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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
    What kind of symptoms does your grandson get when he eats those foods? If he had a "high score" on an allergy test then I'm guessing it was RAST (a blood test), but his parents need to consider his symptoms before deciding how careful they need to be. Just to give you an example... My son is intolerant to dairy and has IgE allergies to peanuts and...
  2. Mother of Jibril
    You'll find lots of debates about this if you look back through the archives. IMO, gluten intolerance can be (but isn't always) just as bad as biopsy-diagnosed celiac disease. What kind of symptoms have you noticed in your own case? Keep in mind that gluten intolerance can affect a lot more than just your GI system. In people with DQ5 and DQ6, for example...
  3. Mother of Jibril
    Glad to hear that it was something simple and treatable
  4. Mother of Jibril
    There's a company called "So Delicious" that makes ice cream out of coconut milk When I was really craving ice cream I even experimented with making smoothies using frozen fruit and coconut milk... it's pretty convincing as a substitute! Plus I guarantee it will fill you up. One can of full-fat coconut milk has more than 800 calories. It is hard...
  5. Mother of Jibril
    IMO, it's helpful to know exactly what your genes are. Lisa16 is right about DQ7.5. The alpha portion of that gene (*0505) is very similar to the alpha gene of DQ2.5 (*0501), which is the gene most likely to be involved in celiac disease. Even if you don't have DQ2 or DQ8 it still puts you at risk... although the risk is smaller. BUT... here's what I...
  6. Mother of Jibril
    Hi Jennifer! Doctors can be kind of weird about thyroid disorders. Unless you had treatment for Graves disease or were born without a thyroid or had surgery to remove it... you can pretty much assume that you have Hashimoto's. It's the most common cause of hypothyroidism in adults. I couldn't even get an appointment with an endocrinologist until I...
  7. Mother of Jibril
    Unfortunately, there are LOTS of things that can cause abdominal pain You wouldn't believe how many tests I've had in the last year trying to figure out what's causing my ongoing symptoms. Anyway... it's absolutely possible to have gluten intolerance and not have celiac disease. It's also possible that you have intolerance(s) to other foods. I had...
  8. Mother of Jibril
    Welcome to the group! The "normal" values on a celiac panel are set pretty high so by the time you go out of range you should have enough damage to your villi that it can be easily recognized with a biopsy. That being said... you don't need anyone's permission to go on a gluten-free diet. IMO, you're headed for full-blown celiac, which can have a lot...
  9. Mother of Jibril
    Can you post the ranges for your total IgA? It looks to me like you're IgA deficient... and if that's the case, you could be half-dead and still get a "negative" result on a celiac panel. If you are IgA deficient, you have a few options: 1) Get a genetic test 2) Have an endoscopy to check for damaged villi 3) Go on the gluten-free diet... no...
  10. Mother of Jibril
    When you start cutting a lot of foods out of your diet (gluten, dairy, etc...) you need to make sure that your remaining foods are nutritious and satisfying. If you're surviving on rice I'm not surprised that you're hungry all the time! Rice (especially white rice) goes through your digestive system very quickly. I eat it pretty much every day, but I also...
  11. Mother of Jibril
    ...and you can be "that celiac" everyone knows who sets a good example by sticking to a gluten-free diet in both good times and bad
  12. Mother of Jibril
    Hi Jason, Congratulations on your newfound confidence in restaurants! I'm starting to find (after almost a year on the gluten-free diet) that if I'm very strict with my diet I have a little bit of wiggle room... which is good, because it's hard to guarantee that restaurant food is gluten-free. Even when you're careful and very clear with your needs....
  13. Mother of Jibril
    Just wanted to add my two cents... As frustrating as it is, I think you just need to experiment and find what works for you. Even the antidepressants are not all the same. Are any of your family members taking them? If there's a particular drug that works for them (and they're genetically-related to you) you might want to give that drug a try. ...
  14. Mother of Jibril
    I'm glad to hear that you're going to see an opthamologist... it could be something more serious like vasculitis. S/he should dilate your eyes and take a look at the blood vessels. Is this something that just started? Have you had symptoms like this before?
  15. Mother of Jibril
    The CMP (and CBC) is an excellent place to start, but it won't tell you anything about your thyroid. Do you have symptoms consistent with one of these autoimmune thyroid disorders? Hashimoto's Disease (hypothyroidism) - Constipation - Weight gain - Hair loss - Dry skin - Brittle nails - Feeling cold all the time - Fatigue - Depression...
  16. Mother of Jibril
    Hi Becci, The way it was explained to me (by a high-risk OB), is that the chances of an "adverse outcome" in pregnancy are highest in the first couple of weeks (as high as 50%), but that drops rapidly to around 6% during the first trimester, 1-2% during the second trimester, and then back up to around 5% during the third trimester (which includes things...
  17. Mother of Jibril
    Sounds like you're retaining water. Are you positive that gluten is the only thing making you swell up? It can also be caused by certain autoimmune disorders (like lupus) and kidney disorders (which are a lot more common than you might think). For what it's worth, the gluten-free diet should help with both of those problems... my fingers have become so...
  18. Mother of Jibril
    Good advice. Also... be very careful about "candida." I'm not saying it doesn't exist, but there's a LOT of really nutty (misinformed) advice out there on the Internet
  19. Mother of Jibril
    A metabolic panel (CMP) and complete blood count (CBC) are inexpensive, simple, standard tests. They check for things like anemia, kidney and liver function, blood disorders, etc... A basic thyroid test (TSH) is also simple and pretty inexpensive. It shouldn't be a problem even on Medicaid. Unfortunately, for a lot of autoimmune disorders (like celiac...
  20. Mother of Jibril
    If you're strict about the gluten-free diet then I don't think you have anything to worry about when it comes to celiac disease. However... before you get pregnant I think you would be very smart to get an ANA test and have your thyroid checked. Celiac disease is an autoimmune disorder and autoimmune disorders tend to cluster together. I'm not 100% sure...
  21. Mother of Jibril
    Welcome to the group! A high RBC count is not dangerous by itself, but it could be a sign of some other underlying problem (which again, may or may not be dangerous). Here's a list of causes from the Mayo Clinic: Open Original Shared Link You might also find that your RBC count goes back to normal on a gluten-free diet (whether you have celiac...
  22. Mother of Jibril
    Hi alexisb, Having a first-degree relative (like a parent) puts you at the highest risk for having celiac disease. The problem with small children is that testing is notoriously unreliable. The tests are designed to show up "positive" only when you have obvious damage to your villi... it takes time to build up that kind of damage! Some kids do test...
  23. Mother of Jibril
    Your celiac panel was definitely negative, but if you feel better being off gluten... stay off it! Your body's reaction is more important than any test. In addition to celiac disease, the DQ8 gene is associated with type 1 diabetes. It can also play a role in developing lupus, rheumatoid arthritis, IgA nephropathy (a kidney disorder), and certain mast...
  24. Mother of Jibril
    Hi EJR, Have you ever tried taking an H2 antihistamine before bedtime like Pepcid or Zantac? That might help with your symptoms while you're trying to find the cause. H1 antihistamines (Zyrtec, Claritin, Benadryl, etc...) help with the classic "allergy" symptoms like itchy eyes, runny nose, hives, etc... but the H2 antihistamines can help with mast-cell...
  25. Mother of Jibril
    I've been off dairy for more than a year, which is pretty amazing considering that I grew up in Wisconsin! A few quick thoughts for you... - Hummus makes a good dip and "creamy" filling for sandwiches - Coconut milk is a great substitute for dairy in smoothies - Tofutti sour cream is pretty good (and casein-free) if you're really craving dairy...
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