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suziq0805

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Latest Celiac Disease News & Research:

Everything posted by suziq0805

  1. suziq0805
    I set up an appointment with a dermatologist, but not for 2.5 weeks. I've been gluten-free since being diagnosed gluten sensitive (just a few days). Do you have to be eating gluten for DH testing?
  2. suziq0805
    The reason I'm curious is because I am not celiac diagnosed...but am diagnosed gluten sensitive. Is it possible to have DH with gluten sensitivity, but not celiac? Is DH genetic? This may not even be DH at all, but I have a son that we suspect gluten issues with and if I would have DH I wonder if doctors would look a bit closer into it for him.
  3. suziq0805
    I've been on a gluten-free diet for a few days now and it seems like some acne I had on my face may be clearing up. Can gluten cause acne? Or could this really have been DH? Some of the pimples would hurt sometimes and occassionally it would slightly itch, but it isn't crazy itchy like I thought DH was supposed to be.
  4. suziq0805
    I think my plan is tomorrow I'll look into making sure I have had all the bloodwork done to make sure it isn't celiac before I go too gluten-free. My doctor seemed confindent that it's a sensitivity, and I really do feel it's a gluten issue. I've been misdiagnosed twice before so for my own peace of mind I want to make sure everything is ruled out. With...
  5. suziq0805
    I'm wondering if what he was getting at is that ingesting gluten wouldn't damage my body like someone with celiac disease. He said it wouldn't be putting me at risk for vitamin defeciencies or lymphoma like someone with celiac. He gave me a certain amount but it was kind of confusing. But he really seems to know what he's talking about so I wonder if there...
  6. suziq0805
    Well I went to my doctor appointment today and he diagnosed me with gluten sensitivity. My biopsy showed no sign of celiac, but my intestines are red which he said is not normal. He said gluten sensitivity can cause that. Autoimmune disease could also cause it he said, but he suspects a gluten issue. But I'm supposed to follow up with a rheumatologist...
  7. suziq0805
    Doctor said there were not any signs of celiac disease in my biopsies. I almost cried. I actually wanted to be diagnosed. Even though being gluten free for the rest of my life wasn't something I was going to be excited to do, if it meant that I might not have flare ups of pain for the rest of my life it would be totally worth it. My doctor said he didn...
  8. suziq0805
    As I understand it (and someone please correct me if I'm wrong), no gluten means just that...no gluten. The 20 parts per million is a level that someone (Europe??) came up with as a number that most celiacs will not react to. Some super sensitive celiac may react to gluten free products if there is gluten in there but just falls under the 20 parts per million...
  9. suziq0805
    Biopsy is done!! The general surgeon who did it seemed pretty good (via referral from my GI since insurance paperwork didn't cover where my doctor does proecdures). He seemed like he doesn't expect me to get a positive biopsy for celiac but did the procedure since my dr. had ordered it. He took 15-25 biopsies at various locations. He said things looked...
  10. suziq0805
    Well I think I have it all figured out!!!! My doctor recommended someone else to do the procedure and I'll follow up with my original doctor. It's a general surgeon doing the biopsy and after I questioned that a bit I discovered the surgeon has done several of these procedures before. He'll take more than 1-2 biopsies...actually up to 20! My GI doctor...
  11. suziq0805
    So I've contacted a few places today. One GI doctor can get me in this week for the endoscopy. I asked how many biopsies would be taken and the nurse said 1 unless she sees a need to take more. There should be more biopsies shouldn't there? I also contacted Mayo and another GI office here in town. Hoping one of those 2 places get back to me soon so...
  12. suziq0805
    I did have some bloodwork previously (negative), but it wasn't totally complete he said. So he wanted to test me through Prometheus. But since insurance doesn't always cover the Prometheus test our plan was to do the biopsy first and if that was negative then decide whether we wanted to fork out the $$ for that blood test. My symptoms are back. But...
  13. suziq0805
    It's been quite an awful day for me and any advice what to do regarding testing/insurance would be great. I'll try not to ramble too much I'm 3 months into a gluten challenge and biopsy was scheduled for Monday. This morning my doctor called and said for some reason he's not able to perform procedures at the hospital for awhile. (I think he's a good...
  14. suziq0805
    If you feel that you are losing your will to live then please find someone to talk to. Don't give up. Find a doctor that listens. If you do have a gluten issue then read through the forums to find how to go completely gluten free. There are good posts on how to go through your current food to see if anything is safe and what kitchen supplies should be...
  15. suziq0805
    Maybe consider a new toothbrush too. Maybe that's being too careful, but when I went gluten-free I got a new toothbrush also.
  16. suziq0805
  17. suziq0805
    I'll add that here is why I wonder about it with additional family members. I do realize that just because various family members show these issues does not mean they have celiac, but I just wonder. I'm really anxious to find out my biopsy results. If I have a positive biopsy then I'll really wonder. Am I crazy to wonder about these people? My father...
  18. suziq0805
    I talked with father-in-law and he said she gets constipation when traveling, but not really other times. If she takes a laxative then she ends up with diarrhea. And she only had 1 miscarriage. After he said that I realized that it was her mother that had 3 miscarriages, so I got that confused. Her cousin that has celiac also had gall bladder issues....
  19. suziq0805
    Well, there's not an immediate family member that is diagnosed. Some 2nd cousins of hers are. 2nd cousins being diagnosed doesn't raise your risk does it? Not sure if you can prove the celiac came from her bloodlines or those that married in though. I've mentioned celiac to some of my family members once we received my son's genetic test results and they...
  20. suziq0805
    I'm interested in knowing opionions from others here about this. My mother-in-law is scheduled to have her gall bladder removed in a couple weeks and at the same time they are doing a surgery for acid reflux. She's had multiple miscarriages and my husband was born 2 months early. I remember her mentioning she sometimes alternates between diahrea and constipation...
  21. suziq0805
    What lab tests should be ordered for a complete celiac panel? My 18 month old son reacted violently to we suspect wheat when introduced to solids. Genetic tests show 2 copies of DQ8 for my son. I've had tons of weird symptoms for years and am scheduled for a biopsy next week. My husband recently mentioned he's had loose stools for years, and he also is...
  22. suziq0805
    A couple things you could try...if you think your husband could have celiac get him tested. If a family member is diagnosed it increases the chances for you son to have it and doctors may look harder into a gluten issue for your son. Testing in kids isn't always as accurate depending on what age he was tested at so maybe it's worth testing your husband...
  23. suziq0805
    I'm 2 months into a gluten challenge and during this time I've noticed I have a few days of nausea halfway through my cycle...so I'm guessing this is around ovulation time. Never had this before. It feels exactly like morning sickness....I almost threw up while teaching one day. Could this in any way be related to celiac/gluten intolerance if I do have...
  24. suziq0805
    I'm curious about whether the gluten-free products I feed my son are truly completely gluten free. Here are the gluten-free foods he often eats: -Yoplait vanilla yogurt -Erewhon's version of rice crispies -the gluten-free rice crispies -gluten-free cinnimon Chex cereal -Welch's fruit snacks -Walmart's Great Value brand fruit cups -Walmart's cheese...
  25. suziq0805
    I have yet another gluten challenge question. I was gluten-free for about 2 months and am now almost 2 months into a gluten challenge (not really noticing many differences during the challenge so overall it's going fine...my symptoms are neuro pain mainly). My doctor wants to do the scope/biopsies and also bloodwork through Prometheus. I had previous celiac...
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