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Pokey Oaks

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

Everything posted by Pokey Oaks

  1. Pokey Oaks
    It's complicated, but put simply: like others have mentioned in other threads, if I don't have a definitive diagnosis, I won't be taken seriously.
  2. Pokey Oaks
    I have less than a week to go before my endoscopy, and I feel so unimaginably awful. Would stopping the gluten slightly early change the outcome? I don't think I can do it anymore, yesterday I was in so much pain. Today I feel so sick, including neurological symptoms. It's not fair on me, or my family. I'm a mess.
  3. Pokey Oaks
    I did have blood work done earlier in the year, but I was completely naive about how everything worked, and I had been gluten free for quite a period of time before then. It obviously came back negative, and my doctor said there was no way I could have Celiacs and that it didn't matter that I was gluten free prior to the test (which my gastroenterologist...
  4. Pokey Oaks
    Half a slice of bread?! Is that all? Omg my poor stomach I've been on a gluten binge, and hating every second. What an idiot, I should have asked before I started.
  5. Pokey Oaks
    I'm having an endoscopy done on the 23rd of this month. And my gastroenterologist told me I need to "gluten" myself until then. My question is, how much gluten do I actually need to eat to make sure it's not missed? I feel like I'm overdoing it, but I want to make sure the biopsies (he said he takes at least 4 in different locations) are definitive. I...
  6. Pokey Oaks
    After almost a year of not being heard, I might actually get an answer into what's going on. Because I was told I couldn't possibly have Celiacs because the bloods came back negative (though I had been gluten free for 2 months prior), I started to eat gluten. I started getting sick again, gaining weight, bloated, and my last bloods showed a drop in potassium...
  7. Pokey Oaks
    I've yet to be diagnosed with Celiac Disease, but that's turning into quite a drawn out process. I've gone back to being gluten free for the last week or so, and feeling better by the day. I used a knife and spread some butter on my gluten-free bread that had been used with regular white bread, and a couple if hours later I had a rash on my arm. It's not...
  8. Pokey Oaks
    I've been thinking about it all day, and I'm just going to go gluten free again. Was 3-4 weeks of gluten enough? I don't know, but I've definitely decided I can feel like this anymore, so I'm changing my diet back to gluten-free from now. My stomach churning all day has helped make that decision. As for my family, I'll be putting my children on a gluten...
  9. Pokey Oaks
    Thank you for your response. I know a positive gene test doesn't mean positive for Celiacs, but the benefit for me is that if it's negative, it's something I don't have to worry about for myself, or possibly my kids. My father (recently deceased due to sudden massive stroke) and sister also have a history of discomfort with certain foods, and I have at...
  10. Pokey Oaks
    The 6 weeks I was gluten-free, I felt amazing. I react even more so now, since I resumed eating gluten, than I ever have. Does non-celiac gluten intolerance also cause vitamin/mineral deficiencies? If the villi is normal, would that make absorption ok?
  11. Pokey Oaks
    The tests as written on the results are: Deamidated Gliadin (EIA): <1 (RR<20) H-Transglutaminase IgA recomb Ab (EIA): <1 (RR<4) I'm not which ones these are exactly? I had also only been eating gluten for 3-4 weeks before the bloods were taken, and had been gluten-free 6 weeks prior. With the above tests, and having eaten gluten for that...
  12. Pokey Oaks
    So I've decided to get a second opinion. I'm completely frustrated and have been on the edge of tears for weeks...and I'm not usually a crier! I'm just sick of feeling sick! My bloods so far: IgA and IgG both <1 TSH 2.2 Ferritin 11 Iron 7 ALP 109 (slightly elevated) Vitamin D 21 MCH 26.5 (slightly decreased) My doctors diagnosis...
  13. Pokey Oaks
    Has anyone had the gene testing done?
  14. Pokey Oaks
    Thank you everyone. I'm going to see a new doctor. My husbands cousin has Celiacs, and while they live quite far from us (though still in the same state), I'm going to ask my husbands aunt (mother of the boy with Celiacs) if she can recommend someone in our area. She's a retired doctor, but hopefully still has some contacts. Though I'm willing to travel to...
  15. Pokey Oaks
    So I got my blood work back today. The only coeliac related test performed were IgG and IgA, both of these came back as less than 1, so a negative result. I explained to my doctor I had been gluten-free for 6 weeks a month ago, and she told me it doesn't matter. She also told me that a diagnosis after age 30 isn't possible. Apparently I would have had signs...
  16. Pokey Oaks
    I just had a thought, my doctor told me a couple if weeks ago that my phosphate levels were up, which meant I was developing fatty liver.. After doing some reading, I'm not so sure. Between low iron, low vitamin d, high phosphate and the stack of symptoms (Bloating, excessive wind, weight gain. diarrhea, constipation, abdominal pain, easy bruising, joint...
  17. Pokey Oaks
    Thanks for the reply If the test comes up negative, I'll push for an endoscopy, just to be sure. I gotta say, the hell gluten foods are giving me since I started eating them again...even if everything comes back negative, I'll remove gluten anyway. I feel pretty awful.
  18. Pokey Oaks
    Hi. This is my first post on the forum. I'm currently waiting on blood screening results, the only ones I have back are vitamin D and Iron, both were quite low, which is not unusual for me. I'm awaiting a "celiac screening", though I'm unsure what that measures exactly. My question stems on how long I should've eaten a gluten diet before I had the screening...
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