Is It Celiac Disease Or Gluten Intolerance

[bananababy42]

I have been trying to get an answer to the following question but have had no luck. Most of the research on celiac disease or GI was done after the 1950's when gluten was discovered to be the culprit in Celiac Disease. I was diagnosed with Celiac Disease in 1943 and apparently had it for 8 years. At that time, my family was advised that I was "cured". Now that I know better, I have been trying to find my own answers. I have celiac disease symptoms but every test that I have taken (and I've taken many!!!), all indicate negative for celiac disease. Could I have had Gluten Intolerance in 1943, but due to the lack of knowledge of gluten, was diagnosed with Celiac Disease? And, if I truly had Celiac Disease, wouldn't it be showing up in some test now?

I have learned the hard way that eating gluten free definitely makes me feel better. I don't have all my symptoms disappear when I go gluten free but enough so that I can tell gluten is upsetting my system.

Thanks in advance for reading such a long posting and for a possible answer.

Bananababy42

[Mskedi]

I have no idea how to answer your question, but I would say since the answer to both is a gluten-free diet, at least you're lucky to have narrowed your problem down to one of the two.

I hope you get the answers you want.

[Takala]

If you are eating a gluten free diet, after some time, you will test negative on the blood panel for the antibodies to gluten in the bloodstream and for the immune system response. If you are eating a gluten free diet, you will also eventually heal your gut lining intestinal villi (almost all of the time) and your endoscopy will probably not show any damage.

A genetic test would show whether or not you have the HLA DQ genes that predispose one to becoming gluten intolerant and/or celiac. But not all people with the genes develop the auto immune disease. You can search wikipedia for HLA DQ8 and DQ1 and DQ2, and follow those links for a fascinating discussion. The gene research is going along faster than I can keep up with it.

There are some writings on the internet that say that gluten intolerance might be a form of celiac that either hasn't progressed all the way yet to enough damage to cause weight loss, and others who say it might be atypical celiac with different symptoms. My symptoms were arthritis, bone loss in spine, kidney problems, infertility, fibroids, cysts, and a lot of ataxia and other problems mimicing MS, definite neurological problems.

Most of you eat gluten and get sick to your stomachs, my eyes cross and I start wondering where my feet are.

It was thought, in the past, that children "outgrew" celiac, now we know that this is not true. After I thought a bit about this, I think it's a pretty good question. I'm definitely gluten intolerant, and do not have an official diagnosis, but had to develop a lifetime of other problems first to be able to draw my own conclusions. The last time anyone ran a blood test, I had only a few antibodies, like about "5" or "10" when you needed about 300 to be positive, which I thought was pretty exciting, it was like seeing the lost antibodies of the civilization of Lab Atlantis, but certainly not enough to prove anything within the range of positive.

I've looked at pictures of me when i was very young, and I was one skinny little kid with the pale eyes, skin, and light hair. Until my grandmother started feeding me ice cream, when I plumped up to normal, shocking my mother at the time. ( the mixture of those northern European genes must have given me some lactose tolerance ) I grew quickly and was tall for my age at 12 but then just stopped growing and never grew as tall as either of my parents. We did not eat that much bread at home, and upon remembering, my mother never ate that much bread or cereal compared to a regular person, but baked a lot for the family. This is why I can convert recipes easily, and didn't find gluten free baking that annoying, as I also baked a lot before my metabolism slowed down.