Help Please

[momzilla]

I need some advice. My 12 year old son has had digestive problems since infancy. He was recently diagnosed as having lactose intolerance and irritable bowel syndrome and GERD. Treatment initially worked, but lately he has been worse than before. His gastroenterologist said blood work for wheat came back negative, and as far as his endoscopy/colonoscopy that was normal also. My health insurance is not the best and I know that most of my concerns are brushed aside. I put my son on a gluten free diet and for that time he was a normal kid again. All his symptoms (headache, grouchiness, diarrhea, tiredness, gas) have disappeared. Two days ago he had a major stress and a minor digestive upset but he is back to normal now. My question is could he be gluten intolerant even though his medical tests say no because the gluten free diet has really changed him. Sorry for the long post but I'm at my wits end. Thank you!

[3boyzmom]

Yes, he could be gluten intolerant even though he tests negative for Celiac's disease. Currently doctors are not testing for anything short of having damaged villi in the small intestines and having full blown Celiac's disease. If your son's tests fell short of that criteria, then you would not have been advised to try a gluten free diet.

I have been finding more and more people who have tested negative on the Celiac blood tests panel and have found major improvement in their physical health going gluten free.

Do you have copies of the blood work done on your son? I am curious if his IgG was elevated and not the rest. This would have indicated a gluten intolerance but not Celiac's disease.

If it makes him feel better and you see the difference, then I think you have your answer. Join the gluten-free club and know that you are doing the right thing by modifying his diet to alleviate his symptoms!

Priscilla

[gf4life]

There are a few articles here at Celiac.com that talk about the blood tests not being accurate. Here are some links to a few of them.

False Negative Serological Results Increase with Less Severe Villous Atrophy

https://www.celiac.com/st_prod.html?p_prodi...-43104177172.cf

The patient should also have the celiac antibodies blood testing, but the diagnosis is still established on the biopsy pathology. In Dr. Greens experience, about 30% of celiacs have negative antibodies at diagnosis, so positive antibodies are not required to make the diagnosis.  Antibodies testing often helps establish the need for a biopsy, but they also have great value in establishing a baseline so that an assessment can be made on how the patient is doing later on. All the antibodies should normalize, in time, when gluten is eliminated from the diet.

The full article can be found here:

https://www.celiac.com/st_prod.html?p_prodi...-41104189220.0e

I personally tested negative on every blood test. My kids tested negative on all but the IgG Gliadin tests. When we did the stool tests we all had antibodies present in the iintestines, and two of my kids had moderate to significant malabsorbtion. But fortunately not severe malabsorbtion. We have all been steadily improving on the diet for most of this year. So needless to say, I am not a big supporter of the blood tests. They just are not sensitive enough to pick up the lower levels of antibodies.

If your son improves on the diet, then you should consider that he is most likely having problems with gluten.

God bless,

Mariann

[momzilla]

Thank you both for the info. The gluten-free diet is definitely a great improvement! I don't have copies of his labs but I remember my pediatrician saying the levels were slightly elevated and his gastro saying that it was insignificant, so who knows! I feel way more informed and confident in that I knew there was a problem that wasn't being addressed. Thank you both again for your help!