Help, Neg Tests, Still Feel Sick

[Jenny03]

Last week I had a biopsy and endoscope. The GI doc said (or at least his nurse told me) that he believes I'm negative for Celiac's. This is fine, great even. BUT I am still feeling sick. My (sorry for the TMI) symptoms are chronic D, bleeding and stomach cramps. Also my grandmother is a Celiac. The nurse told me to quit drinking caffeine. I am very leery that this is my problem. I mean, how can caffeine cause my symptoms? Can someone tell me what to do at this point? Should I call the GI doc and ask them to send me my results on paper. Could this be something else or is it possible to have a false negative?

Thanks for any help!

Jenny

[Lisa]

Last week I had a biopsy and endoscope. The GI doc said (or at least his nurse told me) that he believes I'm negative for Celiac's. This is fine, great even. BUT I am still feeling sick. My (sorry for the TMI) symptoms are chronic D, bleeding and stomach cramps. Also my grandmother is a Celiac. The nurse told me to quit drinking caffeine. I am very leery that this is my problem. I mean, how can caffeine cause my symptoms? Can someone tell me what to do at this point? Should I call the GI doc and ask them to send me my results on paper. Could this be something else or is it possible to have a false negative?

Thanks for any help!

Jenny

Hi Jenny and Welcome!

I am a person with Celiac Disease, but not a Celiac.

Biopsies can be very hit and miss and there are many, many false negatives. If your biopsy is negative, but you have a genetic history, I would go on the diet for a few months and my bet is that you will see great improvement in your health. Or, you could pursue genetic testing.

I would continue with medical testing because rectal bleeding could be of some concern.

Caffeine can be a strong irritant to the gut and it wouldn't hurt to go easy until you are feeling better.

[dbmamaz]

Yes, now that you've had all the tests, you are free to experiment yourself. Many people are negative on tests but still feel loads better not eating gluten. You dont need your doctor's permission to avoid gluten! Try to keep it simple at first - eat a lot of roast meat w potatoes, or simple veggies with rice (be careful w stir fries as most soy sauce and other asian sauces contain gluten). If you feel loads better after a month, keep at it. If you dont notice a difference .. . find a new doctor, becuase something is wrong!!