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MitziG

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Everything posted by MitziG

  1. MitziG
    They should have ordered the biopsy. My positive blood test was the TTG, with a level of 6. Under 4 was negative. Yet I have had celiac for 30+ years and the endoscopy clearly showed that. Total villous atrophy. In your shoes, I would insist they do it NOW.
  2. MitziG
    Your problem is gluten, whether you have celiac or not. You do not need her to acknowledge this, and you do not need a dx. Do what makes you feel better and don't worry about the rest!
  3. MitziG
    I have IC as well. For me, I had to cut out gluten and dairy to get relief- but everyone is different. It has been almost a year and a half since dx, and I am generally pain and spasm free, unless I cheat with dairy. Then I pay for it for several days. The bladder relief was very gradual, so I honestly can't say how long it took to get better, sorry!
  4. MitziG
    I would have your doctor biopsy the rash. It needs to be done next to the lesions, not directly on them. If it is DH, this should show up. Since you have had bloodwork done already, and are 3 wks gluten free, I would stick with the diet. I can relate to the major fatigue, but for me it was 6-7 mos on the gluten-free diet before I noticed a difference in fatigue...
  5. MitziG

    ARCHIVED Opinions?

    MitziG replied to Googles's topic in Coping with Celiac Disease

    I guess I didn't find the article as inflammatory as some of you. Personally...I doubt that anyone who already HAS celiac is going to be able to safely eat it. As another poster said, "gluten is gluten" and once the immune system has set itself to respond to gluten, it isn't likely to change its mind. Perhaps those who are only slightly intolerant may be...
  6. MitziG
    The "mild inflammation" could be damage that isn't quite healed yet. Since you just recently cut out all dairy though, I expect you may find that is what will kick your healing into high gear. I was dairy "lite" for about a year- it wasn't until I removed all traces of casein from everything I eat that I saw that last needed bit of improvement however. ...
  7. MitziG
    I can't tell you what they do it- my guess is they have to send it to a specific lab as I know in the States only a few labs do certain celiac tests, so it can take a bit longer. Make sure you request a copy of your lab work actually, and post your results here. We can tell you if any tests were left out. It is a good idea to have your initial results...
  8. MitziG
    I am betting you could use butternut squash as a banana substitute- or pumpkin. Both have a similar texture and just a bit of sweetness, and I know people have used them in pancakes.
  9. MitziG
    Take a look at your personal care products. A lot of shampoos, toothpastes, lotions, lipstick/chapstick contain gluten. Anything that gets on your hands can easily end up in your mouth. The possibility that you are super-sensitive is a real one. My son and I are not easily sickened at other peoples houses, but my daughter has gotten glutened from doorknobs...
  10. MitziG
    Mash a banana, an egg and 2 tbsp peanut butter and you have pancake batter (really- sounds gross, I know!) Takes about 30 seconds to mash, about 3-4 to fry it into pancakes. Quite tasty. I know you are leary of the fat in nuts, but the fat in natural peanut or almond butter is very beneficial for your heart and can actually aid in weight loss. I do a semi...
  11. MitziG
    Oh, and extreme stress like what you have been under can be a trigger for celiac.
  12. MitziG
    Get the testing done. That low cholesterol is a big red flag. And if the testing comes back negative, go gluten-free for awhile anyway. I bet you will get relief.
  13. MitziG
    Honestly, it could be either, and without testing you can't know for sure. If you really want a better idea, you could do genetic testing to see if you have the genes for Celiac. If so, it would probably be safe to say it is Celiac. Personally, I would treat it as celiac disease and be vigilantly gluten-free for life. Clearly, gluten is harming your body...
  14. MitziG
    It isn't a bad idea to have them see how things look, but you can almost guarantee that you won't get a positive celiac biopsy, so my only concern is that then they will tell you it isn't celiac after all. This is way too common and absolutely astounds me that doctors continue to be so ignorant of the basic facts of this disease.
  15. MitziG
    It is very simple. Celiac is genetic. All of you could, and probably do, have it. Once you get one auto-immmune disease, the rest follow. Ignoring the likelihood and avoiding testing is dumb. You have to understand, by the time symptoms are full blown, serious damage is done. In this case an ounce of prevention is worth ten pounds of cure. Anyone with...
  16. MitziG
    Scottish and Irish on my mom's side (she also has Celiac) English and Native American on Dad's side (he probably has celiac, at least is gluten intolerant- never tested)
  17. MitziG
    My guess would be that when you were first dx, your body had just started the auto-immune response, so antibodies were only slightly elevated. But, celiac is progressive. You are getting gluten somewhere, the immune response is still being triggered, so the antibodies are going to keep building up, even though you aren't intentionally eating it. So...time...
  18. MitziG
    It is the soles of his feet, mostly the ball. And I don't believe growing pains exist! When I get glutened, my feet and legs ache so badly I have to soak in a hot bath for hours, just to keep from crying!
  19. MitziG
    you need to be very firm on thhis one. Before playdates, remind the moms that they can not bring snacks. Simply say "timmy is so sensitive that we can not risk him coming into contact with gluten at all, and I know it is difficult for others to know what is safe, so I will have snacks for your kids here." Yes, it feels awkward, but you are going to have to...
  20. MitziG
    My dd and I both react with puking as well. So miserable at the time, but it does seem to make the stomach issues pass over quicker at least!
  21. MitziG
    Hi Heather, welcome. First, you should know there is no such thing as "extreme" case of celiacs really....there are certainly degrees of damage done, and degrees of sensitivity before having a reaction, and degrees of reaction...but celiac disease is just as serious for those like yourself who have no visible reaction to major gluten, and those like me, who...
  22. MitziG
    His doctor is an ill-informed moron! If he was diagnosed with celiac he should never, EVER "try gluten" again. Celiac does not go away and many of your husbands issues are likely directly related to celiac disease. If he were to continue eating gluten he puts himself at risk of acquiring many auto-immune disorders as well as intestinal lymphoma. Many doctors...
  23. MitziG
    I second everything that Squirming Itch said. welcome!
  24. MitziG
    EMA can still show negative- your two positive tests warrant a diagnosis on their own. Get the biopsy. And when it is positive go wave it in that doctors face. Just kidding. Kind of. Maybe not....
  25. MitziG
    I got them regularly before dx, and after they seemed to pop up randomly, sometimes in response to glutening, but sometimes just randomly. Its been months now since I have had any, so perhaps my nutritional status is better? Or maybe they just aren't as bothersome once you have been gluten-free awhile. Can't really say- but sure am glad they are finally gone...
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