Diagnosis

[jsdawson]

My son is 9 I posted earlier about constipation. Well where do I start. He has always been a hand full. I thought oh hes just a boy. Bu then he would have fits where he would throw himself on the ground, was irritable all the time and would have night terrors. Well we found out at age 4 that he had IgA deficiency, because of reaccurent sinus infections. By 5 he was dignosed ADHD and meds helped alittle but the irratibity and fits were still there. By age 6 he was diagnosed Bipolar. BP meds seemed to work at first and all would poop out. Then later in the same year he developed hypothroidism and started to have complex particial seizures. We had loads of docs and he was never getting better until I brought him to a new nurolgist, who ran tests to rule out things. His IGG level came back very high and IGA low ofcourse. So we went on the diet right away and started to see a positive change. A few weeks into the diet he had 2 pretty bad seizures, not sure why so doc changed seizure med, he ended up having a bad reaction to the med ended up in the hosp. I know long story! Well to make a long story short I was mad at Childrens hospital because they would not do anything to help in hosp. so I removed him. Took him home and I know it is risky but I changed his meds. He no longer takes seizure meds and has been seizure free takes low dose of adhd med and low dose of abilify and is the happiest I have ever seen him. So now to the GI doc who we just saw monday. He ran the gene test and the full blood tests on him again while he was on the gluten free diet. Said that some levels were a little elevated but looked good and he tested positive for one of the genes. He wants me to take my son off the gluten free diet for a month or more, redo the tests and a biopsy. I told him no. I am at odds, he will not say that my son has celiac until he does a biopsy, I do not understand that. I do not want to put my son through the pain and probibily seizures coming back. Any feed back would be great.

Thanks,

Jennifer

PS. I had blood work done on myself because I have had unexplained joint pain, fatigue and D and they came back negative but I am on the diet and feel the best I have felt in a long time

[watkinson]

Hi jsdawson,

unfortunatley the blood tests for celiac disease are not perfectly accurate, as a matter of fact there is a very high false negative response especially in children. Because of this is why doctors sometimes recommend the biopsy saying it is the only definitive answer. I would say for sure that since your sons blood test showed positive(even a little) that would be enough for me.

I have always felt that the true answer is going gluten free is if you feel better then there is your answer.

Some people want to know for sure because there is also gluten intollerance and wheat allergies. These are NOT the autoimmune disease-Celiacs. Once you have 1 autoimmune disease you have a higher probablility of getting more. Plus people like to know because Celiacs is hereditary and runs in families, so with a positive response, other people in your family should be tested.

You have a big dilema.... do you put him back on gluten and do the biopsy to find out for sure, or is the fact that he feels better being gluten-free, enough? For me it would be enough. I would absolutley make sure any medication or vitamins you give him are also gluten-free. Many Many meds are not. It could be the reason for him having the reaction.

It also sounds to me like you are a Celiac as well.

Forget the test, if you feel better then that's your answer!

Wendy

[tarnalberry]

You have to ask yourself if a doctor's diagnosis is more important than the empiric evidence that you have already seen. In children, I think it's a different debate than in adults, as there are more people to whom you have to 'prove' that the child needs to be gluten-free, but you still do have the option of merely keeping him gluten-free without additional testing.

[mommida]

A gluten challenge can be very risky and a lot of specialist are against the practice. You are dealing with even more risk invoving different medications. (My daughter ended up being hopsitalized for dehydration attempting the gluten challenge.)

Some members of the forum have reported some difficulties with insurance coverage after getting diagnosed with celiac disease.

You have the proof of the gluten free diets affect on his body and yours, the elevated levels on some of the celiac disease screening tests, and a positive genetic marker - that is enough proof IMO.

I recently ran accross an article that may be of special interest to you. Open Original Shared Link (if this link is no longer valid -please check out the michigan Immunodeficiency Foundation's web site

L.

[jsdawson]

A gluten challenge can be very risky and a lot of specialist are against the practice. You are dealing with even more risk invoving different medications. (My daughter ended up being hopsitalized for dehydration attempting the gluten challenge.)

Some members of the forum have reported some difficulties with insurance coverage after getting diagnosed with celiac disease.

You have the proof of the gluten free diets affect on his body and yours, the elevated levels on some of the celiac disease screening tests, and a positive genetic marker - that is enough proof IMO.

I recently ran accross an article that may be of special interest to you. Open Original Shared Link (if this link is no longer valid -please check out the michigan Immunodeficiency Foundation's web site

L.

Thanks that is a great article

[AndreaB]

If you have the money enterolab does stool tests which would tell you if he had an active intolerance, ttg and fecal fat score. They also do gene testing and soy/egg/yeast. Check out www.enterolab.com for more info. You don't have to go back on gluten to do their test.