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beachbirdie

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Everything posted by beachbirdie

  1. beachbirdie
    Pretty much. You might want to clarify whether the anti-gliadin tests are actually the deamidated gliadin peptides. A few labs here and there are not up to speed on that one and still do an older test, anti-gliadin antibodies. Other than that, sounds like you are on a good path. Except...sounds like you've been off, then back on gluten. How long...
  2. beachbirdie
    I would echo the sentiments of those who have questioned the need for "official" diagnosis. You have antibodies, you have a doctor who says he is reasonably confident it IS celiac, you feel better gluten free. Unless you live somewhere that subsidizes gluten free food, you will probably do just as well with or without that diagnosis.
  3. beachbirdie
    My husband is Mexican and has really missed his home-made flour tortillas! Actually, we all miss them! I told him I didn't think I could make them any more as the last time I made them (a couple of weeks ago) I ended up with several days of stomach cramps. Same thing happened after I baked him a glutenous chocolate cake. I'm not sure it's related, but...
  4. beachbirdie
    Yep. I had a terrible time for nearly a month. I was grumpy, irritated at everything, losing temper at the most trivial stuff. I was sleeping a lot but still SOOOO tired! And headaches. Ugh. My mom went through the same thing. We took her off gluten in April, she became a raging maniac. She is older, 85 years, and we were starting to think it...
  5. beachbirdie
    That was my reaction as well. Someone needs to provide a little education to this family! Though it was encouraging to know that there are colleges willing to work with the students to help them have good, reliable, gluten-free options. Maybe he was speaking of food like Thai, where more of the noodles are rice-based, and the sauces are not soy-based...
  6. beachbirdie
    You can set up a free photo storage account at a place like photobucket or flickr. You then upload the pictures to your account, and after they are stored you can capture a link suitable for posting into a message here. You can make an entire album public for sharing, or individual pictures.
  7. beachbirdie
    Holey moley. I never went to read about the dapsone before, I can see why most wouldn't want to take it. That is some dangerous stuff. I wouldn't take it either. You've also explained why, though my rash is fading, it is NOT gone. I'm only 6 weeks gluten free. I guess I expected an instant response. Thanks for sharing that. I'm thinking of testing...
  8. beachbirdie
    This is a great thread, and you all have done a great job with your pictures. It is so helpful to compare notes on this, word descriptions just don't convey the idea as well as pictures. It can be difficult to distinguish between dishydrotic eczema and DH. I had a conversation with a doctor acquaintance about this many months ago, his opinion was to...
  9. beachbirdie
    Be careful and be sure to read the label on your powdered sugar. A lot of powdered sugars have corn starch...were you one of those that needs to avoid corn? I might be mixing up someone else's post .
  10. beachbirdie
    Sorry to answer a question with a question, did they do any other IgG tests? A doctor might interpret a negative DGP IgG as no celiac, but as you've probably gleaned from reading around here, false negatives can be common. Off to read some of your other posts...I don't recall the background info. Ahhh...okay, just saw the test results. As...
  11. beachbirdie
    Coconut flour can't always be substituted 100% for other flours, it depends on the recipe. Many recipes you should only do about a quarter of the recipe with coconut flour, then other flours for the rest. It also takes extra liquid. If you substitute 1/2 cup of coconut flour into a recipe, you would want to increase the liquid by an equal amount. Coconut...
  12. beachbirdie
    On the one hand, you don't want to focus so much on having celiac that you miss something else that might be going on. A good doc can help flesh that out. On the other hand, if are feeling better off gluten, that says a LOT!. You could push your doc to do a full celiac panel, not just one test. Many people will test positive on only one of the commonly...
  13. beachbirdie
    I am very happy for you! May your healing be accomplished with great speed!
  14. beachbirdie
    I got my best grounding on thyroid issues from the board at about.com. There are lots of really good folks over there, and it's pretty active. If you just want to read on your own, and don't mind wading through some tough detailed information, go to Open Original Shared Link, an online textbook for physicians BY physicians. Another great place for...
  15. beachbirdie
    It is possible to have celiac without a positive antibody test. This happens to many people, and it is why a lot of celiacs go undiagnosed. The biopsy used to be considered the "gold standard", and you have a positive biopsy. When you say your bloodwork was negative, exactly what tests did your doctor do? Sometimes they don't do all of the available...
  16. beachbirdie
    Do you need to avoid soy? There are some wheat-free,corn-free, dairy-free chocolates out there, but the ones I've found have soy. Open Original Shared Link Open Original Shared Link Obviously focusing in chocolate here! I cannot imagine life without chocolate in it. Are you okay with rice and flax? Perhaps you could make something like a rice...
  17. beachbirdie
    It looks to me, a newbie, that your DQ2.2 risk is multiplied by having the "other high risk" gene, which according to the charts on wikipedia is DQ7. So, you would not be considered at risk with a DQ7 alone. That is correct. LOL! I don't really have MY head around it, so can't really say much more! You are definitely in a very high risk category...
  18. beachbirdie
    You can be negative for TtG and still have celiac. You can also be negative on all the blood tests and still have celiac. Something in the range of 20-30% of negative tests are actually false negatives. That's a large number to slip "through the cracks". You are aware that the biopsy can be negative, and you could still be celiac? Sometimes damage...
  19. beachbirdie
    Good luck!
  20. beachbirdie
    Do you have the reference ranges? Kind of hard to interpret without a "boundary line"!
  21. beachbirdie
    With the high cholesterol and headaches going on, I think you should also be investigating your thyroid. A messed up thyroid can really affect the numbers. Don't take "normal" for an answer, get your TSH, Free T3 and Free T4 done. I couldn't get a handle on my cholesterol (even with healthy diet) till my thyroid was well treated.
  22. beachbirdie
    The problem here is that almost all of your tests are IgA tests, and they didn't do a total serum IgA. On the surface, they are negative tests, nothing even "weak positive" here. But without that missing piece, they are suspect. If you are IgA deficient (and many celiacs are) the negative IgA levels are false. On top of that, 20% of celiac testing comes...
  23. beachbirdie
    I'm guessing that would be close. But remember I'm still newbie at this! Judging from the risk table that Prometheus puts out regarding their testing, the 16x risk for celiac is associated with "DQ2 and other high risk gene". More about DQ7 Open Original Shared Link From the article: "In celiac disease the DQ7 (A*0505/1) can mediate celiac disease...
  24. beachbirdie
    Hair loss Fatigue-bone crushing fatigue, not just transient tiredness Panic attacks Heart Palpitations very low resting heart rate (50s and 60s, and NOT a conditioned athlete) High cholesterol High blood pressure Edema (generalized throughout body) Headaches "Brain Fog" (foggy thinking, difficulty concentrating) Depression Super heavy...
  25. beachbirdie
    I'm not going to ask your age but another thought about hair falling out...you might want to get all your hormone levels checked, female hormones can cause hair loss when they are out of balance. If you are into your 40s, you might be considered perimenomausal and your hormones ARE beginning to shift. Whether at that age or not, Estrogen, estrone, progesterone...
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