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OHtummytroubles

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Everything posted by OHtummytroubles

  1. OHtummytroubles
    Hello, I took a break from this board for nearly 10 years as I had a scope done years ago that showed I wasn’t Celiac. Fast forward 10 years, and my troubles continue. Since that time, I’ve had further testing, a gallbladder removal, colonoscopy and an exploratory lap to discover the source of continued stomach pain/bloating/distress. All have turned up ...
  2. OHtummytroubles
    Thanks for the responses. I no longer have the "bumps"; just a completely swollen bottom lip:( It looks like lip injections gone wrong (or what I would imagine that to look like). Of course it hurts and burns. I had taken a probiotic for the first time the same day I ate the beef and noodles and this is when the swelling started. I saw my allergist who only...
  3. OHtummytroubles
    Having a pretty intense reaction the last few days where my lips are very inflamed. It's not just "chapped lips". Have a few noticeable bumps w fluid. The rest of my lips around them fee like sandpaper. Like mini lip colored bumps that you wouldn't be able to see just looking at me. It's über uncomfortable. I did try a probiotic for two days while this breakout ...
  4. OHtummytroubles
    Thanks for the reply. I will do my best. I know people here can't really give me answers without knowing history, test results, etc. Was just a random shot in the dark and a silent prayer for an answer/pain relief. My kids deserve me at my best...and I am really trying for them. If they were older I wouldn't be as worried.
  5. OHtummytroubles
    The bumps scar and leave little purple patches that last for months as eventually, 6-mos to a year or so they become white/pale. It's never numerous, but I understand that time may come. I don't even mind the breakouts as much as my tummy pain unfortunately:/ I will try gluten free again...but I feel I have so much stomach damage and other food allergies...
  6. OHtummytroubles
    Thanks for the response. I would take te breakouts/itching any day over the severe stomach pain that afflicts me daily. My stomach literally revolts 24/7. It's just mentally exhausting. Was hoping that all if the symptoms together would provide a clue. Going just gluten free has never helped me completely as I have other allergies. Unfortunately I guess I...
  7. OHtummytroubles

    ARCHIVED Dh?

    OHtummytroubles posted a topic in Dermatitis Herpetiformis

    OK...last of the pics, I promise :-) In the post earlier I sent links of pics I had taken of my most recent outbreak. This hive'ish swelling before turning into little blisters has happend a few different times in the last 2-3 months. While thinking about it further, I realized some of the little bumps I always blow off may be DH related. Maybe? I...
  8. OHtummytroubles
    Good afternoon all I am sure this is a stretch, but wondering if anyone could take a few moments and look at my pics to see if they believe I may be in the middle of a DH outbreak. With the swelling involved, I was assuming they were bites, however this has happened multiple times over the past two months and will be very random in nature as to when...
  9. OHtummytroubles
    Well I broke down and scheduled a confirmatory EGD for 11/19. Any suggestions for what I need to do as far as amount of gluten to consume daily before then? It really does make me feel terrible - sometimes unbearable, but I want confirmation. Even if the EGD is negative I will have peace of mind that nothing is wrong internally with me. They will re-draw...
  10. OHtummytroubles
    SaraKat, I am assuming that the Dr. wouldn't schedule an endoscopy unless my bloodwork shows a high enough ttg-iga level - so maybe they will order one once I do the second test. I am all for it when she decides to schedule it. The last scope I had done was back in 2006 when all my tummy troubles started (after childbirth).I had went down to 92 lbs at...
  11. OHtummytroubles
    Cass - I had the full Celiac panel at Cleveland Clinic a few weeks ago. Everything was negative except the ttg - iga which was at 16. That is still considered negative by CC standards. They require it to be over 20 to be a "weak positive". Different labs obviously have different levels. My total iga was over 300...so I am not IGA deficient. I was mainly wondering...
  12. OHtummytroubles
    The Cleveland Clinic has agreed to retest my Celiac panel since mg ttg iga was a 16 (my request for them to retest). I also want them to test a few basic vitamins such as the B vitamins and D. My concerns are as follows: 1) Should I even bother re-testing? Are you only technically Celiac if you have a high number such as 80 or 100+ on a ttg iga? I do...
  13. OHtummytroubles
    Tests like total IGa are usually done in-house, but the gliadin, EMA, and ttG tests are usually sent out from your lab to either Promethius, Mayo Clinic - or another Celiac testing lab. That is my experience. I would definitely expect a week or two for labs to come back, unless you go to a celiac center. I went to Cleveland Clinic and had them within a few...
  14. OHtummytroubles
    1) Call the company and make sure you speak to someone regarding the test sample to make sure it was received. Document anyone you spoke to and the answer youw ere given. 2) See if you can dispute the charges with your credit card company/bank - depending on the payment method. Again document everything. 3) Turn company in to the Better Business Bureau...
  15. OHtummytroubles
    I will check out the breakouts with a DH Ravenwood - thanks! They are always fluid filled, and never anything but clear fluid. I have never had a "pus" filled breakout which I thought would be indicative of acne. The fact that they last so long, and are extremely itchy is what had me wondering if it was DH. Maybe this will be my key to diagnosis (if I can...
  16. OHtummytroubles
    Thank-you Skylark - I will look into that. I think I am going to request a new ttg IgA test because I am so gluten light (some days I only have grilled chicken and a baked potato - or rice). I rarely have bread/breaded items because I have such bloating and indigestion after I eat about anything. My plan is to: 1) Eat gluten heavy for a few weeks...
  17. OHtummytroubles
    Yes...I agree with most of you that doctors are way too often diagnosing people with "IBS" without further looking into what may be causing the "IBS". The Cleveland Clinic was a "last stop" for me. I had seen a physician, as well as a Gastroenterologist before who was unable to tell me anymore than "you have IBS". I was hoping the Cleveland Clinic would be...
  18. OHtummytroubles
    Hello everyone. First post here. I appreciate everyone taking the time to read this. It has been a long haul and I finally made my way to the Cleveland Clinic. After speaking to my Gastroenterology doc there she stated I have IBS...and its just my personality ( why I have all the tummy pains ). She did however run the celiac panel and some other routine...
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