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Lotte18

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

Everything posted by Lotte18

  1. Lotte18
    Hi N00dnutt, Thanks for posting the Prevalence of Celiac Disease link. My takeaway is that the data is so chaotic I can't believe this 1% is even close to the real number. I also have a sibling who refuses to get tested. Just eats gluten free and doesn't see the value in bothering with doctors. And of course this just perpetuates a cycle in...
  2. Lotte18
    We know that many of those studies are outdated. The prevalence of new testing capabilities is continually changing the landscape. And as you say it's an approximation, not gospel. The real number is unknown and may never be known. Are we all so complacent that we are just going to keep echoing the 1% figure? Why aren't we elevating Lionetti's study...
  3. Lotte18
    How about we turn the tables and start using the 1.6% until that is challenged with these so called "needed" studies? I for one feel trust Elena Lionetti's study. It was a mass screening and no one is contesting it so why not go with that? If there are doubters out there they can cough up the research dollars to prove otherwise. We should not be voluntarily...
  4. Lotte18
    I find it rather annoying to see the "1% of the global population," endlessly repeated when the latest study out of Italy puts it at 1.6%. Why are we downplaying our own importance here? "An Italian study found that 1 in every 60 children has celiac disease, a rate higher than expected. The study, led by Elena Lionetti, conducted a mass screening of...
  5. Lotte18
    Hi all, I have to have gum surgery tomorrow and was wondering if I should ask for this new drug, Journavx, instead of Vicodin. I tried looking it up online and got, Not gluten free. There is no gluten in the ingredients for this drug. ???? Has anyone else had experience with Journavx? Advice? Many thanks, Charlotte
  6. Lotte18
    Hi Faye, Sorry I didn't see your post sooner. I suffered from ataxia as well. None of my drs. thought it was dairy. They were wrong. Turns out lactose intolerance was the cause. Pancreas just isn't making the enzymes like it used to. I now drink lactose free milk for the calcium and eat lactose free yogurt by Green Valley, when I can find it. My ataxia...
  7. Lotte18
    I have never been tested for tTg 6 antibodies but I will certainly do that next time I'm at the doc's. Maybe there's a home test kit for that? I drink lactose free milk and seem to be ok so I'm probably not a casein case but...who knows?!
  8. Lotte18
    Hi Knitty Kitty, Thanks for sending all of these articles. Some of them are too complex for me to parse. That said, I had extensive blood tests done when the ataxia started. I was a little low on Vit. D. My doc thought I might be low on Vit. K. But no. K levels were completely normal as were all of my B Vits. levels. I take a D supplement but even...
  9. Lotte18
    Hi Scott, I thought I'd be like "most people" and could go back to having dairy once my villi had healed. But after dealing with neurological problems that cropped up long after my gut had healed it turned out that this just wasn't true. I have no idea if celiac influences pancreatic enzyme production or if it's the other way around--for some of us-- but...
  10. Lotte18
    Hi Matt, So sorry you're having to suffer all this. I'm just chiming in on your dairy question because the answers are often far from what we or our doctors assume. For example, I thought I could go back to having dairy once my intestinal villi healed. I was fine for about 8 months. And then I wasn't. Started having weird issues with maintaining my...
  11. Lotte18
    Of course no one is studying whether there is a connection or not. The lack of solid information is exasperating. Living with this much uncertainty is so stressful. I get blood tests every year and they never show a vitamin deficiency. I've never had a diet high in carbs, etc. etc. But I am aging. And that seems to create a lot of bio chemical drama...
  12. Lotte18
    I guess my fungal issue was also blood related. Had to do some heavy antibiotics. Awful. I will try the Dapsone gel and cross my fingers. Thanks for posting...
  13. Lotte18
    Hi All, Thanks for all the input on dermatitis herpetiformis. Once again these discussions highlight how little understanding there is by our drs. about celiac disease. About 8 years ago I was also diagnosed with a "rare" fungal infection. Hope it's not related to what's on my leg now. I'm putting Clobetasol .05% on it now. Seems like strong stuff....
  14. Lotte18
    Hi all, I've suddenly got a skin rash on my leg that might be dermatitis herpetiformis...can figs trigger this? Has anyone else had a similar reaction to eating figs? And if so, what did you do to treat it? Or did it go away on its own after a few days? At the moment I'm just icing it and hoping it dissipates. Many thanks, Charlotte
  15. Lotte18
    So sorry that you're going through this during your college years. The first year or two of this is the hardest. The Drs. don't seem to know that there's a recovery phase that requires more than going gluten free. Coffee and lactose should be avoided. You need to calm the system down. Start your day with ginger tea. Basic Culture grain free bread instead...
  16. Lotte18
    So perhaps, if the RA and/or MS folks come up with an experimental treatment for IL-7 first, us celiacs can apply to try that route as well. (I assume their research grants are much larger and more consistent than ours.)
  17. Lotte18
    Thanks for posting this. And for translating the technical medical language in Nature's article into something the average reader can digest. Pun intended! Do you know if IL-7 is being looked into by researchers who study MS? RA? How much cross pollination goes on among these researchers? I have an aunt with MS from the same branch of the family that...
  18. Lotte18
    Thanks for clarifying Scott. The FDA does have an enormous job. Looking forward to seeing what else you uncover from this evolving story. Many thanks for keeping us informed.
  19. Lotte18
    Trents, Thanks for your comment. Like so many, I was completely unaware of the GFCO step down testing process. I assumed they were testing on a consistent, perpetual basis. My understanding is that companies pay a minimum of $10,000 a year for this certification. You and I pay a premium for that certified product. Testing should be consistent. The FDA...
  20. Lotte18
    Scott, As always thanks for providing our community with this much needed information. Like so many, I just could not figure out why I would suddenly feel intestinal pain--everything thing I ate was "Certified gluten-free." After reading about Simple Foods I threw out their crackers and cookies--products that I was eating on a regular basis. Their Almond...
  21. Lotte18
    Hi Jefferson, This research is so interesting! Thanks for posting it. It makes me wonder if doctors performing endoscopies will be made aware of it so that they can biopsy these specific locations within the intestine. I know that my doctor took six tissue samples but I have no idea what the intestinal points were. Are D1, D2, D3 universal terms...
  22. Lotte18
    Thanks for the tip!
  23. Lotte18
    Hi Patty, I'm glad that you've had a better experience than I have had. These test strips are really expensive so I'm not going use up a second one on Bluebonnet, which is a very expensive supplement to start with. When I get up the courage to try again I'll try Procapslabs...thank you Beverage!
  24. Lotte18
    Thanks so much for that info! I was really starting to worry that I had to look out for a cumulative gluten hit from my "gluten free" food.
  25. Lotte18
    Hi Scott, I just spoke to EZGluten. Their test can find up to 10 ppm. Manufacturers are allowed 20ppm. So the vitamins probably have gluten. The only other reason they could test positive is from "some enzyme" included in the recipe. I'm not going to bother boiling this vitamin down to eliminate enzymes. I'm just not going to buy supplements anymore...
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