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suzyq63

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

Everything posted by suzyq63

  1. suzyq63
    We're dealing with two autoimmune diseases so far. Alison was diagnosed with Type 1 diabetes in January, 2008, and immediately started losing weight after diagnosis. She was screened for celiac, but only had a high IgG antigliadin antibodies; other tests were negative. She was screened every 6 months and the numbers started climbing. She was finally diagnosed...
  2. suzyq63
    Have you tried the recipe using Butter Crisco? I am no expert at gluten-free baking, but I used that recipe and substituted the Bette Hagman blend. I added 1/2 teaspoon of xanthan gum. They came out very well. I even tasted the raw dough; and other than a slight grittiness, the dough tasted exactly like the gluten dough. I've only done it once so maybe...
  3. suzyq63
    Thank you. I only asked about topiramate, so I don't know about any other meds made by Mylan. In the end, we got the prior authorization for name-brand topamax and were able to fill it late this afternoon. I now have to seriously consider if we want to try the generic in the near future. The price for the name-brand went up again (my copay is still the...
  4. suzyq63
    Thanks. I do feel better about using a generic, at least as far as celiac is concerned. I'm still nervous to switch her to a generic due to having such excellent seizure control with the name brand. I'd really hate to lose control. But there's not much more I can do now; we're at the mercy of the insurance company. I should find out later today or tomorrow...
  5. suzyq63
    I may have answered my own question. I decided to call the manufacturer of the name brand to ask them about their gluten-free status. They will only say that they do not use and wheat, rye, barley, spelt, etc. in their manufacturing process. They do not test at the end. So I guess that the generic is equivalent to the name brand as far as gluten-free...
  6. suzyq63
    Thanks to our health insurance company, my daughter with celiac may have to switch to a generic seizure medication. The insurance company messed up and now she is due to run out of her meds tomorrow morning! I called CVS to find out which manufacturer they use for the generic of topamax (topiramate). I called the company and they said they do not use the...
  7. suzyq63
    Thank you. Alison's MCV, MCHC, etc. are all low, which means she has microcytic anemia. B-12 deficiency and pernicious anemia are macrocytic anemias, if I remember correctly. The only number that is high is her iron binding capacity. She has been eating more red meat and taking her Vit. C. After the new year, I'll take her back to get checked again...
  8. suzyq63
    Thank you. I bought Vit. C yesterday to go with the iron supplement. We'll also switch the time she takes her iron to between supper and bedtime so that her stomach should be pretty empty. She also has Type 1 diabetes so depending on blood sugar, it can be difficult to find a time she has an empty stomach. Maybe we should add in an additional iron supplement...
  9. suzyq63
    Thank you very much. We will definitely add in Vitamin C with the iron. I've started making sure she has some red meat every day. Our suppers are usually ground beef or chicken. I guess we'll keep using the Bifera for now since it contains mostly heme iron. Thank you Skylark for pointing out that she is probably still healing. Because we did catch...
  10. suzyq63
    My daughter was diagnosed with celiac in August. We caught it super early (we watched the numbers increase over the course of 2 years) so at her 3 month follow-up, all her numbers were back in the normal range. However, her anemia has not improved at all. Her hgb was 10.1 in July, so she started taking Bifera (recommended by the gastro). At her follow...
  11. suzyq63
    I'm pretty sure now that she was glutened somehow. The pain lasted on and off for about 4 days and then went away. Paula
  12. suzyq63
    Thank you. I will look for both of these. I did find yesterday that using the cut-up lasagna was so much better on her blood sugar (she has type 1 diabetes) than egg noodles. She's only been gluten-free for about 6 weeks, but prior to diagnosis making these noodles with regular egg noodles usually caused quite a bit of trouble with blood sugar. Paula
  13. suzyq63
    Thank you! I am wondering if she was glutened. She hasn't eaten anything different, but maybe it was cross-contamination. We had been doing so well; hopefully this will pass quickly. Paula
  14. suzyq63
    Does anyone make a gluten-free egg noodle? One of our family's favorites is Creamy Italian Noodles. Yesterday I bought Tinkyada lasagna, cooked it partially, cut it into egg noodle size strips; then today I finished cooking them and proceeded to make the recipe. I made plenty of extra so my daughter has a couple of meals' worth of "noodles" in the freezer...
  15. suzyq63
    Is this a common symptom? My daughter has been gluten-free for about 6 weeks. Celiac was caught extremely early stages. Prior to diagnosis, she would often complain of her whole body hurting - like the body aches you get when you're sick. Those complaints had gone away but have come back in the last 2 days, usually at night. She also deals with Type...
  16. suzyq63
    This isn't exactly an ice cream "cake", but it's delicious. My kids request it as their birthday cake. I haven't made it gluten-free yet, but the only change to be gluten-free would be the crust. 16 oz. Oreos finely crushed (or gluten-free substitute) 1 stick butter/margarine - melted Mix together and pat into a 9 x 13 pan. 1 carton ice cream...
  17. suzyq63
    Thank you. I did call the dentist's office. They found the box the cement came in and the information pamphlet inside. It did state that it did not contain gluten, wheat grains, and several other things. So she's all put back together again. Paula
  18. suzyq63
    My daughter was diagnosed almost 2 weeks ago, so we're definitely new to this. Although I have done a lot of research since she also has Type 1 diabetes and expected she would some day be diagnosed with celiac. She has to have a crown "reglued" this afternoon. Could there be a possibility of gluten in adhesive? I will call the dentist, but want to know...
  19. suzyq63
    I am so sorry; I know it's hard to know what to do. My understanding is that if the IgG AGA is high, that is indicating that she is indeed at least sensitive to gluten. So most likely her symptoms are related to that gluten sensitivity. When we first found out about Alison's IgG being high, I went back and forth trying to decide whether to go gluten...
  20. suzyq63
    I thought that I would jump in because my daughter's story starts out similarly. I will try to keep it short. Alison was diagnosed with Type 1 diabetes in January 2008. After diagnosis, she started to lose weight and have intestinal problems. Gastro tested her for celiac (both the celiac panel and genetic testing). The IgG antigliadin antibodies were...
  21. suzyq63
    Thanks. Alison had her endoscopy on Tuesday. Dr. didn't see damage, but he didn't expect to see it. Biopsy results will be in next week, but we'll be away camping; so our follow-up appointment isn't until 8/18. I'll probably try calling while I'm away to see if they'll give me the results over the phone. The dr. took 10 samples, so hopefully that's enough...
  22. suzyq63
    Hi. I'm Paula, mom of Alison, 13, with some developmental delays. I joined a couple of years ago when Alison's celiac panel came back with positive IgG antigliadin antibodies. The other tests were negative, as was the endoscopy at that time. She has been followed every 6 months for the past 2 years and each time her IgG AGA would increase and then her...
  23. suzyq63
    Sorry about jumping in without proper introductions, but we just went through an endoscopy this morning. Alison is 13 with some developmental delays. The hospital where she had her endoscopy was wonderful to deal with. I was able to stay with her until she actually went off to sleep. They wheeled her away and I went to the waiting room. Fifteen minutes...
  24. suzyq63
    Thank you. I had actually forgotten that she had genetic testing done a year ago and has both the DQ2 and DQ8 genes. I guess that's another indication of a likely celiac diagnosis at some point. We had done the gluten-free, casein-free diet several years ago (did it for 6-7 months) to see if it had any effect on the autism (she is high-functioning anyway...
  25. suzyq63
    My 12 year old daughter is being monitored for celiac disease. She had blood work and an endoscopy in June 2008; both were negative. She had blood work done again in January but we weren't able to compare the numbers because the lab was using new reference ranges. She just had blood work done again and these were the results: IGA antigliadin - 44.9...
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