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  • Recent Activity

    1. - glucel replied to Bindi's topic in Super Sensitive People
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      Refractory or super sensitive?

    2. - trents replied to Bindi's topic in Super Sensitive People
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      Refractory or super sensitive?

    3. - glucel replied to Bindi's topic in Super Sensitive People
      36

      Refractory or super sensitive?

    4. - Scott Adams replied to Tonya Kane's topic in Gluten-Free Foods, Products, Shopping & Medications
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      Water filters and gluten

    5. - trents replied to aperlo34's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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      2 months in... struggling with symptoms


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    • glucel
      I don't react the same way to all of them but do react badly to many of them where others may not. I also have a touch of hypochondria so when the labs come back too high or makes me anxious. I am dismayed but not really surprised that I may be in the small group of people to suffer a particular side effect. I was originally on warfirin. I think that was the one where I had trouble with vitamin k numbers and or was anemic with low hemoglobin, red blood cells etc.  My blood pressure drops to very low numbers after taking something as simple as turmeric for a few weeks. My diastolic had touched 50 one day before I finally figured out that the herb was the problem. No intention to go for 40 so never looked back. I wanted to try benfothiamine but one of the listed side effects is bradycardia and other stuff that I am not going to challenge esp since I have had and still have to a lesser degree heart rhythm problems. 
    • trents
      What do you mean when you say, "blood thinners are all the same to me"? Do you mean you react negatively in the same way to all of them? Otherwise, they are not all the same. They work in different ways. Aspirin causes the platelets to be less sticky. Warfarin and related meds work by reducing the production of platelets. You might talk to your doctor about alternatives to aspirin. 
    • glucel
      That's interesting because I think that the lousy 81 mg irritates my gut. I'm sensitive to drugs in general and blood thinners are all the same to me so aspirin necessary evil. As they say, better to be a live chicken than a dead duck. 
    • Scott Adams
      I've been using a Brita water filter for well over a decade without any issues. I seriously doubt that these water filter companies would use glues that would end up in your water, as that would be counter to what they are trying to do, which is to purify tap water. Please provide some specific evidence to back this claim up, as such speculation can cause undo fear, as well as reputational damage to these companies. Don't get me wrong here, I am not saying that this isn't possible, but is very unlikely.
    • trents
      Welcome to the forum, @aperlo34! You said you had a colonoscopy "ordered" in July? Has that procedure happened yet? A colonoscopy cannot be used to diagnose celiac disease so I assume the order for the colonoscopy is to check for something else. The procedure used to diagnose celiac disease is the endoscopy. So, I assume you have had blood antibody testing done and it was positive and then you had an endoscopy/biopsy done to confirm those results? That is the normal process for diagnosing celiac disease. Have your constipation/irregularity problems improved since going gluten free? Some of the continuing symptoms you describe would seem to fall into the category of neurological effects (muscle twitching, shakiness, weakness and headaches) and others such as dry eyes, fatigue, stiffness and joint aches sound like they could be autoimmune effects. Are you taking any high potency to vitamin and mineral supplements? Celiac disease often/typically results in vitamin and mineral deficiencies due to malabsorption from the damage to the small bowel lining it causes. I note that your vitamin D levels are barely within normal range and the only B vitamin testes is B12. The B vitamins and D3 are very important to neurological health. And the several B vitamins all work together synergistically. So, they all need to be up to snuff, not just B12. I would suggest starting on D3 supplementation in the amount of about 5000 IU daily and also a high potency B-complex. Costco's Nature Made and Kirkland brand products are good quality and priced well and usually gluten free (and will state so on the packaging). Realize also that gluten free flours and facsimile foods are not fortified as are their FDA mandated gluten equivalents. So, when you cut out gluten, you cut out a significant source of vitamins. One thing to be aware of is that Celiac disease is an autoimmune disorder and autoimmune disorders tend to cluster. That is, when you have one you there is a good chance you will develop others in time. I don't wish to alarm you because I know you have said you already struggle with heath anxiety but many of your symptoms make me think you have some other autoimmune condition going on in addition to celiac disease. Have you been checked for Sjogren's or lupus for instance?  Finally, I am including an article that is helpful to newly diagnosed celiacs in getting a head start on the learning curve of eating gluten free:   
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