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T.H.

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Everything posted by T.H.

  1. T.H.
    I had the same experience as PegLeg84 when it comes to food intolerances. I do not tolerate grains well, but for whatever reason, if I have corn specifically, it increases my anxiety levels unbelievably. I will literally wake up anxious for no reason the day following corn consumption, and feel anxious for the entire day, sometime two if it was a lot...
  2. T.H.

    ARCHIVED So Discouraged

    T.H. replied to across's topic in Super Sensitive People

    Hugs, hon. For some reason, I think there's something more upsetting about getting sick when you are being careful, you know? If you were not taking as much care and you get sick, it's more like 'dang it, I knew i shouldn't have done that.' But when you are taking care - and often missing out on foods and activities you may like as a result - it can...
  3. T.H.
    We've run into this with my daughter at her grandmother's house. She has gotten really sick there before, eating her own food entirely, and then even when she had her own food, her own utensils, AND her own prep area for her food. Very frustrating, because she gets SO sick. In my experience, the biggest issue to find out WHY it's a big issue for his...
  4. T.H.
    I'd second taking a 24 hour tryptase test, yeah. I'd add a 24 hour urine test for prostaglandins and histamine levels, too - anyone getting this would really want to look up how to keep it cold, though, and how the lab is supposed to as well, and make sure the lab understands this. There's information on the web. It's a rare enough test that many times...
  5. T.H.
    Congratulations on getting diagnosed. Such a relief to at least have some better handle on where to go from here to stay healthy, yeah? Have the doctors and you had any luck on feeling better since you were diagnosed? For anyone else reading this, sometimes the MCAD symptom information can be a bit harder to find than the mastocytosis symptom information...
  6. T.H.
    Open Original Shared Link Even if you don't use this product, I'd recommend reading this, because while this product - which uses barley malt but is labeled gluten free - is not certified by the GFCO, it is made in a facility that is certified as gluten free by the GFCO. So, a potential concern for other products made in the same facility. There is...
  7. T.H.
    This is the latest information on diagnosing MCAS/MCAD that I know of. It was put out this February - Open Original Shared Link I imagine that may be of some help to her. ALSO, the mastocytosis society will answer questions from doctors - they have some experts who have agreed to do this - about mastocytosis AND MCAS or MCAD. So she may want to check...
  8. T.H.
    If you've got a good control over it, the only reason I can think might be for emergency situations. If you ever, got forbid, got hospitalized for something, were in an accident, that sort of thing, you might need a diagnosis to lend weight to what you need to do to stay healthy. Or at least have a doctor who knows some of your needs and can back you...
  9. T.H.
    I found it easiest to get on a paleo kind of diet when I started having trouble with other grains, especially rice - it's just in nearly everything, as I'm sure you've seen. Just starting off, for recipes - this gal had some nice recipes when I was looking for things to make: Open Original Shared Link
  10. T.H.
    Ouch! Sympathies. Although OMG - am I remembering right that you get headaches from perfume sometimes? Now it makes sense!
  11. T.H.
    Yeah, it does look like that - I wonder how common it will turn out to be whenever it is eventually researched, you know? Very glad to hear that you are doing better. I'm hopeful for myself. I got a nasty virus and all my symptoms went a bit crazy, unfortunately. :-/ Even on a low histamine diet now, I'm getting things like allergic reactions to...
  12. T.H.
    Bartful, there was a thread on this in one of the MCAS groups recently and, well, this is a list of what points were made, best I can remember! i was trying to learn about this as much as I could, too! 1. Depending on why a food was on the 'bad' list for a low histamine diet, some people had trouble with it, and some people didn't. There were some...
  13. T.H.
    The newest information down the pike on this condition. :-) "A concise, practical guide to diagnostic assessment for mast cell activation disease" by Afrin and Molderings Published February 2014 Open Original Shared Link And hi, Jebby! :-) Just wanted to add something of my own personal experience as someone else with MCAD and Celiac Disease...
  14. T.H.
    Oh, thank you for the link - I haven't seen that one before. :-)
  15. T.H.
    Our daughter's GI doctor told us that there's a good chance she's not immune to Hep B. However, he didn't recommend testing OR getting re-vaccinated, because he said the chances that she will have a non-response again are so high. He is currently recommending to his patients that they simply be aware that this is a potential issue, and he's going to keep...
  16. T.H.
    I just came across some information that I thought might be of interest in those who are gluten free but have a lot of symptoms and seem to react allergically to many OTHER foods. There is a somewhat controversial condition known as Histamine Intolerance that is speculated to involve abnormally low levels of DAO, the enzyme that destroys histamine. If...
  17. T.H.
    This may be a shot in the dark, but did your doctors ever check you for mast cell activation disorder(MCAD) or mastocytosis? I was recently diagnosed with this, and a lot of my experience resembles your own. My symptoms grew worse after going gluten free, although I eventually found a way to improve them, I just didn't fully understand why. I had to...
  18. T.H.
    For lasagna noodles, Jovial makes these, too. I haven't seen any in the stores but you can order them online: Open Original Shared Link For mustard, it's surprisingly easy to make, if you have a safe vinegar. For a fat, we ended up learning how to render our own fat. Many butcher areas at the store will save the fat for you if you talk to them beforehand...
  19. T.H.
    I wonder if they were referencing the same study as the Celiac Disease Center is for their 60% number: Open Original Shared Link Unfortunately, the celiac center doesn't reference the research specifically, either. But the research center makes more mention of the fact that diet compliance can affect the results. The study results seem to vary, otherwise...
  20. T.H.

    ARCHIVED Corn Too?

    T.H. replied to wystearya's topic in Food Intolerance & Leaky Gut

    Re: testing The one thing that's good/bad about the DH is that IF you get gluten contamination, which is almost certain to happen eventually, then you'll likely get a DH flare up, and THEN you can get tested. I would think it might be useful to find a celiac knowledgeable dermatologist NOW. Go in to see them, talk to them about wanting to get tested...
  21. T.H.
    Thanks! I've been reading about the DAO enzyme just the other day! My own lack of typical anaphylaxis was why it took me so long to get diagnosed, too. I guess with the MCAD thing, you can be a 'leaker' or a 'shocker.' The shockers go into anaphylactic shock easily. The 'leakers,' which is the category I fall into, have cells that leak their contents...
  22. T.H.
    1desperatelysaved and GottaSki - My IgA levels are normal, my IgG levels are normal, and my IgE levels are normal, too. I contracted a little virus a few months back, nothing big, but it sent everything into a tailspin so I was back at the doctor's looking for answers. A new doctor had just come into town a few weeks back, who specialized in both Immunology...
  23. T.H.
    plantains are another good source of carbs, and you'll get carbs from veggies, too, just not as much. I'm grain free, too, as is my daughter, and potatoes, plantains, and fruits are our main sources. But yeah, you have to eat a lot of them.
  24. T.H.
    I've been MIA for quite a while now, and I just thought I'd update as to what I've been doing, because I just got a diagnosis that is SO weird, but it explains everything AND it could be relevant for a few folks here, so I thought I'd share. I react to crazy small levels of gluten, and have written in the past that I turned out to ALSO react to crazy...
  25. T.H.
    So sorry your family is not that supportive - sometimes, I think that can be the hardest, when you have celiacs who are NOT as sensitive and they use THAT as a measuring stick against you. My mother-in-law has a celiac friend, who eats out all the time and all she does is ask if they add gluten to anything and avoid that. She takes no care whatsoever...
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