Inflammation From Celiac Disease?

[ProutyA]

My niece had a biopsy last week. She is 3 years old and suffers from tummy aches and has chronic anemia.

Several relatives do not eat gluten because they feel better when they don't. Nobody has been diagnosed.

The results of the biopsy show her small intestine is inflamed and the doctor says she does not have celiac. I thought the small intestine gets inflamed from celiac. Am I wrong?

Thanks!

[Gemini]

My niece had a biopsy last week. She is 3 years old and suffers from tummy aches and has chronic anemia.

Several relatives do not eat gluten because they feel better when they don't. Nobody has been diagnosed.

The results of the biopsy show her small intestine is inflamed and the doctor says she does not have celiac. I thought the small intestine gets inflamed from celiac. Am I wrong?

Thanks!

No, you are not wrong. This is the type of ignorant doctoring that I will never understand. Your intestines will become inflamed first, sometimes for years and then when enough damage has been done, the villi start to go. That could take a long time to happen too, depending upon the person. Doing a biopsy on a 3 year old and then saying it isn't Celiac because they could not find damamged villi yet is plain stupid. If that child continued to eat gluten, then maybe down the road there would be the proof the doctor is looking for but why would any parent in their right mind do that?

Plus, when it is ever normal for a 3 year old to suffer from chronic anemia? Your niece is most likely a Celiac and a trial diet should give some answers. It's no small wonder only 3% of the population are diagnosed!

[CeliBelli]

I agree with Gemini, you are not wrong. More questions need to be asked, and a second opinion obtained. If this is not celiac disease, then what is the doctor's diagnosis of the inflammation? If they cannot answer that, then they have not taken this far enough. At minimum the child should tested to check for the antibodies to gluten, and for the genetic markers for celiac disease. So should the family members who abstain from gluten. This can be done with a simple two-in-one blood test. At minimum the child's parents, grandparents and siblings should be tested.

If any of them test positive, it adds substantial weight to the likelihood the problem is celiac disease. If none of the testing indicates celiac, and the pathology report does not indicate celiac, then the family definitely needs a clear alternative explanation and treatment plan. The risks to a child that young exhibiting celiac symptoms are serious and need diagnosis.

You don't say what type of doctor made the comments you reference. Are they a gastroenterologist? If not, the family needs to find one - a good one - experienced in pediatrics.

Good luck!