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Lots Of Symptoms, But Negative Diagnosis
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I have a daughter, almost 13, who is always tired. Always. She also has enamel spots on her teeth, gets canker sores all the time, seems to have low bone density with as many issues as she's had, and has been declared "failure to thrive". She only weighs 76lbs. She also gets headaches all the time. Her doctor suggested getting tested for Celiac. The blood test revealed an iGa deficiency, which threw the test results out the window, I guess. We then saw a GI doctor. She had an endoscopy with biopsies this past Tuesday. The results show no Celiac Disease. She did, however, come out of it with pneomonia! It has been a horrible experience!!! My gut tells me I should still see a dietician. I have 2 othe younger daughters... one is 11, and the other is 8. The 11yr. old has the typical gastrointestinal issues and was told she has IBS. We had blood work done on her, but are still waiting for results. My 8yr. old has headaches almost nightly, stomachaches, and yellow teeth. She also seems to be getting more ADHD by the day. Her blood work revealed the same iGa deficiency as my oldest. What do I do!?!? I do not want to go through any more endoscopys based on my oldest daughter's horrible experience!!! Plus, she got a negative result. They all have symptoms!!! Am I crazy!!

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Call both doctors and get the test results. The IgA antibody tests may not be helpful, but the IgG ones can still tell you some useful information. You can also check the endoscopy report to find out if there *was* something to find but not "enough" for the GI to diagnose celiac.

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I agree you absolutely need written copies of all test results; maybe he did not do any IgG tests? Is there any family history of either GI problems or autoimmune diseases like thyroid, arthritis, diabetes, etc.?

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I would also have you younger children tested. IBS is a symptom and not a cause, the cause could be celiac. ADHD is often food linked too. What's Eating Your Child is a great book that discusses how diet affects behaviour; you might want to take a look at it.

My three boys all tested negative for celiac but like your daughters, they had varying degrees of gluten intolerance symptoms. We decided to make them gluten-free along with me because eating gluten-free can't hurt (as long as you don't replace wheat with sugar laden gluten-free substitutes at every meal), it could help them feel better, plus it was easier if everyone ate gluten-free in the house from a food prep point of view.

Even though my boys had negative tests, two of them have shown real health and behaviour improvements on the gluten-free diet. My oldest is putting on a bit of weight and growing, has less headaches and stomach aches, and his mood and concentration has really improved. My youngest used to have to visit the bathroom for bm's 5 to 8 times a day and now he's down to 1-3 and has grown a LOT.

I mention all of that to encourage you to try the gluten-free (and possible dairy-free) diet for a few months once your daughters' testing is done regardless of the outcome. Non-celiac Gluten Intolerance is much more common that celac is, and could be causing their health problems.

Best wishes.

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Ok, I will get the test results from the doctors. There is history of Barrott's Esophogus, colon cancer, Crohns, Diabetes, GERD, Diverticulitis.........as far as Celiac Disease goes, no one in our families has a diagnosis. (doesn't mean it's not there)

Thank you!

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I would also have you younger children tested. IBS is a symptom and not a cause, the cause could be celiac. ADHD is often food linked too. What's Eating Your Child is a great book that discusses how diet affects behaviour; you might want to take a look at it.

My three boys all tested negative for celiac but like your daughters, they had varying degrees of gluten intolerance symptoms. We decided to make them gluten-free along with me because eating gluten-free can't hurt (as long as you don't replace wheat with sugar laden gluten-free substitutes at every meal), it could help them feel better, plus it was easier if everyone ate gluten-free in the house from a food prep point of view.

Even though my boys had negative tests, two of them have shown real health and behaviour improvements on the gluten-free diet. My oldest is putting on a bit of weight and growing, has less headaches and stomach aches, and his mood and concentration has really improved. My youngest used to have to visit the bathroom for bm's 5 to 8 times a day and now he's down to 1-3 and has grown a LOT.

I mention all of that to encourage you to try the gluten-free (and possible dairy-free) diet for a few months once your daughters' testing is done regardless of the outcome. Non-celiac Gluten Intolerance is much more common that celac is, and could be causing their health problems.

Best wishes.

Thank you! That's what I think is going to happen....waiting to talk to regular pediatrician tomorrow

Peg

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Have you thought about genetic testing? It might not get a dx, but it can give a clue, as it were. Its also possible that NCGI (non-celiac gluten intolerence) can be causing this too.

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    • Thanks.  This is very helpful.  Our first post diagnosis grocery store trip took several hours, just trying to read labels to make sure everything is safe.   Our son loves bread and this going to be the hardest part. 
    • i would agree with most of your assessment but overall the popular chefs are very aware. Ed Kenny at Town did have  gluten-free options on the menu.  Mavro's will fix something special given advance notice but its expensive.  excellent but very expensive.  Alan Wong is very aware and will have his staff prepare something as well.  We did find many options at both Oahu  whole foods -- mostly  with tofu. the only thing  there is to be aware of cross contamination with things  next to it.  they make a great gluten-free southwestern tofo dish which is great but not if its sitting next to anything with gluten. Its not whole foods but people use the smae  spoons and tongs i found more at   down to earth in peal city than by  University ave  
    • Hi,  I'm in KOna but my kaiser doctor just retired  who was pretty good about it. I dont know of a specialist here  but most of hte kaiser docs wil test you if thats when you need to talk to them about. good luck  
    • Yes.  And wouldn't it have been nice if your doctor had tested you for Celiac disease before you went gluten free? Then you would know if your issues are Celiac or not.  That would help you know how careful you need to be, what other illnesses and problems to look for, whether you might be passing a genetic disease on to your children, if you should look for another cause of your symptoms, etc  
    • I would be very careful in giving this kind of advice, she is in an advanced stage. I was there and one additional symptom that I was getting was a strong urge to commit suicide so eating gluten for three months might not be the way to go for some people. If a gluten free diet stop the problems them gluten is the problem or a least part of it. I eliminated MSG from my diet because I notice that the common denominator for some products that affected my well being was MSG. I eliminated oats because I notice that I would get canker sores every time I ate it. Wheat is what affect my brain the most, irritability gets uncontrollable, my mental capacity greatly diminish, rash in my arms appear, can't sleep,etc. Barley makes my stomach groan, and constipated. Will try testing how Rye affect me some later time. 
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