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saintmaybe

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by saintmaybe

  1. saintmaybe
    Certainly have no advice to give on Celiac and chronic pain, but have you been evaluated for other rheumatic diseases, Lyme disease, lupus, spinal arthritis, or Crohn's and ulcerative colitis which can and do present with musculoskeletal complications? Fibromyalgia, while there is a lot of evidence that it's a real disease, is a diagnosis of elimination,...
  2. saintmaybe
    Yeah. One is at home and one has to be administered at the doctors office. I'd take the office administration if the benefits were worth it, but if the two aren't categorically different, I'd prefer at home administration.
  3. saintmaybe
    Anyone taking these for RA, Spondylitis, JA, or PA? I'm in the process of getting diagnosed with ankylosing spondylitis, and my doctor wants to skip straight to biologics because my case is now progressing quickly and antiinflammatories don't work for me. I'm curious as to what your experiences are, which one you'd recommend. Are the costs, side effects,...
  4. saintmaybe

    ARCHIVED Hair!

    saintmaybe replied to bartfull's topic in Coping with Celiac Disease

    Wow, that has a name?! I just looked up pics, and I've had that my whole life and no one has ever said anything to me about it. Thats good to know though, about the b12, both for the tongue and the hair. I am vain, and freak out about every new gray.
  5. saintmaybe

    ARCHIVED Hair!

    saintmaybe replied to bartfull's topic in Coping with Celiac Disease

    Sorry to hijack the thread, but what on earth is geographic tongue? I have visions of a tongue with a little suitcase and passport. :-D
  6. saintmaybe
    Depends on where the pain is. I had lower back and hip pain I at first thought was a direct result of my job working in a garden center. Then I found out my brother has ankylosing spondylitis, and lo and behold so do I. That is a WORST case scenario, and It's doubtful that's your specific issue. It could be the early stages of bursitis or sciatica, generalized...
  7. saintmaybe
    Some members here have difficulty with airborn flour, which of course can get all over everything. If the restaurant at which you work uses it for baking or for creating a nonstick coating, there may not be much you can do to avoid it. I've always felt bad for gluten intolerantsnin the food industry, because gluten is everywhere. I know I felt terrible when...
  8. saintmaybe

    ARCHIVED Hair!

    saintmaybe replied to bartfull's topic in Coping with Celiac Disease

    I use FRS chews for b supplementation. I dont know if they're corn free, but they're available at GNC. I think they are, because any kind of corn makes me sick as a dog and i feel fine on these. My hair is growing back quickly, but also curly and dark red, instead of my old blah brown. =)
  9. saintmaybe
    For advice and support, I direct you to a thread from our own members in 2009, who talked about the prescriptions they used in treating their own mouth sores. The drugs mentioned are abreva, and valtrex. Valtrex is an actual antiviral used specifically for herpes simplex and zoster infections, and can be obtained easily from a primary care physician...
  10. saintmaybe
    An article on cold sores, gluten intolerance, the immune system and herpes simplex from the Livestrong foundation. summary: gluten intolerance causes a low immune system causes a herpes outbreak in SOME people. In others, it's a topical reaction to gluten. Cold sores are different than canker sores, which are purely the result of a screwed up immune system...
  11. saintmaybe
    That was such a great article! That's exactly what I had, apthous ulcers that were so painful I could barely open my mouth to eat or talk. I haven't had issues with either those or cold sores sine I went gluten free, and I am pretty strict about cc.
  12. saintmaybe
    There have been studies done demonstrating upwards of 70% infection rates. Babies can become infected from their mothers either via the birth canal or from breastfeeding. It's not a stretch to say that someone might be having a flare up of the virus due to gluten exposure, sine the entire immune system is revved from gluten inflammation. The way the virus...
  13. saintmaybe
    Where are they specifically? The corners of your mouth or on the inside lower lip, or....different sores are indicative of different things, which is why I ask. Corner of mouth usually means general nutritional deficiencies with emphasis on b and d vitamins. Inside the mouth is a flare up of systemic herpes simplex 1, which most people have, and can be triggered...
  14. saintmaybe
    I don't have dh,but I understand about the lack of care from doctors. I went to a dermatologist and got hit for a huge bill to boot, for them to suggest using clearasil for the chronic acne on my back. Thanks, doctors, the thought had never occurred to me. /sarcasm They then also laughed at me when I asked about the connection to gluten sensitivity. I swore...
  15. saintmaybe
    I second everything babs said, especially giving yourself time and eating whole foods. You might also have additional food intolerances, which you can discover for yourself, or you can see a naturopath to help test for them. One thing I will add is slow bile, which I thought was a load of hooey until my dad started getting gall bladder attacks. Good digestion...
  16. saintmaybe
    There are a couple things that come to mind that wouldn't show up on standard assays in a doctor's office. One is pyroluria, which is I admit, controversial but gaining ground as being accepted in the medical community. In this disorder, one product of hemoglobin biosynthesis that is not excreted in affected individuals binds preferentially to zinc and...
  17. saintmaybe
    I went through pretty much the exact same thing, except I was four or five months gluten free. I decided I HAD to know if it was celiac disease, and did do a gluten challenge. In the end, my celiac diagnosis was negative, but I have an enlightened gastroenterologist, and was diagnosed with gluten sensitivity. In the U.S., this is still not a formally...
  18. saintmaybe
    I'm drinking Kefir at least a few times a week, which is basically probiotic yogurt milk. That's it! It's extremely yummy, and comes in a lot of flavors commercially if that's your bag. You can also make it very easily at home, and cut way down on the added sugars by using stevia. It's also very filling without making you bloaty. I know this isn't ideal...
  19. saintmaybe
    @kareng In that case, the best way to go is to write a letter of concern to the store manager, cc'd to the corporate office. In my experience, and I do work in retail for significantly more than 8 dollars an hour, that is the most efficient way to get an individual stores concerns addressed. There are troubled stores, but corporate won't know about it...
  20. saintmaybe
    I think the name of the store says it all. Part of what you're paying for when you shop at a higher end grocery store is the shopping experience. This generally includes higher standard of cleanliness. In a retail location, the reason a store can afford lower prices is by hacking at anything deemed unnecessary. They're perennially understaffed, and the people...
  21. saintmaybe
    It's fairly normal for women to experience GI issues during their periods, regardless if gluten sensitivity status. This is because the drop in progesterone which triggers menses, causes a corresponding rise in prostaglandins. This hormone signals the uterus to contract and expel blood, but higher concentrations of prostaglandins can cause local contraction...
  22. saintmaybe
    I had gluten free oatmeal cookies two days ago, sold in the local market,and wow. Terrible idea. Not only did I get terrible digestive glutened symptoms, I went completely bonkers. Anxiety through the roof. Anger and irritation the same. Marked aggressive impulses. That was not a good idea. So I know where you're coming from.
  23. saintmaybe
    Opinions and research vary on this topic. I am personally topically gluten free, with papers to back up my decision. Most doctors will tell you it's not necessary except for lipstick/balm. There are others on this board who point out that your eyes drain into your sinuses and thus into your stomach, so gluten free eye makeup is a good idea. Also, if you touch...
  24. saintmaybe
    I was taking topomax, and that was making my gluten sensitivity a million times worse I just discovered. I took myself off of it, and immediately felt a million times better. You're really supposed to taper, but I couldn't stand the side effects. Topomax is for migraines by the way. If I continue to have headaches, I'm going to request Maxalt in May or Juneat...
  25. saintmaybe
    That sucks. It just leads to a heads I win, tails you lose situation with the insurance company. What you've done of course is take the option they wanted you take, and not bought their product because they've priced you out of the market. If you HAD, though, they could have claimed any minor claim was evidence of continuing disease process. Get a cold? Definitely...
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