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Mother of Jibril

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Latest Celiac Disease News & Research:

Everything posted by Mother of Jibril

  1. Mother of Jibril
    Hi Gypsy, Yes, I've run into quite a few people on the SM/MCAD/IA boards who are either sensitive to gluten or have celiac disease. And YES... the triggers are cumulative! My last attack (which left me vomiting uncontrollably for four hours) happened after a meal of gluten-free macaroni and cheese, bananas, and a bottle of pomegranate juice followed...
  2. Mother of Jibril
    Thanks JoAnn I remember you too! Although it stinks to have another autoimmune disorder (as you know all too well)... especially one that affects so many different systems in the body... it's very nice to have it identified and be able to treat the symptoms. No more feeling like I'm crazy!
  3. Mother of Jibril
    Hi everyone, The last time I was here (about six months ago) I was struggling to figure out some ongoing health problems... abdominal pain, nausea, diarrhea, joint pain, headaches, chronically dry eyes, episodes of anaphylaxis, a weird skin rash, etc... After extensive testing to rule out other things (I saw two allergists, four primary care doctors...
  4. Mother of Jibril
    I did use Enterolab, which seems to be the cheapest. It takes about a month from the time you order the test until you get the results. The downside is that they only type the beta parts of your genes... sometimes it's helpful to know the alpha parts too.
  5. Mother of Jibril
    Although the blood test is a great place to start, a genetic test (for HLA-DQ) can be very useful when you still have questions. Typically, the two genes that are most strongly associated with celiac disease are DQ2 and DQ8. It doesn't mean you HAVE celiac disease if you have one of those genes... just that your risk is higher. To answer your question...
  6. Mother of Jibril
    What kind of special treat are you thinking of? There are a few limits in the gluten-free world (no croissants, no licorice...), but there are lots of possibilities for baked goods. Pamela's makes a chocolate cake mix that you would NOT guess was gluten-free My four-year-old daughter loves to help me stir up a cake and decorate it with frosting I make...
  7. Mother of Jibril
    Terra chips are my gluten-free (and corn-free) favorite
  8. Mother of Jibril
    Some quick answers to your questions... Nobody can diagnose you with celiac disease "on the spot." The blood tests should include: - Antigliaden IgA - Antigliaden IgG - Tissue transglutaminase IgA - Tissue transglutaminase IgG - Endomysial antibodies (EMA) - Total IgA Personally (unless you have tons of money to throw around...
  9. Mother of Jibril
    OK... here's my basic understanding of how immune complex disorders work. The basic function of your immune system is to clear dead cells, virus, and bacteria (things that don't belong) out of your system. One way it does this is by generating antibodies. The antibodies link up with specific "antigens" (things that don't belong) to form "complexes...
  10. Mother of Jibril
    There are several different types of rashes that can occur in people with immune complex disorders (like rheumatoid arthritis). I had a blistering, itchy rash on my hands, arms, and lower legs that I thought for sure was DH! I had it biopsied (one punch biopsy of a lesion and one biopsy of a clear spot next to the lesion), but it came back negative. Have...
  11. Mother of Jibril
    Hi Jason, I really think you're doing the best you can! You've made SO much progress Something to think about... I checked out a basic textbook on immunology (to help figure out a problem I'm having) and I ran across an interesting idea about autoimmune disorders... their original purpose may have been to serve as a defense against cancer! I...
  12. Mother of Jibril
    Hi Sandi, Considering that you're IgA deficient, a blood test is useless. If you're still eating gluten you might want to go looking for a gastroenterologist who's willing to do an endoscopy. You could also get tested for an allergy to wheat, but is it really that much more difficult to avoid rye, barley, and oats? I find that rye is very easy to...
  13. Mother of Jibril
    How old are your kids? I've heard a couple of other stories like this and it seems to work best when the kid(s) say, "Daddy I can't eat that." If your kids are still really young (under 5, for example) then it can be difficult to get a firm diagnosis. Lots of false negatives. If you want to try a gluten challenge you probably need to give it a good...
  14. Mother of Jibril
    Hi Cheret, ANA is a general term for autoantibodies (antibodies designed to destroy your own cells). Since you've been gluten-free for three years I doubt that's the cause of the positive test. IMO, you would be smart to see a rheumatologist to check your sed rate (ESR), rheumatoid factor (RF), and look for more specific antibodies. In lupus, for...
  15. Mother of Jibril
    Hmmm... I have read that casein can cause "protocolitis," a temporary condition that damages the intestines causing projectile vomiting and bloody diarrhea (my son has this condition): Open Original Shared Link I'm not aware of this happening in adults. I'm also not aware of any scientific tests for intolerances that accurately predict your symptoms...
  16. Mother of Jibril
    The reason I mentioned lupus is because it's one of the rheumatological disorders, a group that includes Sjogren's Syndrome, rheumatoid arthritis, gout, and vasculitis. As I understand it, the common link between all of these is that the symptoms are caused by antibody-antigen complexes and complement lodging in your organs, joints, and blood vessels. I...
  17. Mother of Jibril
    Really!! While I trusted my gastroenterologist (who was checking for evidence of mastocytosis in my GI system, not celiac) to perform an endoscopy, I had to explain the results of my genetic test from Enterolab... *0302 is DQ8. He had no idea. Once I explained he thought I was smart to stay on the gluten-free diet. I give him a lot of credit for listening...
  18. Mother of Jibril
    My guess (and keep in mind that this is just a guess, because I'm certainly not your doctor) is that celiac disease is not your only autoimmune disorder. Lupus (SLE), for example, can cause the kind of joint pain that you describe, but it's also notoriously difficult to diagnose... especially in the early stages. I've also been off gluten for almost a year...
  19. Mother of Jibril
    If you think the pain is centered in your kidneys you should get that checked out!! CKD (chronic kidney disease) is a lot more common than you might think. Ask a primary care doctor for a urinalysis... the presence of protein and/or blood will tell you if you have any damage. It's cheap and very easy. BTW... although CKD is most common in people with...
  20. Mother of Jibril
    Hi Amy, We're HLA-DQ twins... I'm a DQ8/DQ7 too. Like ravenwoodglass said, Wikipedia is a good place to start: Open Original Shared Link It seems like everything I read these days (about lupus, vasculitis, mast cell disorders, etc...) keeps pointing back to one of these genes. You can find a LOT of interesting tidbits through google.
  21. Mother of Jibril
    I actually think this is one good bit of advice... "The mere fact that someone who cuts out gluten feels better doesn't mean that he has an autoimmune disease or a wheat allergy or some other medical condition." As long as you keep in mind that you COULD have an autoimmune disorder (or some other medical condition). Making unfounded assumptions...
  22. Mother of Jibril
    I had a false-positive skin test to a bunch of foods (including peanuts, almonds, and celery)... I feel your pain! It's REALLY hard to stick to that kind of diet for any length of time. Just a thought... it's usually the proteins that give people the worst reactions. Have you tried just taking the top eight (shellfish, fish, peanuts, tree nuts, dairy...
  23. Mother of Jibril
    Hi Megan, Tissue transglutaminase and endomysial antibodies are more specific for celiac disease than anti-gliaden, but it's not "normal" to be making antibodies against gluten, so... at the very least, you're definitely intolerant to it. That's not uncommon in people with other autoimmune disorders like type I diabetes and Hashimoto's disease. If...
  24. Mother of Jibril
    I'm battling some kind of additional autoimmune disorder that hasn't been fully identified yet. A couple of weeks ago I had a big flare-up and lost a bunch of hair... at least it was spread out all over my scalp so you can't really tell The advice to check your thyroid is good too. Hair loss is a classic symptoms of hypothyroidism.
  25. Mother of Jibril
    I was in the same boat as you... my breastfed son had TERRIBLE reactions to dairy products. And I grew up in Wisconsin. How can a cheesehead give up cheese? Anyway, here are some pointers: - Hummus makes a good dip and "creamy" filling for sandwiches - Coconut milk is a great substitute for dairy in smoothies... the most satisfying alternative...
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