Lots Of Symptoms, But Negative Diagnosis

[Pegsgirls]

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!!

[tarnalberry]

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.

[mushroom]

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.?

[nvsmom]

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.

[Pegsgirls]

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!

[Pegsgirls]

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

[shadowicewolf]

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.