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SMRI

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Everything posted by SMRI

  1. SMRI
    Interesting. I will have to ask about this at my appointment with him tomorrow!
  2. SMRI
    Have you investigated other causes along with food issues besides MS?
  3. SMRI
    Rochester Mayo is certainly an experience. They have medical care down to a well oiled machine. Everyone is so friendly, nice and professional. If you do go, plan on staying for a week for your initial appointments. It might not be that long but generally you will have appointments scheduled over several days. They check every nook and cranny! They...
  4. SMRI
    But a lowered IgG subclass 3 could explain all of that. Doesn't mean he has to be "sick", but if he's not growing, not gaining weight and his labs come back wonky, he is "sick", just not acutely. My daughter is immune compromised and most of the time she is perfectly "healthy"....except if she gets a cold and she needs to go on antibiotics right away to...
  5. SMRI
    I guess the point of going to Mayo is maybe you are barking up the wrong tree so to speak and maybe something else is causing the issues. Going to a GI specialist is fine, but what if it's something else causing GI issues that they don't look for? What was his IgG subclass 3 level? That can cause a whole host of GI issues but not be Celiac, for example...
  6. SMRI
    I was on the road all day yesterday. I had 1/2 of a baked potato from Wendy's for lunch and ate at Olive Garden for dinner. I had their gluten-free pasta. No idea if they handle food properly but the waitress did say "salad with no croutons, right?".
  7. SMRI
    I had to look it up--basically it's damage from bacteria you can get if you live in the jungle . My endo didn't know either . I'm pretty sure I don't have that .
  8. SMRI
    They have added an endoscope for her not too. She wasn't that thrilled about that but I told her it was pretty easy so no worries . She's had other surgeries and this will be a breeze compared to those.
  9. SMRI
    Your lab results are only as good as the people performing the tests....how experienced are they at the lab that had the high results? Have they run a full immune panel on him to see if his total IgG and IgA levels are normal? Can you just take him to Mayo for a complete work-up to see if maybe something else is going on?
  10. SMRI
    I was just diagnosed and you might be over thinking this a bit. MOST food is naturally gluten free so you don't have to limit yourself so much. Fruits, veges, meat, etc. are all gluten-free. I've found that just about everything I eat is already gluten-free. The only substitutions I've had to make so far have been my breakfast cereal and oatmeal and breads...
  11. SMRI
    Ate at Olive Garden yesterday. Not a huge fan but my daughter loves their soup and we were traveling with limited options. I had the gluten-free pasta. It was not bad and in many ways I liked it better than regular pasta, not as "thick" and gummy. I had the Rigatoni Primivera and it had a lot of vegetables in the sauce that were fresh and not overcooked...
  12. SMRI
    I will let you know. I have no idea what they want. My diet isn't under control either since I haven't been told to go gluten-free yet. My endo said to wait until I saw the GI team in case they needed more tests. My daughter is getting tested as well and we both have appointments for a "study visit" whatever that entails. My sister sees him as well so...
  13. SMRI
    I just looked at my results, I have interepithelial lymphocytes too....whatever those are . It also says : "These changes are not entirely specific, but suggest celiac sprue. Other possibilities include bacterial overgrowth, hypersensitivity reaction to non-gluten proteins, tropical sprue, or protein calorie malnutrition." "crypt ratio 1:1-2" (no...
  14. SMRI
    An article on a blog, an extremist blog for that matter, really doesn't prove anything either...
  15. SMRI
    I'll look for those, thanks. I bookmarked that page! I see they have cinnamon rolls too . A friend of mine is at Cosmic Con in CA right now. She' having a blast and we are watching from afar on Facebook. Her daughter got to meet Kiefer Sutherland I just finished watching his 24 series.
  16. SMRI
    It's overwhelming for the thought of going gluten free. I was recently diagnosed as well and I pictured this life changing illness that would take weeks and weeks to prepare to do...well, while a lot of foods have gluten in them, a lot do not and with some simple modifications, you can be fine without living near a Whole Foods. I think the closest Whole...
  17. SMRI
    It was ok. The crust was sweet and didn't really cook well in the middle. I would split it into a couple pizzas and make a thinner crust next time. It tasted ok. It was a bit sweet for a pizza crust though.
  18. SMRI
    The center isn't wanting to bake....it looks pretty though
  19. SMRI
    Will do!! Thanks!!
  20. SMRI
    What Sweetsailing said. . I haven't actually seen him yet, I go back this coming week. He is doing a big study from what I understand but that is all I know about that. I was also there for other issues and they tested me for Celiacs as part of that ordered by my endocrinologist.
  21. SMRI
    The tests should be covered.
  22. SMRI
    Depends on the store I guess. Vom Foss is the one I've been to...wild cherry vodka---YUM Ok, so I'm making a Glutino Pizza crust. It's really sticky...is that normal for gluten free breads? I have to let it rise for 40 minutes, hopefully it's not as bad then.
  23. SMRI
    We don't but I've been to them. I'm especially fond of their flavored Vodka
  24. SMRI
    Have you stopped eating foods containing gluten?
  25. SMRI
    I'd say Mayo Clinic. They have a unique practice model and are uniquely set up to receive patients from all over the world.
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