Gluten Challenge

[dfish]

Hello! I was diagnosed with celiac disease 14 months ago after blood work and have not been very good about following a gluten free diet until recently (within the last month or so). I went to see a gastro because of some other concerns (he is not who originally diagnosed me, that was a general practitioner) and he's concerned about the results of my blood tests not being conclusive for celiac, so he wants me to do a gluten challenge. My next appointment to take blood is in three weeks and to possibly schedule a biopsy at that time. My question is this. I've been eating gluten for a week now since my last doctor's appointment, and I am miserable! If I stop eating gluten again now, is two weeks from my last ingestion a short enough time that my blood work/biopsy will still show some signs of celiac, or do I need to keep eating gluten and being miserable for another two weeks? I was kind of hoping I could get away with a week's worth of gluten and then stopping, especially since I have only truly been gluten free for about a month before starting to eat gluten again.

Thanks so much for your time!!! This disease is so confusing to me and my family and friends that it's great to have a place to ask questions from people who know something about it!

D

[lovegrov]

Well, just to frustrate you some more, nobody can tell you how long to eat gluten for certain because it depends on the individual. Most experts would say that if you've been strictly gluten-free for a while you need to eat gluten for three months. Yes, three months.

The fact that you've improved on the gluten-free diet and and are feeling much sicker eating gluten is some evidence in itself. Are you satisfied you have it based on your reaction? What about the tests was "not conclusive?"

richard

[KaitiUSA]

3 months is usually how long they tell you to be on gluten to have a positive biopsy and blood results. I know people that have done it in 3 weeks but that varies from person to person and for some people that is too short of a time. Did you have positive blood tests 14 months ago? If you had the positive results then why do you need them now?

[dfish]

Richard:

I wasn't actually feeling much better off of the gluten (which is part of the reason why I went back to gastro doctor). I was still having pretty bad diarrhea and stomach pains, and began having major heartburn, which is why I went to the GI doctor (I wasn't able to sleep because of the severity of the heartburn). The tests I had done previously only came back positive for IGG, not for IGA or anti endomysial antibodies. The doctor said that there's a number of things that can cause a positive IGG and that without the positive IGA or anti endomysial antibodies, it's not a conclusive diagnosis of celiac disease. Is that true? I don't know anything about this. Some information I've read online has said that my symptoms could even be caused by endometriosis! Ack! I know that I can pinpoint the date (to the date) that my stomach problems began over a year ago and that going gluten free has not been "revolutionary", I guess, in terms of helping my symptoms and has, in fact, made some things worse (like heartburn), but now I just feel MORE miserable than I felt before since I started eating gluten last week. I have also cut out caffeine, carbonation, fried foods, red meat, and dairy this last week thinking that I could at least isolate some stuff if I started feeling better even though I was eating gluten. Still feel, no pun intended, like poop.

Is the info about the tests the doctor said true? Do I even need to bother with this challenge stuff?

[KaitiUSA]

If you were not doing good on the whole diet and still eating gluten that could be why you were not feeling better. You are not going to get better while you are still on gluten if you are in fact a celiac. It took me 3 months of being gluten free completely to feel about 85% better and longer then that to get back to normal. So it would not happen overnight. My first blood test 2 of the 3 things came back positive and the IGA negative then I got a celiac test done by a reliable celiac testing lab and that test was able to prove I had celiac.

If you have only been completely gluten-free for the past month that might not have been enough time for your body to heal. For some people it takes months and for some it doesn't take long. Also, at first when I started going gluten free there was so many things I thought were gluten free that turned out not to be so there could still be some things slipping into your diet. I hope you start to feel better

[jknnej]

I agree with Kati; if you're not 100% gluten-free it could be why you don't feel better. Honestly, once you start eliminating gluten your body gets really angry when a little slips in. I would even venture to say it makes you worse off than you were before.

I also think the first 3 months of gluten-free diet are just as miserable as being on gluten. I am at the tail end of it and starting to feel better but my body went through some serious withdrawl symptoms. They are finally starting to subside, so I say hang in there.

If you pass the three months Absolutely, for sure gluten-free, then check to see what else it could be. I put that last because most of us, by the time we realize we have celiac disease, have already had all of those other tests!!!!

[lovegrov]

I would agree that just a positive Igg isn't an absolute diagnosis (although I do know people who had a positive biopsy after just a positive Igg). Of course I don't know if you have celiac disease, but if you never really followed the diet very well, then there's absolutely no way for you to know if going gluten-free would help or not. Until you go COMPLETELY gluten-free and stay that way for an extended period (more than a month), you can't tell if the diet's helping you. If you DO have celiac disease and you're slipping or cheating frequently, you will continue to fail to improve.

richard

[Guest BellyTimber]

I would say the same as I said in my reply to one of our other correspondents under this topic area, go accompanied, I have had my nose in books on the subject continuously for years (gluten-free diet, not necessarily celiac disease), groups on the subject, kept in touch with individuals doing the same, nutritionist from the Institute of Optimum Nutrition.

To be honest yours is the exact question in my mind when I joined the bulletin board hours ago and I 'm working my way through replying as I go.

I know the answer is, they must take a hike but then I shan't have a plausible prospect of a diagnosis for my job absences. I thought we only have this problem in the UK but it seems doctors are the same the world over.

Thanks so much for daring to post, our Inner Man guides us well...

Best wishes.

Michael

[Guest BellyTimber]

Another thing - if you were diagnosed has this person any business undiagnosing you?

Come to think of it that has been done to me several times as well.

M.