Jump to content

Mother of Jibril

Advanced Members
 View Profile  See their activity

  • Posts

    928

  • Joined

  • Last visited

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by Mother of Jibril

  1. Mother of Jibril
    Only one of the DQ3 subtypes is considered a "celiac gene," and that's DQ8 (which is the one you have). All the DQ1 subtypes are considered "gluten sensitive," but the reactions can be just as bad and disabling as celiac disease... the damage just shows up somewhere besides your intestines. Everybody has two HLA-DQ genes; you happen to have a mixture of...
  2. Mother of Jibril
    Nope... the only treatment that works for DH is dapsone and a gluten-free diet. That doesn't mean your rash is unrelated to gluten! I had a biopsy for a gluten-related itchy rash that was mostly on my hands and arms (a little on my legs too)... made worse by hot showers. The pathologist labeled it, "spongiform, psoriasiform dermatitis." Which means...
  3. Mother of Jibril
    Wow... thanks for that note about Bob's Red Mill. It's great that they're trying to get up to speed and produce reliable products... but I'm one of those people who can't handle corn No wonder I was having problems with products that appeared to be "safe."
  4. Mother of Jibril
    Welcome to the group! There are four major types of HLA-DQs... DQ1 (subtypes 5 and 6) is associated with neurological damage from gluten, such as ataxia, MS, depression, migraines, and bipolar disorder DQ2 (subtype 2) puts you at the highest risk for celiac disease DQ3 (subtypes 7, 8, and 9) is associated with a group of autoimmune disorders that...
  5. Mother of Jibril
    There is a reason celiacs are told to be very cautious with things like toasters... because you can be damaging your intestines without any obvious symptoms. Damage can lead to more and more serious problems... like cancer. That being said... gluten can damage other parts of your body too. Is it better to have "just" gluten intolerance that attacks...
  6. Mother of Jibril
    I have a thyroid problem... and I do think my hormones are getting better. I'm definitely not so exhausted all the time! One interesting thing I found out yesterday is that magnesium deficiency is a common problem with malabsorption (which makes sense). To compensate, your adrenals start pumping out cortisol... but eventually they reach a limit. That...
  7. Mother of Jibril
    Welcome to the group! I also have Hashimoto's and gluten intolerance. After a couple of months on the gluten-free diet I figured out that I'm also intolerant to corn (and possibly dairy... I'm going to give that another try after I'm done breastfeeding my casein-intolerant son). I had problems with constipation, gas, and bloating for YEARS. It made...
  8. Mother of Jibril
    I thought the main point of the article... about kids with celiac (or any chronic disorder) being more prone to risk-taking behavior as teenagers... was also very interesting. To me, that makes sense. Kids who are really sheltered can get restless and rebellious. But... I think there are ways to give them other options and freedoms. For example, my...
  9. Mother of Jibril
    You raise some interesting points! To answer your questions... My mouth is not bone dry. I noticed that it was getting harder to eat bread and especially crackers before I stopped eating gluten. It's a little hard to compare now that I've cut 99% of processed foods out of my diet, but plain meat (like turkey) is still slow going. Chocolate doesn...
  10. Mother of Jibril
    Even if your daughter doesn't have celiac disease, the less gluten the better! Depending on factors like genetics, it's possible for intolerance(s) to trigger all kinds of disorders... celiac, type I diabetes, thyroid disorders, cancer, rheumatoid arthritis, etc... (and many, many more). It might be helpful if you could get a copy of your daughter's test...
  11. Mother of Jibril
    I tried calling about an hour ago... the number is (212)616-3006. They're manufactured in Australia, but distributed in the US by a company in New York. The woman I talked to said, "Wow. Nobody has ever asked me that before." She sent me to somebody's voice mail... hopefully they'll call back soon. I know what you mean about the sweet fix! I...
  12. Mother of Jibril
    I think I had a reaction to a KIND bar and stopped eating them. Are they O.K.? Since they make bars that are not gluten free, I assumed that the gluten free bars are not processed in a wheat free facility. Do you know otherwise? I just looked them up and they make products containing oats as well. Since I am oat sensitive, that could have been what bothered...
  13. Mother of Jibril
    Once you're diagnosed with celiac disease it's forever... even if you stop making antibodies, your body will always remember how. I know it's a shock and a huge lifestyle change, but your life depends on it! The good news is that you've found an excellent place to get some support. Welcome to the group
  14. Mother of Jibril
    I was diagnosed with hypothyroidism first... my TSH was 44.3. Do you know what your HDL and LDL numbers are? If your HDL, for example, is 80 then your total cholesterol is not that bad. My cholesterol has always been really low... probably because of the malabsorption. I had to eat a lot of healthy fats (fish, flax oil, nuts, olive oil) just to get...
  15. Mother of Jibril
    In December I had a biopsy for what I thought was DH (turned out to be an id reaction) and I thought, enough is enough... I'm taking too many risks! I stopped eating at restaurants (with the exception of a very carefully chosen meal at Red Lobster for my birthday). I also cut all processed foods out of my diet with two exceptions... KIND bars and dark chocolate...
  16. Mother of Jibril
    That's interesting about the false negatives. I've also read a lot of articles that say you can test negative and still have the disorder... especially if you're not having a flare. I know the gluten-free diet is helping me too. I feel a LOT better. The scary thing about lupus (which runs in my dad's family) is that flares can be triggered by UV light...
  17. Mother of Jibril
    One of my autoimmune symptoms is a lack of moisture... dry eyes (Restasis helps a LOT), dry nose, dry mouth, dry skin, etc... Earlier this month I was tested for Sjogren's syndrome and with the exception of ANA (which was low and "speckled") everything else came back normal. So here's my question... I've read about a lot of people who had a negative...
  18. Mother of Jibril
    What kind of surgery is his doctor proposing? Sometimes you can "wait and see," sometimes you can't. I hope his appointment today is helpful.
  19. Mother of Jibril
    Welcome to the group! Testing for celiac tends to be unreliable in small children, but it's not completely useless. Why not have your daughter tested? The blood test is not too expensive, and if it does come back positive (it could happen) then you'll have a firm diagnosis. Another thing you can do is get a CBC (complete blood count) and a CMP (comprehensive...
  20. Mother of Jibril
    Welcome to the group! I'm sorry that you and your son are having such a hard time. My son gets terrible eczema from casein (all dairy products) and corn. I refuse to try gluten. Casein gave him green diarrhea and made his intestines bleed Have you tried removing any other foods from your son's diet? The most common problems are dairy, corn, soy...
  21. Mother of Jibril
    Welcome to the group! How much gluten were you eating when you were tested? For a lot of people, it only takes a few weeks on a gluten-free diet for tests to come back negative. Also... do you know if they tested your total IgA? It that's too low, you could be half-dead and your blood test would still come back negative. Endoscopies are notoriously...
  22. Mother of Jibril
    Ups and downs are common for the first few months. Part of this is because your body is healing, but it also takes time to figure out all the possible sources of contamination. For example... it took me more than three months (and a very itchy rash) to realize just how risky it was for me to eat at restaurants, even if I wasn't eating any obvious forms...
  23. Mother of Jibril
    I have DQ8 and DQ7 (which are both subtypes of DQ3). I'm intolerant to gluten and corn. Aside from the digestive symptoms, I also have autoimmune hypothyroidism and lots of weird problems with my skin... rosacea, flaky scalp (which seems to be either psoriasis or sebhorreic dermatitis), halo nevi (depigmented areas where my skin is reabsorbing a mole),...
  24. Mother of Jibril
    Sometimes, after being on the gluten-free diet for a while, people on this forum have found that additional food(s) were causing problems. The most common offenders are soy, corn, dairy (casein and/or lactose), eggs, nuts, nightshades (peppers, eggplants, tomatoes), and grains/carbs in general. Unfortunately, it can take a while to figure these things out...
  25. Mother of Jibril
    If one of the tests was total IgA, you would actually want that to come out normal If that one is too low it's very difficult to get an accurate result on the other tests, even if you're really sick. Also, some test are more specific for celiac than others. Anti-gliaden indicates a general problem with gluten (which could manifest in any part of your...
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.