Non-celiac Gluten Intolerance

[katerinvon]

I just read a short article on non-celiac gluten intolerance. The article stated that celiac disease is only a small part of the larger picture that is gluten intolerance. My daughter, now two, has never really shown the clasic symptoms of celiac, illness, weight loss, distended abdomen, etc. But she did have loose stools and horrible diaper rash.

We have been using and perfecting her gluten free diet for about a year and a half now, and she is rash free, has normal BM's, and is compleatly healthy. Sometimes I feel so crazy about being so carefull about her diet, wondering if I was wrong, did I imagine it all? She has had no diagnostics. Her ped said they were very expensive, (we only have major medical insurance) and that the elimination diet was proof enough of a problem.

Could we be dealing with just gluten intolerance? If so, could it become celiac disease later?

I don't dare take her off the diet just to see if she still reacts.

Has anyone else been where I am?

Thanks, Karen S.

[lonewolf]

I think the jury is still out on whether or not gluten intolerance can become celiac disease. Either way, if she is healthy, and you know the diet is working, why not stick with it? Believe me, I wish I would have discovered my son's problem when he was little. We thought it was just milk. At age 11 he is angry about having to go gluten-free and not always cooperative.

[Guest nini]

my daughter was not officially dx with Celiac by a GI... he refused to accept that she might have it. The tests he did were not the complete Celiac panel, more like an allergy screening, and she was negative... however, with her symptoms, her Ped, agreed with me to try the diet. She made such a miraculous improvement on the diet that we won't ever go back. Her ped. said that while we "know" that it's Celiac because I have it and she had such a positive dietary response, we will just call it gluten intolerance in her permanent record so that she doesn't have problems with insurance coverage on down the road.

I think that gluten intolerance is simple the beginning stages of Celiac. If left untreated, most will eventually develop Celiac. Sure some will not, but there are too many "experts" that won't agree on what constitutes a true celiac dx. Anyway, I ramble...

Yes, Celiac is just a small part of the picture that is Gluten Intolerance. Gluten Intolerance is related to so many other health issues that if the truth truly came out, it would be revolutionary.

[mrsnj91]

Yes it is possible. It is something we are looking into as well. The ped. GI said that you can be just gluten intoll. and then there is Celiac. They are not the same nor are they related. Our reactions are the same as you listed. But we also have some allergy reaction as well (hives and eczema). IMO the diet alone doesn't diagnose Celiac. It just tells you that you are reacting to the gluten in the food (or it even could be something else). I have read over much on this board and taken a little of this and a little of that to find where we want to head from here. I think when it comes down to it, that is all any of us can do. Your daughter is on the diet....it is working. Would having an "offical" diagnoses be necessary? Would it change anything? It could.....It couldn't ....it simply depends on what you want. Some need that offical answer. If given the choice between an intoller. or Celiac I would pick the intoller. The better of the two evils. But it wouldn't change the diet in the end.

For us we are in the testing stage. I am ruling out allergies and then we are going to try to find out if Celiac. BUT I have decided not to do the biop. So in the end we may never really know. The end result no matter if allergy/gluten intoller/Celiac.....the same diet.

[barbara3675]

Dr Fine at Enterolab says that you can have an intolerance to gluten which, if you do not follow a strict gluten free diet, will lead to celiac disease. I had the full panel testing done with Enterolab and do not have the classic symptoms (mine were tummy pains, swinging between diarreah and constipation and a few others, but I actually tend to be overweight---surely no weight loss)---but throught the testing it was found that I have a celiac gene. My symptoms went away when I ate gluten free. Do not let people tell you that having an intolerance cannot lead to celiac disease. You are just lucky that you have found out before your little one actually got full blown celiac disease and there was damage to the villi. You must keep your little one on a strict gluten-free diet. My granddaughter did have all the classic symptoms when she was one year old and was diagnosed.....she is the picture of health now at 7 years of age and is very wise about eating gluten-free. Barbara

[kempy99]

I just read a short article on non-celiac gluten intolerance. The article stated that celiac disease is only a small part of the larger picture that is gluten intolerance. My daughter, now two, has never really shown the clasic symptoms of celiac, illness, weight loss, distended abdomen, etc. But she did have loose stools and horrible diaper rash.

We have been using and perfecting her gluten free diet for about a year and a half now, and she is rash free, has normal BM's, and is compleatly healthy. Sometimes I feel so crazy about being so carefull about her diet, wondering if I was wrong, did I imagine it all? She has had no diagnostics. Her ped said they were very expensive, (we only have major medical insurance) and that the elimination diet was proof enough of a problem.

Could we be dealing with just gluten intolerance? If so, could it become celiac disease later?

I don't dare take her off the diet just to see if she still reacts.

Has anyone else been where I am?

Thanks, Karen S.

Hi Karen,

Wow, you could not have described our situation with our 3 year old any better. I am in the exact same boat as you - no diagnositic test, same symptoms in the begining (and lack of the clasics), on gluten-free diet and doing great....so what is it? Wheat allergy? Gluten intolerance? Celiac? Neither my husband not I have Celiac (that I know of - or any food allergy to speak of), so that just adds to the confusion. Hoping to find some insight in the other responses to this post.

Good Luck!

Rebecca

[Nic]

This topic does raise a question for me. As I have said before, my son's blood test was postive for gluten sensitivity but his original biopsy was nagative for Celiac. It was after the Dr. sent the biopsy out to Columbia University that he was given a positive Celiac diagnosis. This always made me nervous that he does not in fact have Celiac but just might be gluten sensitive. I know I am being silly because my father, aunt, and 3 cousins have Celiac as well I just would have felt better if all the results were in agreement.

Nicole

[VegasCeliacBuckeye]

Read "Dangerous Grains" -- it explains Non Celiac Gluten Sensitivity and its effects pretty well.

I got it on Amazon for $13

[Guest Robbin]

Dr. Fine specifically states that "gluten sensitivity underlies the development of celiac sprue." She has symptoms that will lead to damage which is celiac, which is the result of gluten intolerance. She must stay gluten-free or she will get damage. Take care

[lonewolf]

I guess this whole issue still confuses me. I am most definitely gluten intolerant, but by the time I knew that I should have testing done for a "real" diagnosis I had been off gluten for so long that no test would be accurate. My doctor agreed that I should have some genetic testing done, so I had the gene test from Kimball Genetics. It was negative for both main Celiac genes. So, here I am, knowing that I can't have Celiac Disease, but at the same time am totally gluten intolerant. So how could it turn into Celiac Disease? Of course, I will never knowingly eat gluten again, so I don't plan to find out how bad I could get, but I think that there are some people who are simply gluten intolerant and could get very sick (like I was) but not develop Celiac.

[Kristen2Denise]

My sister was diagnosed as gluten intolerant about two years ago and her symptoms were so different than mine that I never even thought to check that out until a year later. However, her symptoms were awful - she had arthritis in her hands so bad she would cry and she was always in pain, at 24 she had already developed osteoporosis - sorry I can't spell -- and had shrunk an inch. I'm definitely a celiac but I would have been so much happier if someone figured this out when I was younger. Of course it's up to you, but why risk it if your child is happy and healthy gluten-free - there are worse things than living without gluten...its a small price to pay for your health!

[tigerlily]

I've also been asking myself that question for quite some time now: We've done elimination and there has been 100% improvement within days!!! But as soon as we went back onto Gluten, it got bad again, now Eden is vomiting as well. She'll have her blood tests done on Monday (so we had to give her Gluten again) and then, depending on the outcome, the biopsy. But whatever the outcome, the elimination diet has proved that she is intolerant to Gluten.

We have opted for the tests as Eden has other health problems (Congenitial Heart Disease and Dairy/Nut Allergy) and we wanted to know for sure.

Vanessa.