Gluten Sensitivity

[Mack the Knife]

I was diagnosed with Coeliac diseases six months ago and I haven't gotten better despite a rigid adherence to a gluten free diet. My specialist ran the coeliac serology blood tests again and tells me I still have active coeliac disease - which isn't good. I have been very careful what I eat, and I don't ever cheat. But he says that I could just be one of those coeliacs who is ultra-sensitive to gluten.

I'm not sure what this actually refers to. Does it refer to physical symptoms or actual intestinal damage? I know that some coeliacs react very violently to gluten while others don't. But I always assumed that this was just the superficial reaction and everyone's intestines got damaged the same way whether they reacted or not.

I don't have violent reactions and the symptoms I do have seem to be an ongoing result of the intestinal damage rather than an immediate reaction to gluten intake. I tend to feel low level crappy for most of the time rather than having acute symptoms.

So is there a gluten sensitivity that makes some people more susceptible to intestinal damage than others? Can some people ingest foods with extremely low levels of gluten safely while others can't?

[kwylee]

Not sure if this is the same for you, but I have found a NUMBER of things I am sensitive to since testing positive for genetic sensitivity to gluten (also tested positive for casein sensitivity at the same time).

If I ingest even a small amount of ANYTHING that is processed, preservatives, etc., even if gluten/casein/soy free, I feel dizzy almost immediately, and that low grade dizzy "weird" feeling will follow me for about 18 hours.

Have you considered going back to basics, with just a few foods you trust, then feel good, then add one thing at at a time? I just recently realized a suspicion that potatoes may be making me feel weird, so taking nightshade vegetables out of my diet for now.

Sorry if I am telling you everything you are already doing. But one thing is for sure: SOMETHING is causing this. I am starting to think that those dealing with issues due to gluten are the best detectives, hope you will detect what your "something" is.

[kwylee]

So is there a gluten sensitivity that makes some people more susceptible to intestinal damage than others? Can some people ingest foods with extremely low levels of gluten safely while others can't?

I also meant to tell you that I communicated on another forum with Dr. Charles Parker, who answered my post asking for help when I asked how long it could take my intestines to recover so that I wouldn't get "dizzy" each time I ingested even the smallest amount of gluten. He said that everyone is different but it could take up to a year to know how truly sensitive you are, or if the way you feel is due to the healing process. Now, keep in mind I do NOT have celiac disease and also have pretty noticeable neuro symptoms only so we differ in those ways, but like Dr. Parker said, only time will tell, everyone is different.

[Ahorsesoul]

I suggest you start reading all labels on the food you are eating even if you think they are gluten free. Then proceed to all personal care products: toothpaste, breath mints, mouthwash, makeup, lotion, everything that touches you. Check everything that goes into your mouth including who you might kiss and touch. Have you replaced all your wooden and plastic items in the kitchen. Have a toaster that only is used for gluten free items? Either have new or do not use pots and pans that have an inside coating that maybe contaminated with gluten. Do you eat at fast food places? Very easy to be contaminated there. Friends and family who maybe cooking for you might be unintentionally contaminating you because they don't realize something like chicken broth or a seasoning mix might contain gluten. Remember to check your drinks. Not all soda, coffee or tea is gluten free. When at a bar remember that some people can not drink some types of alcohol even if it has been distilled a million times and it says there is no gluten.

For some even a tiny bit of gluten will keep them from healing. It could come from something so small like cutting your gluten free sandwich on a contaminated surface.

[T.H.]

There was a link to a study in one of the more recent Celiac.com newsletter that looked at intestinal damage and outward reactions, actually! I've been trying to find the link, but so far, no luck. You'd probably be able to find it if you go over the last few newsletters, maybe?

From what I recall, the study had celiacs volunteer to eat varying amounts of gluten. Some people have very severe outward reactions, some had minimal outward reactions. Then, they were all examined to see what type of intestinal damage occurred. The intestinal damage differed from person to person, although there was no correlation between severity of outward reaction and damage. You could have a huge reaction, and very little damage, or damage and reaction could match. And the people who had minimal outward reactions DID sometimes have a lot of damage, too. It sounded as though the researchers hadn't expected this at all, and they didn't have an explanation for why it happened that way.

Based on the study, it would seem that people do differ in how much damage they get from eating gluten - I believe all the study participants ate the same amount of gluten. So, I'm guessing that's what they mean by sensitivity? Not entirely sure, to be honest.

[Mari]

Go to the FAQ page at Enterolab.com which tests for the celiac disease Genetic Markers (alleles or some times called genes). Depending on which markers you inherited, one from Mom and one from Dad a person can have a more or less serious form of celiac disease. There are many different markers and not all of them predispose to celiac disease and if you have one that does and one that doesn't then you will likely have less reaction than a person who inherits 2 celiac markers. There are several other genes which are not tested for and influence both the chance of acquiring the autoimmune disease and influence its severity. If this confuses you please ask more questions.

[Skylark]

I asked you this before but you might have missed it. Have you tried going off casein?

I linked a study in the other thread you started that showed cross-reactivity between casein and gluten in the serum of some celiacs. (Of course, now I can't find the study but you can look in your other thread for the link.)