Are There Degrees Of Gluten Intolerance

[Susan M-G]

I just read the list for newbies.. It is overwhelming. I also don't think my symptoms have been as bad as some of those I've been reading about. Maybe I'm not celiac at all, but before trying to stay gluten free, I felt like I was being poisoned, had brain fog, bone, joint, hair (at the root) and skin pain/tenderness, and felt exceedingly tired. I also had constant gi problems which I'd rather not describe. That was a long time ago, and when a gastroenterologist could find no causes, I was referred to other drs. Eventually a rheumatologist suggested I had something related to lupus, though not lupus itself. In the meantime I did an elimination diet and found that I did great when I eliminated wheat from my diet. The rheumatologist then tested me for celiac, which he said was negative. Now two or so years later I learned that the testing has to be done when you still have gluten in the diet... But after being diagnosed with "sort of lupus" I've been on plaquenil and most of my symptoms are much better, except the gi stuff. A new rheumatologist, (after moving to a new area) didn't think I have sort-of-lupus, and suggested the whole problem could be celiac. So the testing has resumed, and I'm scheduled for an endoscopy after "borderline results" on blood tests. hmm

Any insights? Thanks! Susan

[CarlaB]

Welcome!

If you're not eating gluten, you need to eat the equivalent of four slices a day of bread for four months for damage to show up on your biopsy. Even then, you can have a false negative, so might want to see how you respond to the diet.

You very well could have celiac as the symptoms you describe sound like it -- including the lupus symptoms. There are not degrees of having it ... you either react or you don't. There are degrees of damage, so the sooner someone reacting to gluten gets off it, the better. Many of us are very ill due to the fact that we had it for so many years before diagnosis.

[AndreaB]

The degrees come from beginnings of reactions/damage to a lot of damage.

Not everyone has obvious symptoms to gluten. We didn't and now only have about a day of tummy/bowel distress and it's over. Others feel the effects of being glutened for a couple weeks or more. We are at the beginning of the spectrum.

[tarnalberry]

There are definitely different degrees of having outward symptoms - my symptoms weren't nearly as bad as what you describe your symptoms to be.

There are definitely different degrees of internal damage even given the same length of time of active disease and gluten consumption - studies of biopsy results have show thing, and it appears to vary by genetic contribution to the disease and other genetic and environmental factors.

But there is no degree of having or not having it. Either gluten causes an intestine-damaging immune reaction or it doesn't. It's a very binary issue. How the body expresses that immune-damaging immune reaction may varying, but whether or not it happens is what says whether or not you have celiac disease. The prescense (or lack thereof) of that reaction is what sets you up for the related increased risk of other autoimmune conditions and poorer health.

[LilleesMom]

This is very helpful. With my 8 month old recently diagnosed only thru the blood test; we have had AMAZING results by eliminating gluten. I am nursing which is pretty much the only way she gets the gluten and though its been hard to resist bread (good bread that is:)) and it is much more expensive she is so much better now. We spent weeks in the childrens hospital only to leave with a scar from an unnesscary surgery and still scratching our heads:(. I can't even explain the vomiting episodes she was having that seemed so random. I have been researching as much as I can and I am so glad to know there are people and answers here!! Thanks