Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up


Advanced Members
  • Content Count

  • Joined

  • Last visited

Community Reputation

2 Neutral

About mcbphd1

  • Rank
    Top Contributor

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. mcbphd1

    Glutened by peanut M&Ms ?

    I eat peanut M&M's often. In the past couple of weeks, I feel like I am reacting to them with a glutening type reaction. Wonder if they had a bad batch recently...
  2. I have been mystified for about 2-3 years as to how I continue to have celiac-reactions while being fastidiously gluten free. We have a fully gluten free kitchen. The kids bring fast food into one back room of the house, eat it on paper plates, and dispose of them outside. I do not eat in restaurants or at other people's houses. I have tried Fasano, low Fodmaps, and ketogenic diets. I have avoided all grains. I have checked pet foods for gluten. I have checked all dental, cosmetic, and other products. Despite all of that, I still have reactions like I have been glutened. I have neurological, psychological, cardiovascular, and ultimately gastrointestinal symptoms. Finally, after much research and visiting a very good allergist, it seems that I am indeed reacting to things other than just gluten. First, I am allergic to eggs. After eliminating eggs for a month, my stomach and gastro issues are 80-90% improved. Second, it appears that I have a mast cell disorder - mast cell activation syndrome, or MCAS. This means I have greatly exaggerated reactions to exposures to miniscule amounts of triggers, including gluten. It also means that I have allergic-type and anaphylactic reactions to foods sometimes but not always, and that my reactions are very similar to being glutened. It explains why Xanax has always been so helpful - I always thought it just helped with the anxiety associated with reactions, when in fact, it is also a mast cell stabilizer. I wanted to encourage those of you who are still looking for answers not to give up - I am six years post-diagnosis. I am in fact super-sensitive, but I also have other issues and am working on making sure I have identified all of my identifiable triggers for MCAS flares. As some of you know I'm sure, sometimes there is no one trigger for a flare, just an accumulation of environmental, food, and stress triggers. I'm interested in knowing if others here have both celiac and MCAS, and how you are dealing with it.
  3. mcbphd1

    Enzymes and Probiotics

    The first study linked above by knitty kitty is indeed legit! Mexican Conacyt is like our National Science Foundation - a prestigious and heavily peer-reviewed federal funding source. I react to corn and corn flour but not to tortillas and chips. I wonder if the processing (which I think includes lyming) de-activates the protein? I have used corn occasionally in cooking, and tend to treat it like a condiment, not a side, but this has me re-evaluating. Edited comments: Second study is in a questionable journal, one that has been widely noted recently to be a "pay to publish" Journal. However there are still legitimate scientists who publish there. Regarding corn in the US: last summer we drove through Kansas and Iowa on a trip. Wheat was everywhere! Towns that were too small to have a gas station had a grain elevator. Guess what was growing right next to wheat fields, grain processing plants, etc? That's right - young corn plants. I'm thinking all those grain storage places, farm equipment, even the soil, is completely saturated with wheat! I don't know if it's a problem, I just know that my son said "oh my gosh mom you could never live here, there is what everywhere"
  4. mcbphd1

    Toaster oven >>> Weeping on the floor

    Ditto the ketogenic diet recommendation. My husband, who does not have celiac disease, was having odd mood swings and anxiety after his heart attack. The keto diet has made him a different person. Actually, it has returned him to his "old" self!
  5. Oh, and it's good to know that others react to glasses in restaurants, etc., and that I am not completely crazy.
  6. Thank you all! I confess that I also dig down in the stack of coffee cups and lids. I'm thinking that even though I am an obsessive hand washer, when I leave the gas station with coffee, I probably touch several surfaces. Also, I suspect that the folks who make the coffee get in a hurry and might use the same gloves as when they make burritos. I can't believe it's come to this. Cyclinglady your post made me smile - I am a faculty member at a large university and I definitely notice I seem to have more issues when classes are in session. Don't know if it's stress or small amounts of gluten from the kids in classes, on doorknobs, stair rails, etc. Like the healthy biome comment - like when my kids used to go to daycare, building a strong immune system. I think I was tested for additional AI's a little over a year ago. We know I have thyroid issues and metabolic syndrome, hence another reason for the low carb and grain free diet. I've lost 20 pounds and otherwise feel pretty good except for some fatigue and what feels like repeated gluten exposure. I'll keep trying to figure it out, thermos is a good idea. Once the recruiting visits are over, I can completely avoid campus dining halls. I just added L-glutamine which has helped somewhat in the past.
  7. I need some help! I was diagnosed with celiac via very high blood antibody levels about 5 years ago. Over the years, I have discovered that I am supersensitive and react to very small amounts of gluten. I have adapted my lifestyle in several ways to cope with this - I follow a primarily grain free, low carb diet, I cook everything that I eat and eat very little processed food (maybe sometimes a pre made salad dressing that is labeled gluten free), I do not eat out or even go to restaurants, and I either pack food or go to the grocery store to purchase food when I travel. I also buy and use only gluten free vitamins, beauty products, cleaning products, and pet food. I have tested via elimination for other food sensitivities, and only avocados and bananas are an issue (fodmaps), as is brown rice (probably due to too much arsenic). Despite all of the caution that I take, I continue to get glutened, particularly when I travel. After 3-4 years of this happening, I have come up with a couple of thoughts, and am wondering if any of you who are super sensitive have found that you had similar issues: - When I travel, I almost always have coffee from gas station coffee pots while on the road. Some of these places also have burritos, hot dogs, etc. Is it possible that the people who make the gluten-y food also make the coffee (or tea) and that the coffee gets contaminated in the process? Maybe they have flour on their aprons or don't change gloves? - Also when I travel, it is usually to a high school athletic event, usually tennis. The stands are filled with kids eating sandwiches, cookies, and other crumbly, gluten filled foods. They sit near me, sometimes hug me or talk to me, and use the same rest rooms, etc. Could I be getting gluten exposure through other people eating it in close proximity? - Finally, lately I have accompanied my son on college recruiting visits. We usually have lunch in the athletic dining area. I don't eat the food, but I do bring my own and eat on their plates and silverware. I mention these three things because they typically only occur when I am traveling and they don't occur when I am home, and because 9 times out of 10 when I have a problem with gluten, it is when I travel. I can see where one of the flukey exposures might happen once, but it seems odd that this would happen every time travel.
  8. When you went gluten free did you switch to a lot of rice and rice products? I have had hair loss twice over the past several years. Once was due to low thyroid. The second time was possibly due to over exposure to arsenic in brown rice and rice products - I also had skin issues and severe anxiety and brain fog. After lots of testing, my doctor and I concluded I was slowly poisoning myself from eating 1 - 1.5 cups of brown rice a day. I am now grain free except for corn and the hair loss stopped after a few weeks, brain fog cleared in a couple of months .
  9. mcbphd1

    Low level arsenic poisoning?

    Agreed on moving to white rice. I did request and got a new celiac panel done last January - no elevated antibodies, also, normal B12, folate, iron, electrolytes, and slightly low vitamin D. I am becoming convinced that ketogenic or paleo is the way to go for me. Maybe after things heal and my system is clear of toxins, I can add back some carbs. I'll be interested to see what my A1C is after 3 months of low carb. The publications I'm reading on elevated arsenic levels are very interesting. If nothing else, it's a great excuse to get in the hot tub and sauna!
  10. I was diagnosed with celiac 5 years ago. After the first year of stumbling with the gluten free diet, I have become more and more cautious about exposure. I no longer eat out or have processed foods of any sort. I don't go to restaurants at all or large sporting events with food everywhere. I have tried a low FODMAP diet, Fasano diet, and avoided soy, dairy, corn, etc., at various times. Despite all of this, I have continued to have declining health and gastrointestinal problems. Most of my symptoms resemble gluten exposure - tingling fingers and toes, muscle and joint pain and weakness, severe fatigue, abdominal pain and bloating, alternating diarrhea and constipation, headaches, vertigo, asthma, severe anxiety attacks, ...you get the picture. Recently, I have had a lot of hair loss and skin lesions - blisters on soles of feet and hands, and a DH-type rash on back and chest. While this has gone on, my glucose has continued to slowly climb, finally crossing the threshold from pre-diabetic to diabetic. I am only about 10 pounds overweight. Because of this and the fact that I tried everything else, I started a very low carb diet. No grains, carbs only in fruit and small servings of potatoes. Within about 10 days, I noticed a significant lessening of symptoms. I started doing research into symptoms of low level arsenic poisoning. I have them all! I was eating around 2 cups of brown rice or rice products per day. I was also eating almost exclusively chicken - usually not organic. I am close to concluding that my issues are not low levels of gluten exposure, but instead are due to chronic arsenic ingestion. I'm wondering if any of you have had similar issues, and if so, have you tried avoiding or reducing rice intake? Has this improved your health?
  11. 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.
  12. 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!
  13. 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.
  14. 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!
  15. 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???