Wow. This could be the reason why I have not gotten well. I have horrible allergies, seems like I am allergic to life. But I also still have a lot of unresolved systemic issues that doctors just cannot figure out. I am going to look into this further. Thank you!
I thought it was the corn doing it. I stayed away from whole kernel corn, but would use corn starch (that was dumb!) for thickening. I agree it is the dang GMO stuff that is being put out as safe to eat when it isn't.
Hi there, Loey
I'm not quite sure how long since your diagnosis. I initially got better within about 9 months, and I no longer had the antibodies in my blood workups. I was very sick when I finally got a diagnosis at 48 years old. I actually had some alzheimer type symptoms, and could not find my way home from the grocery store 2 blocks from my house. But, then, I couldn't walk without assistance, so I wouldn't go to a store alone I did start feeling somewhat normal about 2 years after diagnosis, but then I just started getting the pain in the joints, the tendons, muscles cramping, and I now go through flares that are very much like some MS symptoms. I don't have the tender points of fibro - my entire body is tender to touch!! Anyway, just wanted you to know it can take some time for the intestines to completely heal and so you may not get to feeling great for awhile. It all depends on the damage done and what else you may have going on in your body. Most people who have one autoimmune disease are susceptible to developing others, so we can have the Celiac under control, but another could still be there. Getting a doctor to figure out what that is ... now, that's the hard part! I just saw my new doc yesterday, and she thinks I may not have healed completely and my intestines aren't able to absorb nutrients properly. B-12 and D are the biggest suspects because my numbers were in the low normal. Since I take supplements, she is thinking I need to get injections of B-12. More blood work was done, and now I wait another month to find out the results before trying anything new. After 10 years of fighting with doctors, I'm a little tired of it all.
You can test false negative with the Celiac blood tests and you can also have a biopsy come back "clean" - I did - 3 of them, as a matter of fact. There is a test for the IGA deficiency, too. You sound so much like me. I've had shingles 3 times, now. Although, I'm not getting as sick as I used to, but I think that is because my immune system is in hyper mode right now. Also, the anti-rheumatoid drugs (methotrexate and the like) won't work against the Celiac auto immune symptoms. I had a Rheumy once who knew a lot about Celiac and its' treatments. Basically, she told me that it is still such a newly recognized illness (old disease, but they just realized it is not at all rare), that doctors just do not know all of the symptoms and what all could be happening besides the gluten intolerance. For many, staying off gluten does the trick. For many others, it does not. But, the ones who it seems to affect the worst, as far as not getting better being gluten-free, are the ones who were sick for a long time and went undiagnosed. I once had a really good veterinarian when I had horses. He said "if I waited for anything to show up in my patients' bloodwork, they'd all be dead". I wish more doctors were aware of that.
Don't feel too bad. I was called a "cunundrum" by the last doc. I just today was able to get an appointment with a brand new internist in town. I go in a couple weeks. I hope this one will try to figure this out and not just say "oh well". That article on the food additives and chemicals was really informative. Gave me something else to consider. Thanks. I so wish I could just eat like "normal" people.
Up late: Your post could have been written by me!! Although, I went undiagnosed for nearly 50 years so I had tremendous damage to my entire body (I was at the emergency room in a total body muscle spasm gripping my right side from the horrible pain when a surgeon suggested a gastro for me to see) when I was finally diagnosed. I've had shingles twice since diagnosis, and I continue to suffer with tingling/numbness in the hands/feet and I get terrible muscle spasms still - very painful - also have really bad tendonitis and muscle weakness. Sometimes I can barely make it up the stairs, sometimes I walk up no prob. Makes no sense to me. Blood tests are normal - but then they were normal when I was in the middle of a thyroid storm, too, so I don't think relying on blood work for me works real well. But, I can't get any docs to believe that my blood doesn't show much. I mean, even all the vitamin blood results showed me in the "normal" ranges when I was so severely sick from the Celiac. I wish I knew what was going on, because I've now been labeled with Fibromyalgia (I don't have the necessary tender points) and "chronic pain syndrome" and I can't even get a doctor to see me in the new city we just moved to because of it. I'm better than before I went off gluten, but I am not "well". I hope you find some answers, because I can't even get in to see a doc, now.