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frankenstein

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

Everything posted by frankenstein

  1. frankenstein
    Just to close the loop here, a genetic test confirmed that this is not celiac. Wishing all good health.
  2. frankenstein
    Thanks. Helpful information. So much of my stuff seems to not fit the celiac experience I dunno.
  3. frankenstein
    Sorry no I mean outside of a testing scenario. If a person with celiac eats gluten, how long after eating do you feel worse from it?
  4. frankenstein
    Understood. Just to note though I really really don't have much gluten. Like especially when in low FODMAP it's been no gluten. My current take is the fodmaps are making me feel crummy since there's not much I'm eliminating diet wise I haven't been already. And I nearly always make my food. If one feels bad from gluten before going gluten free, how many...
  5. frankenstein
    Thanks. This is a bit overwhelming. I don't think I have it. I'll continue to eat gluten free for some time and see how I feel. Currently it makes me feel worse so we'll see. I wish for the bloodwork done this year that I had been told to eat gluten for six weeks before since my diet was different this year because of my issues to see if the thing in 201...
  6. frankenstein
    Thanks I think I get what you mean. FODMAP initially provided me relief when i did it last year with different symptoms. This time around, when I went back on it, it is not doing much. I guess I'll do the genetic one. If I understand correctly about "total IGA test ", you are saying by doing it, it can show me if i have the rare condition, which would...
  7. frankenstein
    Hi please see post 1 for what i had done in 2018 through LabCorp. That was the one that had the weak positive. Sorry I don't know all these terms so I am just writing down what the paper says. In Post 22 i am quoting Scott's advice as i am confused about it. Post 22 isnt talking about myself.
  8. frankenstein
    Hi Scott. I am confused. You first said "Get a total IGA test done--you can do this while on any diet". Then you said "I'm not really sure how helpful doing a new total IGA test would be at this point." Can you clarify?
  9. frankenstein
    Thank you. I can. I appreciate the offer to help. I am carrying being burned badly by people who led me in the wrong direction before. I took some herbal supplements in April that gave me immediate malaise, I had a month where I had to force myself to eat through pain, I lost 10-15 lbs in a month, and since April pain has been a frequent factor. My gut was...
  10. frankenstein
    It's not stomach located type symptoms so it does not seem like that
  11. frankenstein
    It is rabbit holes to go down the route of even if the lab work won't spot it. And it's outrageous for the other forum writer here to say you have constipation so that certainly means you have these super rare deficiencies. I was hoping this forum would be different than what it is. Again we are not meant to chat here and I wish us all good health.
  12. frankenstein
    You quote it to Buddha on your profile. My we are not meant to chat with a cordial farewell. Your response was not.
  13. frankenstein
    You... you do realize your quote here that you attribute to Buddha is not actually a Buddha quote?
  14. frankenstein
    Hello. What are your credentials? Constipation can happen due to hundreds of issues. You seem to have quite a focus over the years on thiamine. What I described is not gastroparesis. I do not lack magnesium and B vitamins. Thiamine deficiency is rare in the US, even in those with celiac. I wish you all a good day. We are not meant to chat.
  15. frankenstein
    Currently constipatory or just like not everything coming out as it used to, a mix of burning pain and intense discomfort, severe tightness with no way to relieve it, energy draining discomfort, cramping some of the time, and occasionally the pain is so bad it feels like someone wringing the intestines like a towel. Often feeling like everything's is just...
  16. frankenstein
    Okay so is the total IGA screening the only piece that was missing there? Just out of curiosity is that something that is now standard that wasn't standard 5 years ago? Would I have to eat gluten a bunch for 6 weeks to do it? Lastly if Mayo still recommends that but a doctor does all but one of it but then does the biopsy in a way doesn't the biopsy kind...
  17. frankenstein
    Is the bloodwork like the endoscopy where you have to eat gluten for 8 weeks, if I were to theoretically try it again?
  18. frankenstein
    I have had a battery of tests, no? Just trying to resolve that.
  19. frankenstein
    "Gastrointestinal Beriberi does occur. It's not rare. Doctors have been under diagnosing it. " My symptoms do not match it and any condition that has the only place where it shows up on the internet is NIH studies is rare.
  20. frankenstein
    I'm sorry, but....Beriberi is an extremely rare condition. If you are going to mention it, you are not being helpful if you are not stating as such. In addition I do not have anorexia, nausea, vomiting. My question here is asking about Celiac and with all due respect please do not go diagnose rare conditions, that is a problematic issue of internet discussions...
  21. frankenstein
    Thanks. I see what you mean. But politely, again, I have had a complete battery. I had extensive antibodies that are used by 99% of people to get diagnosed or diagnose with celiac. I have had two biopsies. "But in a way you contradict yourself by allowing the input from the dietician to cause you angst if it is a outlier. But maybe it bothers you because...
  22. frankenstein
    "I understand what you are saying about distrusting "doctor Internet" but even worse is the carte blanche trusting of the medical community." I agree that both are not good, but imo both are equally not good. I've learned the hard way. I'm sorry it took so long for you to get there. I do think it's a bit different though because yours was found once they...
  23. frankenstein
    I appreciate it and I am sure there is value but I would think Quest and LabCorp would include it in their standard panel and be current with things. I'm sorry and I know I don't know much here, but I find language such as "operating under the dated assumption" as Internet talk where users exist under this notion that doctors and professional lab companies...
  24. frankenstein
    Hi thanks. It doesn't seem like that that was done in 2018. Maybe that's something that became more standard after that year? It was done in 2018. It just seems like It would have been spotted in two biopsies years apart and that most of the blood work data points to no. I think. Right? Like 90% chance of no?
  25. frankenstein
    Hi thank you for this. i did read the article. it does seem like that my testing had the proper follow up tests that one does when the have a weak positive for what i did. no?
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