think there are any medical negatives to it, but I'm not certain.

Best wishes.

H.

-----Original Message-----

From: alisonjhughes25 <alison.j.hughes@...>

< >

Sent: Fri, Sep 10, 2010 9:59 am

Subject: [ ] frustrated, need to vent and get advice

Hi All,

So, I'm 6 months gluten-free post CD diagnosis in March 2010... I just had follow-up ttg igg/iga testing done and it still indicated a high level of antibodies (but it has come down from the initial test), but still not "normal". My GI called with the results and this is what he said "Do you eat out alot?" and I said "Yes I eat out sometimes". He told me to completely stop eating out and made an appointment for me with the nutritionist (mind you, I've seen her twice and although she is great, she hasn't told me anything I haven't learned from this board or read in my celiac's books). I know eating out is risky and I do think that's where I'm getting the gluten still. But seriously- the doctor is suggesting I completely stop it? I feel like he's giving me a solution he would never himself follow... I'm a 26 year old single woman! My friends already think I'm paranoid and crazy as it is with my eating habits. I'm just wondering how to maintain a so

rt of normal life... I suppose if I do eat out I have to be SUPER careful and selective about where I go. And what about traveling? Does the doctor think I never leave town for the weekend?

I'm wondering, besides the eating out thing.. which I clearly need to be more strict about and re-evaluate, if anyone can give me advice on any pitfalls they experienced when they were first diagnosed? >>

Thanks!

Alison

[Guest guest]

It sounds as if you're making some good moves. What red cooking utensils are you looking for? Pots and pans and most cooking tools can be washed clean, of course. I find red silicone spatulas and spoons and such at Sur La Table and -Sonoma, although washing them would make them gf-safe.

I keep colored tape in my kitchen drawer, reading to stick on condiments, OTC meds, etc. whenever needed for quick recognition.

H.

-----Original Message-----

From: jtteelme <jtteelme@...>

< >

Sent: Mon, Sep 13, 2010 12:07 pm

Subject: [ ] Re: frustrated, need to vent and get advice

Thanks for your post on this. I'm new to the celiac lifestyle too and am finding it VERY difficult to manage my desire to be "normal" when eating out and the fear of getting sick. I eat out a lot less than I used to but I still get hit with CC far more than I'm comfortable with.

In San Francisco give the Daily Grill a try, they have a gluten free menu that was very tasty and the wait staff is always willing to work with you. The Salt House was great too, no specific gluten free menu but they confirmed when I went that no flour is used to thicken ANY of their sauces and most of the menu was naturally gluten free.

ly, reading your post brought tears to my eyes. I know just how you feel. The frustration with this has been huge and just knowing I'm not alone in those feelings is a great relief. It is hard to go from being an unapologetic foodie to this frightened picky eater. It is a day by day process for me and some are terrible while others feel great. My family and friends have been very supportive but I'm being very vocal about my issue with them.

My husband and daughter are able to eat gluten without any issues (thou they are very supporting of my new lifestyle) so I don't have a gluten free kitchen at home. What I've done to help avoid any CC issues is to buy separate items like a toaster, cutting board, colander all in red. My six year old gets the idea that red means "Stop!" this is for gluten free only and it is a clear consistent message. I'm having trouble finding red cooking utensils so far but I'm sure I'll find them at some point.

>

> Thanks all for your responses! it makes me feel better to know i'm not alone in this and that it's just going to take time to adjust to this big change in my life. i am going to try not eating out except at places i know are really safe like pica pica (i live in SF). its harder in the city because we dont have chains like outback and pf changs. i live in the mission and eat at taqueria's often enough. i will ask about 100% corn tortillas but i think i need to be asking about how the tortillas are heated (like if they are heated in the same thing as flour or touching the flour tortillas, and asking how/what the meat is cooked in?).. i'm not sure exactly how to handle the traveling aspect, but bringing a cooler with foods is a great idea and I will just have to research quite a bit before traveling where to eat... I have a couple trips planned this fall to santa rosa/healdsberg, denver, possibly santa barbara. so its going to take some research before going.

>

> i do have housemates but have keep my food separate, and also have a designated space for my own silverware and other utensils, pots and pans, dishes, cutting boards and bakeware. i have my own sponge and dishtowel.. i bought new teflon and bakeware and utensils at diagnosis... i'm still using dishes and silverware that was used back in the day with gluten... i do share glasses with my housemates though. i think at some point in the sort of nearish future- when its financially possible i'll get my own place, so i can have a gluten-free house! also, at baseline i got a dexa bone scan and blood work- it was all good except i'm anemic (have been ever since i can remember-- at least since i was 12) and my vitamin d was "normal" but basically only one unit above the lowest limit. i take lots of supplements.

>

> i think at this point i need to sweep through the bath products and get more serious about eating out.

>

> thanks for your help!

>

[Guest guest]

,I just want to tell you that I think you are a wonderful asset to our group. I am always appreciative of your posts.From: j. hogle <jjhogle@...> Sent: Mon, September 13, 2010 5:34:51 PMSubject: Re: [ ] Re: frustrated, need to vent and get

advice

Re finding red kitchen utensils or appliances, I suggest two easy ways to find them. Search for the terms red kitchen utensils OR red kitchen appliances (or you can replace the latter two words with the specific appliance) in either of the following two Google tools. Images will be brought up (as well as links to the original pages) that will give you an idea if you might be interested in the products.Google shopper Google images HogleFreelance academic librarianInstructor, online researchEmail: jjhogle@...Web: (under de- and re-construction) www.blueroom.comReality ain't what you think it isArt Graphics & Photographs[http://www.blueroom.com/realityaint.htm]From: jtteelme <jtteelme@...> Sent: Mon, September 13, 2010 9:14:23 AMSubject: [ ] Re: frustrated, need to vent and get advice

Thanks for your post on this. I'm new to the celiac lifestyle too and am finding it VERY difficult to manage my desire to be "normal" when eating out and the fear of getting sick. I eat out a lot less than I used to but I still get hit with CC far more than I'm comfortable with.

In San Francisco give the Daily Grill a try, they have a gluten free menu that was very tasty and the wait staff is always willing to work with you. The Salt House was great too, no specific gluten free menu but they confirmed when I went that no flour is used to thicken ANY of their sauces and most of the menu was naturally gluten free.

ly, reading your post brought tears to my eyes. I know just how you feel. The frustration with this has been huge and just knowing I'm not alone in those feelings is a great relief. It is hard to go from being an unapologetic foodie to this frightened picky eater. It is a day by day process for me and some are terrible while others feel great. My family and friends have been very supportive but I'm being very vocal about my issue with them.

My husband and daughter are able to eat gluten without any issues (thou they are very supporting of my new lifestyle) so I don't have a gluten free kitchen at home. What I've done to help avoid any CC issues is to buy separate items like a toaster, cutting board, colander all in red. My six year old gets the idea that red means "Stop!" this is for gluten free only and it is a clear consistent message. I'm having trouble finding red cooking utensils so far but I'm sure I'll find them at some point.

>

> Thanks all for your responses! it makes me feel better to know i'm not alone in this and that it's just going to take time to adjust to this big change in my life. i am going to try not eating out except at places i know are really safe like pica pica (i live in SF). its harder in the city because we dont have chains like outback and pf changs. i live in the mission and eat at taqueria's often enough. i will ask about 100% corn tortillas but i think i need to be asking about how the tortillas are heated (like if they are heated in the same thing as flour or touching the flour tortillas, and asking how/what the meat is cooked in?).. i'm not sure exactly how to handle the traveling aspect, but bringing a cooler with foods is a great idea and I will just have to research quite a bit before traveling where to eat... I have a couple trips planned this fall to santa rosa/healdsberg, denver, possibly santa barbara. so its going to take some research before

going.

>

> i do have housemates but have keep my food separate, and also have a designated space for my own silverware and other utensils, pots and pans, dishes, cutting boards and bakeware. i have my own sponge and dishtowel.. i bought new teflon and bakeware and utensils at diagnosis... i'm still using dishes and silverware that was used back in the day with gluten... i do share glasses with my housemates though. i think at some point in the sort of nearish future- when its financially possible i'll get my own place, so i can have a gluten-free house! also, at baseline i got a dexa bone scan and blood work- it was all good except i'm anemic (have been ever since i can remember-- at least since i was 12) and my vitamin d was "normal" but basically only one unit above the lowest limit. i take lots of supplements.

>

> i think at this point i need to sweep through the bath products and get more serious about eating out.

>

> thanks for your help!

>

[Guest guest]

hey Alison,

I totally understand. I am 24 and single and explaining to a guy that you cant

have beer because you are allergic puts yourself in a weird position! I was

diagnosed last december so I am 9 months GF, and i would not have been able to

get through it if it werent for how understanding my friends were. It is one of

the hardest things to be told by a Dr what is wrong and then given a bunch of

papers to read because they dont have any other cure, and they dont fully

understand Celiac.

I have not changed any of my bathroom or make-up products, I do not have a

sever case of celiac so I do not get a rash when using shampoo or wearing

stickers like others do. When I go out I really try to go to the restaurants

with a GF menu (PJ's pizza is awesome!) or I will call a place to find out if

they have GF options and look at their menu online. Having the bread on the

table when i go out with friends and family is so tempting, but one thought of

feeling sick or being stuck in the bathroom doesnt make taking a small bite

worth it.

I havent had blood tests in a few months so I am not sure of my levels, but

from past tests I am positive they are not normal! I am extremely anemic, but i

do know being GF has helped that a lot. the best I can say is as long as you

feel good, then you are doing the right things. It is so hard to be a perfect

GF young adult, but explain it to your friends and hopefully they will

understand the importance of you GF diet.

also I just moved to campbell so i am still learning about places to eat, if

you know of any good places let me know!!

Krystal

--- In , " alisonjhughes25 " <alison.j.hughes@...>

wrote:

>

> Hi All,

>

> So, I'm 6 months gluten-free post CD diagnosis in March 2010... I just had

follow-up ttg igg/iga testing done and it still indicated a high level of

antibodies (but it has come down from the initial test), but still not " normal " .

My GI called with the results and this is what he said " Do you eat out alot? "

and I said " Yes I eat out sometimes " . He told me to completely stop eating out

and made an appointment for me with the nutritionist (mind you, I've seen her

twice and although she is great, she hasn't told me anything I haven't learned

from this board or read in my celiac's books). I know eating out is risky and I

do think that's where I'm getting the gluten still. But seriously- the doctor is

suggesting I completely stop it? I feel like he's giving me a solution he would

never himself follow... I'm a 26 year old single woman! My friends already think

I'm paranoid and crazy as it is with my eating habits. I'm just wondering how to

maintain a sort of normal life... I suppose if I do eat out I have to be SUPER

careful and selective about where I go. And what about traveling? Does the

doctor think I never leave town for the weekend?

>

> I'm wondering, besides the eating out thing.. which I clearly need to be more

strict about and re-evaluate, if anyone can give me advice on any pitfalls they

experienced when they were first diagnosed? I'm thinking... I need to do a

thorough sweep of my pantry and bathroom again- do I need to go as far as

tossing all my bathroom products with wheat (I've noticed in my shampoo there is

wheat germ oil in it- do I need to stop using that stuff???). I've already gone

through all my supplements and medications and called manufactures to ensure

they're gluten-free... one thing is i found out my generic claritin i was taking

could not be verified as gluten-free and i was taking it for several months so

that could also be where the gluten was from.

>

> I have been really strict, which is why I'm so disheartened by this news. I

know making a huge major life change is not going to be easy and there may be

something I'm over-looking. I was feeling great at first but this past month the

symptoms have come back... I'm tired of feeling yucky and just want to get

better!

>

> Thanks!

> Alison

>

[Guest guest]

Krystal, I want to clarify a few points:

A person with celiac disease may have no apparent reaction to gluten. When I was diagnosed, I had no GI symptoms, no reaction to gluten that I was aware of. However, my biopsy showed severe damage to villii.

Changing to GF haircare and cosmetics is a good idea because those items tend to get in one's mouth -- you touch your hair, your face, your lips.

Rashes and blisters from gluten exposure usually mean that one has dermatitis herpetiformis (DH), an AD that's closely related to CD. These rashes don't indicate "severe" CD. The treatment for DH is avoidance of gluten, making some other dietary changes, and/or the help of a specific medication.

As far as I know, there isn't "severe" CD -- one's overt reactions

may be severe or "invisible", but you have CD, or you don't have CD. The body's reactions may be silent. That may be what you were saying, in different words.

Best wishes.

H.

-----Original Message-----

From: Krystal Henry <henry_krystal@...>

< >

Sent: Wed, Sep 15, 2010 4:06 pm

Subject: [ ] Re: frustrated, need to vent and get advice

<< I do not have a sever case of celiac so I do not get a rash when using shampoo or wearing stickers like others do. >>

Krystal

>

> Hi All,

>

> So, I'm 6 months gluten-free post CD diagnosis in March 2010... I just had follow-up ttg igg/iga testing done and it still indicated a high level of antibodies (but it has come down from the initial test), but still not "normal". My GI called with the results and this is what he said "Do you eat out alot?" and I said "Yes I eat out sometimes". He told me to completely stop eating out and made an appointment for me with the nutritionist (mind you, I've seen her twice and although she is great, she hasn't told me anything I haven't learned from this board or read in my celiac's books). I know eating out is risky and I do think that's where I'm getting the gluten still. But seriously- the doctor is suggesting I completely stop it? I feel like he's giving me a solution he would never himself follow... I'm a 26 year old single woman! My friends already think I'm paranoid and crazy as it is with my eating habits. I'm just wondering how to maintain

a sort of normal life... I suppose if I do eat out I have to be SUPER careful and selective about where I go. And what about traveling? Does the doctor think I never leave town for the weekend?

>

> I'm wondering, besides the eating out thing.. which I clearly need to be more strict about and re-evaluate, if anyone can give me advice on any pitfalls they experienced when they were first diagnosed? I'm thinking... I need to do a thorough sweep of my pantry and bathroom again- do I need to go as far as tossing all my bathroom products with wheat (I've noticed in my shampoo there is wheat germ oil in it- do I need to stop using that stuff???). I've already gone through all my supplements and medications and called manufactures to ensure they're gluten-free... one thing is i found out my generic claritin i was taking could not be verified as gluten-free and i was taking it for several months so that could also be where the gluten was from.

>

> I have been really strict, which is why I'm so disheartened by this news. I know making a huge major life change is not going to be easy and there may be something I'm over-looking. I was feeling great at first but this past month the symptoms have come back... I'm tired of feeling yucky and just want to get better!

>

> Thanks!

> Alison

>