Re: Continuing symptoms

[Guest guest]

Have you had bloodwork to confirm that you are in fact eating gluten-free? If

your TTG is still the same or higher than at time of diagnosis, you may still be

consuming gluten.

Or, like both of the celiacs at my house, you may have additional food

intolerances that are causing the same symptoms as gluten, without the flattened

villi. Think soy, dairy, millet for the most likely culprits.

Maureen

> From: <keith.simmons@...>

> Subject: [ ] Continuing symptoms

>

> Date: Thursday, September 11, 2008, 12:01 AM

> I was diagnosed with celiac in December of 2006. After

> almost 20 months on

> a gluten free diet, I have to admit I don't feel a

> whole lot better than I

> did before my diagnosis. I certainly haven't

> experienced the dramatic

> changes that a lot of other celiacs have described. In

> fact, I'm starting

> to suspect a mis-diagnosis. I was curious if anyone else

> has had a similar

> experience. Have any of you found cutting other foods out

> of your diet in

> addition to gluten helped bring about a dramatic change in

> how you feel?

>

> --

>

> Groovy Squared

> E-mail: keith@...

> Mobile: (650)799-2665

[Guest guest]

Hi, I really appreciate this question about continuing symptoms and diagnosis. I was diagnosed this past March and have no doubt the diagnosis was right, as it is based on both the antibodies test as well as the biopsy. (I can see questioning the diagnosis if it's just based on symptoms or bloodwork, though the numbers on my bloodwork led the doctor performing the biopsy to say, "With numbers like these, it would be almost impossible for us not to see classic celiac damage in the biopsy.")

I still have my main symptoms which led to my diagnosis - neuropathy and fatigue; which is caused by extremely low levels of B-1. I also have low D & E. I wonder if for a lot of us, our symptoms are tied to low vitamin levels, which are low from our bodies not being able to absorb vitamins due to the damage caused by the disease. It apparently can take a very long time for the body to start absorbing vitamins and storing them properly again after going gf.

Also, not eating whole grain fiber can have a deleterious effect on our gi tract, and it can be hard to get enough fiber once you've gotten rid of whole wheat products.

I appreciate the other comments too, about other foods that cause problems. Especially if there are digestive issues (which I have fortunately never had -- and never will, knock on wood!), I would think other food sensitivities could be causing symptoms similar to c.d.

Good luck! **************Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014)

[Guest guest]

Some people with CD, particularly older people, never heal. However, removing gluten from the diet prevents further damage.

You can develop other food-related problems at any point in life. For example, lactose and/or casein intolerance can show up quite suddenly and hit hard, after decades of using dairy products liberally with no problem. (Fortunately, this can be temporary, going away after a period of avoidance.)

H.**************Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014)

[Guest guest]

Hi ,

I can identify. I was diagnosed in Feb. 2005 at age 36 and my health has been rocky much of the time. In my case, I have no doubt that I have celiac disease, given the thorough testing I had and the severe reaction I've had since my diagnosis when I've accidentally ingested gluten. Especially in the early days after my diagnosis, I was making some mistakes.

I have had the blood antibodies tested several times when I was feeling particularly horrible, but they have always been negative. Apparently the blood test is not a sensitive enough test to measure gluten exposure at lower levels. So, you could have had gluten exposure that has made you sick, but it might not show up on the test.

Because of this problem, my GI doc said I should get another endoscopy to see whether there's still damage in the small intestine. If there is, I imagine he'll say that my problem is that even trace amounts of gluten are causing my problems (I follow a very strict diet). If there's no damage, then I imagine he'll say that I could have something wrong in addition to Celiac Disease.

I think it's not uncommon for many Celiacs to continue to feel sick in one way or another for a long time, especially if the person is diagnosed as an adult.

I'm feeling better at the moment but a month or so ago, when the doctor ordered the endoscopy (which I'll get later this month), I was feeling terrible. For weeks. I think it could have been gluten exposure, because I had taken some loose Chinese herbs and then some Chinese capsules from an acupuncturist. The first symptom was a very sour, nervous stomach, and then extreme weakness and fatigue, followed by weight loss. I later read that some herbs are soaked in barley wine. I was assured these were gluten free, but the body knows best, I think.

Anyway, I just wanted to share my experience because there was a time when I was doubting my diagnosis, like you are. I hope you have a good GI doc who will help you figure out your problem.

take care,

L²

[Guest guest]

--

p.s. I do also avoid other foods: dairy, peanuts, carnageenan, certain beans and vegetables that cause gas, soy, and acidic, citrus and/or spicy foods sometimes. But this has more to do, for me, with aiding my digestion and trying to manage my IBS (a functional problem of the large bowel). I don't have a Celiac Disease-like reaction to these foods. I also got the traditional food allergy testing a couple years ago and no allergy registered, but if I feel that I have trouble digesting something I'll avoid it. Dairy is my biggest problem in this group. L²

[Guest guest]

Remember to check for gluten in vitamins, medications, even grooming products that might find their way onto lips.

H.

In a message dated 9/11/08 11:48:48 AM, keith.simmons@... writes:

there's always a chance some gluten is sneaking in via cross contamination

**************Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014)

[Guest guest]

Re coffee: I think a lot of us buy into the idea that something that tastes so good must be bad.

Coffee doesn't affect my stomach (nor does it keep me awake at night.) I try to drink more coffee, not less.

But, some people's stomachs are better off if they avoid coffee. We're all different, to a degree; we each must pay attention to our bodies and make our decisions.

H.

In a message dated 9/11/08 12:39:44 PM, bronwyn@... writes:

for what it's worth, , my doctor told me that Coffee doesn't usually matter for celiac or crohn's or colitis.  I drink it every day and strong.

**************Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014)

[Guest guest]

Hi –

You might not see any damage with your

second edoscopy. I had my second endoscopy 2 years after I was diagnosed

b/c I still was feeling ill and no signs of damaged showed up in the

biopsy. Then my doc suggested the camera endoscopy (where you swallow a

camera and it takes pictures and transmits them to a giant device you wear for

the day), and that showed that I still had damage further down the small

intestinal tract, where I hadn’t healed yet and that was what was causing

the distress. Hidden gluten was still getting into my diet which wasn’t

allowing me to heal back then…I hadn’t had the diet dialed or cross

contamination figured out. Just something to note.

-

From: [mailto: ] On Behalf Of Linden

Sent: Thursday, September 11, 2008

8:02 AM

Subject: [ ] Re:

Continuing symptoms

Because of this problem, my GI doc said I should get

another endoscopy to see whether there's still damage in the small intestine.

If there is, I imagine he'll say that my problem is that even trace

amounts of gluten are causing my problems (I follow a very strict diet). If

there's no damage, then I imagine he'll say that I could have something wrong

in addition to Celiac Disease.

I think it's not uncommon for many Celiacs to

continue to feel sick in one way or another for a long time, especially if

the person is diagnosed as an adult.

I'm feeling better at the moment but a month or so

ago, when the doctor ordered the endoscopy (which I'll get later

this month), I was feeling terrible.

[Guest guest]

–

I probably took me 3 years to feel like I figured

it out. This month marks my 4th year of being diagnosed a

Celiac. Over those first 3 years it was a lot of trial and error! I

went through phases of cutting out dairy then bringing it back, not eating

shellfish or nuts, then bringing them back, I even went vegan for a year b/c I

wanted to start with the basics. I am now peanut free, soy free, corn

free (and of course wheat/gluten free.) I don’t eat meat or chicken

or shellfish. I do eat eggs and fish. And as for nuts, I can only

tolerate almonds and walnuts. Regarding dairy I eat lactose free or a lot

of yogurt products and do well with most cheese. I don’t touch milk

as a drink or in cereal and don’t go near ice cream, but I can tolerate a

little half-n-half in coffee or frozen yogurt. I even figured out that

blue dye in foods irritated me. It sounds overwhelming, but I just would

take note when I would feel the worst and played around until I found something

that worked. I finally feel good, I avoid processed foods as much as

possible and eat organic, it works for me. I’m sure each of us has regimens

that taper to our own needs.

I think the thing that helped me the most

was understanding CC. I have my own set of pots and pans (the household I

live in is not GF, im the only one) and I constantly wipe down counters at

home, work or a friends house. I don’t frequent many restaurants (I

also got the sickest after a bite out to eat.)

I hope you feel better or figure out what

is making you feel ill!

-

From: [mailto: ] On Behalf Of

Sent: Thursday, September 11, 2008

12:02 AM

Subject: [ ]

Continuing symptoms

I was diagnosed with celiac in December of 2006. After almost 20

months on a gluten free diet, I have to admit I don't feel a whole lot better

than I did before my diagnosis. I certainly haven't experienced the

dramatic changes that a lot of other celiacs have described. In fact, I'm

starting to suspect a mis-diagnosis. I was curious if anyone else has had

a similar experience. Have any of you found cutting other foods out of

your diet in addition to gluten helped bring about a dramatic change in how you

feel?

--

Groovy Squared

E-mail: keithgroovysquared

Mobile:

(650)799-2665

[Guest guest]

Thanks for all the helpful responses. I think I'm following a pretty strict diet. I almost always cook at home, so I can monitor the ingredients in my food pretty closely, but there's always a chance some gluten is sneaking in via cross contamination. Part of my problem is that I don't have a strong gluten reaction that I can use to determine if I've been exposed. I feel bloated, but these days I seem to feel bloated almost every day, regardless of my diet.

I'm going to be playing around with my diet over the next month or so and hopefully I can pin point what else could be causing the problem. I've cut out diary, so hopefully that will help. I'm also trying to ditch coffee, which is one of my favorite things in the world, but isn't worth a constant upset stomach. Finally, I have an appointment with Dr Grey at Stanford at the end of the month, so he may have some helpful suggestions.

Thanks again for the advice,On Thu, Sep 11, 2008 at 9:54 AM, Wallace <AWallace@...> wrote:

–

I probably took me 3 years to feel like I figured

it out. This month marks my 4th year of being diagnosed a

Celiac. Over those first 3 years it was a lot of trial and error! I

went through phases of cutting out dairy then bringing it back, not eating

shellfish or nuts, then bringing them back, I even went vegan for a year b/c I

wanted to start with the basics. I am now peanut free, soy free, corn

free (and of course wheat/gluten free.) I don't eat meat or chicken

or shellfish. I do eat eggs and fish. And as for nuts, I can only

tolerate almonds and walnuts. Regarding dairy I eat lactose free or a lot

of yogurt products and do well with most cheese. I don't touch milk

as a drink or in cereal and don't go near ice cream, but I can tolerate a

little half-n-half in coffee or frozen yogurt. I even figured out that

blue dye in foods irritated me. It sounds overwhelming, but I just would

take note when I would feel the worst and played around until I found something

that worked. I finally feel good, I avoid processed foods as much as

possible and eat organic, it works for me. I'm sure each of us has regimens

that taper to our own needs.

I think the thing that helped me the most

was understanding CC. I have my own set of pots and pans (the household I

live in is not GF, im the only one) and I constantly wipe down counters at

home, work or a friends house. I don't frequent many restaurants (I

also got the sickest after a bite out to eat.)

I hope you feel better or figure out what

is making you feel ill!

-

From: [mailto: ] On Behalf Of

Sent: Thursday, September 11, 2008

12:02 AM

Subject: [ ]

Continuing symptoms

I was diagnosed with celiac in December of 2006. After almost 20

months on a gluten free diet, I have to admit I don't feel a whole lot better

than I did before my diagnosis. I certainly haven't experienced the

dramatic changes that a lot of other celiacs have described. In fact, I'm

starting to suspect a mis-diagnosis. I was curious if anyone else has had

a similar experience. Have any of you found cutting other foods out of

your diet in addition to gluten helped bring about a dramatic change in how you

feel?

--

Groovy Squared

E-mail: keith@...

Mobile:

(650)799-2665

-- Groovy SquaredE-mail: keith@...Mobile: (650)799-2665

[Guest guest]

for what it's worth, , my doctor told me that Coffee doesn't usually matter for celiac or crohn's or colitis. I drink it every day and strong.

From: [mailto: ] On Behalf Of Sent: Thursday, September 11, 2008 11:48 AM Subject: Re: [ ] Continuing symptoms

Thanks for all the helpful responses. I think I'm following a pretty strict diet. I almost always cook at home, so I can monitor the ingredients in my food pretty closely, but there's always a chance some gluten is sneaking in via cross contamination. Part of my problem is that I don't have a strong gluten reaction that I can use to determine if I've been exposed. I feel bloated, but these days I seem to feel bloated almost every day, regardless of my diet.I'm going to be playing around with my diet over the next month or so and hopefully I can pin point what else could be causing the problem. I've cut out diary, so hopefully that will help. I'm also trying to ditch coffee, which is one of my favorite things in the world, but isn't worth a constant upset stomach. Finally, I have an appointment with Dr Grey at Stanford at the end of the month, so he may have some helpful suggestions.Thanks again for the advice,

On Thu, Sep 11, 2008 at 9:54 AM, Wallace <AWallace@...> wrote:

–

I probably took me 3 years to feel like I figured it out. This month marks my 4th year of being diagnosed a Celiac. Over those first 3 years it was a lot of trial and error! I went through phases of cutting out dairy then bringing it back, not eating shellfish or nuts, then bringing them back, I even went vegan for a year b/c I wanted to start with the basics. I am now peanut free, soy free, corn free (and of course wheat/gluten free.) I don't eat meat or chicken or shellfish. I do eat eggs and fish. And as for nuts, I can only tolerate almonds and walnuts. Regarding dairy I eat lactose free or a lot of yogurt products and do well with most cheese. I don't touch milk as a drink or in cereal and don't go near ice cream, but I can tolerate a little half-n-half in coffee or frozen yogurt. I even figured out that blue dye in foods irritated me. It sounds overwhelming, but I just would take note when I would feel the worst and played around until I found something that worked. I finally feel good, I avoid processed foods as much as possible and eat organic, it works for me. I'm sure each of us has regimens that taper to our own needs.

I think the thing that helped me the most was understanding CC. I have my own set of pots and pans (the household I live in is not GF, im the only one) and I constantly wipe down counters at home, work or a friends house. I don't frequent many restaurants (I also got the sickest after a bite out to eat.)

I hope you feel better or figure out what is making you feel ill!

-

From: [mailto: ] On Behalf Of Sent: Thursday, September 11, 2008 12:02 AM Subject: [ ] Continuing symptoms

I was diagnosed with celiac in December of 2006. After almost 20 months on a gluten free diet, I have to admit I don't feel a whole lot better than I did before my diagnosis. I certainly haven't experienced the dramatic changes that a lot of other celiacs have described. In fact, I'm starting to suspect a mis-diagnosis. I was curious if anyone else has had a similar experience. Have any of you found cutting other foods out of your diet in addition to gluten helped bring about a dramatic change in how you feel?-- Groovy SquaredE-mail: keith@...Mobile: (650)799-2665

-- Groovy SquaredE-mail: keith@...Mobile: (650)799-2665

[Guest guest]

Hair products are a nuisance for me - I put my hands in my hair or my children do and then it gets into my mouth.....I can taste it. I am wondering whether gluten is giving me a "metallic" taste and if that could be an early warning that I have ingested a tiny amount. Anyone else experience anything similar?

From: [mailto: ] On Behalf Of flatcat9@...Sent: Thursday, September 11, 2008 12:39 PM Subject: Re: [ ] Continuing symptoms

Remember to check for gluten in vitamins, medications, even grooming products that might find their way onto lips.H.In a message dated 9/11/08 11:48:48 AM, keith.simmons@... writes:

there's always a chance some gluten is sneaking in via cross contamination**************Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com.(http://www.stylelist.com/trends?ncid=aolsty00050000000014)

[Guest guest]

I quit drinking coffee a couple of years ago on my doctor's recommendation. The way he put it, is it's not so much the caffeine that's the problem, but the acidity in coffee. His take was the acidity in tea is different and doesn't tend to aggravate the stomach/intestinal tract as much. I definitely noticed a difference when I switched to tea. Occasionally I will have a cup of coffee and it always causes more discomfort than I'm now used to. But i do love the smell...

–

I probably took me 3 years to feel like I figured it out. This month marks my 4th year of being diagnosed a Celiac. Over those first 3 years it was a lot of trial and error! I went through phases of cutting out dairy then bringing it back, not eating shellfish or nuts, then bringing them back, I even went vegan for a year b/c I wanted to start with the basics. I am now peanut free, soy free, corn free (and of course wheat/gluten free.) I don't eat meat or chicken or shellfish. I do eat eggs and fish. And as for nuts, I can only tolerate almonds and walnuts. Regarding dairy I eat lactose free or a lot of yogurt products and do well with most cheese. I don't touch milk as a drink or in cereal and don't go near ice cream, but I can tolerate a little half-n-half in coffee or frozen

yogurt. I even figured out that blue dye in foods irritated me. It sounds overwhelming, but I just would take note when I would feel the worst and played around until I found something that worked. I finally feel good, I avoid processed foods as much as possible and eat organic, it works for me. I'm sure each of us has regimens that taper to our own needs.

I think the thing that helped me the most was understanding CC. I have my own set of pots and pans (the household I live in is not GF, im the only one) and I constantly wipe down counters at home, work or a friends house. I don't frequent many restaurants (I also got the sickest after a bite out to eat.)

I hope you feel better or figure out what is making you feel ill!

-

From: [mailto: ] On Behalf Of Sent: Thursday, September 11, 2008 12:02 AM Subject: [ ] Continuing symptoms

I was diagnosed with celiac in December of 2006. After almost 20 months on a gluten free diet, I have to admit I don't feel a whole lot better than I did before my diagnosis. I certainly haven't experienced the dramatic changes that a lot of other celiacs have described. In fact, I'm starting to suspect a mis-diagnosis. I was curious if anyone else has had a similar experience. Have any of you found cutting other foods out of your diet in addition to gluten helped bring about a dramatic change in how you feel?-- Groovy SquaredE-mail: keith@groovysquared .comMobile: (650)799-2665

-- Groovy SquaredE-mail: keith@groovysquared .comMobile: (650)799-2665

[Guest guest]

Yes. Last time I got glutened by

potato salad I swore I could

taste it…

From: [mailto: ] On Behalf Of Bronwyn Syiek

Sent: Thursday, September 11, 2008

12:47 PM

Subject: RE: [ ]

Continuing symptoms

Hair products are a nuisance for me -

I put my hands in my hair or my children do and then it gets into my

mouth.....I can taste it. I am wondering whether gluten is giving me a

" metallic " taste and if that could be an early warning that I have

ingested a tiny amount. Anyone else experience anything similar?

From: [mailto: ] On Behalf Of flatcat9aol

Sent: Thursday, September 11, 2008

12:39 PM

Subject: Re: [ ]

Continuing symptoms

Remember to check for

gluten in vitamins, medications, even grooming products that might find their

way onto lips.

H.

In a message dated 9/11/08 11:48:48 AM, keith.simmonsgmail writes:

there's always a chance

some gluten is sneaking in via cross contamination

**************

Psssst...Have you heard the news? There's a new fashion blog, plus the latest

fall trends and hair styles at StyleList.com.

(http://www.stylelist.com/trends?ncid=aolsty00050000000014)

[Guest guest]

,I'd like to jump in and say I am also in the same boat. I was diagnosed in June of 2007. I noticed vast improvements in the beginning, however have lately been finding problems with fatigue, neuropathy and also the ever-so-lovely diarrhea. I just collapsed the other day at the Ophthalmologist's office, which thankfully, sent me to Muir in Walnut Creek. The collapse wasn't so much the issue, it was the paralysis in my right side that was cause for concern. After they did some testing of my brain and chest, they determined the issue was caused from malabsortion.

Turns out, in the year of following the gluten-free diet I had never received guidelines of how to eat properly and what I needed in order to build up my intestines. Evidently, the magical solution was Protein. Plus, I was also definicient in a few key vitamins.. D, B12, Folic Acid and Iron.. So now I am finally on supplements and following a fairly strict 85 grams of protein per day diet. Originally I was told that I needed to eat 3000 calories a day....... That's all I was told. I never knew if it was 3000 calories of this or that.. Finally, I have clarification.

I say all this, just in case you have yet to find the right combination of foods and perhaps your body (like mine) needs a little boost. The Nutritionist name, just in case you were interested in speaking with her, is Deanne Sabatte. Her phone number is 925-947-5314. She listens and she also has the gift of pinpointing what exactly is causing extra strain on your small intestine and what exactly will build up your small intestine.

I wish you the best of luck. I'm also a weight loss statistic. In the hospital on Tuesday, I weighed a wopping 93 pounds (at age 25). Not by choice, btw. Once upon a time I was 120.. Here's praying the protein does the trick

Good luck!Crystal On Thu, Sep 11, 2008 at 8:01 AM, Linden <redchickn@...> wrote:

Hi ,

I can identify. I was diagnosed in Feb. 2005 at age 36 and my health has been rocky much of the time. In my case, I have no doubt that I have celiac disease, given the thorough testing I had and the severe reaction I've had since my diagnosis when I've accidentally ingested gluten. Especially in the early days after my diagnosis, I was making some mistakes.

I have had the blood antibodies tested several times when I was feeling particularly horrible, but they have always been negative. Apparently the blood test is not a sensitive enough test to measure gluten exposure at lower levels. So, you could have had gluten exposure that has made you sick, but it might not show up on the test.

Because of this problem, my GI doc said I should get another endoscopy to see whether there's still damage in the small intestine. If there is, I imagine he'll say that my problem is that even trace amounts of gluten are causing my problems (I follow a very strict diet). If there's no damage, then I imagine he'll say that I could have something wrong in addition to Celiac Disease.

I think it's not uncommon for many Celiacs to continue to feel sick in one way or another for a long time, especially if the person is diagnosed as an adult.

I'm feeling better at the moment but a month or so ago, when the doctor ordered the endoscopy (which I'll get later this month), I was feeling terrible. For weeks. I think it could have been gluten exposure, because I had taken some loose Chinese herbs and then some Chinese capsules from an acupuncturist. The first symptom was a very sour, nervous stomach, and then extreme weakness and fatigue, followed by weight loss. I later read that some herbs are soaked in barley wine. I was assured these were gluten free, but the body knows best, I think.

Anyway, I just wanted to share my experience because there was a time when I was doubting my diagnosis, like you are. I hope you have a good GI doc who will help you figure out your problem.

take care,

L²

[Guest guest]

Have you replace all your kitchen

utensils, such as cutting boards, non-stick pans, wooden spoons, and toaster?

What about soy sauce? Do you still use

soy sauce with wheat in it?

Are you consuming spelt? Oats?

RiceDream?

Do you live alone? Often other people can

be the source of your pain. There was a week there where I felt AWFUL, then

found out my husband had been making wheat bread sandwiches on the cutting

board and small crumbs were getting into the vegetables I was chopping. (That

was before I convinced my hubby to make the whole house GF, which, by the way

is THE way to go).

From: [mailto: ] On Behalf Of

Sent: Thursday, September 11, 2008

11:48 AM

Subject: Re: [ ]

Continuing symptoms

Thanks for all the

helpful responses. I think I'm following a pretty strict diet. I

almost always cook at home, so I can monitor the ingredients in my food pretty

closely, but there's always a chance some gluten is sneaking in via cross

contamination. Part of my problem is that I don't have a strong gluten

reaction that I can use to determine if I've been exposed. I feel

bloated, but these days I seem to feel bloated almost every day, regardless of

my diet.

I'm going to be playing around with my diet over the next month or so and

hopefully I can pin point what else could be causing the problem. I've

cut out diary, so hopefully that will help. I'm also trying to ditch

coffee, which is one of my favorite things in the world, but isn't worth a

constant upset stomach. Finally, I have an appointment with Dr Grey

at Stanford at the end of the month, so he may have some helpful suggestions.

Thanks again for the advice,

On Thu, Sep 11, 2008 at 9:54 AM, Wallace <AWallaceeastonbellsports>

wrote:

–

I probably took me 3

years to feel like I figured it out. This month marks my 4th

year of being diagnosed a Celiac. Over those first 3 years it was a lot

of trial and error! I went through phases of cutting out dairy then

bringing it back, not eating shellfish or nuts, then bringing them back, I even

went vegan for a year b/c I wanted to start with the basics. I am now

peanut free, soy free, corn free (and of course wheat/gluten free.) I

don't eat meat or chicken or shellfish. I do eat eggs and fish. And

as for nuts, I can only tolerate almonds and walnuts. Regarding dairy I

eat lactose free or a lot of yogurt products and do well with most

cheese. I don't touch milk as a drink or in cereal and don't go near ice

cream, but I can tolerate a little half-n-half in coffee or frozen

yogurt. I even figured out that blue dye in foods irritated me. It

sounds overwhelming, but I just would take note when I would feel the worst and

played around until I found something that worked. I finally feel good, I

avoid processed foods as much as possible and eat organic, it works for

me. I'm sure each of us has regimens that taper to our own needs.

I think the thing that helped

me the most was understanding CC. I have my own set of pots and pans (the

household I live in is not GF, im the only one) and I constantly wipe down

counters at home, work or a friends house. I don't frequent many

restaurants (I also got the sickest after a bite out to eat.)

I hope you feel better or

figure out what is making you feel ill!

-

From:

[mailto: ]

On Behalf Of

Sent: Thursday, September 11, 2008

12:02 AM

Subject: [ ]

Continuing symptoms

I was diagnosed with celiac in December of 2006.

After almost 20 months on a gluten free diet, I have to admit I don't feel a

whole lot better than I did before my diagnosis. I certainly haven't

experienced the dramatic changes that a lot of other celiacs have

described. In fact, I'm starting to suspect a mis-diagnosis. I was

curious if anyone else has had a similar experience. Have any of you

found cutting other foods out of your diet in addition to gluten helped bring

about a dramatic change in how you feel?

--

Groovy Squared

E-mail: keithgroovysquared

Mobile:

(650)799-2665

--

Groovy Squared

E-mail: keithgroovysquared

Mobile:

(650)799-2665

[Guest guest]

Crystal,

Wow, I'm sorry you have been so sick. I never dropped that much weight. It does sound like you have been getting some inadvertant gluten exposure if your weight has dropped so much. I'm glad that you're seeing a nutritionist who knows what they're talking about -- I was sent to someone in the past who didn't know the disease and so the consultation was basically useless. I might contact her, although I don't have problems with being anemic (as far as the tests go anyway) and I've been able to gain weight. I was tested once for vitamin D and the level was basically zero, but after taking supplements it quickly went up.

Something that has worked for me that I think could benefit you in helping digestion and healing the intestine is a very powerful probiotic. It's called VSL#3. Weird name, I know. This one is often recommended by GI docs. It's sold at www.vsl3.com But it's also sold at Elephant Pharmacy in Berkeley and maybe a few other places. It's expensive, but I find that it boosts my immune system (although I can't be totally sure) and helps overall with digestion. Someone mentioned on this list that there is early research showing that this probiotic may break down gluten in the gut, so it could also be helping with low-level gluten exposure. I just know that it has helped me. Whenever I get into a phase of fatigue, etc., that goes on for weeks, I get some and I start to feel better. I've decided to now take it all the time.

I hope that you are starting to feel stronger. Take care of yourself!

L²