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Mother of Jibril

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Everything posted by Mother of Jibril

  1. Mother of Jibril
    How are you self-medicating with steroids? Isn't that always a prescription drug??? Anyway... if prednisone makes a difference then your problems are clearly autoimmune. Are you on the gluten-free diet? If you are then your GI symptoms shouldn't "flare up." However, there are some other autoimmune disorders (Chron's, ulcerative colitis, SLE, Sjogren...
  2. Mother of Jibril
    What brand of rice milk are you using? Some people have reactions to Rice Dream (they use barley enzymes in the manufacturing process). I think it takes time to figure out some new favorites that you can eat without thinking. Do you like Indian food? I recently discovered the joy of ready-made Indian sauces They rarely have gluten or soy... so you...
  3. Mother of Jibril
    Mucus strings... or undigested food strings? Have you been eating anything stringy lately (like pea pods)?
  4. Mother of Jibril
    I had to take corn out of my diet back in October. At this point I'm able to tolerate corn starch in things like medications, powdered sugar, etc... but I haven't dared to eat something like popcorn!
  5. Mother of Jibril
    I recently bought a bracelet for my 16-month-old son when we found out he has a peanut allergy. I saw these when I ordered my own bracelet and I thought it was really smart: Open Original Shared Link The velcro is pretty sticky... it hasn't been too hard keeping it on his wrist! And I think it DOES help people recognize that he has a serious medical...
  6. Mother of Jibril
    Sorry for the tangent... do you know what lab (LabCorp, Quest, etc...) did your test? Some labs/doctors are starting to ignore anti-gliaden, which I think is a huge mistake. I agree that you should ask to be tested again. Try to get an endoscopy! For someone like you who's IgA deficient, that's probably your best chance to get an accurate diagnosis...
  7. Mother of Jibril
    Maybe heat-induced anaphylaxis? Flushing and feeling like you're going to pass out is a bad sign... it means your cardio-vascular system is involved. Here's a note on symptoms of anaphylaxis from the Mayo Clinic: Open Original Shared Link You should seriously get that checked out... and either avoid exercise when it's hot out or carry an epipen...
  8. Mother of Jibril
    It's actually quite easy to learn your HLA-DQ genes. There's a company called "Enterolab" that will send your cheek swab to the Red Cross for testing... you don't need a doctor's permission (although I doubt your insurance will pay). When I did it last year it was $174. Although it can't give you a diagnosis, it does help you understand your risk for celiac...
  9. Mother of Jibril
    Hi Tiff, My pleasure! Other people on this forum have helped me so much... it's nice being able to return the favor. For Vitamin D I've been taking "Carlson Labs Solar D Gems" which delivers 2000iu of D3 in a lemon-flavored soft gel (you can actually chew them like gummy candy... surprisingly tasty). It also gives you a little dose of Omega 3s...
  10. Mother of Jibril
    Just my personal perspective... A lot of the symptoms you mentioned will probably get better as you go along on the gluten-free diet. In addition to vitamin D (which I'm still taking), I also added some sublingual B-12, selenium (by eating one brazil nut each day), and zinc for a few months. A zinc deficiency, for example, can cause dandruff and those...
  11. Mother of Jibril
    I think a LOT depends on the one you go to. I've eaten at the one in Bloomington (Indiana) three times without getting sick. I order broiled fish with no seasonings, a plain baked potato, steamed vegetables, and a plain salad with no croutons or dressing... so far so good! I've heard horror stories from some other places, but I think this Red Lobster...
  12. Mother of Jibril
    Sounds like an allergic reaction... especially if Benadryl helps. Have you ever had allergy testing? It's possible to have celiac disease AND an allergy to wheat. Last time I had anaphylaxis I had intense itching (hives) literally from head to toe... even on my scalp and ears. What a weird and horrible feeling. Histamine levels peak around 2:00 in...
  13. Mother of Jibril
    I've had a CMP done a few times in the last year and my levels have varied between 3.6 and 4.0... always on the low end of normal. A level below 3.5 is considered to be "hypokalemia." Open Original Shared Link Unfortunately, it's pretty complex to figure out why your potassium is low. I'm being evaluated right now for a problem with my kidneys...
  14. Mother of Jibril
    Just my personal experience here... I've been taking the maximum OTC dose every day for about two months (sometimes an extra 20mg in the afternoon). Pepcid AC helps a lot with my abdominal pain. I can tell when the dose is wearing off. I can't really say that it helps the constipation, but it doesn't make it worse either! I was worried about that...
  15. Mother of Jibril
    Hi Suzanne, I would take your daughter to a dermatologist... my first thought is "chronic urticaria (hives)." It's a pretty common condition and it could explain the constant itching. This website is really helpful: www.urticaria.thunderworksinc.com/ If it is CU there are several things you can try... antihistamines, a cream that you can...
  16. Mother of Jibril
    You're absolutely right. Good thing you were paying attention. So... Nic38... ignore the advice about ferritin Unfortunately I don't know anything about folate beyond the fact that it prevents certain birth defects in fetuses.
  17. Mother of Jibril
    Welcome to the group! A lot depends on how quickly your body can heal (it gets slower as you age) and how much damage there was. Did you have an endoscopy? If your villi were completely destroyed (category IV) then it could take a long time to heal... as long as one or two years... but you should feel better and better as you go along on the gluten-free...
  18. Mother of Jibril
    Hi Jason, Numbers 1, 2, 3, 4, and 8 could all be related to a mast cell problem. Have you ever heard of interstitial cystitis? It's when you constantly have to go (or at least feel like you need to go)... and it's caused by an overabundance of mast cells in your urinary system. Open Original Shared Link Numbers 5, 6, and 7 are probably caused...
  19. Mother of Jibril
  20. Mother of Jibril
    That's a pretty low level. When was the last time you had a CBC? With a level that low you might also have iron-deficiency anemia... ferritin is the storage form of iron (and you're pretty much depleted).
  21. Mother of Jibril
    A few months ago I put a small George Foreman grill in my suitcase when I had to travel. As long as you can get to a grocery store (if you have a car) it works like a charm!
  22. Mother of Jibril
    It's sounds like you have a really good doctor! That's great to hear. I hope you get everything sorted out quickly... I know how hard it is when you feel exhausted all the time. Let us know how you're doing!
  23. Mother of Jibril
    Welcome to the group! Did you get a photocopy of your results? If yes, could you post the numbers and the reference ranges? Sometimes (for a variety of reasons) you can be told "negative" when you actually DO have a problem with gluten. If you don't have a photocopy... go get one! It's your right as a patient. In the meantime... if you're still...
  24. Mother of Jibril
    This is just my opinion... The particular set of symptoms you mentioned -- anemia, joint pain, eczema, high liver enzymes, and a family history of celiac disease -- could definitely mean your son has celiac disease. Even if his tests come back "negative," a gluten-free diet would be worth a try. (Make sure you wait until the testing is complete though...
  25. Mother of Jibril
    Hi John, I agree about the endoscopy. Since your total IgA is so low, I think a biopsy will be your best chance to get a diagnosis... assuming you want something official. In your case (with anemia and diabetes... which are more common in celiacs than the general population) it might be helpful to have an official diagnosis. It could really simplify...
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