Confused And Fed Up

[JessieFree]

Hi am a 23 year old female. My biopsy was positive for celiac even though all my blood work was negative. I tried the diet but didn't get better. When I started eating gluten again, I didn't feel an worse, there are no certain foods that set off my symptoms. My GI says it is either celiac or IBS. My regular physician says it is not celiac because the food allergy test she gave me was also negative. I am now seeing a psychiatrist and he said the lab work clearly says I have celiac. But that is obviously not his department and he doesn't want me to see any more specialists because he is more concerned with treating me for a eating disorder (which he says is not causing my gastro problems). If I had celiac wouldn't I have felt much worse when I got off the diet? I'm so confused. I need to gain weight but don't know whether to follow a IBS diet or a gluten-free diet

[Guest j_mommy]

Sometimes people with celiac have no symptoms. Also some people take awhile to "feel better" on the diet and need to stick with it for awhile before seeing a diffrence....so maybe you went off to soon??? If your biopsies came back positive for celiac...then you have celiac. Biopsies are kind of the gold standard. Not everyone haas ppositive blood tests!

Good Luck!

[AndreaB]

If you had a positive biopsy you have celiac. There are no ifs, ands or buts with those if they are positive.

You more than likely need to replace some things in your household like plastics that have been used for cooking gluten food, scratched nonstick cookware needs to be replaced.

Check all your personal care items too.

It is also best to go dairy free for 6 months to give your villi a chance to heal. That could also be causing you problems.

In the beginning of the diet it is often easier to eat naturally gluten free.....protein foods, veggies, fruits, nuts and seeds. If you can tolerate nuts they can give you some calories you need as well.

[mftnchn]

Yes I agree with what they have said. Biopsy positive is gold standard, there is really no doubt that you have celiac barring a major problem with the person who read the biopsy. And that means that if you eat gluten, no matter how you feel, it is destroying the lining of the small intestine. That is all agreed upon by professionals.

You didn't indicate how long you were gluten free and to what degree. Although it is nice if you have an immediate response to gluten-free, many here haven't improved for months. I saw one person on the forum who didn't improve for a year, but then suddenly really improved. I actually got worse, which was pretty awful. I am now 3 months gluten-free and stabilizing.

When I got worse, most people here said to check for hidden sources of gluten. That proved true for me, too, although it wasn't the only answer. Once I stopped using all my personal products that contained gluten, I suddenly went from a good day every 3 or 4 days, to good days a week to ten days in a row.

Just a note, your gene type could have an impact too. I am homozygous DQ2 (two of the celiac genes), and in the research I found out this is associated with slower healing and more severe damage (not symptoms).