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About SabineHP

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  1. Yes, in fact, I was perscribed a purple pill, after a colonoscopy (2001) that showed damage to my esophagus (many years prior to Celiac diagnosis). Was told that taking it for up to 90 days should take care of the problem. Eighteen months later and still taking the purple pill, I was in more agony than ever. Consulted a nutritionist and off the purple pill shortly thereafter. Excuse my ignorance, but is PN caused by B12 deficiency?
  2. In 2016 I was tested for gluten issues via a blood test and a DNA test. Immediately after, I went off gluten. My doctor said it is safe to say that I have Celica Disease and felt that further testing for confirmation was not necessary, based on the 2 test results + 30 years of (retrospective) health history indicating (undiagnosed) Celiac Disease and significant improvements of symptoms after starting my gluten free journey. Now, three years later, I seem to be dealing with Peripheral Neuropathy. I've had this in my feet for 10+ years (mentioned the symptoms to past doctors over the years, but no attention was paid to it). As of lately, I have been experiencing signs of PN in my hands as well and this is not only bothersome, but also frightening. Now I have questions: 1) Is there a form of imaging to confirm PN? If so, what is it? Furthermore, I am concerned about the potential genetic implications for my daughter and my grandson. 2) Would testing be beneficial for them, even though they have no symptoms? 3) Can Peripheral Neuropathy be kept at bay, if diagnosis and going gluten free is done EARLY? 4) Would there be any good reason at this point for me to have the scope/biopsy done? Thanks, all feedback welcome and appreciated.
  3. While traveling out of state, I managed (once again) to get glutenized (is this a word?) Back home and in crippling migraine pain, I took migraine pills in hopes for relief. It turned out that Advil Migraine pills contain gluten and needless to say, I am now in worse shape. The joint and body pains, headache, neck, shoulders, back, it all hurts. Painful bloating (picture 9 months pregnant), brain fog to a point that my head feels like it's under water. I can't follow the simplest conversation A. due to hearing impairment from gluten (anyone else familiar with this?) and B. my level of comprehension has drastically declined (anyone else experience this?) I was diagnosed almost three years ago and I am so disgusted with myself for continuing to get accidental gluten exposure!!! I need advice, a system, something... I don't know how to get this under control😫 Also, I am seeing and reading more studies that are suspecting correlation between Celiac and dementia. This is scary to me, as it runs in family on maternal side and the fact that I went undiagnosed for nearly 30 years. What do YOU do to manage Celiac, control it and keep exposures at bay?
  4. Very true. I guess I'm a little slow in the acceptance process of the facts and differentiating between "well meaning" and "knowing". Also, am I the only one, who doesn't want to hurt other people's feelings, after they spent a.l.l. day preparing and cooking? I know, I understand, I comprehend that, I, myself have to protect me and my health. I just wish it could be done in a gentler way; a way that makes me seem less demanding, self-centered, (eccentric, neurotic). Also: I don't know how to get my friends to understand Celiac and how debilitating gluten ecposure is to me. I get it, they don't have to understand and I have to do what I have to, but stil...
  5. This year, was my first time contending with the question of turkey stuffing. Despite communicating to the Thanksgiving host/cook (well ahead of time) that I had read that it is NOT safe for me to consume turkey meat that had been stuffed with glutinous stuffing, somehow regular stuffing was used. The hostess swore that NO stuffing touched the outside of the bird at any time during the cooking process; this bird was smoked on a grill and the thermometer was inserted in ONE place during the entire time. My well meaning friends cut me the first slices "far away from the stuffing center" and I took a chance. Celiac gluten exposure symptoms started with severe bloating, nausea and insomnia(<day 1) followed by headache, droopy eyes and tiredness (<day 2) and finally brain fog, severely droopy eyes, fatigue and joint pains (<day 3). Acute symptoms stay in effect for a full five days I don't know how the gluten gets inside the meat, but my personal tried and true conclusion, regarding Thanksgiving turkey cooked with stuffing inside the bird: it is NOT safe for individuals with Celiac.
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