Our son was diagnosed almost two years ago at age 4. Since diagnosis he has compainedof his stomach hurting. He was tested (so they say) for celiac and he was negative. Recently his stomach pains are more frequent. There is no rhyme or reason as to when he hurts… Middle of the night, middle of the day. He just had his yearly blood panel which came back low in the ttg iga test. Any thoughts?
Why not try cutting out gluten, he may not be celiac but could be wheat and gluten intolerant. This means eating like a celiac. but that is really not so difficult these days.
I am sorry your son is suffering like that. I learned some things when my mother had celiac disease.
Just because you test negative for celiac disease doesnt mean you don't have it. If you have not been eating gluten, or enough gluten, the test will come out negative. Some people with celiac disease also have trouble with oats, so if you use lotion or soap with oatmeal in it and then eat before you wash it off, you may be ingesting enough to cause a reaction. Certain gums have somethign in them, I forget what, that you cannot have if you have celiac disease. You cannot have cornstarch either.
If you suspect celiac disease, I would look for a list of ingredients to avoid and put him on a strict diet for a couple of weeks. Oh, and don't trust the people at the health food stores to be accurate as to what you can and cannot eat in there store if you are on a gluten free diet. Double check everything on their lists. Also be aware that a lot of the gluten free food substitutes, like rice pasta or rice flours used in baked goods, for instance, have more carbs per serving, so a diabetic has to deal with that also.
Good luck!
I also say try cutting out gluten and see what happens. My boyfriend had horrible stomach pains for 6 months, he went to a specialist who found nothing abnormal in his blood work, and a colonoscopy turned up nothing as well. On his own he decided to try cutting out gluten, and he's now pain free and feels 100% better in all ways. It is possible to have an intolerance that doesn't show up on blood panels!
I agree with the others about just trying to cut out gluten on your own. I did that 3 years ago when I was having problems and kind of accidentally figured out gluten was the problem. My main source of gluten was bread and I quit eating that for 2 months to cut back on calories. When I quit eating it, the problems I was having all went away and when I started up again, they all came back. I knew I had a problem with it. I couldn't tell you for sure how long they took to go away but I have read it can take a couple months.
Another thing they can do is gene testing. I went to a doctor this summer that said since I had been gluten free for so long, they could do the gene testing. There is one gene that 90-some percent of people with Celiacs have. I didn't have that particular one, but I did have another one that 6% of people with Celiacs have without having the main one. I know I have a problem with gluten and I know I have a gene that can cause it.
A drawback of not having an official diagnosis is a lot of drugs have gluten in. If there is a common generic that has gluten, you might have trouble getting your insurance to cover a brand one that doesn't. I am having that problem now. The drug companies that make generics change the fillers in them and you might not have a problem and then they change the filler to something with gluten in.