HouseKat

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Everything posted by HouseKat

  1. This article mentions "the DQAI*0501 allele", can anyone tell me if that is the same thing as DQ5 which my genetic tests indicated that I have? http://www.internalmedicinenews.com/news/gastroenterology/single-article/consider-celiac-disease-in-autoimmune-disorder-patients/9e1f371327.html
  2. I just had my second endoscopy on Friday and like the first time the worst part was when they put in my IV. After that they wheeled me in, did the throat spray, then knocked me out. They used Demerol and something else on me for the sedation. Kate
  3. EH's dining card includes many items which are gluten-free and leaves out many that are not. You'd be much better off using the more accurate cards sold by Triumph Dining (http://www.triumphdining.com/). Kate
  4. I'm seeing new posters use the term "gluten-free" and it's getting on my nerves a bit. Every time someone uses it, it's like a little ad for Hasselbeck's book. The forum already auto-magically changes every "g f" to "gluten-free" - can we do the same with "gluten-free"?
  5. HouseKat

    Fresh Mint Ideas?

    Years ago, I was house sitting for a friend and they had tons of mint in their yard. I found a mint sorbet recipe in a Sunset magazine recipe book, it was fabulous. Great on those hot summer days. Kate
  6. Here is some good information and links about 504 plans: http://www.americanceliac.org/studentsCD.htm Some guidance for the school cafeteria staff: http://www.fns.usda.gov/cnd/guidance/speci...etary_needs.pdf Kate
  7. HouseKat

    Continuous Diarrhea

    I'm so glad that you brought that up! Since going gluten-free, I sometimes have unexplained bouts of diarrhea and I had been focusing on "finding the hidden gluten" to no avail. Years ago, when I was diagnosed with dust mite allergy, the allergist said that my reaction was the worst he had ever seen for that particular allergen. Since going gluten-free, my environmental allergy symptoms have almost disappeared and I haven't been as vigilant in my dust mite elimination efforts. You've given me a wake-up call, samcarter. Thanks!
  8. HouseKat

    PCOS And Celiac

    My sister and I both have PCOS, but have opposite symptoms. In me, it causes very heavy, lengthy periods that I must take BC to regulate. She has to take BC to even have a period at all. After 15+ years, I decided that I don't want to spend the next 15-20 on the Pill, so I've had the Essure and Novasure procedures done. Starting in July, I won't have to worry about pregnancy anymore and I won't have heavy periods (maybe none at all) so I can discontinue BC. Yay! Kate
  9. OMG, the gas, I forgot about the gas! That was also a huge problem for me, but it started clearing up as soon as I went gluten-free. Kate
  10. The constant, painful diarrhea which had been the norm since middle school went away within a few weeks. I had my first consecutive solid bowel movements in over 20 years. (Not exactly an improvement, but I had to urinate more often because all that liquid wasn't exiting through my bowel anymore.) My chronic fatigue went away, as did the "arthritis" in my shoulders and hips. People started telling me how much better I looked, because I had previously always looked kind of grey and sickly. No more sores in my mouth. My nails now grow 2-3 times faster than they did before. Kate
  11. Karen, you are a very lucky person. You had 41 good years without it and you're getting diagnosed in less than a year's time. You weren't referred to a shrink because the doctors thought that you were crazy. Your doctor actually knew what tests to run. New gluten-free products are coming out every day. Celiac disease is actually being discussed in the mainstream media. Some restaurants have gluten free menus...for crying out loud, there's even gluten-free pizza at several chains now! For many of us, a diagnosis of celiac disease has been a blessing, because the end of our suffering was finally in sight. Kate
  12. Bethe, Ask for a copy of the test results, I'll bet that you do have a celiac gene, just not one of the two recognized in the U.S. I have one of those "unofficial" genes and neither of the "official" ones, so my doctor put in my records that I have "gluten-sensitivity" and must be on a gluten-free diet. I don't have the "gold standard" diagnosis, but I have something to back me up, when and if I need it. Kate
  13. Kath, Yes, I can totally relate. After nearly 25 years of symptoms, to finally find out what to do to relieve them was HUGE! (I was just a little bitter about the fact that over the previous 15 years I had asked several doctors - including a GI specialist - about celiac disease and been rebuffed...but what's past is past.) I'm now working on educating people about the disease, so others don't have to go through what I went through. Kate
  14. I don't watch The View regularly, but I've seen her mention it on there, most often during food segments. For instance, one time Whoopi was doing a segment about new food products and one thing was a gluten-free pizza. Elisabeth heard "gluten-free", swooped in from stage left, grabbed up the plate and ran off with it. I fell out! Kate
  15. I would start documenting your efforts to inform her about this. Write down dates and times of any conversations you have had about it that you can recall. Send her via certified mail or some other trackable way a letter outlining your concerns. This is in preparation for having a court order that she have the kids tested, if she continues to refuse. As a person who suffered with celiac disease from at least the age of 12 to the age of 34, I implore you to make sure that they get tested as soon as possible. My growth was stunted, I suffered from depression and neurological issues, I was told that it was all in my head...my teen years were hell and my 20s weren't much better. I fear the long-term effects of 20+ years of damage. Don't let this happen to your kids. Kate
  16. Matt, Make sure that your doctor is putting something on the record about your need to be gluten-free. Whether he writes in there that you have Celiac or calls you "gluten intolerant" or "gluten sensitive", just make sure that it's in there so you have backup if you ever need it. My big fear is that I will be hospitalized and be given gluten containing medicines or supplements because of the general ignorance re Celiac disease here. (I don't have the "gold standard" diagnosis of Celiac, but my primary care doctor put it in my records that I must eat a gluten-free diet.) Kate
  17. I was surprised how much my urinary output increased when I went gluten-free, all that liquid had been going to my bowels before. After a year and a half later, my weight on the scale is the same but people are always commenting on my "weight loss" and how good I look now. Kate
  18. My current situation is that I have to go to a business meeting out-of-town every other month where they have basically refused to accommodate my needs. They have several caterers that they use and one or more of them offer options that I could eat, but they ignore my plight and keep ordering in stuff like pasta and sandwiches. At one meeting I just didn't eat, at another I ate the fruit salads out of three unused lunches. I brought my own lunch to the last two meetings.
  19. Happy birthday and may God bless you today!

  20. HouseKat

    Places To Eat In Indianapolis

    Woody, Here are some recommendations from Indy-area celiacs: http://glutenfreeindy.com/restaurantmenus/index.htm I have eaten at BD's Mongolian BBQ several times and it has always been a great experience. Kate
  21. Mica, I let a GI doc talk me into going back on gluten for testing after three months gluten-free and it was awful. I lasted four days and thought that they were going to have to hospitalize me. It was one of my worst episodes ever. Don't do it. Tell them that if they can see you right away you will come in, if not, cancel the appointment. You won't have the "gold standard" diagnosis, but who cares, you've got some pretty convincing test results and a positive dietary response. Kate
  22. Ohsotired, Make sure that they do the DNA test too. My blood tests were invalid because I had been gluten-free beforehand, but the DNA test - which I had to argue for - found that I'm a DQ 5. Finally, after 20 years of being sick and nearly 15 years of asking doctors about celiac disease, I was vindicated. The ignorant GI doc ignored the DNA results and tried to tell me that my blood tests "proved" that I was not celiac. My primary care doc also tests my vitamin D levels twice a year because he's worried about malabsorption leading to osteoporosis. Kate
  23. Last December, after four months gluten-free I went back on gluten to prepare for the blood tests...I lasted four days. It was horrible. One of the worst episodes I'd ever had. They did take my blood then for testing; the blood panels were useless of course, but the DNA portion found that I'm DQ 5. Then the ignorant GI doc tried to argue that the blood panel "proved" that I wasn't celiac, completely disregarding the DNA evidence, family history, and dietary response. Apparently, 1 + 1 + 1 = 0. Needless to say, I'm never going back to see him again. Kate
  24. Shay's correct, a Riboflavin deficiency will cause the cracks at the corners of your mouth (and make your eyes sensitive to light). I had them for years and wasn't able to get rid of them until I started taking a B vitamin complex supplement. I always know when I've forgotten to take my daily multi-vitamin for a while, when I start to get a mouth crack... Kate
  25. For years I've had a lower than normal temperature. As a result, when I have a fever, my temp is usually only around 99 degrees. The doctor's and nurses dismiss it as not enough above normal to be a real fever, despite the fact that it is 3-4 degrees above what is "normal" for me. It would be interesting to go back through my charts and see if the temperature thing correlates with my celiac symptoms. Kate