whistle

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Everything posted by whistle

  1. I want to get a celiac panel done, so I'm writing a list of symptoms for my doctor. Since I don't compare my pooh to that of others, I'm not sure what's normal. Sometimes I have white "clouds" attached to the outside of the stool, and floating in the toilet. I was wondering if that is fatty stool, or if it's normal or something else.
  2. whistle

    Oddest Reaction To Gluten?

    Maybe the number itself has no significance, other than it's a number that makes you notice it. Maybe the whole point is that you take notice. When I notice stuff like that, it gives me faith that there's more going on here than meets the eye. And that helps me get through difficult times.
  3. whistle

    Oddest Reaction To Gluten?

    Or maybe a reference to emergency - 911 I've had weird things like that happen to me, but I just started the diet so haven't been glutened yet. I'll see what happens. .....life can be so strange....
  4. The earliest gastroenterologist appointment I can get is July 23rd. If I have a chance at a diagnosis from a biopsy, I don't want to ruin it, but I'm also anxious to find out if a gluten-free diet would help me. I'm disabled by my symptoms. Among many other things, I don't remember what it's like to have energy. I think I want to try the diet right now, so I was wondering if it made sense to go gluten-free for three months, then back on gluten for the next three. If I do react positively to the diet, I would have something convincing to tell the doctor, too. Part of the reason why I don't want to throw away the chance at a positive biopsy is that I know my father would take that more seriously than the theory of his space-cadet daughter. He had a pre-cancerous polyp removed from his bowel. He also gets diarrhea after some meals - garlic, he figures is one culprit. He has arthritis, and fainted once for no apparent reason. He also has other things which I so far haven't heard related to celiac: labyrinthitis and non-melanoma skin cancer. I'll bring it up with my family soon, and my sister will likely be willing to investigate it for herself. She has depression, hair loss, tinnitus, occasional diarrhea, occasional dizzy spells, bloating, distended abdomen, and she also fainted once for no apparent reason. All advice and commentary is appreciated. Thanks.
  5. whistle

    Dental Problem

    This is the first time I've heard of this. (I'm new - just been gluten-free for 4 days - improvement already). The bone in my gums is receding and I have very sensitive teeth. I also have a growth (I forget what it's called) though it hasn't changed in years. It's like there's a tooth trying to come out sideways, but there's no tooth.
  6. I started a gluten-free diet 4 days ago, and I've already seen improvement in one way. As I mentioned earlier, I've been taking a prescription acid reducer in order to prevent constant acid indigestion. If I stop taking it for a couple days I get so acidic it seems to expand beyond my digestive system - like my eyes feel acidic. I stopped taking the pills 2 days before the diet, and it made me feel horrible as usual. On the first gluten-free day the acid started to subside, and for the last 2 days I've had no stomach trouble at all. This is astounding! I've had slight indigestion after eating dairy so I've cut that out as well. I guess I'm onto something! I suppose it could be gluten intolerance, or wheat allergy, but I think it's celiac. I saw two pictures of DH that look exactly like my rash. Thanks again for all the help! Where would I be without you?
  7. lol rinne Wow, that CT scan sounds brutal. Thanks for the advice. I gave up on the rash but I started a gluten-free diet 4 days ago, and I've already seen improvement in one way. For the past three years I've been taking a prescription acid reducer, in order to prevent constant acid indigestion. If I stop taking it for a couple days I get so acidic it seems to expand beyond my digestive system - like my eyes feel acidic. I stopped taking the pills 2 days before the diet, and it made me feel horrible as usual. On the first gluten-free day the acid started to subside, and for the last 2 days I've had no stomach trouble at all. This is astounding! I've had slight indigestion after eating dairy so I've cut that out as well. I guess I'm onto something! Well, if lunch is impossible, there's always Perrier with a twist! Hey Magician, any luck with the support group? That celiac.mb is possibly the bleakest looking site I've ever seen. Maybe you can save it! I'm a creative person, too. I'm mainly a visual artist, and I write and sing a bit. Bon appetit!
  8. Unhappy, I'm so sorry for your suffering. When I had cancer in my teens, it was very frightening, and for a long time I just thought I'd probably die soon. But I didn't. I hope you don't give up, and get all the help you can for your health. My heart is with you.
  9. Thanks, you guys! I have a lot of symptoms of celiac, but I couldn't get the whole blood panel, just transglutaminase, and I tested negative. My gastro appointment isnt until July 23rd, and I was told I was lucky because it usually takes a year. Did you guys have trouble with stuff like that, too? I know we have doctor shortage here in Manitoba (and a whole lot of enthusiasm for grain!) I've actually been doing something quite silly for the last few days. I'm trying to grow a rash! I lived in Toronto for 12 years, and often got a rash that really sounds like it could be dermatitis herpetiformis. Since I moved back here to my home town I don't get it much. I don't know if it was the higher humidity in T.O. or maybe that I drank way more beer (my roaring twenties! ) Anyway, I sometimes get it from band-aids, oil paint, etc. so I thought if I could cause an outbreak I could get a diagnosis that way. But I think it's just too dry and cold. It starts to appear, but I can't get it to blossom. I guess I'm nuts! Well, back to plan A, which is to go on the diet for 3 months, then do the challenge. It's nice to meet some fellow Manitobans. Maybe someday we can do lunch! Keep warm
  10. Hi Magician and rinne! I found this for Brandon: http://www.celiac.mb.ca/mbchapter/brandon/index.html The site isn't very informative, but there are a couple of contacts on there. I live in Winnipeg, and am trying to figure out if I have celiac or not. Thanks for the link for celiac support in Winnipeg. Good luck!
  11. Hi Jitters, I don't know if I have celiac yet, but I've had thyroid problems for several years. Because of that, I see an endocrinologist. That may be a good idea for you, too.
  12. Unhappy and Cath, I realize you are already recognizing the seriousness of celiac, but I still felt compelled to throw my two cents in. I'm 40 and have been very ill for eight years. I just started learning about celiac a month ago, and discovered that all my problems could be explained by it. One of the things I read was an article from 2006 which said they recently discovered that people with celiac have a higher risk of thyroid papillary carcinoma (a type of thyroid cancer). I had my entire thyroid gland removed when I was 17 because of papillary carcinoma. I also had affected lymph nodes removed, and two radiation treatments. I was not old, and I'm still not. My peers are as spry as anything. I only feel old because of my many symptoms, most of which I didn't have in my 20's. I had a great time in my 20's but my fond memories are not of burgers. (There is a certain chicken burrito, but never mind that lol) Depression is a symptom of celiac disease, so if you have depression you're not asymptomatic. Depression can certainly make everything more difficult, and make you care less about yourself. Maybe the depression will at least improve if you stick to a 100% gluten-free diet. Somebody else on this site made the suggestion that when you go to restaurants don't try to explain that you have celiac. Just say you're allergic to gluten. Nobody can question an allergy. What if it was something that would close up your throat? They don't know. You might still get glutened, of course, but there's no need to be embarrassed as though you're being difficult or picky. You're not. You're taking care of yourself and your future. I really, really want mine. I'm sorry. I really don't like scaring people. Best wishes!
  13. I forgot to mention that I looked at a lot of DH sites and the pictures they showed never really described my rash. It manifests itself differently in different people. But then I found the following link that has a larger selection of photos, which you might want to check out. (I don't yet know if I have DH, but my rash looks exactly like DH3 and DH4 except that it's usually on the inside of my elbows.) Click on a picture if you want a closer look. http://www.lib.uiowa.edu/hardin/md/dermnet...petiformis.html
  14. Just in case you start looking into whether or not your levothyroxine contains iodine, I thought I'd try to prevent possible confusion. The reason iodine is an essential nutrient is that iodine is an essential component of thyroid hormones. "Levothyroxine" or "thyroxine" is the same thing as the thyroid hormone, "T4". The "4" in T4 stands for the number of iodine atoms in each molecule of the hormone. So, thyroxine MUST contain iodine. If it doesn't, it's not thyroxine, and it's useless. So keep taking the thyroid meds, and don't be afraid of the iodine in them. If you want to reduce iodine in your diet, there are foods you can avoid, keeping in mind that some iodine is required for thyroid function. Here's one link that may be helpful: http://www.whfoods.com/genpage.php?tname=n...ent&dbid=69 Of course, if your rash is DH, then you need to cut out gluten and not just reduce iodine. Best wishes, and good health to you and yours!
  15. This is very interesting. A month ago I got a neg celiac blood test (couldn't get the whole panel - just transglutaminase). My doctor tested for a bunch of other stuff too. The one thing that was a little high was my white blood cell count. Two weeks later I had another test and it was still high, so today I got WBC tested once again. I don't know if it's T lymphocytes or not. I'm scared. My gastro appointment isn't until July 23rd, and that will likely be just a preliminary consultation. So my plan is to go off gluten for 3 months, then back on.
  16. I'm so grateful for your guidance. It sounds like a plan. I'll start the diet. I'll let you know how things go. It's true I haven't felt very photogenic lately. I'll take some pics too ---->
  17. whistle

    Does This Make Any Sense?

    Thank- you both for your insights. I'll look into all those possibilities.
  18. I have gotten "eczema" all my life. When I lived in a more humid climate I got it all the time, and never knew what triggered it. Now I'm in a dry climate and I only get it from contact with stuff like oil paint, adhesive bandages, etc. I get very dry skin but can avoid outbreaks of the rash. I don't know if it sounds like DH or not. I'd mainly get it inside my elbows and between my fingers, unless it was triggered by contact with something in another area. It's very, very itchy and bumpy and often oozes clear liquid. In my elbows it would become a big, red, bumpy patch. I have many other symptoms of celiac disease. Where I live I couldn't get the whole blood panel, and tested negative on the one test they do do. The earliest gastrenterologist appointment I can get is July 23rd. Does my rash sound like DH? If so, would it make sense for me to create an outbreak and get a diagnosis from a dermatologist? Thanks
  19. Hey, I just came up with a peculiar idea.... I have gotten "eczema" all my life. When I lived in a more humid climate I got it all the time, and never knew what triggered it. Now I'm in a dry climate and I only get it from contact with stuff like oil paint, adhesive bandages, etc. I get very dry skin but can avoid outbreaks of the rash. I don't know if it sounds like DH or not. I'd mainly get it inside my elbows and between my fingers, unless it was triggered by contact with something in another area. It's very, very itchy and bumpy and often oozes clear liquid. In my elbows it would become a big patch. Does that sound like DH? If so, would it make sense for me to create an outbreak and see a dermatologist for a diagnosis?
  20. How true, how true. I've often shoveled toast, bread, and soda crackers into my face to settle my stomach, and if it worked I wouldn't have to take rabeprazole sodium every day to keep from having acid indigestion 24/7. You know, after a few days of taking that medication I honestly said this to myself,"What's that weird feeling in my stomach? Oh, it's comfort!" And the more run down I get, the more I grab sandwiches, cereal, and processed foods because I'm too tired to cook. Yikes! I'll do my best with my dad, and I'm more optimistic now that you guys calmed me down.
  21. Thank-you, Turtle and Raven, partly for the information and partly for just helping me clear my head. It's hard not to get confused and freaked out when brain fog and anxiety are symptoms of mine. Unfortunately, where I live they don't do the celiac blood panel, they just do one of the tests (transglutaminase, I believe) and I tested negative. I don't know if they do the stool test here, but if they do I'd be pleased to do the icky deed. How conclusive is it, and what are they checking for? Outside of that, I don't think I can wait to start the diet. You're right that my recovery would be proof enough for my family. And I'll try going back on gluten later to see how I react to that as well. Teaching an old dog new tricks might not be so hard if my dad has the possibility of getting garlic back. And of course he doesn't like the sudden reaction he gets from food, just out of the blue, and he doesn't really know why. "There must have been a bit of garlic or maybe oregano or...something..." Good health to you and yours!
  22. That's very interesting, Nora, thank-you. And thanks again, raven. I realize I shouldn't diagnose myself before I've even started the diet, but it sure would make sense. A few months after my thyroidectomy I moved away from my prairie home to downtown Toronto (which is a sprawling metropolis). I was very healthy there, other than getting a rash fairly often. Twelve years later I moved back to this grain Mecca, and started to get sick a year later in the autumn. It started with brain fog, then depression. My thyroid levels were normal at first, but about 16 months after getting sick my TSH was flipping right out. It was so high my doctor thought it must be a mistake, but it wasn't. (for those who don't know, high TSH means low thyroid hormone.) I'd never had to change my thyroxine dose before, but after this I couldn't get a decent balance for six years. I asked my endocrinologist why, and all he said was, "Funny diet?". I didn't think I had a funny diet, but an absorption problem would add up to a funny diet. I got a nasty intestinal infection about three years in, and my guts have been a mess since. The TSH has been pretty good for two years, but my recovery has come to a plateau. I'm sorry if I'm rambling when I don't even know if I have celiac yet. I guess I feel the need to get this stuff off my chest. Your feedback is great. Thanks for listening. OMG! I just found out I can't get in to the gastroenterologist until July 23rd! I was hoping to start the diet soon. I don't know what to do. Ugh!
  23. Hi again. Thanks, for the help regarding testing. And thanks for all the other info and support that everyone shares on this excellent site. I tested negative on my blood-test, though I could only get one, rather than the whole panel. I'm going to a gastroenterologist (not the bizarre doctor I mentioned before). I'm hoping doctors aren't too out of touch with celiac around here. I'm in a small city on the Canadian prairie. In the summer it's surrounded by wheat, barley and rye so far as the eye can see. The more I read, the more I'm convinced I have celiac disease. I just keep coming across more indicators. I read an article from 2006 saying there was new evidence that may connect celiac with thyroid papillary carcinoma, which is the type of cancer I had. I saw a picture of a baby's torso and instantly my mothers voice appeared in my head saying, "when you were a baby you had a big barreling chest..." Maybe I'm becoming a fanatic, but I'm so desperate for an answer. I'm also really scared, though, because of how dangerous celiac is, and I already had cancer 23 years ago. I was wondering, if I actually do have celiac but get negative tests, can that be a good sign, because it means the damage hasn't progressed very far? Thanks again
  24. Thank-you, ravenwoodglass! Wow - 30% - that's huge! Is the percentage of false negatives on biopsies similarly high? Also, when I described where I live it made me think of another question. Does anyone know if celiacs who live in a grain producing region can react to inhaling particles in the air during threshing time, or if there's a lot of grain processing going on in the region.
  25. "About 6 months ago at the suggestion of a friend I went to see a wellness doctor and was given a physical and tested for other vitamin deficiencies of which I have a few. I was also tested for hypothyroid and found to have a problem there as well, but didn't want to take the meds and have tried alternative solutions, none of which have worked yet." [i don't know why my quote isn't in a box like the others. I thought I followed the instructions.] Hi nfred, I'm not really "in the know" about celiac (I'm impatiently awaiting the results of my bloodtest) but I do know a few things about thyroid (I had my entire thyroid gland removed 23 years ago due to cancer). I don't know what kind of meds the doctor suggested to you, or what kind of alternative solutions you've tried, but here's a bit of info: If your hypothyroidism is caused by iodine-deficiency, then foods high in iodine might help. These include seafood, seaweed (kelp), and iodized salt. Sea salt does not have a high iodine content naturally, but apparently there are iodized brands that have come out. There are iodine supplements also. People who know more than me about celiac may be able to say whether or not celiac can cause iodine-deficiency. The reason iodine-deficiency can cause hypothyroidism is that iodine is a component of thyroid hormones. If your hypothyroidism is not caused by iodine-deficiency, then the treatment is hormone replacement. There are various brands of synthetic thyroxine (T4) which are exactly the same chemical composition as the T4 your body produces. The non-synthetic option is desiccated pig thyroid gland. I don't call it "natural" because it's not natural for a human to take pig hormones. I take a synthetic called "Synthroid'. I'm personally not interested in trying the pig gland because you can't tell exactly how much hormone is in each grain, and I am sensitive to very tiny amounts. The pig gland also contains T3 and there are major disputes about whether T3 should be taken. (T3 is the active form. T4 is converted to T3 by the body as needed. I've read that taking T3 can cause the person to be hyperthyroid for part of the day, which is not good. The pig gland also contains a different ratio of T3-T4 than human glands.) That said, I have been to thyroid forums where some people say they've had more success with the desiccated gland than they did with the synthetic, so perhaps it's a matter of the individual. And there is a lot of debate going on about T3, but I don't want to complicate this post any more than I already have. In reading about celiac lately, I've learned that celiacs have a higher likelihood of having autoimmune thyroid disorders such as Hashimoto's thyroiditis (& vice-versa...somebody correct me if I'm wrong). Hashimoto's is treated with hormone replacement. If you're taking hormones, it takes a while for them to build up (or decrease) in your system. When I change my dose, I get a blood-test about 3 months later. Mainly, I wanted to make sure you knew that kelp and such are not alternatives to thyroxine. Kelp and other iodine-rich sources can only help with iodine-deficiency, and there are other causes of hypothyroidism. Both celiac disease and thyroid disease have a plethora of possible symptoms and some of the symptoms are the same. Thyroid symptoms are caused by thyroid hormone imbalance, which affects every system in your body. If your doctor is suggesting thyroid medication, it's likely thyroxine (levothyroxine sodium) and is the same chemical as what your thyroid gland produces. If you're diagnosed hypothyroid it means you don't have enough of this hormone in your system, and believe me, you need to have the right amount. Also, Advil (ibuprofen) can be hard on the stomach, as is Aspirin (acetylsalicylic acid). I have a very acidic stomach and I can't take those, or I end up in a lot of pain. Is it possible for you to take Tylenol (acetaminophen) instead, or for a while to give your stomach a break from the Advil?