Gluten Question

May 15, 2004

e:

>I have not had gluten for almost a year now. Easter, I must have eaten

>some! All my good work vanished! Now I am trying to figure out where

>and what it was. The only thing I can pinpoint is some gourmet ice

>cream called " Hanna Barbara " I called them to ask about the

>ingredients and the only ingredient they had besides milk and cream to

>tell me about was " locust bean gum " . Does anyone know anything about this?

>Thanks,

>Del

Locust bean gum comes from the locust bean, which doesn't by itself

have gluten. But remember, 16% of the items MARKED " Gluten free " contain

gluten when tested! Most of the problem is contamination, which just makes

everyone feel crazy. Those " gums " also cause symptoms in some people,

aside from gluten issues.

Also the labels do not, by law, have to include some of the ingredients.

There is a motion to change this. But right now, if dates roll down a

conveyer that is dusted with wheat flour (as is commonly the case, it seems) the

wheat flour is not listed. One thing that helps is to join one of those

GF groups and post a message like " Has anyone eaten XYZ and is it ok? " .

There is amazing consensus for a lot of products.

Now, as for ice cream in general ... kefiili makes GREAT ice cream. The

polysaccharides

work just like those gums to make a nice smooth product! I also made some

" gelato " using frozen berries (mashed) with some gelatin boiled in water mixed

in.

Since we have a whole freezer FULL of berries, it seems more logical to use

those than to buy ice cream. Berry season is almost here ... get those berry

buckets

warmed up, grab yourself some!

-- Heidi Jean

May 15, 2004

Heidi wrote:

> Locust bean gum comes from the locust bean, which doesn't by itself

> have gluten. But remember, 16% of the items MARKED " Gluten free " contain

> gluten when tested! Most of the problem is contamination, which just

makes

> everyone feel crazy. Those " gums " also cause symptoms in some people,

> aside from gluten issues.

---Yeah, I do think I am sensitive to the " gums " . I am turning out to

be sensitive to more than just gluten.---

One thing that helps is to join one of those

> GF groups and post a message like " Has anyone eaten XYZ and is it ok? " .

---Can you recommend a good GF group?

>

> Now, as for ice cream in general ... kefiili makes GREAT ice cream.

The polysaccharides

> work just like those gums to make a nice smooth product! I also made

some

> " gelato " using frozen berries (mashed) with some gelatin boiled in

water mixed in.

---Would you believe I have yet to make ice cream with my kefiili? I

thought I could get away with just buying some expensive gourmet ice

cream. I am going to make ice cream! What gelatin do you use to make

gelato? Can you retell your kefiili ice cream recipe?---

> Since we have a whole freezer FULL of berries, it seems more logical

to use

> those than to buy ice cream. Berry season is almost here ... get

those berry buckets

> warmed up, grab yourself some!

---Found out last year that I cannot eat frogen berries. :-(---

>

> -- Heidi Jean

Thanks,

Del

May 15, 2004

>

>One thing that helps is to join one of those

>> GF groups and post a message like " Has anyone eaten XYZ and is it ok? " .

>

>---Can you recommend a good GF group?

<CELIAC@...>

is the one I'm on. There is one at Delphi, I've heard, that is good, but they

don't send email, you have to view stuff live.

>

>---Would you believe I have yet to make ice cream with my kefiili? I

>thought I could get away with just buying some expensive gourmet ice

>cream. I am going to make ice cream! What gelatin do you use to make

>gelato? Can you retell your kefiili ice cream recipe?---

For kefiili ice cream, I mix half kefiili cream and half kefiili, then add

flavor.

So far mainly berries, we have a freezer full and the family likes them.

Chocolate

would be good too. I just go by taste, I don' have no' recipes ...

For the gelato, I thawed out some berries (a quart or so). Then I boiled a cup

of water and added an envolope of gelatin (just plain Knox, that's what I

have in the cupboard). When it dissolved, I let it cool and added it to the

berries.

And a little sugar. The berries, having been frozen, were pretty mashed up

but if they were fresh I would have mashed them.

>> Since we have a whole freezer FULL of berries, it seems more logical

>to use

>> those than to buy ice cream. Berry season is almost here ... get

>those berry buckets

>> warmed up, grab yourself some!

>

>---Found out last year that I cannot eat frogen berries. :-(---

Can you eat fresh ones? Well, if not, then use any fruit. Bananas would be good.

Though personally I think coconut milk ice cream is the BEST ... just add the

sweetener of your choice to some coconut milk (and water if you want it

not so rich). Adding the gelatin wouldn't be a bad idea either (as above). Or

use

lemon juice for " lemonade gelato " . Or rhubarb. Or applesauce.

Berries do seem to be a

problem for some folks. One reason may be how they are picked ...

they get mold really easily and you have to be ultra careful (I pick on sunny

days, and only take the perfectly ripe ones, and pop them into the freezer

quickly).

Of course, for those you want to avoid all fruit you could watch that

episode of " The Iron Chef: America " where he made sashimi ice

cream from raw trout (don't ask me the recipe!).

-- Heidi Jean

May 15, 2004

I don' have no' recipes ...

---Yes, I know, I remember. :-)---

>

> For the gelato, I thawed out some berries (a quart or so). Then I

boiled a cup

> of water and added an envolope of gelatin (just plain Knox, that's

what I

> have in the cupboard). When it dissolved, I let it cool and added it

to the berries.

> And a little sugar. The berries, having been frozen, were pretty

mashed up

> but if they were fresh I would have mashed them.

---This sounds great! Thanks.---

> >---Found out last year that I cannot eat frogen berries. :-(---

>

> Can you eat fresh ones?

---Fresh, I can do.---

Bananas would be good.

> Though personally I think coconut milk ice cream is the BEST ...

just add the

> sweetener of your choice to some coconut milk (and water if you want it

> not so rich). Adding the gelatin wouldn't be a bad idea either (as

above). Or use

> lemon juice for " lemonade gelato " . Or rhubarb. Or applesauce.

---All of above sound wonderful! Thanks---

>

> Berries do seem to be a

> problem for some folks. One reason may be how they are picked ...

> they get mold really easily and you have to be ultra careful (I pick

on sunny

> days, and only take the perfectly ripe ones, and pop them into the

freezer

> quickly).

----I will try again this summer to see if I can eat them frozen. I

suspected last year that some were not as ripe as should be.---

>

> Of course, for those you want to avoid all fruit you could watch that

> episode of " The Iron Chef: America " where he made sashimi ice

> cream from raw trout (don't ask me the recipe!).

---Now, that I won't make! Save that for some brave soul!---

>

> -- Heidi Jean

Thanks,

Del

May 15, 2004

> >---Can you recommend a good GF group?

>

> <CELIAC@M...>

Heidi,

I sent an email to this and it was rejected. Can you recheck, please?

Thanks, Del

May 16, 2004

>----I will try again this summer to see if I can eat them frozen. I

>suspected last year that some were not as ripe as should be.---

That does seem odd that frozen would be a problem!

I had problems with wine that we made a few years ago

though (but not other wine) which I suspect has to

do with the fact our kitchen was full of flour dust

at the time (or the yeast used). I used to use the same

scoop for flour as for sugar, and we put sugar in the

wine ...

You might try eating

some fresh, then freezing THAT SAME BATCH and

see if that is an issue. I'm curious!

-- Heidi Jean

May 16, 2004

>> >---Can you recommend a good GF group?

>>

>> <CELIAC@M...>

>

>Heidi,

>

>I sent an email to this and it was rejected. Can you recheck, please?

Go to:

http://www.lsoft.com/scripts/wl.exe?SL1=CELIAC & H=MAELSTROM.STJOHNS.EDU

and follow the directions there. It's not the easiest site

to join. Here are the directions:

To subscribe, send mail to

<mailto:LISTSERV@...>LISTSERV@... with the

command (paste it!):

SUBSCRIBE CELIAC

You have to do EXACTLY that! They have online archives tho that are

pretty good.

-- Heidi Jean

May 16, 2004

Heidi wrote:

> You might try eating

> some fresh, then freezing THAT SAME BATCH and

> see if that is an issue. I'm curious!

>

> -- Heidi Jean

good idea! I will try it. Blueberries will be ready in June around here.

Thanks,

Del

May 17, 2004

Thanks Heidi. I did it, now lets what happens.

Del

Heidi wrote:

>

> >> >---Can you recommend a good GF group?

> >>

> >> <CELIAC@M...>

> >

> >Heidi,

> >

> >I sent an email to this and it was rejected. Can you recheck, please?

>

> Go to:

>

> http://www.lsoft.com/scripts/wl.exe?SL1=CELIAC & H=MAELSTROM.STJOHNS.EDU

>

> and follow the directions there. It's not the easiest site

> to join. Here are the directions:

>

> To subscribe, send mail to <mailto:LISTSERV@M...>LISTSERV@M... with

the command (paste it!):

>

> SUBSCRIBE CELIAC

>

> You have to do EXACTLY that! They have online archives tho that are

> pretty good.

>

> -- Heidi Jean

September 21, 2006

I have been gluten intollerant for the last 10 years. Never had any problems

with it till I got sick with Lyme and co infection back in the early 90's..

Robyn

-- [ ] gluten question

Has anyone else been diagnosed gluten sensitive and lyme...are they

associated? I just got diagnosed with both, and I have vulvodynia

Doc is starting me on doxcy now, just found out I have lyme last week.

Im looking at 6 months of treatment at this time.

please help

September 21, 2006

Most doctors will test for allergies to make sure you are not eating foods

that will create inflammation and that may keep your immune system working

overtime.

At 12:57 PM 9/20/2006, you wrote:

>Has anyone else been diagnosed gluten sensitive and lyme...are they

>associated? I just got diagnosed with both, and I have vulvodynia

>

>Doc is starting me on doxcy now, just found out I have lyme last week.

>Im looking at 6 months of treatment at this time.

>

>please help

>

September 21, 2006

I have been diagnosed with Lyme and a gluten

allergy. I'm not sure if it is a coincidence or

not, but I wasn't aware of my gluten allergy

until my Lyme results came back positive. I have

also read that Lyme can live off of gluten. Who

knows what to believe with everything we read

regarding Lyme. Not sure if this will help, but

its all I have right now. Be well!

Donna

__________________________________________________

June 2, 2010

I don't always get a reaction. It was the bummer of diagnosis for me... I didn't always feel bad :(Be happy you don't feel sick, but lesson learned, right? :-)From: Deb Matsuoka <kdmatsuoka@...> Sent: Tue, June 1, 2010 9:03:50 PMSubject: [ ] Gluten

Question

I have been diagnosed with Celiac and been gluten free for the last 2 years, tonight I ate some french fries and found out after eating them that they were seasoned with flour prior to frying. So far I feel fine, could I have been misdiagnosed or do others not have symptoms after having gluten by accident?

Any suggestions/ ideas would be great.

June 2, 2010

Many people with celiac do not have symptoms upon eating gluten,

especially if it’s such a small amount. It will still cause the autoimmune

reaction, but there will not necessarily be any outward sign of this. It’s

also possible that you won’t notice anything immediately, but rather in a

day or two.

If you were diagnosed by biopsy, you were not very likely to

have been misdiagnosed, but to be absolutely sure you could have another GI (someone

experienced with celiac damage) read your biopsy slides.

From:

[mailto: ] On

Behalf Of Deb Matsuoka

Sent: Tuesday, June 01, 2010 9:04 PM

Subject: [ ] Gluten Question

I

have been diagnosed with Celiac and been gluten free for the last 2 years,

tonight I ate some french fries and found out after eating them that they were

seasoned with flour prior to frying. So far I feel fine, could I have

been misdiagnosed or do others not have symptoms after having gluten by

accident?

Any

suggestions/ideas would be great.

June 2, 2010

My gastro doctor told me (and I also read the stats) that around 40% of people with celiac show no outward symptoms. However, they are still having the autoimmune reaction.On Jun 1, 2010, at 9:03 PM, Deb Matsuoka wrote:I have been diagnosed with Celiac and been gluten free for the last 2 years, tonight I ate some french fries and found out after eating them that they were seasoned with flour prior to frying. So far I feel fine, could I have been misdiagnosed or do others not have symptoms after having gluten by accident? Any suggestions/ideas would be great.

June 2, 2010

You may not be that sensitive and/or may feel the symptoms tomorrow??melis b----- "Deb Matsuoka" <kdmatsuoka@...> wrote: > > > >

I have been diagnosed with Celiac and been gluten free for the last 2 years, tonight I ate some french fries and found out after eating them that they were seasoned with flour prior to frying. So far I feel fine, could I have been misdiagnosed or do others not have symptoms after having gluten by accident?

Any suggestions/ideas would be great.

>

June 2, 2010

Were you diagnosed through blood tests or biopsies? My understanding is that false positive diagnoses through these methods are unusual.

Many people with CD are asymptomatic, especially early on. Keep in mind that even without symptoms damage results.

I had no GI symptoms for about two years after I was diagnosed. I know I had several accidental ingestions during that learning period, without the awfuls that now would result.

I hope you escaped after-effects from the french fry incident!

H.

CD dx 2002

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

From: melbatavia@...

Sent: Wed, Jun 2, 2010 8:29 am

Subject: Re: [ ] Gluten Question

You may not be that sensitive and/or may feel the symptoms tomorrow??

melis b

----- "Deb Matsuoka" <kdmatsuokasbcglobal (DOT) net> wrote:

> > > >

I have been diagnosed with Celiac and been gluten free for the last 2 years, tonight I ate some french fries and found out after eating them that they were seasoned with flour prior to frying. So far I feel fine, could I have been misdiagnosed or do others not have symptoms after having gluten by accident?

Any suggestions/ideas would be great.

>

June 2, 2010

To anyone who was at the Stanford Conference: Wasnâ€™t it stated, in the â€œIcebergâ€ diagram that 10% are symptomatic,50% Latent and 60% Silent?Â This is in regards to those with CD.Â Also, I remember from the final Q & A portion, Dr. Fasano wasmentioning that reactions donâ€™t necessarily happen right away and can show upweeks after.Â Someone from the audience had asked a question regarding â€œSo justbecause I donâ€™t â€œget glutenedâ€ at a restaurant doesnâ€™t mean that damage didnâ€™t happen?â€and he said rightâ€¦that even those who are reactionary might not have a socalled reaction, but still adds an â€œincidentâ€ to the long term cumulative logof gluten exposure. Please correct me if you heard otherwise. Tks! From: [mailto: ] OnBehalf Of HarperSent: Wednesday, June 02, 2010 9:31 AM Subject: Re: [ ] Gluten Question Were you diagnosed through blood tests or biopsies? Myunderstanding is that false positive diagnoses through these methods areunusual. Many people with CD are asymptomatic, especially early on. Keep in mind thateven without symptoms damage results. I had no GI symptoms for about two years after I was diagnosed. I know I hadseveral accidental ingestions during that learning period, without the awfulsthat now would result.I hope you escaped after-effects from the french fry incident!H.CD dx 2002 ._,___

June 2, 2010

, could you explain the difference between "Latent" and "Silent" for those of us who weren't at the conference? (If it's not too complicated....)Thanks,CarynOn Jun 2, 2010, at 9:50 AM, Wallace wrote:To anyone who was at the Stanford Conference: Wasn’t it stated, in the “Iceberg” diagram that 10% are symptomatic, 50% Latent and 60% Silent? This is in regards to those with CD. Also, I remember from the final Q & A portion, Dr. Fasano was mentioning that reactions don’t necessarily happen right away and can show up weeks after. Someone from the audience had asked a question regarding “So just because I don’t “get glutened” at a restaurant doesn’t mean that damage didn’t happen?” and he said right…that even those who are reactionary might not have a so called reaction, but still adds an “incident” to the long term cumulative log of gluten exposure. Please correct me if you heard otherwise. Tks! From: [mailto: ] On Behalf Of HarperSent: Wednesday, June 02, 2010 9:31 AM Subject: Re: [ ] Gluten Question Were you diagnosed through blood tests or biopsies? My understanding is that false positive diagnoses through these methods are unusual. Many people with CD are asymptomatic, especially early on. Keep in mind that even without symptoms damage results. I had no GI symptoms for about two years after I was diagnosed. I know I had several accidental ingestions during that learning period, without the awfuls that now would result.I hope you escaped after-effects from the french fry incident!H.CD dx 2002 ._,___

June 3, 2010

Hi Caryn-

The way I understood it (so please take it with a grain of salt)

is that Latent is that the disease is there and waiting to get triggered…so

for instance, I was diagnosed 5 ½ years ago and only felt bad for about a year

and ½ before the diagnosis…all those years before that year and a half I was

latent…this is still no reason why it surfaces. So damage was not occurring.

Silent is when the damage is happening and you have no idea…for

instance, one consumes gluten and does not have an outward reaction, but one

day they fall and break many bones. This can be caused by the silent reaction

of malabsorption until one day you have full bone osteoporosis and had no idea.

The whole thing can be scary if you over think it, b/c everyone

has different reactions when ingesting gluten, so even though an 1/8 of a

teaspoon of gluten is damaging, I wonder if I don’t feel the reaction

until ½ teaspoon, so am I slightly damaging myself every now and again and not

even realizing it? The only way to be sure is to keep up with tests and listen

to your own body. And also keep up our hopes for all the clinical trials

taking place that might someday help us or our next generations!

Sorry I cant elaborate further, I don’t want to misquote any

of the speakers and in general there are a lot of theories in accordance to our

disease right now.

-

From:

[mailto: ] On Behalf Of Caryn Gottfried

Sent: Wednesday, June 02, 2010 3:57 PM

Subject: Re: [ ] Gluten Question

, could you explain the difference between " Latent " and " Silent "

for those of us who weren't at the conference? (If it's not too

complicated....)

Thanks,

Caryn

On Jun 2, 2010, at 9:50 AM, Wallace wrote:

_

June 3, 2010

Thanks, for your clear and quick response!Best Wishes,CarynOn Jun 2, 2010, at 4:09 PM, Wallace wrote:Hi Caryn- The way I understood it (so please take it with a grain of salt) is that Latent is that the disease is there and waiting to get triggered…so for instance, I was diagnosed 5 ½ years ago and only felt bad for about a year and ½ before the diagnosis…all those years before that year and a half I was latent…this is still no reason why it surfaces. So damage was not occurring. Silent is when the damage is happening and you have no idea…for instance, one consumes gluten and does not have an outward reaction, but one day they fall and break many bones. This can be caused by the silent reaction of malabsorption until one day you have full bone osteoporosis and had no idea. The whole thing can be scary if you over think it, b/c everyone has different reactions when ingesting gluten, so even though an 1/8 of a teaspoon of gluten is damaging, I wonder if I don’t feel the reaction until ½ teaspoon, so am I slightly damaging myself every now and again and not even realizing it? The only way to be sure is to keep up with tests and listen to your own body. And also keep up our hopes for all the clinical trials taking place that might someday help us or our next generations! Sorry I cant elaborate further, I don’t want to misquote any of the speakers and in general there are a lot of theories in accordance to our disease right now. - From: [mailto: ] On Behalf Of Caryn GottfriedSent: Wednesday, June 02, 2010 3:57 PM Subject: Re: [ ] Gluten Question , could you explain the difference between "Latent" and "Silent" for those of us who weren't at the conference? (If it's not too complicated....) Thanks,Caryn On Jun 2, 2010, at 9:50 AM, Wallace wrote:_

June 4, 2010

Pam, thanks for the response.

I have not been diagnosed with a biopsy or blood test. I went gluten free based on a doctors recommendation, I had all the symptoms. After a few weeks I felt great, tons of energy, no more GI issues and was starting to feel "normal". I finally got in with my GI doc and it was too late to take the blood or biopsy tests. I then took the EnteroLab tests and it came back that I had one of the gene's for Celiac and that I had a very high number when it came to the Gluten Sensitivity. Based on that my GI doc felt very convinced I had Celiac.. now I am starting to question if he is right or not.

I have been feeling great since I went Gluten Free but I am just wondering if I have Celiac, Gluten Sensitivity or is this all in my head?

Any suggestions would be great, are there any tests I can do now that I wouldn't have to go back on gluten for?

Deb

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

From: Pam Newbury

Sent: Thursday, June 03, 2010 4:38 PM

Subject: [ ] Gluten Question

This is not unusual. My husband had a very similar experience. Even right after his diagnosis, whenever he had accidental gluten he did not experience any outward, obvious reaction. For a years he doubted his diagnosis in spite of classic villi damage on his initial biopsy. When the blood tests were developed (about 4 years after his diagnosis), he decided to do a gluten challenge. After a 2-week gluten challenge he showed no antibodies and had no symptoms, so he went on a longer gluten challenge. It was 6 months before he felt symptoms (on about 1 pastry a day of gluten) and at 9 months (he is a stubborn guy) he took the blood tests again and had positive antibodies.

Remember that you have been healing for 2 years and your gut is getting back to normal. Everybody’s response to gluten is different, and that response can change over time depending in part on diet, stress, and overall health. As others have mentioned, if you were diagnosed by biopsy and/or blood tests and responded well to the GF diet, a one-time accidental gluten challenge is not an indicator of the reliability of your diagnosis and I would not suggest a longer gluten challenge or retest. If there was doubt about the initial diagnosis or if you are self-diagnosed, that is a different story with a more complicated response (let us know if that is your situation and you need suggestions based on that).

Pam Newbury

From: [mailto: ] On Behalf Of Deb MatsuokaSent: Tuesday, June 01, 2010 9:04 PM Subject: [ ] Gluten Question

I have been diagnosed with Celiac and been gluten free for the last 2 years, tonight I ate some french fries and found out after eating them that they were seasoned with flour prior to frying. So far I feel fine, could I have been misdiagnosed or do others not have symptoms after having gluten by accident?

Any suggestions/ideas would be great.

June 4, 2010

It’s really frustrating to hear that doctors are

recommending going gluten-free without even doing the blood test. Yet they did

the genetic test! How odd. Anyway, no, once you are on the diet, you

cannot detect celiac disease.

Based on what you say, it sounds like you may have gluten

sensitivity. The genetic test only means that it’s possible for you to have

celiac, not that you do. About 35-40% of the population has one of those genes,

while only 1% have celiac. That’s why the genetic test is not used to

diagnose celiac. A biopsy is the gold standard, which follows a positive serum

result. Both would be negative after being on a GF diet for several months or

so.

I’m sorry! But if you do feel better on a GF diet, and you’re

able to maintain it, then you might as well continue it. Feeling better

is what’s important, not labeling your condition, right?

Best wishes,

From:

[mailto: ] On Behalf Of Deb Matsuoka

Sent: Thursday, June 03, 2010 7:16 PM

Subject: Re: [ ] Gluten Question

Pam,

thanks for the response.

I

have not been diagnosed with a biopsy or blood test. I went gluten free

based on a doctors recommendation, I had all the symptoms. After a few

weeks I felt great, tons of energy, no more GI issues and was starting to feel

" normal " . I finally got in with my GI doc and it was too late

to take the blood or biopsy tests. I then took the EnteroLab tests and it

came back that I had one of the gene's for Celiac and that I had a very high

number when it came to the Gluten Sensitivity. Based on that my GI doc

felt very convinced I had Celiac.. now I am starting to question if he is right

or not.

I

have been feeling great since I went Gluten Free but I am just wondering if I

have Celiac, Gluten Sensitivity or is this all in my head?

Any

suggestions would be great, are there any tests I can do now that I wouldn't

have to go back on gluten for?

Deb

-----

Original Message -----

From: Pam Newbury

Sent: Thursday, June 03,

2010 4:38 PM

Subject: [ ]

Gluten Question

This is not unusual. My husband

had a very similar experience. Even right after his diagnosis, whenever

he had accidental gluten he did not experience any outward, obvious

reaction. For a years he doubted his diagnosis in spite of classic villi

damage on his initial biopsy. When the blood tests were developed (about

4 years after his diagnosis), he decided to do a gluten challenge. After

a 2-week gluten challenge he showed no antibodies and had no symptoms, so he

went on a longer gluten challenge. It was 6 months before he felt

symptoms (on about 1 pastry a day of gluten) and at 9 months (he is a stubborn

guy) he took the blood tests again and had positive antibodies.

Remember that you have been healing for

2 years and your gut is getting back to normal. Everybody’s

response to gluten is different, and that response can change over time

depending in part on diet, stress, and overall health. As others have

mentioned, if you were diagnosed by biopsy and/or blood tests and responded

well to the GF diet, a one-time accidental gluten challenge is not an indicator

of the reliability of your diagnosis and I would not suggest a longer gluten

challenge or retest. If there was doubt about the initial diagnosis

or if you are self-diagnosed, that is a different story with a more complicated

response (let us know if that is your situation and you need suggestions based

on that).

Pam Newbury

From:

[mailto: ] On

Behalf Of Deb Matsuoka

Sent: Tuesday, June 01, 2010 9:04 PM

Subject: [ ] Gluten Question

I have been diagnosed with Celiac and been gluten free

for the last 2 years, tonight I ate some french fries and found out after

eating them that they were seasoned with flour prior to frying. So far I

feel fine, could I have been misdiagnosed or do others not have symptoms after

having gluten by accident?

Any suggestions/ideas would be great.

June 4, 2010

I agree. If you feel better on the diet, why does it matter if you have an official diagnosis? If it's working, stick with it. If I knew then, what I knew now, I would not have put my daughter through the biopsy and repeated blood tests. I felt compelled because the doctors pushed it, and we were frightened because she was so sick. I suppose now that we know, we might be more vigilient about gluten and cross contamination. Otherwise I don't see how have the official diagnosis has made a difference. In fact I wonder if it will cause problems for her later in life as she tries to get health insurance. Hopefully by then our healthcare system will be reformed so that individuals with pre-existing conditions won't be penalized. That is my 2 cents. Sent from my iPhoneOn Jun 3, 2010, at 9:55 PM, "

Darcy" <ddarcy@...> wrote:

Itâ€™s really frustrating to hear that doctors are

recommending going gluten-free without even doing the blood test. Yet they did

the genetic test! How odd. Anyway, no, once you are on the diet, you

cannot detect celiac disease.

Based on what you say, it sounds like you may have gluten

sensitivity. The genetic test only means that itâ€™s possible for you to have

celiac, not that you do. About 35-40% of the population has one of those genes,

while only 1% have celiac. Thatâ€™s why the genetic test is not used to

diagnose celiac. A biopsy is the gold standard, which follows a positive serum

result. Both would be negative after being on a GF diet for several months or

so.

Iâ€™m sorry! But if you do feel better on a GF diet, and youâ€™re

able to maintain it, then you might as well continue it. Feeling better

is whatâ€™s important, not labeling your condition, right?

Best wishes,

From:

[mailto: ] On Behalf Of Deb Matsuoka

Sent: Thursday, June 03, 2010 7:16 PM

Subject: Re: [ ] Gluten Question

Pam,

thanks for the response.

I

have not been diagnosed with a biopsy or blood test. I went gluten free

based on a doctors recommendation, I had all the symptoms. After a few

weeks I felt great, tons of energy, no more GI issues and was starting to feel

"normal". I finally got in with my GI doc and it was too late