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MistyRG

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Everything posted by MistyRG

  1. MistyRG
    I read on the University of Chicago website about what you should be tested for each year after diagnosis. My doctor isn't very knowledgeable on Celiac, and I am coming up on 2 years since diagnosis. At my last appointment (which was the first since diagnosis), I asked her to run the testing again to see if my numbers look good. She ran a "Celiac Panel" ...
  2. MistyRG
    I have 5 kids, and these days are the WORST!!!! I recently purchased some sublingual vitamin B that seems to help. I also grab some caffeine. I know it's bad, but it is harder when I have 5 kids needing my attention when all I want to do is nap!!!
  3. MistyRG
    I have said since I was diagnosed that I don't have the "normal" symptoms. I only had the rash that started this whole ordeal. Now, 4 months into gluten free, my slip ups or unknown gluten is known immediately. I get a heavy, bloated feeling in my stomach, and it cramps up a little. It isn't bad, but it has progressively gotten worse with every exposure...
  4. MistyRG
    I was diagnosed in June, and I decided to get my oldest 2 kids tested. My daughter (5) has complained of stomach pains and issues for the past year. My son (9) has no issues. Ironically, her tests were all normal, but my son's tests came back abnormal. Being new and not really doing anything but asking the pedi to run a celiac panel, I didn't know what...
  5. MistyRG
    Do you get retested to make sure you are healing your body after going gluten free? I don't have a lot of symptoms or issues. Yet my biopsy came back "severely damaged." So I am wondering if my doctor should retest my blood work or something to make sure I am on the mend and not eating hidden gluten since I may not even know.
  6. MistyRG
    I had my testing ordered by my allergist after doing some research. She was happy to order the lab tests (Celiac panel), but she couldn't do anything for me beyond that. I would go see a GI doctor. He has been the most knowledgeable for me! After my lab results came back positive, I did have the intestinal biopsy. It was a VERY easy procedure!! Good...
  7. MistyRG
    Anyone have an idea on this one? Of the Celiac panel, 3 of my 5 tests were positive. Endoscopy is positve. So I have Celiac. However, during the wait, I had my rash biopsied. It came back negative for DH but could be 4 other issues including lupus. So they ran an ANA test on me. Negative is < 1:40 Mine was extremely positive at 1:640 I...
  8. MistyRG
    I got the results back from my endoscopy, and I do have celiac. I am relieved that I wasn't crazy!! I am VERY thankful to have a great team of doctors that listened to me and ran the tests I requested without question!! I am extremely lucky that my diagnosis took only 2 months from rash to positive diagnosis (though rash is negative for DH! Go figure!!)....
  9. MistyRG

    ARCHIVED Negative

    MistyRG posted a topic in Dermatitis Herpetiformis

    While waiting for my endoscopy, I had 2 biopsies of my rash. Both came back negative. Actually, one came back with 4 other possible issues, and they ran some more labs. But I don't believe it!!! The rash was the reason I started this "could I have celiac" journey. I do have a positive intestinal biopsy. So celiac is confirmed . . . I just can't see how...
  10. MistyRG

    Hi, I saw you on my profile. I lost my mother to lymphomia at age 47. I'm sorry about your father. She didn't even have a chance to meet my husband. I hope things improve for you and you get this figured out.

  11. MistyRG
    It's amazing to me how many light bulbs start going off when you figure something like this out. I know for me, I went back through my life and kept making check marks on the "list of symptoms!" It was amazing . . . and while I didn't want Celiac, it's nice to know that all these problems I have dismissed all my life actually have a cause!! And one I can...
  12. MistyRG
    My rash is extremely itchy red bumps. Some are clusters and some single. Some had fluid filled blisters. I have had 2 outbreaks, and they started on my elbows ans went up and down my arms. Then spread to my knees. Pics. Thank you for your replies! It is hard yo be patient!!
  13. MistyRG
    I had my intestinal biopsy done today. Preliminary report is that everything looks normal. I should be happy, but I am confused! I know we have to wait for the results for a definitve answer, but I guess I assumed they would see something. Has anyone has a normal looking preliminary result followed by a positive biopsy? I am also waiting on biopsy...
  14. MistyRG
    I've been going through this as well. Do I want to put my kids (5) through testing so we KNOW . . . or just have them go gluten free? If there was a rash, I wouldn't hesitate to get that biopsy. It's quick and painless!! I am more leery about the endo on them. Personally, I am getting the celiac panel on all the kids, and we'll go from there. I would...
  15. MistyRG
    I posted a similar question a couple weeks ago . . . my version of grasping at straws!!! I was told by my doctor that with the EMA positive, he would be shocked if I don't have a positive biopsy. It is Celiac specific test (as others mentioned). Welcome . . .
  16. MistyRG

    ARCHIVED Juice Fast

    MistyRG posted a topic in Related Issues & Disorders

    I haven't officially been diagnosed. Waiting on biopsy results for DH, and my endoscopy is Monday. But everything points to Celiac . . . So, I am thinking about doing a juice fast to jump start my body (in weight AND health) and get it ready for the whole gluten free lifestyle. Because I plan on making a lot of dietary changes, I figured this would give...
  17. MistyRG
    Looks like my rash. I can't say mine is positive for DH yet (though dermatologist thinks so), but my biopsy should be back soon.
  18. MistyRG
    Now that I possibly have celiac, I am watching my kids like a hawk!!! My daughter (age 5) had stomach issues a few months back. We couldn't pinpoint a specific time it would bother her (after meals, before meals, when she didn't want to do something . . . ). Doc ordered ultrasound and blood work (not celiac related), and everything was normal. They...
  19. MistyRG
    Now that I possibly have celiac, I am watching my kids like a hawk!!! My daughter (age 5) had stomach issues a few months back. We couldn't pinpoint a specific time it would bother her (after meals, before meals, when she didn't want to do something . . . ). Doc ordered ultrasound and blood work (not celiac related), and everything was normal. They...
  20. MistyRG
    My family rarely gets sick (5 kids - me and my husband). We are big into Sambucol. We use it (the extract) every time someone starts to get the sniffles. The only person in my family who gets sick is my husband because he doesn't "believe in that stuff!!!" I make smoothies for the kids a few times a week full of fruits and veggies (great immune booster)....
  21. MistyRG

    ARCHIVED Family

    MistyRG replied to MistyRG's topic in Coping with Celiac Disease

    Thank you for all the replies. My father died from non-Hodgkins Lymphoma 11 years ago. I have wondered since this came up if he was just undiagnosed Celiac. :sigh: My daughter has stomach issues. She was put back on zantac (had reflux as a baby) just last month. She also gets mouth ulcers all the time. My oldest son has a lot of ulcers and rushes...
  22. MistyRG
    Thanks . . . I have been reading this forum (and any other website showing up in google!) all day!! I have said that while this isn't optimum, it does explain A LOT (though I don't have a lot of symptoms), and it is good to have answers. One part that is really getting to me is my father died from non-Hodgkins Lymphoma. I wonder if he had...
  23. MistyRG
    Thank you for the replies. I guess I'm wondering if these results can mean something else, or if I can just hang it up and call it what it is!!! I'm guessing that I will at least have to cut out gluten. As far as an official Celiac diagnosis, I will probably have to wait for the biopsy. But do these results pretty much mean Celiac or could they point...
  24. MistyRG

    ARCHIVED Family

    MistyRG posted a topic in Coping with Celiac Disease

    I am sorry if this has been asked. I skimmed but didn't find an answer. Does your family go gluten free (or mostly) as well? I have 3 out of 5 positive labs and see the gastroenterologist in a couple weeks. I am just trying to figure out how this will all fit into my life!!! My husband will probably be difficult. I don't know if he will...
  25. MistyRG
    I recently gave birth to my 5th child and had a horrible itchy rash break out on my elbows and arms . . . then my knees. All my research said DH, but I had no other symptoms and dismissed it. Then I read a blog about a mom who had no stomach issues but a few others and was diagnosed with celiac. I decided to get tested . . . just in case. Now, reading stories...
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