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About mcbphd1

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  1. Thank you Cyclinglady. I don't have other sensitivities as I am fine using the gums, eggs, and other ingredients in my own cooking. I am just supersensitive to very low levels of gluten. Sometimes inulin causes some issues, but they are very distinct from a gluten reaction. I have not tried Canyon Bakehouse, though, so will see how it works, thanks KEMB.
  2. Hi! I fall into the category of super sensitive celiacs. Most of the time, I follow the Fasano gluten elimination diet and I do just fine on that diet. Occasionally, I have to travel and it would be very helpful to have a sandwich bread that I can purchase and eat without having a reaction. So far, I have reacted to Udi's and Schar. I'm wondering if anyone on the forum who is super sensitive has had any success with any variety of gluten free sandwich bread? Thanks!
  3. The "negative positive" is referring to the following statement of <15>. It is giving you the range, that negative is less than 15 and positive is greater than 15.
  4. Thank you both. I have had allergy tests, done the elimination diet, and had a million other tests. Twice the doctor rechecked the celiac antibody panel and all were below normal limits.The only abnormal test results are borderline low vitamin b12, D, and calcium, and a low thyroid and sometimes cranky gallbladder but no stones. The doctor added some Armour to my Levoxyl, which helped some things. I'm ok until I'm around others in social settings when they are eating. In my house, our kitchen and all dishes, appliances, etc., are completely gluten free. I have one room in the house (the old playroom) that I never go into where the kids are allowed to have pizza and burgers that they bring in in paper containers and throw away in an outside trash can. We use grain free dog and cat food. All of my hair and beauty products are organic and gluten free. If I am getting gluten somewhere it must be from food products labeled gluten free, like Pamelas flours. I have not eaten in a restaurant in over a year. It is beyond frustrating!
  5. I am in my mid-50s and was diagnosed with celiac 3 years ago after about 10 years of mysterious vitamin deficiencies, thyroid issues, and finally gastrointestinal symptoms. I was diagnosed through the antibody testing - they were all sky high, so there was no doubt. Since I had already been gluten free (or so I thought) for about a month, the GI and I agreed a biopsy was not necessary for confirmation. Like many newly diagnosed, it took a few months to figure out how to eat gluten free, and then another year to understand that gluten free in restaurants isn't safe for me. I am now very sensitive to gluten, and I am perfectly fine preparing all my own food even though it takes a lot of time. My diet consists of primarily chicken, fruit, veggies, limited dairy, and brown rice. I eat almost no processed foods - occasionally use Pamela's flour and sometimes Breton's gluten free crackers when I travel. Despite all of this, I am still struggling. I am now finding that I cannot even be in social settings where people are eating gluten or drinking beer. Last weekend, I went to a party at a friends house and took my own vodka/orange juice drink. I did not eat anything at the party. I sat at a table where people were eating bread and cheese, and where kids were coming by with cake and cookies - I sat back from the table a few feet and sipped my drink. About 48 hours later, I had my typical gluten reaction, which for me is severe abdominal pain, constipation and abnormal bm, vertigo, anxiety, high blood pressure, and feeling like I have the flu. Took several days of trying to figure out what happened, but then I remembered the party. I had the same experience last fall going to a pub and drinking water while my friends ate burgers. I am concerned that I have had to become increasingly socially and professionally isolated, and this seems to be contributing to some depression. I no longer attend work events where food is served, go to bars or restaurants, or attend professional conferences. I even find that when I watch my son's tennis team, I get sick if the kids are near me having sandwiches and cookies. Can this really be gluten exposure or am I losing my mind? Are people touching surfaces like bathroom doors, bleachers, table tops, etc., and then I touch it and get contaminated? Is the wind blowing tiny crumbs into my drink? How in the world does someone like me cope with having a professional career (I'm a college professor and researcher), having a non-celiac family, and maintaining friendships without being sick all the time???
  6. There is an autoimmune condition called sjongroen's (I think I spelled that correctly). It causes dry mouth, eyes, and overall dryness of mucus membranes (joint pain and constipation can occur). Since so many celiacs have more than one autoimmune condition, this might be part of what's going on. I think the diagnosis is one of elimination of other disorders. One of the famous Williams tennis sisters has this, but I don't remember which one. I'm pretty sure I have both, but convincing my doctor has been difficult. Treatment is usually just plenty of hydration.
  7. Thanks All, I am doing most of the above with the exception of a couple of things. First, I'm not taking digestive enzymes - anyone have a brand they like or could suggest? Would simple bromelain be OK? or does it have to be a mixture? Also not completely avoiding starch and sugar. I don't eat seed due to diverticulitis - the list of foods is getting pretty short. What about Bob's Red Mill Baking mix - do you all consider that "processed"?
  8. Hi All. I have been lurking for two months, trying to learn as much as possible. Was diagnosed via blood test with super elevated antibody levels on all 4 markers. I saw my GI early last month -- he says since I was already gluten free for a month and the blood levels were so high, no reason to go back on gluten and do the endoscopy. My symptoms were: on and off pernicious anemia, elevated platelet counts, mildly elevated liver enzymes, and fatigue, all for several years. My diagnosis came after I got to the point this summer where anything I ate caused pain. I had awful bloating, gas, constipation, and pain in the mid abdomen as well as in both sides. The gastro symptoms started about 2 years ago - I had a diverticulitis attack that I had a lot of difficulty recovering from. The celiac diagnosis made a lot of sense - I figure I have had this for somewhere between 4 to 7 years before finally being diagnosed. For the first two weeks gluten free in early September, I immediately felt better. The gnawing pain to the right of my navel went away after a few days, and the gas seemed to get better. However, since then I seem to have gotten worse, and have had a lot of continued pain, gas, and bloating. I am gluten free and 95% dairy free - occasionally I have small amounts of cheese or butter, or small amounts of dairy in salad dressings, like ranch dressing. Otherwise, I have been avoiding dairy because my GI doc said that many people with celiac are temporarily lactose intolerant. I am concerned about my continued level of abdominal pain and bloating - I got better at first but then seemed to get worse. I'm still learning about cross-contamination, so I have probably eaten things like chips at restaurants that were fried with sopapillas. Here is my question - my GI said that my food sensitivities should clear up after about 6 months. Should I give the gluten-free diet 6 months to work before assuming that some other food is causing pain? How long did most of you have pain after going gluten-free? Is two months too long? Because of my recent history with diverticulitis, any abdominal pain is very stressful, as I am always worried about having another attack. Another question - currently I am taking medium level doses of magnesium and vitamin A, high doses of vitamins C, E, and zinc, l-glutamine, mega doses of probiotics (VSL3), ginger tea, DGL, and a teaspoon of miralax each day. Should I be supplementing with anything else? Has anyone tried aloe vera? Slippery elm? Does a liquid diet help? Thanks!