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So aside from the title, I’ve still been experiencing diarrhea, and severe abdominal pain. The gi said she thinks I have ibs d. I’m worried it might be refractory celiacs. I’ve gone 100% gluten-free for these 7 months as I feel like s$#& and want to be well. I’ve changed my kitchen tools, pots, pans etc. I have also changed all my beauty products to gluten-free ones, including lotion, makeup, shampoo etc. I don’t eat gluten and I don’t even eat out or at others houses. I don’t understand why I still have the antibodies. My ONLY idea is maybe a course of antibiotics I took for mouth surgery (military isn’t very nice about my celiacs and wouldn’t change my medicine even if it said “contains wheat” on it so I didn’t Nima test it. Although that was 7 days and I felt the same dying the period I was on those as I did these last 7 months. I have been glutened early into my time so I know how that feels for me so I really don’t think it was the antibiotics. Either way I still feel like crap and was wondering if anyone has some insight. At this point I’m like dang I should just eat gluten it wouldn’t be any different ( I def wouldn’t but I laugh about how it wouldn’t change things for me)

Hi, I was sort of diagnosed with a blood test about a month ago. Both my DGP and tTG were very high, (thumbs print away from having Celiac Disease - that's what my dr. said) but I was on a pretty much a gluten free diet for about 2 months prior to the test. I am asymptomatic so once in a while I would take bites out of my husband's pizza or bread but not often. I'm not sure how long it had been the last time I had eaten gluten prior to the test. I have no idea that she was testing me for Celiac Disease. When reviewing all of the 20 labs she did on me, she went thru the celiac disease results by saying: " never, ever, ever eat gluten again, not even the size of a grain of rice." That was it. I was in a state of shock and didn't ask questions. Plus while she probably is a brilliant doctor, she had poor bed manners so I have switched doctors again. I have been sick for the past three years. First I had Epstein Barr Virus for about nine months. After about three months of having EBV, I contracted pneumonia and one month after that the peripheral neuropathy started up and continued to get worse to the point the pain was so great I wanted to die. Then I was better for a few months and then I got sick again and then was tested and diagnosed with Chronic Lyme Disease. My LLMD thought it was reactivated due to extreme stress in my life. The LLMD only did abx, so I was on that for 18 months and saw a little improvement. I switched doctors and she was the one who did the blood test. I am furious that she didn't prepare me for the test properly. I hate the thought of having an endoscopy when I'm still so sick. I've been on a strict gluten free diet for about a month. I do have mycoplasma pneumonia and am on abx for that so my exhaustion and feeling sick could be from a number of things. However, my neuropathy is getting slightly better. I still have it but it's down to a 6 instead of a 12 on the pain level scale. Granted her tests did show that I have a leaky gut and huge malabsorption problem which may take awhile to heal. Again no instructions on what I should do. My body needs a major overhaul. What should I do about getting a proper Celiac Diagnosis diagnosis? I'm terrified that eating gluten for two months will make neuropathy worse again. Do I need to have a biopsy to have a correct diagnosis? Is a correct diagnosis that important if I decided to go completely gluten free? So confused. Any thoughts are appreciated.

Soooooo, how many of you realized that Sodium Starch Glycolate (a common filler in EVERYTHING) is considered gluten and toxic to those of us who have severe Celiac? I learned the hard way..... After being bitten by what they think was a deer tick (had a round bullseye rash) I was put on what was supposed to be a gluten free drug. I was SICKER after taking the drug...dawned on me I had better research the filler ingredients. Turns out to those very sensitive, SODIUM STARCH GLYCOLATE is in the same family as gluten and cannot be tolerated. Now.....go to www.glutenfreedrugs.com and they list SO many drugs that indeed CONTAIN this hidden gluten! I have been getting sick and not understanding why.....now I know. Please let everyone know about this hidden substance that should be included in the GLUTEN TOXIC SUBSTANCES that make us so very sick