Please Help Me Understand The Difference

[aidansmom]

My 3 year old son has not grown in a year and is considered failure to thrive now. He was diagnosed at 14 months with celiac disease (positive IgG and IgA, neg ttG). His diarrhea resolved within 1 week of gluten-free diet. He also began to tolerate soy/dairy which he previously could not tolerate. He did well on the diet for 10 months and then developed diarrhea again. Our new pedi GI did the gene test which was negative. We now have off/on diarrhea for a year and he can no longer tolerate soy or dairy. I can't figure out where he is getting contaminated and don't even really know if that is the cause of his diarrhea. Per pedi GI request, I reintroduced gluten and it was a very ugly fast reaction so I KNOW he is still intolerant.

If my son is just gluten intolerant does this mean he is not at an increased risk of the other autoimmune disease (diabetes, cancer, etc) or not?

Also, is it possible that his ttG was negative because he was so young (14 months)?

If we decided to retest ttG, how long would he need to be on gluten?

Edited to add: His biopsy was positive for mild villi damage.

TIA!!

[KaitiUSA]

The non celiac gluten intolerance does not cause damage to the intestines but it will cause symptoms and it is possible to develop celiac then.

Celiac causes damage to the intestines.

Testing below 2 years of age can be false. To get testing done your son needs to be on gluten for 3 months. However with a negative gene test it is unlikely for him to have celiac.

[celiac3270]

A negative gene test means that you can be 99.9999999999999% sure that your son isn't celiac--almost guarantee. And that will NOT be affected by age. Because of that, retesting wouldn't really tell you much--because no doctor will diagnose celiac without a gene.

Gluten intolerance can be used synonymously to mean celiac, but can also be when one cannot tolerate gluten (literally: gluten intolerance), but doesn't have celiac. There shouldn't be intestinal damage, but you should still be off of gluten.

[gf4life]

Okay, I hope I don't cause more confusion here, but there are the two main Celiac genes (DQ2 & DQ8) but there are also some lesser genes that can cause gluten intolerance. Your child was most likely NOT tested for these. There may come a day where these are all seen as varying degrees of the same disease. Then there is also the fact that you could have Celiac disease, but not yet have the damage consistent with the diagnosis. In my family we have two of each. Two with "non-celiac" gluten intolerance due to the genes, and two who are gluten intolerant with the celiac genes, but not severe damage. We also have my husband who won't get tested, but has to carry the gluten intolerance genes, since someone had to give them to the boys...

I guess my point is that if you (or your child) feel better on the gluten-free diet, then that may be your answer. My middle child Jacob does not have the celiac genes, but he did have borderline malabsorbtion in his intestines. He was positive on the Anti-Gliadin IgG blood test only. If I had let him continue on gluten he would still be sick, and the smallest child in his class at school. He is so healthy now and growing taller all the time!

God bless,

Mariann

[lmtrenholm]

Hi,

It sounds like you should have your son stay off gluten no matter what. Also, if he is still having diarrhea and you think it's soy and/or dairy, then keep him off those too.

My two girls are both allergic to milk (have been for years, since they were little) and we recently found out that one of them, who is now 17, is celiac. I also suspect that her younger sister may be too.

I wonder whether you've been vigilent about keeping your son off milk. I know that even the smallest amount of milk protein will cause problems for my daughters. We used to love Cool Whip, and because we thought it was milk free we wondered why it seemed to cause symptoms. Well I finally got savvy regarding reading ingredients and realized that it contained sodium caseinate, i.e. casein=milk protein. Even cheeses that say they are dairy free usually have some form of casein in them.

Milk reactions can be obvious as in ear infections, upset stomachs and diarrhea, or they can be quite subtle such as a chronically runny nose, mood swings, temper tantrums, tonsil/adenoid problems, brain fog, or even night terrors (my oldest had night terrors and walked in her sleep whenever she accidentally ate casein, when she was about 3 years old).

You have to be so careful when it comes to checking for milk ingredients in foods. We actually eat very little prepared/processed food now because it's just not worth the hassle. It's easier and safer, especially if you have two problems like gluten and casein, just to stick to plain meat, vegetables, fruits and nuts.

You might want to think about having your son tested for other allergies since people who have one, often have a others.

Don't let it get you down. I know that I was going a bit crazy when my kids were always sick and I didn't know what the problem was. I must say that now that we mostly just eat plain meat (including eggs, unless there's a problem with egg intolerance), vegetables and fruits, we are all healthier than I ever thought possible. I've honestly come to believe that grains and dairy are not good for anyone, whether they have an intolerance/allergy or not. (Read the Paleolithic Diet, the Protein Power Diet, or Neanderthin if you're at all interested in reading more on this.) And yes....you do finally catch up on all that sleep you lost when they were little and keeping you up at night!

[Carriefaith]

He was diagnosed at 14 months with celiac disease (positive IgG and IgA, neg ttG)... His biopsy was positive for mild villi damage

From these results I would guess that he may have celiac disease. I'm no expert but I think I have read somewhere that individuals without the celiac gene can still have celiac (someone correct me if this is wrong). However, I think this is rare and my source could be false. Villi damage would point to celiac disease but I am confused about the negative ttg blood test I believe it was posted on here before (maybe by Tiffany ie. tarnalberry) that villi damage can occur becasue of other things. Although I don't remeber what exactly, maybe it was the milk protein casein?

Regardless, I think it would be a good idea for him to stay away from gluten and dairy. Maybe you should talk to your doctor about getting supplements since he may be missing out on some.

*Since he is getting sick again, I would re-evalute every product that goes near his mouth. Does he play with wheat based playdough at church, preschool, babysitters? Also check things like sunscreen, shampoo, conditioner, toothpaste, ect.