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Avalon451

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

Everything posted by Avalon451

  1. Avalon451
    Welcome to the boards, and don't worry about rambling. You have an awful lot to deal with, and so many of us have been through it all. Osteoporosis and osteopenia are BIG markers for celiac. Because there's so little absorption of nutrients going on through those "split and flat" villi, the bones get weakened; thus your poor little girls' fragile bones...
  2. Avalon451
    Why don't you just eat beforehand, go, order whatever, and then play with it? Cut it up, push it around on your plate, sneak bits into your napkin in your lap for later disposal. He's paying for it, not you. If it makes him happy to see you order food, go for it. You don't have to eat it.
  3. Avalon451
    Ugh, I feel for you. I'm in the same place. Been gluten-free for about 2 months, saw initial improvement, but back to where I was in terms of D. I know it's probably the dairy, but I just love my morning mocha or hot chocolate. I'm quite picky about flavor so I haven't tried alternatives yet-- my daughter's soymilk is so sweet it makes me gag. Le sigh...
  4. Avalon451
    Mine goes stale/moldy really fast if I don't keep it at least in the fridge. Freezer is better if we're not going to be eating it within a few days.
  5. Avalon451

    ARCHIVED Is This Dh?

    Avalon451 replied to BeFree's topic in Dermatitis Herpetiformis

    The biopsy isn't painful because they numb the area first. I mean, you get the needle pinch, of course, but the rest is painless. My 16 y.o. DD had two biopsies-- the first one, taken on an older lesion on her elbow, they thought it was psoriasis, and it came out weird, so then the dermatologist thought of DH, and did another biopsy on her back, next to...
  6. Avalon451
    My daughter's first DH biopsy was on a "not very fresh" lesion also, and was inconclusive. She redid the biopsy on a fresh lesion, and that one came back definitely DH. There's a high rate of inaccurately-done biopsies on DH, unfortunately. Might as well have the blood test done, too-- see if anything shakes out.
  7. Avalon451
    My daughter was the one who was diagnosed first, because of the itchy rash on her elbows and knees. The blood tests are notoriously inaccurate for children. I would ask for a referral to a dermatologist and have the rash looked at. It may be awhile before you can get in, so many derms are booked way out, but don't have her go gluten free before then, so the...
  8. Avalon451
    Thanks for all your replies. The support here is so great! This morning she is running a fever, and tummy still hurts, but not in a nauseated way, more like there is a heavy weight on it, she says. Also pain on urination, so we may be looking at a urinary tract infection, maybe from being dehydrated. I have a doctor's appointment for her at 9:45. I...
  9. Avalon451
    Ugh, so worried and frustrated. My DD9 might be our "canary in the coal mine" as far as glutening. The girls have been gluten free for 6 1/2 weeks. Suddenly last Wednesday the 9 year old started complaining that her stomach hurt, and she was convincing enough that I came and got her at school. She lay around all day, threw up around 5 p.m., again at...
  10. Avalon451

    ARCHIVED Rice

    Avalon451 replied to BarryC's topic in Coping with Celiac Disease

    You could be reacting to them. Potatoes are part of the nightshade family, and some people don't do well with them. Nightshades include potatoes, tomatoes, peppers, and eggplant. It seems like I've read on here that some people with celiac find they have other sensitivites, too, nightshades included. You might want to try cutting those out and seeing...
  11. Avalon451
    Those sound like scary symptoms. I hope you get some answers on Monday. I just wanted to say that the flashy vision thing reminds me of my ocular migraines. Is that the same thing as "silent" migraines? I was surprised as anyone to find out that ocular migraines are really migraines, but they don't always hurt. Mine start as a blurry spot in the center...
  12. Avalon451
    I thought the same thing: by the time the nutritionist could see us, we had already been gluten-free for 6 weeks. However, I saw her anyway. She is the nutritionist for Seattle Children's Hospital, and she was very well informed. This was last Tuesday, at our follow up with the GI doc. I started off telling the nutritionist that I had already done tons...
  13. Avalon451
    Yup, although when I said she had two biopsies, what I meant was that the first one was on her elbow, on a lesion that was not particularly new. The dermatologist thought it was psoriasis. When it came back unreadable because of the damage, she started suspecting DH. The next biopsy she did was on a new lesion on DD's back. She told me that she was supposed...
  14. Avalon451
    Couldn't hurt to call and ask for the full celiac panel, including the genetic marker. You shouldn't have to wait for a month; they can order the tests. Be specific and tell them you need the FULL panel (somebody here with more experience than I will know the ones to ask for right off the top of their heads-- I have still have to google it ), especially...
  15. Avalon451
    Can you see a dermatologist to have your rash biopsied for DH? That is how my daughter was diagnosed celiac. They would need to biopsy a current, active lesion-- on the lesion, and then right next to it on the clear skin. It can be hard to get a good biopsy unless the dermatologist is familiar with the procedure (ours is, but it still took her two tries...
  16. Avalon451
    We're Lutheran (not so picky about what the host is made of) and I ordered some Ener-G gluten-free wafers to use; we arranged with our pastor to put them in a little dish next to where we walk up to the front for communion so me, DH and DD could grab one on our way. He's totally cool with it. Today was the first day we tried it. The host totally tastes like...
  17. Avalon451
    I can relate to the issues you're going through. My 16 y.o. had positive biopsies both skin and endo. But she's older and was pretty calm and cool about the whole thing. My younger two daughters had positive blood too-- not as high as your son's, but fairly clearly celiac or at least highly gluten intolerant. The problem is that the 14 y.o. has been dealing...
  18. Avalon451
    If you have been gluten-free since Thanksgiving, then yes, your tests are going to be skewed. It will likely show up negative. You need to be eating the equivalent of four slices of bread a day for 2-3 months for it to be accurate. If you've been reading on these boards for a month you'll know that so many people get the wrong advice to "try the diet" before...
  19. Avalon451
    What a great project! There's lots of resources out there. I saw a good one on Amazon: The gluten-free Kid: A Celiac Disease Survival Guide. It's narrated by an 11-year-old. And if you just search on Amazon for "celiac kids" you'll see a bunch of different books. It seems like many of them are geared for younger than your daughter, but you might check. ...
  20. Avalon451
    Had to share. My 3 daughters all went gluten-free the day of the eldest's biopsy. That was almost 4 weeks ago. They didn't have any obvious or excruciating gut issues-- it was the 16-y.o.'s dermatitis herpetiformus diagnosis that started the whole investigation. So I was wondering if they were really improving yet. We got to talking about it after dinner...
  21. Avalon451
    Happy Valentine's Day! We had pot roast, roasted yukon gold potatoes with sea salt and rosemary, romaine salad with pears, toasted pecans and blue cheese crumbles, steamed peas, and for dessert I made these: chocolate cupcakes (Betty Crocker gluten-free devil's food mix) with strawberry frosting and drizzled dark chocolate, with fresh strawberries. They turned...
  22. Avalon451
    After reading this I got to wondering about our family. As many of you know, DD16 was definitely positive, by blood, plus skin and endo biopsies. The younger two had positive blood tests (we didn't have them biopsied). I had only one faint "possible positive" on the blood test, but lots of symptoms, so the GI did an endo which has just come back negative...
  23. Avalon451
    I agree, you might want to go very simple, whole foods for awhile-- plain chicken, plain veggies and fruits, no dairy. Dairy especially seems to mess us up the first few months while we are healing. Have him help you fix his plate. Cut up his food into bite sized pieces and let him arrange it into a pattern. My kids used to make smiley faces, flags,...
  24. Avalon451

    Hi, I saw that you visited me, so I thought I'd see who you were. My son has DH too (undiagnosed by biopsy). Unfortunately, the pediatric dermatologist said that he would need an intact lesion for a biopsy. That's not going to happen when it is so itchy. It hasn't flared up badly for a long time too...knock on wood.

    Celiacs with DH seem the most sensitive among celiac...

  25. Avalon451
    Ugh, this sounds so frustrating! Doctors can be so clueless. It sure does sound like DH. be sure that your dermatologist knows that for DH you need to take 2 samples, one right on a FRESH new lesion, and one right next to it, on clear skin, like 1/8 inch away, for the result to be accurate. My daughter's first biopsy was directly on an older lesion, and...
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