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Finally-45

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Everything posted by Finally-45

  1. Finally-45
    I was diagnosed through the usual tryptase blood, urine, and mast cell count in a skin biopsy, but I'm still in the early stages of exploration and treatment--a boatload of other procedures still to come because my symptoms are frequent and relentless. After getting through the initial shock and pity party, I simply feel better just telling others in the...
  2. Finally-45
    Correct, I'm pseudo-allergic to the entire grass family, including cane sugar. If the mastocytosis diagnosis had come before the Celiac diagnosis, it would have been easier. Instead it's been a gradual drama of one elimination after another. Many people with mastocytosis are fine with just removing wheat, barley, and rye from their diet. I'm in the category...
  3. Finally-45
    Passover wines are grain free. Keep in mind that intestinal mastocytosis is commonly accompanied by other gastrointestinal conditions. One common symptom of mastocytosis is intolerance to alcohol.
  4. Finally-45
    It's my anniversary of being diagnosed with Celiac and now that I have a 2nd diagnoses for Mastocytosis--meaning I'm also on a low-histamine diet, boy am I having fun! That's putting it lightly so I can keep my sanity. I had to go grain free during this last year, finally found out why I don't tolerate corn. Top 10 crazy things people have said to...
  5. Finally-45
    T.H. wrote on October 2013 - 08:31 PM regarding a recent diagnosis of Mast Cell Activation Disorder. Interestingly, my symptoms are very similar. I was recently diagnosed with mastocytosis. All grains are my triggers. I haven't posted in a while because I found that though I have Celiac, I knew I was reacting to more than just wheat, barley, and rye....
  6. Finally-45
    For the people who are having similar symptoms from corn as wheat/barley/rye gluten, there appears to be no coincidence. While the chemical make up of each grain differs, our bodies' responses do not. Thus, we insist that a connection must be made and/or there needs to be more categories to the condition. I think we've safely concluded on this forum that...
  7. Finally-45
    I know of someone with the hair loss due to thyroid disease also, common with Celiac.
  8. Finally-45
    I remember when I first joined this group after my Celiac diagnosis, I read a post from a lady who said she couldn't tolerate any grains except for occasional white rice. I thought to myself, bless her soul! Well here comes another one. I don't know if I'm having a bad week or what. I had a bowl hot cereal--teff grain made with pineapples and pure...
  9. Finally-45
    It's not totally an urban myth, some Celiacs are also intolerant to corn--in any form. I don't think it's a coincidence. My corn intolerance is worse than the Celiac since I have anaphylaxis even if a food has potassium citrate as an additive. I can't touch a cola or anything else with caramel color with a ten-foot pole.
  10. Finally-45
    Open Original Shared Link It doesn't look like anyone has brought this up here, but it is interesting that a few people posted comments about the man possibly having Celiac. It would be nice to know if there is a way to get a message to him to get tested. Though I had a chuckle about what co-worker became the "gas-monitor," my heart immediately went...
  11. Finally-45
    I have 2 close relatives who, after my diagnosis, wanted to get tested and their doctors refused. Though in my opinion they have Celiac symptoms, especially long histories of complaining about upset stomachs, constipation, thyroid problems, etc., their doctors felt they don't have the symptoms. It boils down to the health plan actually. In each of their...
  12. Finally-45
    I agree with the comment about genetically modifed corn, but as one of the Celiacs with a corn issue, I kinda think everyone should treat corn the same as oats. My doctor said to avoid wheat, barley, rye, and oats for one year and then try oats to see if it caused problems since about a third of Celiacs have reactions to oats and others don't. (I'm in...
  13. Finally-45
    It's the corn.
  14. Finally-45
    Correct, Cluck U Chicken, just like pizza joints and bakeries, aren't worth the effort. You're sure to get a joke to share within 30 seconds of trying to order. On the other hand, I went to a nice hot wing bar once that doesn't bread their wings and doesn't use corn products in their sauce. I must have seemed so happy and giddy that I bet the employees...
  15. Finally-45
    Gelatin! Funny! No matter how hard you annunciate, someone will still think you're saying "glucose." Me: I tried a gluten-free diet for a few weeks and then ate a cookie.... threw up and had horrible diarrhea....sick for days. I think I need a celiac test. Nurse: What? Me: You know, when people have to be on a gluten-free diet... Nurse:...
  16. Finally-45
    I vote for the rice cakes. I stopped buying them too. (It would be nice to know if some companies take the time to read our discussions!)
  17. Finally-45
    My gastro said that fructose intolerance can be different for each person.... I have the worst IBS reaction from corn, but it's mild for other fructose sources. I hope you feel better soon.
  18. Finally-45
    I agree that Chipotle is a great compromise to eat with a mixed group or with someone for the first time. Be sure to visit the restaurant forum.
  19. Finally-45
    The carmel color reaction is to corn. I also can't tolerate most vinegars; red wine is ok, but I tend to avoid all of them. Corn vinegar is just as bad on my reactions as gluten-contaminated vinegars. Check out your reaction to corn.
  20. Finally-45
    You may have multiple problems, try reading the posts on the forums for people with other food sensitivities. (If it's true, try not to scream as loud as I did! You can scare people like that.)
  21. Finally-45
    I grew up with so much joint pain (and no real cause other than an occasional doctor who would suggest arthritis) that I only recently realized just how often I thought being uncomfortable was normal. Joint pain is the only Celiac symptom I'm positive I had since earliest childhood, since it's the identical joint pain I still get if I have even the slightest...
  22. Finally-45
    You may find that hanging around people (dating or not) who are open to health food/vegetarian restaurants are easier to eat with. Most places that cater to people who really think about what they eat are also great places for gluten-free eating.
  23. Finally-45
    Thank you VERY much for posting this. I suspect that just as doctors suggest that SOME celiacs have to avoid oats, they need to start saying, SOME celiacs have to avoid oats and/or corn. I'm sure there is more research to be done.
  24. Finally-45
    Frequent urinary tract infections and cystitis are problems for women with Celiac.
  25. Finally-45
    More from me... Getting on a strict regimen to completely eliminate corn (which is much, much, much harder than gluten because it's not regulated) made me feel the healthiest I've ever felt in my life. It's worth your effort if you have the same problem, even if you have to give away $50 worth of vitamins and eat really plain, "whole" food at restaurants...
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