Celiac Disease Support Group

Hi All -

I am new to this support group and have been following a gluten free diet for the last year for my daughter.

Last year my 7 year old daughter started experiencing a lot of stomach problems. The Dr ordered blood work which came back highly positive for CD. This lead us to do the endoscope, which came back negative. In speaking with her Dr, we decided to do the gene test, which showed she does in fact have the gene for CD. She also, gets blisters on her elbows that no one can seem to explain why they are there. So, with the positive blood work and the positive gene test we decided to place her on a gluten free diet. Her stomach has been doing much better.

Now, since I know the CD is a genetic disorder I fully expected that I was the one that passed this on to her. I've always had stomach problems. However, when I had the blood work done it came back negative. My Dr at the time did not want to pursue it.

I've since moved in to a Nurse Practioner who did a Stool test which showed a gluten intolerence and Leaky Gut Syndrome. I've read some information on the internet that Leaky gut has a lot do to with CD. Has anyone else heard of this or had experience with this? Since I had the blood test over a year ago I'm wondering if I should have it re-done or is the stool test more reliable.

Over the last year I've also been dealing with chronic fatigue, headaches and a thyroid problem. Which I know are all signs of CD. However, my Dr does not seem to think they are related.

Any information anyone can provide would be greatly appreciated.

Thank you!

KJA

Dr. do not seem to be as interested as we are in finding out what is wrong with us. so this is my opinion only....Ask to see a specialist or another Dr. for a second opinion. The specialist would be the best. we had a 8 year battle back and forth before my dad got a positive dx and that is only because we did not know what we were dealing with. then my son started having the same problems and we got the blood test and it was positive, but the Dr felt it best to see a specialist because it is hereditary and we wanted to make sure it was the same type of CD.

Thank you for your response! If you don't mind my asking, if you're Dr. wasn't interested in finding out what was wrong how did you get the referral to the specialist? Was it from the Dr. that you went to for the second opinion? Was it a GI specialist?

Thanks again!