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pricklypear1971

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Everything posted by pricklypear1971

  1. pricklypear1971
    I suggest you stop wondering if it's DH and get it biopsied or try the gluten-free diet, or both. It's really the only way to know. If the rash responds to gluten withdrawal he has a gluten rash; therefore, he has a problem with gluten. DH or gluten rashes are known to look and act differently from week to week, person to person. It may be the cat...
  2. pricklypear1971

    ARCHIVED Doctors Who Have No Clue

    pricklypear1971 replied to BabsV's topic in Doctors

    I'm sorry you're going through this. I don't really have anything else to say.... I hope you get relief soon. I know it's terrible to be in pain without understanding why.
  3. pricklypear1971
    I'd also recommend restaurant cards if the book doesn't include them. Sometimes people can be patronizing to older adults.
  4. pricklypear1971
    Yes, steroids are an immune suppressant and are used to treat refractory Celiac Disease. Some DH responds, some doesn't. Mine did. However, be warned, it will probably come roaring back worse than before within a few days. Load up on ice packs and Vanicream. It is also normal for DH to flare and recede; however, never healing completely or disappearing...
  5. pricklypear1971
    I'd start with the complete for about 6 months then go down. You'll know if they are helping. Try taking them for a week or two and then skip a day or two. You'll probably notice more bloating, gas, burping or other issues. For some people it's a big deal. Others not as much. I think that 5 month gluten-free mark is a biggie. That's when weird things...
  6. pricklypear1971
    They say if you take too many you can have stomach upset. I think generally one per big meal is advised. I never took more than two per day with meals. Better to take them a bit before the meal.
  7. pricklypear1971
    Hummus and sushi. Rice crackers, lunch meat, fruit or veggies. There are lots of exotic rices that are good room temperature or in a salad. I like to mix them in. Chilled shrimp and cocktail sauce. Yum. Salsa and chips and guacamole. Buffalo mozzarella/tomato/basil/balsamic vinegar with Italian ham.
  8. pricklypear1971
    Try the Enzymedica line. They have a good reputation.
  9. pricklypear1971
    I can't say anything new, but yes....I was a klutz that would walk into door frames. And the door frames weren't moving. I noticed when I got glutened in Dec the clumsiness came back quickly. Especially in my fingers. Vitams help me alot. I was low on d3, iron, b's. Still on supplaments.
  10. pricklypear1971
    Drink a cup of coffee with them? More oil? They say butter goes further in gluten-free, I don't know if the same is true with coconut. I love using coconut oil but don't know a thing about using it as a sub.
  11. pricklypear1971
    It isn't unusual for children to have negative blood work and endoscopes but still have a positive reaction to going gluten-free. They think perhaps the dont have enough antibodies and damage to show up on tests....unfortunate for testing but great she doesn't show obvious internal damage that they found (that's another problem - damage may be there but they...
  12. pricklypear1971
    Corn starch, by itself, is gluten-free. I'd be suspicious of any ingredient in a Chinese restaurant that you can't read ingredients of. Soy sauce (which is usually full of wheat unless Tamari)is ubiquitous and used in many Chinese sauces. Bottom line, if you can't confirm it don't eat it.
  13. pricklypear1971
    I have three 9 year old boys in my house. We are eating whatever I find in the freezer since I can't get rid of the two that aren't mine. Hubs is on the golf course in 100 degree heat so there's no relief (or trip to the store) in sight. I just fed them the last of the retried beans and corn tortillas. They'll be chewing on my ankle next. I've got to...
  14. pricklypear1971
    Yes, the NCGI label is interesting. It gives docs "permission" to dx you with something for which there's no test for but symptoms match. I wonder what will happen when there's a test?? I found a study that shows people with DH have some additional antibodies, in addition to IgA in the skin that makes us super fantastical special. So we are a subset...
  15. pricklypear1971
    I suggest reading around the University of Chicago Celiac Center website. They have lots if info that may help you talk with your parents and learn about Celiac Disease. They also have great little factsheets that are printable for you, your parents, and your doctor. Open Original Shared Link
  16. pricklypear1971
    Dani, I understand how you feel about not taking supplaments. The only time I voluntarily took them was while trying to get pregnant, during pregnancy, and while nursing. And they probably saved my son from defects. After I was dx'ed with Hashis I took what my doc rx'ed for a while then quit because (you're gonna love this) they did make me feel better...
  17. pricklypear1971
    There's busy and there's busy. Lunch time is busy. A bus of kids is busy. We have several around us do it lightens the load. And busy is the worst time for gluten-free anyway. Any place is more likely to make a mistake.
  18. pricklypear1971
    If you're looking for a good gluten-free cream try Vanicream. No Aveeno! If he will allow you, put some ice packs on the rash. Yes, get the rash biopsied. It's your best bet, at his age, for a Celiac dx if indeed it is DH. Babies test neg most times on blood work and endoscope. Poor little guy. If you can't get a doc to biopsy it (and id...
  19. pricklypear1971
    Funny, sad, true.
  20. pricklypear1971
    Yes, whatever your main ancillary aggravation is - you must deal with to get that first "lay down". I found its much easier once you find the biggest trigger and control it (aside from gluten). For me it was iodine. Especially carageenan and egg yolks. And omg seaweed (sushi).
  21. pricklypear1971
    Oh geez. And we thought they were bad in the States. I've actually had decent luck with pharmacists. I would reco brands but I've never gone down the soy free route. I use Enzymedica enzymes. You might check and see if they meet all the requirements and are available to you. They are very well respected. I use Weleda salt toothpaste but it has mint...
  22. pricklypear1971
    I couldn't use it on my pits. It just burned like a SOB. I found a Tom's that was ok but I have no idea if it's corn free, low sals....Dove ended up working best for me but I know it bothers you.
  23. pricklypear1971
    I found anything that "irritates" me irritates DH if it's flaring. In the beginning I had neuro + DH aggravated by MSG and that was awful. How do you deal with your armpits on fire when your brain doesn't function and your heart is going 100 mph and you're paranoid and angry??? OMG. Yes, Mo, until you get DH to lay down a gnat fart will probably...
  24. pricklypear1971
    If you're looking for organics, Costco has the best price I've found. At least $1+ less per pound than other places. I do think they are put in the water tanks though, not air chilled. They have organic ground beef, too. I can't get buffalo meat there, though. I can get it at Safeway and Fry's, though.
  25. pricklypear1971
    Isn't dry mouth linked to Sjogren's?
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