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Staceyshoe

Would You Call This "undiagnosed Celiac"?

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My oldest son has had digestive issues his whole life (severe esophagal inflammation as an infant/toddler and frequent unexplained stomach pain as a child). He's 6 and lost 3 lbs earlier this year despite a very healthy appetite--which puts his BMI at around the 3rd percentile. We have realized that there's a family history of celiac, though no one else has been tested. Here's a quick run-down of his current situation:

*has a very potent genetic subtype for developing celiac disease (subtype 2.5).

*never had Vit D, iron, or other nutrient levels tested.

*is IGA deficient

*TTG IGA is the only celiac level taken on blood test but was inconclusive since he's IGA deficient (TTG IGA was 5)

*scope in April 2011 was negative for celiac while on gluten

*went gluten-free for 10 weeks with one accidental exposure to trace gluten without reaction. Mysterious stomach pain disappeared while gluten-free. Gluten challenge after gluten-free diet was an utter failure--horrible stomach cramps and serious diarrhea. No weight gain during gluten-free period (granted, it was a short period of time).

Obviously, he does have a sensitivity to gluten. Would you consider this "celiac disease" or not?

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It does sound like it. If he is still on gluten can your doctor run a full panel? Another thing is that some doctors will give a diagnosis if the person recovers well on the diet and is made ill when gluten is injested. You could talk to your doctor about that possibility.

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Your sons body would say its celiac, trust it. Drs are ignorant when it comes to this, they diagnose ibs or suggest therapy. Listen to your gut and your sons gut.

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Negative scope suggests gluten intolerance rather than celiac, though you can't be sure without the proper blood tests. Thing is, gluten intolerance can make him every bit as sick as celiac. He's also got a lot of celiac disease risk with the low IgA and DQ2.5. Gluten intolerance may be a predecessor or early stage of celiac disease in DQ2.5 folks anyway, and even if he's not celiac now he might be in ten years if you keep feeding him gluten.

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Celiac alone should not show esophagial damage. (Unless there was severe vommiting from gluten ingestion.) Was there an eosinophil count taken from tissue samples of the esophagus? Were any of theses terms used to describe the esophagus... imflammation, furrowed, schataki ring, or strictures? Did you get to see pictures from the endoscopy? The imflammation can make it look like a pink puffed doughnut, but were there any cream speckles or free form blobs of cream colored areas. Was there patches of blood? Or search Eosinophilic esophagitus. This would have been easily missed because it is only recently becoming known and getting diagnosed.

My daughter was diagnosed as "probable" Celiac when she was 17 months old with a positive blood test and genetic testing. She was too ill to have the endoscopy with biopsy at the time as she was hospitalized with dehydration for 4 days.

When she was 6 it seemed as if all the glutening symptoms were back except she was vommitting about 5-6 times a day (like GERD), saying her whole stomach hurt, dark circles under the eyes, headaches, no wight gain and was starting to lose weight, and her hair was starting to fall out. She was then diagnosed with Eosinophilic Esophagitus.

A gluten intolerance seems very likely in your son's case, but make sure you have ruled out numerous other illnesses. Keep a food journal. Now this is also a possible part of the puzzle, do you remember what season symptoms started in? (Yes I do mean spring, summer, fall, winter.) Does your son still have his tonsils? Are they enlarged? Is there any speckles on them? Does he have bad breath?

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