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Gluten=bad

What Is Going On?

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This may be a long post, but I'm very frustrated and need some advice so here goes. In February of this year, I went to my doctor for a yearly physical. I had had routine blood work done a week prior and all was normal with the exception of low sodium. She asked me if I took any diuretics-I do not and she asked me had I been having diarrhea-yes on a daily basis. We then proceeded to talk about my struggle with fertility problems when she mentioned that I might have Celiac disease. She ordered some blood work-which I had done that day-and sent me on my way. It took a while for the results to come back, but once they did I was told that the factors did indeed indicate that I had Celiac disease. At this time I did not have an actual copy of the results in hand. Since that time I have pretty much stuck to a gluten-free diet even though I will admit to cheating a few times however, I have not cheated one bit in the last month. I'm also very careful to wash my hands after preparing gluten containing foods for the rest of my family. I should mention that I have a very itchy rash on my back (which the doctor noticed before testing) and at the beginning of going gluten free, it started to get better. However, it has now spread and has more flare ups. I've also started having diarrhea again and have this general feeling of overall fatigue all the time. I feel horrible and decided to make an appointment with an allergist to see if there was something else causing the problem. I called my primary doctor and asked for a copy of my lab results for the Celiac disease just to have for my records and also to take with me to the allergist. Imagine my surprise when I opened them up today and they are normal except for one value!!!!!!

Here are the results:

Tissue Transglutaminase Ab, IgA <3---------------------------------------Ref. range <5

Gliadin Peptide Ab, IgA 11----------------------------------------------------Ref. range <11 (this was the only one marked high)

Gliadin Peptide Ab, IgA 3-----------------------------------------------------Ref. range <11

Reticulin Antibody, IgA <1:10------------------------------------------------Ref. range <1:10

So what is going on? I would hardly call an 11 on a range that's supposed to be less than 11 high! I don't understand. Do you think she is just putting together the rash, diarrhea, and this one result to say that more than likely I have it! I have completely changed my eating habits and spent tons of money trying out gluten-free products only to feel a little better. My husband thinks that maybe I'm getting glutened and don't know it. I do know that if I intentionally eat gluten I get diarrhea, the rash flares up, and I am almost immediately tired. So wheat/gluten must be a factor for something I'm allergic too. I just don't know what to do and if I don't have to eat gluten-free then why should I? Any advice would be appreciated.

Thanks


Stepmomof 2

Married for 5 years

Dx with PCOS February '07

Dx with Celicac disease February '08

Gluten-free since 02-24-08

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I have no answers for you but felt that you needed someone to reach out. My husband has celiac (never uses computer) and I don't ...

I am wondering if you have a false negative to gluten and/or a wheat or other major food allergy (like soy allergy) as food allergies give the same "gut" reaction.

The negative test results doesn't mean that you aren't sensitive to gluten, just that it could be that either your body doesn't have "anti-bodies" at detectable levels and/or it's a false negative. So it would be premature to throw away your expensive gluten free food. Also, it took my husband a good 4-6 months on gluten-free diet to see impressive results; 1 month to see some change, but for a while there he still had loose bowel and gas for a while. He never cheated on this diet (knowingly that is).

My advice is to stay on the gluten free diet --- do not cheat ---- and see how you feel in 3 months. And go to the allergist with regard to a possible food allergy as well. For example, my husband not only has guten intolerance but wheat allergy and soy allergy. I am allergic to flavored tea - I get terrible stomach aches, stomach cramps and diarrhea when I drink it (Celestrial Seasons brand too).


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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You mentioned that you are preparing gluten-containing foods for the rest of the family. You are probably getting glutened from that. Do you use separate cooking and preparing utensils? Have you baked anything gluteny?

From the Celiac.org Quick Start Diet Guide

Contamination in Food Preparation

When preparing gluten-free foods they must not come in contact with food containing gluten. Contamination can occur if foods are prepared on common surfaces, or with utensils that are not thoroughly cleaned after preparing gluten-containing foods. Using a common toaster for gluten-free bread and regular bread is a major source of contamination. Flour sifters should not be shared with gluten-containing flours. Deep fried foods cooked in oil shared with breaded products should not be consumed. Spreadable condiments in shared containers may also be a source of contamination. When a person dips into a condiment a second time, with the knife (used for spreading), the condiment becomes contaminated with crumbs (e.g. mustard, mayonnaise, jam, peanut butter and margarine).

Wheat flour can stay airborne for many hours in a bakery (or at home) and contaminate exposed preparation surfaces and utensils or uncovered gluten-free products. Likewise, foods not produced in a gluten-free environment have the potential to be contaminated with gluten. This may occur when machinery or equipment is inadequately cleaned after producing gluten-containing foods.

Did your doctor biopsy the rash? A DH diagnosis is definitive for Celiac, even without your other symptoms. It sounds to me, as your husband suggested, like you are still getting gluten from somewhere and that may be why things have not cleared up as much or as quickly as you want them to.


Sandi ~ learning to live in a world obsessed and infested with wheat.

"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .

"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)

The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

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Thank you very much for the replies; I was afraid no was was going to. I'm just kind of at a loss right now for what to think about all of this and mainly I just want to feel better and not worse! I am planning to stick to the gluten-free diet because I have noticed a difference in the way I feel, but I guess I'll just have to give it some time in order to feel completely better. I agree that it may well be cross-contamination that is causing the return of symptoms or it may indeed be another food allergy. I'm going to schedule to see an allergist and a dermatologist in the near future. Thanks again for the replies, it's nice to not feel so alone in all of this.


Stepmomof 2

Married for 5 years

Dx with PCOS February '07

Dx with Celicac disease February '08

Gluten-free since 02-24-08

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