Non Celiac Gluten Intolerance

[Dyang]

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Is there really such a disease as non celiac gluten intolerance?

[Guest Robbin]

Hi and welcome. Yes there is and it causes so many problems and illnesses that people just are not aware of. The gene that I have is a known gluten intolerant gene and is also a marker for celiac disease and autoimmune diseases like type I diabetes, multiple sclerosis, scleroderma and lupus. The broad "umbrella" term is like saying "heart disease" and that broad description can mean mitral valve disease, arterial sclerosis, etc. A gluten intolerant person can have many, many symptoms and illness that are caused by the "poisoning" of gluten as you can see by my signature and many others on here. I was misdiagnosed and sick for so long that I was malabsorbing nutrients and getting damage to nerves, eyes, and other organs. You will see my story repeated by many others on here and we are all on the road to healing. Thank you for the link, it is one of the best that I have seen in describing the whole condition.

[Lister]

on the same lines, what if you dont present any of the genes for intolerancy? my dx took mutliple blood tests for panels to see my genes and my antibodies and so forth nothing was found abnormal finally he gave me the dx of gluten sensative, i asked if it was the same thing as intolerance or celiac and he says no they are way off. anyone what what that meens? do i reseave less damage as someone would with celiac disease? or is it just a laden form of intolerancy forming

[Guest Robbin]

I think your symptoms over the past few months sounded so much like what other people on here experienced-that you are definitely gluten intolerant. Whatever you call it, gluten is poison to you. Anyone who reads the book, Dangerous Grains will realize that gluten is nasty stuff and imho no one should eat it. edit--Also, all of the genes linked to gluten intolerance and celiac disease have not been identified.

[jayhawkmom]

While there is a difference between Celiac and Gluten Intolerance, they both require the exact same diet. So, why the lable difference? My blood tests indicate that I have a gluten intolerance, but they don't suggest that I have Celiac Specific Damage. That's a good thing. I figure, by going gluten-free now, I can avoid the "end stage" damage and save my intestines.

I have no idea if I have any of the genes or anything..... but I know from a brief trial when the word Celiac was first thrown at me (in regards to my daughter, not myself) that I felt MUCH better without it. I've had the blood tests, I'm scheduled to see a GI - but I'm done with Gluten. I want to feel better now... not in 6 weeks.

Anyhow, the people here are SO knowledgable....I'm so glad to have found this place!

[Dyang]

While there is a difference between Celiac and Gluten Intolerance, they both require the exact same diet. So, why the lable difference? My blood tests indicate that I have a gluten intolerance, but they don't suggest that I have Celiac Specific Damage. That's a good thing. I figure, by going gluten-free now, I can avoid the "end stage" damage and save my intestines.

I have no idea if I have any of the genes or anything..... but I know from a brief trial when the word Celiac was first thrown at me (in regards to my daughter, not myself) that I felt MUCH better without it. I've had the blood tests, I'm scheduled to see a GI - but I'm done with Gluten. I want to feel better now... not in 6 weeks.

Anyhow, the people here are SO knowledgable....I'm so glad to have found this place!

This really is my point: I want to feel better sooner so I should start gluten-free diet now instead of continuing to eat gluten and wait for a couple of months of doctor and lab visits.

Moreover, what if, after a few months when the test results came in negative for celiac, then what? I will still go on the gluten-free diet to see for myself anyway.

If my conditions improve after gluten-free, I may then decide whether to comfirm celiac disease.

I have been to two doctors and undergone many lab tests already; otherwise, I would not go on gluten-free first.

[CarlaB]

If you think you will want more testing, you should do it prior to going gluten-free because you need to be eating gluten for the tests, except for something like Enterolab. Trust me, once you are off gluten, you will not want to go back on it for more testing if it's a problem for you!!