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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
    Schools have to accomodate celiacs because kids have to go to school. Private businesses, on the other hand, are allowed to discriminate in certain ways. Nobody is FORCED to fly. If American was losing a lot of business because they don't serve gluten-free meals it would probably convince them to change, but really... I still wouldn't trust them with a...
  2. Mother of Jibril
    I did mine through Enterolab, which sends the swabs to the Red Cross. Open Original Shared Link The only test I did was the gene test. At the time it was $174 with tax. It took about a month from the time I ordered it to get the results. You don't need a doctor's permission, but your insurance probably won't pay without it. ps - Enterolab is the...
  3. Mother of Jibril
    If it was me, I don't know that I would trust a "gluten-free" meal from an airline... especially if I was going to something (like a marathon) where I needed to be at my peak physical performance. I know it's a bummer flying in first class and being unable to enjoy the food... I had that experience back in March (long story). I agree that American could...
  4. Mother of Jibril
    It's true that not everyone with DQ2.5 or DQ8 is diagnosed with celiac disease, but it does increase your risk, especially if you have double copies. Also, if you take a look at the chart on Wikipedia, Open Original Shared Link you'll see that those are actually not the most common HLA-DQ genes, even among Caucasian Americans (from what I understand, people...
  5. Mother of Jibril
    You might want to think about approaching this in a different way... I have a mast cell disorder that causes mild abdominal pain and nausea, even on a gluten-free, casein-free, corn-free diet. The only reason I know about this disorder is because I started having anaphylactic reactions (autoimmune) back in February... a blood test revealed that my immune...
  6. Mother of Jibril
    In February I tested positive for allergies to celery, peanuts, almonds, dust mites, and four kinds of mold/fungus. I took all those foods out of my diet (even foods processed with mold like chocolate, black tea, soy sauce, citric acid, etc...) but it didn't help. In April I had another round of tests (new allergist)... both skin-prick and RAST... and found...
  7. Mother of Jibril
    Hi Ariauna, I'm on the corn-free wagon too! It's not so bad once you get used to it. Rice is my friend This website has a good list of foods that contain corn: Open Original Shared Link The downside to corn is that it's in EVERYTHING. The upside is that it doesn't cause autoimmune damage to your intestines, so if you make a little mistake...
  8. Mother of Jibril
    Good question! I have a mast cell disorder that causes mild abdominal pain and nausea, even on a gluten-free, dairy-free, corn-free diet. A few weeks ago I thought I was either having a flare-up or had been glutened... turned out to be the stomach flu!! It took a couple of days from the onset of my symptoms (stomach pain that woke me up at night)...
  9. Mother of Jibril
    The great thing about ENTs is that they're kind of half-way between a PCP and a specialist. Mine, for example, was able to order tests for Sjogren's syndrome AND do surgery to remove my lymph node. Your problem might be related to your thyroid... but what if it's not? It might be a waste of valuable time going straight to an endocrinologist (although I...
  10. Mother of Jibril
    I would strongly encourage you to see an ENT (ear-nose-throat) specialist. It's possible that the lumps are nothing, but it could also be an infection, autoimmune, or even cancer. Cancer is the least likely, however... if that's what it is you want to catch it now! Last fall I had a lump in the exact same place that wasn't going away even after two rounds...
  11. Mother of Jibril
    Ah... do you live someplace warm enough to have chiggers? I used to live too far north (northern Wisconsin), but now that I live in southern Indiana I've had them twice... both times because I was sitting in a grassy area. Chiggers can go right through your clothes Is the rash especially bad in dark/warm areas like your underarms, groin, trunk, inner...
  12. Mother of Jibril
    What were you doing over the holiday weekend? Hiking? Picnic? Maybe this is something you picked up at home and not while you were on vacation. I know it's easy on a forum like this to think that everything is caused by food. And maybe this IS food-related... but maybe it's not. Acute (short-term) skin conditions are rarely dangerous. What you want...
  13. Mother of Jibril
    Do you have a fever? If so, I would guess you have some kind of acute infection with a rash. If not, I would guess insects are the culprit... bed bugs, scabies, chiggers, swimmer's itch... ugh I've had chiggers twice and it does look a lot like chicken pox. It takes a couple of weeks for the itching to go away.
  14. Mother of Jibril
    The urticaria does get worse if I take a hot shower Heat can also be a trigger for anaphylaxis, but it doesn't seem to be for me... thank goodness! Just in case, I'm not pressing my luck with the sauna (even though I used to LOVE it).
  15. Mother of Jibril
    It doesn't sound like hives then... so it's probably not an allergic reaction! What about keratosis pilaris? That's a flesh-colored rash with tiny raised spots that clusters on the arms and legs. Open Original Shared Link One other quick thought... some kind of insect (scabies?). A dermatologist could take a scraping and probably figure it...
  16. Mother of Jibril
    Hi Pete, Before you dive into the gluten-free diet you really should get the blood test for celiac disease. It's easy and not too expensive... any GP can order it. Once you get the results you can post them on here and get more advice. A couple of quick thoughts about your experience so far... french fries are off-limits unless you know for sure...
  17. Mother of Jibril
    What does the rash look like? Is it red? Is it flat or raised? How long do the individual spots take to go away? Have you tried hydrocortisone cream? Be careful with it, but that tends to work for hives. It might be autoimmune and not a true allergy (caused by food, detergent, etc...).
  18. Mother of Jibril
    Hi Roda, I had bumps like that on my buttocks for YEARS. My parents always told me it was a "heat rash" (I can't believe how much our stories have in common). It was really uncomfortable to sit on hard surfaces especially the bathtub. The bumps went away on the gluten-free diet (!!)... and then I developed a new rash. It's not DH (I had a biopsy...
  19. Mother of Jibril
    Yes. Thankfully I learned this lesson while my labs were still "normal." In a couple of weeks I'm having some more tests to figure out if the persistent protein and leukocytes in my urine are truly "no big deal" or something to watch carefully. Meanwhile... I'm feeling pretty good Doing my best not to end up on the "sick and misdiagnosed" wagon again...
  20. Mother of Jibril
    This week I learned that it also pays to know which tests can be a little abnormal and still "no big deal" and which ones are a big deal when they go out of range. For example... if your liver enzymes are elevated a few points, no big deal. Once creatinine and BUN go out of range it means your kidneys are functioning at less than 40% capacity... stage ...
  21. Mother of Jibril
    That's been my experience too!!! Right now I'm trying to figure out exactly what's going on with my kidneys... it appears to be connected to my itchy rash (chronic urticarial vasculitis?) and episodes of anaphylaxis, which started after a few months on the gluten-free diet. I saw a rheumatologist in March and she was CLUELESS. She took a look at my...
  22. Mother of Jibril
    Hi Tiff, Sure! If you search for "Mother of Jibril" you'll find my profile... at the bottom on the left-hand side there's a button to send a private message.
  23. Mother of Jibril
    Hi Tiff, I'm honestly not following you around... I just keep having answers to some of your questions! For some reason (and I don't know exactly why) a signficant number of people diagnosed with chronic urticaria (hives) also have Hashimoto's disease. Open Original Shared Link Hives CAN be internal. And by definition they "come and go" (they...
  24. Mother of Jibril
    Hi Tiff, In a normal person, iodine might stimulate your thyroid to produce more hormones (a trick some people use to lose weight... although I'm not sure it's a good idea). If you have Hashimoto's disease, however, your thyroid is basically a "dead horse." No amount of kicking is going to make it perform again It like being a type I diabetic......
  25. Mother of Jibril
    Unfortunately, you need a lot of patience when you have autoimmune disorders. I'd say that for every five things I try (and I've tried a LOT of things in the last 14 months) maybe two of them work out. I've actually lost track of the number of doctors I've seen... primary care doctor (x4), gynecologist, allergist (x2), ENT, gastroenterologist, endocrinologist...
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