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How Long Could It Take To See A Reaction?

livingchronically

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livingchronically Newbie
livingchronically
Posted

I'm completely new here. My daughter was diagnosed with Celiac last year from a biopsy. There are questions from the doctor as to whether or not this diagnosis was correct. So, my daughter was told to begin eating gluten again to see what happens. If there is no reaction, they will retest again in one month.

Here's my question: I know that you can feel the effects of gluten almost immediately, but how long CAN it take? Google is no help here. My daughter had half a bagel yesterday and the other half today along with two small pieces of pizza for lunch. We've seen no side effects up to this point. I'm wondering if there can be a delay in seeing the symptoms?

If you could fill me in, I would greatly appreciate it. Thanks!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Gluten reactions can be delayed. For some it takes 3 to 7 days for a reaction and in addition there are celiacs that are asymptomatic. Why is this doctor questioning the biopsy? Is he a new doctor? Is she still having issues? How has she done on the diet? Did issues she had resolve at all? If she has been off gluten she needs to be back on it for about 3 months for any chance of testing to come back positive. False negatives abound but false positives are really rare. Has this doctor said what benefit there is to making her sick again? I would understand the doctor wanting to test if she hadn't had the biopsy but why is he questioning what is considered the 'gold standard'?

rinne Apprentice
rinne
Posted

:o

I agree with the above poster, why is the doctor questioning the results of the biopsy?

I have had problems with wheat for over thirty years, in my younger years if I didn't eat wheat for a while I could eat it without any apparent problems for a brief time and then the problems would return. I wonder if this is the case for your daughter?

The reality is the biopsy looks for damage, from the past biopsy you were told she had damage, damage heals, now they are asking for her to damage herself again so they can look again!

livingchronically Newbie
livingchronically
Posted
  • Author

Thanks for your reply and the great questions. This is our second doctor because we moved to another state. I think initially her symptoms were not as typical. She received the news (she was 15 at the time) about an upcoming move (stress trigger) and that week developed a fever, stomach cramps and vomiting 2-3 times daily. The other symptoms went away but the stomach grumbling and vomiting continued non-stop, usually happening at night. We went through all of the non-invasive testing and the ped. GI never considered celiac. After a couple of months we did the endoscopy and the pathology report came back consistant for celiac. They immediately put her on the gluten free diet and it took 3-5 months for the daily vomiting to end.

The first thing everyone considered was that it was stress and her body was reacting. I also know that stress can trigger celiac disease.

Here's another clincher, she tried Chick-fil-A chicken nuggets this past October and had absolutely no reaction. She remained gluten-free except for having the chicken nuggets maybe twice a month or so with no side effects. We just couldn't understand why she could eat something that clearly contains gluten without a reaction. The only time she has possibly been "glutened" (other than the chicken nuggets) was about a month ago and it would have had to be cross contamination. I bought a store-brand plain basmati rice and she got stomach cramps both times I prepared that brand of rice. That was her only symptom. She's not vomited since last year when we originally went gluten-free.

The doctor advised that if she does get sick, she should just quit eating the gluten and give him a call. He didn't encourage her to continue eating if she got sick. He did say that he felt that from the biopsy, it was celiac. But with a life-long diagnosis, it wouldn't hurt to be 100% sure since there were questions.

I appreciate any and all advise/opinions I can get. Thanks!

Gluten reactions can be delayed. For some it takes 3 to 7 days for a reaction and in addition there are celiacs that are asymptomatic. Why is this doctor questioning the biopsy? Is he a new doctor? Is she still having issues? How has she done on the diet? Did issues she had resolve at all? If she has been off gluten she needs to be back on it for about 3 months for any chance of testing to come back positive. False negatives abound but false positives are really rare. Has this doctor said what benefit there is to making her sick again? I would understand the doctor wanting to test if she hadn't had the biopsy but why is he questioning what is considered the 'gold standard'?
livingchronically Newbie
livingchronically
Posted
  • Author

I forgot to add that the likelihood of this being in her system is pretty good because she was diagnosed with CFIDS/ME in 2006 and Neurally Mediated Hypotension this year - all in the autoimmune category.

Thanks for your reply and the great questions. This is our second doctor because we moved to another state. I think initially her symptoms were not as typical. She received the news (she was 15 at the time) about an upcoming move (stress trigger) and that week developed a fever, stomach cramps and vomiting 2-3 times daily. The other symptoms went away but the stomach grumbling and vomiting continued non-stop, usually happening at night. We went through all of the non-invasive testing and the ped. GI never considered celiac. After a couple of months we did the endoscopy and the pathology report came back consistant for celiac. They immediately put her on the gluten free diet and it took 3-5 months for the daily vomiting to end.

The first thing everyone considered was that it was stress and her body was reacting. I also know that stress can trigger celiac disease.

Here's another clincher, she tried Chick-fil-A chicken nuggets this past October and had absolutely no reaction. She remained gluten-free except for having the chicken nuggets maybe twice a month or so with no side effects. We just couldn't understand why she could eat something that clearly contains gluten without a reaction. The only time she has possibly been "glutened" (other than the chicken nuggets) was about a month ago and it would have had to be cross contamination. I bought a store-brand plain basmati rice and she got stomach cramps both times I prepared that brand of rice. That was her only symptom. She's not vomited since last year when we originally went gluten-free.

The doctor advised that if she does get sick, she should just quit eating the gluten and give him a call. He didn't encourage her to continue eating if she got sick. He did say that he felt that from the biopsy, it was celiac. But with a life-long diagnosis, it wouldn't hurt to be 100% sure since there were questions.

I appreciate any and all advise/opinions I can get. Thanks!

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