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RoseTapper

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by RoseTapper

  1. RoseTapper
    From my reading and personal experience, kids don't usually get DH until they're in their late teens. In our family, they tend to get DH at about age 2, but it goes away by age 3....and then it comes back at around 19. However, everyone is different. The same applies to how quickly DH can appear after a glutening. For me, it takes only about 15 minutes...
  2. RoseTapper
    I'm 5'8", but my son, who also has celiac, was supposed to be between 6'5" and 6'8" according to growth calculations until he was 11. He began to suffer from celiac symptoms at that time....and his growth slowed tremendously. He was diagnosed with celiac at age 16, and then he began to grow faster. However, he only reached 6'3-1/2". I believe the manifestation...
  3. RoseTapper
    This DOES sound like DH. It usually presents with a small blister that is intensely itchy. When it breaks, it feels the way a cold sore does (hence, the name Dermatitis Herpetiformis--"herpeslike"). In other words, the tissue around and under it becomes painful and feels inflamed. It also takes a while for them to heal; however, the ones I've gotten on...
  4. RoseTapper
    Um...it sounds as though your doctor is not well versed in biopsying DH lesions. He should have taken the biopsy NEXT to each lesion on an area that is clear. The DH lesions themselves will result in a negative reading. Only the clear skin NEXT to a lesion can offer any proof of the condition. You should definitely see another doctor. I'm sorry this...
  5. RoseTapper
    Just wanted to add to this discussion that you might be suffering from Hashimoto's or low thyroid hormones. Brain fog is one of the main symptoms. If you haven't been tested for it, you might consider having it done. Low thyroid can also cause joint and tendon pain--might have something to do with your fibromyalgia. JMOHO.
  6. RoseTapper
    I also suspect Hashimoto's or an imbalance in your thyroid hormones. Three years after going gluten free, I developed Hashimoto's--boy, was I miserable! Also, because the thyroid continued to sputter for a while, it was difficult to determine how much Armour Thyroid I should take. However, I can tell you most definitely that tendinitis can occur when your...
  7. RoseTapper
    Hmmm.... All I can of is that perhaps your diarrhea might be causing dehydration (??).
  8. RoseTapper
    To be frank, I personally feel that gluten challenges are very dangerous to one's health. No matter what the reason (school or to prove something to an insurance company), I don't think it's worth the damage that can potentially be done by a challenge. Once you've chosen a gluten-free lifestyle, your body can react quite badly to the sudden introduction...
  9. RoseTapper
    My son had almost identical symptoms to yours when he was a teenager, and I suffered with those symptoms and others for most of my life. My knees swelled up painfully during my teens and 20s, too. I just returned from a celiac conference where one expert stated that 7 celiacs out of 10 will test negative for celiac unless there has been total villous atrophy...
  10. RoseTapper
    I can share with you what Dr. Alessio Fasano, a leading celiac expert, presented at the celiac conference at Stanford last month. He said that there are five tests for celiac: 1) positive blood tests, 2) positive gene test, 3) symptoms were present before going gluten free, 4) the symptoms resolved upon eating a gluten-free diet, and 5) biopsy. He explained...
  11. RoseTapper
    Just wanted to add that you should have your own dedicated toaster and your own jars of mayonnaise, jam, and peanut butter as well as your own cubes of butter--contamination is very common in a household where others don't follow a gluten-free diet. Since you become ill from very small amounts of gluten, you should have your own shelf in the fridge for YOUR...
  12. RoseTapper
    If it's the DH that's bothering you, please remember that DH occurs when a person ingests both gluten and iodine. That means that you need to avoid seafood, iodized salt, asparagus, and milk that's not organic. Once you've eliminated iodine AND gluten, you should be fine.
  13. RoseTapper
    You sound pretty discouraged--I don't blame you. I think you know that you probably DO, in fact, have celiac and DH, but the tests have you wondering what's going on. I recently returned from a gluten intolerance conference in Minneapolis, and one of the experts stated that 7 out of 10 celiacs' blood tests come back negative unless there is TOTAL villus...
  14. RoseTapper
    I just returned from a gluten intolerance conference in Minneapolis, and an expert there stated that 7 out of 10 blood tests come out negative UNLESS there is total villus atrophy. Very sad. Also, biopsies are notorious for false negatives because of the lack of competency of the doctor performing the biopsy, the fact that the damage may have occurred beyond...
  15. RoseTapper
    For starters, the gene test is done to RULE OUT celiac, not to rule it in. Because more than 30% of the population has either or both DQ2 and DQ8, doctors use gene testing to rule out whether a person has celiac or gluten sensitivity. Being positive for either gene just means that you have the disposition to become a celiac, but that might never happen...
  16. RoseTapper
    I recently read on another thread that DH is a form of eczema.....maybe you should research that angle and challenge your doctor. To properly diagnose DH, the test DOES involve testing skin NEXT to the lesion. If the dermatologist doesn't know this, he needs to be informed (there's adequate literature on this that you can show him).
  17. RoseTapper
    Oh, you're having a terrible ordeal! Many, if not most, of us have been through similar experiences, and they can be disheartening. I swear--dermatologists become dermatologists because they are not competent to be any other kind of doctor (sorry--I know that sounds bitter, but I went to probably a dozen dermatologists to get to the bottom of my DH....and...
  18. RoseTapper
    Your doctor does NOT understand a thing about celiac disease! A person can be a celiac for his/her entire life, but the symptoms can occur early in life, sporadically, not at all, or later in life. My mother didn't have symptoms until she was 67, and even though I've had nutritional deficiencies since I was 11, I didn't have GI symptoms until I was 47....
  19. RoseTapper
    I just returned from the annual conference of the Gluten Intolerance Group at which a pediatric expert from New Zealand presented a number of case studies of babies and young children. Your child's symptoms match exactly one of the case studies, and Dr. Ford explained at length that, yes, such a child should be placed on a gluten-free diet. He feels that...
  20. RoseTapper
    I just want to add here that genetic testing is used only to rule out celiac, not to rule it in. Since 30% of the population has one or more genes for celiac, doctors test for it simply to determine if the person does NOT have celiac. However, if blood tests are positive, a person is symptomatic before going gluten free, and the symptoms resolve on a GFD...
  21. RoseTapper
    DH is caused by ingesting BOTH gluten and iodine. You'll need to get rid of your iodized salt and replace it with non-iodized salt, stop eating anything processed that is salted (chips and fries), and drink/eat only organic dairy products (otherwise, iodine tends to be pretty prevalent). That should take care of it.
  22. RoseTapper
    Try going gluten free and eliminating iodine, too. Generally, DH is caused by ingesting BOTH gluten and iodine.
  23. RoseTapper
    Yes, you're describing a very typical case of DH. Please note, though, that you should also be removing iodine from your son's diet, as well. Generally, both iodine AND gluten need to be ingested to produce a DH rash. Just FYI.
  24. RoseTapper
    The photo definitely looks like DH to me....and I might be able to shed some light on why you sometimes get DH when eating gluten and sometimes you don't. You see, you need to ingest BOTH gluten and iodine to produce DH. That's why it happens when you eat crackers (probably that contain iodized salt) and not when you eat bread. You might consider reading...
  25. RoseTapper
    Oh, yeah--I've been glutened plenty of times by paprika! Be careful!
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