Negative Biopsy, Can It Still Be Celiac

[Teddy's mom]

My 20 year old daughter has had diarrhea and abdominal pain freq. over the past 8 years. Docs said it was IBS. She also developed vitiligo around the time her gi symptoms started. Her blood tests for celiac were negative but doc decided to do endoscopy anyway and the biopsy results were negative for celiac but showed some white blood cells and mild inflammation. Her B12 level is low. She started on a gluten free diet 4 days ago. My question is, could it be possible for her to have celiac even though the blood work and biopsy were negative? There is alot of autoimmune disease in our family. RA (GGM) psoriasis (mom and GM), vasculitis (GM died from this at 30yrs), hypothyroidism (GM and MOM). I have HLA-DQ8, with positive blood tests and same biopsy results as daughter, mild inflammation with a few WBC. Should she keep on the the gluten-free diet? She is deflated that tests were negative. She just wants answers, a diagnosis and relief. Thanks for your input.

[ravenwoodglass]

Yes it is possible to have celiac with a negative biopsy and even with negative blood tests. Not only should she keep with the diet you should also.

[mushroom]

There is also a range of reactions to gluten, from full-blown celiac disease, to latent celiac (not yet responsive to testing) to gluten sensitivity and gluten intolerance. All of these conditions require a gluten free diet, not just diagnosed celiac disease. While it makes things much neater to have them all tied up in a package labeled "celiac disease", gluten is no less of a problem for those in the other group and can cause problems just as serious. Doctors are only just starting to recognize that though. The lack of a celiac diagnosis makes it that much harder to have your condition taken seriously, unfortunately, because there is so much ignorance surrounding this condition.

[ksymonds84]

A few weeks gluten free should start giving your daughter an answer, although it can take longer to heal completely. My 21 year old daughter is also gluten free. She did a blood test that was negative (mine was too) but since i have a positive biopsy and both DQ 8 and DQ 2 (which means I passed at least one to her) she decided not to test further and just do the diet and she feels great now, no longer missing work and classes. She did have to eliminate dairy for a few months and has a problem with soy like I do. A positive response to the diet IMOP is answer enough that gluten in not your friend. Hope she feels better soon!

[Teddy's mom]

Yes it is possible to have celiac with a negative biopsy and even with negative blood tests. Not only should she keep with the diet you should also.

Thank you for the advice. I am thinking about going gluten-free too, but I think it will be more gradual for me since my only symptom is constipation. She is living with me so eventually I will totally switch over. With all the info I've read about gluten's bad effects, it seems like it should be illegal! LOL. Some research says gluten can lead to Lupus and other life-threatening autoimmune diseases, but my doctor says no, celiac doesn't cause other autoimmune diseases, they just happen to occur together. I'm not sure who to believe, but if it does lead to more severe diseases, I'll quit tomorrow!

[Teddy's mom]

There is also a range of reactions to gluten, from full-blown celiac disease, to latent celiac (not yet responsive to testing) to gluten sensitivity and gluten intolerance. All of these conditions require a gluten free diet, not just diagnosed celiac disease. While it makes things much neater to have them all tied up in a package labeled "celiac disease", gluten is no less of a problem for those in the other group and can cause problems just as serious. Doctors are only just starting to recognize that though. The lack of a celiac diagnosis makes it that much harder to have your condition taken seriously, unfortunately, because there is so much ignorance surrounding this condition.

Thank you for your reply! I'm glad the docs are starting to learn about this!

[Teddy's mom]

A few weeks gluten free should start giving your daughter an answer, although it can take longer to heal completely. My 21 year old daughter is also gluten free. She did a blood test that was negative (mine was too) but since i have a positive biopsy and both DQ 8 and DQ 2 (which means I passed at least one to her) she decided not to test further and just do the diet and she feels great now, no longer missing work and classes. She did have to eliminate dairy for a few months and has a problem with soy like I do. A positive response to the diet IMOP is answer enough that gluten in not your friend. Hope she feels better soon!

Thank you!

[ravenwoodglass]

Thank you for the advice. I am thinking about going gluten-free too, but I think it will be more gradual for me since my only symptom is constipation. She is living with me so eventually I will totally switch over. With all the info I've read about gluten's bad effects, it seems like it should be illegal! LOL. Some research says gluten can lead to Lupus and other life-threatening autoimmune diseases, but my doctor says no, celiac doesn't cause other autoimmune diseases, they just happen to occur together. I'm not sure who to believe, but if it does lead to more severe diseases, I'll quit tomorrow!

Your doctor is wrong. The antibodies that form can attack any organ, pancreas, brain, muscles and joints, gallbladder well pretty much any organ it chooses. I hope you go gluten free rather than gluten light, your constipation is a sign that your body is trying to draw nutrition from your food because your digestive track is becoming compromised. Please don't give gluten the chance to negatively impact your other organs just because you think C is your only issue. It may also make it easier for her to stay strict with the diet if you both struggle with it together.