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I Have Celiac, And Am Very Strict With Diet, Yet Still, Am Not Myself

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Hi! I have Celiac, and was diagnosed in January of 2011. I also have a thyroid disorder - hoshimoto's. I have adhered to a strict gluten-free diet since, and many of my symptoms were gone in weeks (extreme fog head, chest pain, eye dryness, thirst, bloating, fatigue, general feelings of unhealthiness). I have always been a healthy eater. The "strive for five" servings of vege & fruit were a non issue for me, as I regularly ate/eat them. I now eat at least 9 servings of vege/fruit. I eat an occasional gluten-free treat, such as pasta, or rice or potato, but normally I just avoid starchy foods. I have gained weight since my diagnosis, regardless, about 20 pounds to be exact. Is there a hidden secret between gluten and metabolism? I have researched and most Celiac victims seem to have just the opposite problem. I avoid high glycemic fruits and veges, and exercise daily (run about 12 miles a week, and walk around 10 miles a week). I eat a low sodium diet based on my family history of high blood pressure. I work a lot of hours a week. I am just wondering if there is anyone else out there who feels my pain! or has tips! I have lost roughly 5 pounds since I added the running into my schedule (6 months ago), and it makes me feel better, but where in the world is a girl to put the other 15 pounds! Also, I have periods of time where I just feel horrid - like my old undiagnosed self, for a few days at a time, even though no gluten, maybe dairy? I am just looking for feedback, or common thoughts..




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I could have written your post a year ago--I was a lifelong jogger and ate a diet high in vegetables and fruits....and, yet, I had gained weight since going gluten free. I was absolutely mystified and read everything on the planet to help me find the answer. What I finally discovered is that I wasn't eating enough healthy fats and protein. I thought I was well educated about what a good diet entailed and what was necessary to maintain excellent health...but I was completely wrong. I had believed the "pyramid" and the so-called "experts" and didn't bother to read the science behind how the body uses nutrients. I found the answer to my extremely long journey in the book, "Primal Body, Primal Mind," by Nora Gedgaudas. "Truths" that I had accepted all of my life turned out to be merely advertisements for food manufacturers and crop growers. The pure science presented, along with the chemistry, astounded me. My understanding of nutrition and how the body utilizes food is now much broader than before, and I can tell you that, after applying the principles, the weight just fell off with little or no effort. My main problem is that I was scared to eat fat, but healthy fat is needed to digest fat-soluble vitamins and to power the brain. There are others on this forum who follow the principles of this book and who have also had wonderful results. Mine will be lifelong and beneficial, because I plan to follow this book's advice from now on. This is not a fad diet--it's the way we were meant to eat. I can highly recommend it. By the way, the author is death on gluten and grains, in general, and she discusses thyroid conditions in detail.


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Hi Megan,

Are you being treated for your Hashimoto's thyroiditis? People with Hashimoto's may need thyroid supplements to maintain adequate thyroid hormone levels and metabolism.


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    • I have the same symptoms.  These symptoms have overlapped other issues that I have and have been left untreated for far too long. Now the pain has gotten worst. My GP believes it's my hiatal hernia.  I have pain below my breastbone, pressure pushing up my chest/throat, dizziness and nausea. 
    • Usually I'm using apps to tell me what celiacs have thought about the restaurants in the area and repeatedly eating at a few different places I haven't gotten sick. Now that I think about it, gluten was a definite possibility. I ,however, just got all negative results from all the following tests so I'm guessing I'm doing ok on that front. -Basic metabolic panel -Liver enzyme panel -CBC -Serum IgA -Tissue transglutaminase(tTG), IgA -Tissue transglutaminase(tTG), IgG -Thyroxine(T4), free direct serum -Thyroid stimulating hormone I thought the same thing about positive antibodies and non-celiac sensitivity reading this; l'm seeing his nurse practioner in two weeks so I'm going to take this and basically argue with what he said and see how that goes haha. I'm gonna guess not real well. I'm going to push being tested for other autoimmune diseases in addition.  
    • I was dx with duoedenitis end of August. No mention of a stomach, esophagus or duoendal ulcer. Just a small hernia. Less then 2cm. But I have a LOT of pain right below the breast bone and I jumped when it was recently touched on exam. I can even feel a small bump in the area. I feel so dizzy and unwell, like some kind of bacteria is invading my brain and am very queasy still.  My heart still feels weird too.  Bloodwork normal, a bit low on protein which is unreal because I get a ton of it but it is always is low if I have not eaten. Mildly elevated myeloycytes and basophils. My GI will probably not see me for a week or two, my primary care put me on sucralfate.  As soon as the food hits my digestive system I feel really weird all over, stomach, chest, throat, head. Just feel like I have this horrible thing infecting my body.  Did anyone feel ulcer pain and have it NOT be an ulcer? I suppose one could have developed since August. 
    • Hi AWOL, Since you weren't able to complete the 2 weeks gluten challenge for the endoscopy the results are not necessarily reliable.   So to be err on the side of caution I think you should assume you have celiac disease.  Your doctor should not assume you don't have it either since the challenge was not completed.  He has no proof that you don't have celiac disease.  He does have evidence that you have negative reactions to eating gluten though.
    • Hi Ironic Truth, Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago .  I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse. My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself. I was gluten-free for 3 1/2 years and improving. Then  I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this.  Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it. I did see one abstract, I can't get my hands on the full article as you stated their is a link: Dig Dis Sci. 2005 Jan;50(1):126-9. Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus). Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M So I will pursue the path of monitoring the  Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums. Good luck with you Boyfriend he is lucky to have you looking out for him.
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