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krose710

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About krose710

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  1. Well the verdict is in...and at this point were "calling in the big guns" as my gastroenterologist said. At this point, my GI is baffled by my small intestine. I am being placed on anti-anxiety medication to basically "numb" me of feeling until we can make progressive steps forward. I am being referred to an Academic Specialist at Baylor Medical Clinic where new trials and treatments are being put into action every day. My GI made the comment yesterday that my small intestine has such great damage to it, that it would appear that I am a celiac patient that eats nothing but bread for breakfast, lunch, and dinner. Of course, thats not the case, and that is why at this point, we are calling in more medical specialists. On Thursday I am being hooked up to have a capsule endoscopy (a pill you swallow that has a camera on each end. It goes completely through the digestive tract taking millions of pictures. You wear a monitor from about 8 am to 4 pm that basically stores all of the pictures taken by the pill and translates it into a video). During this procedure they will be able to look further than they can with an ordinary endoscopy. What they are looking for, but hoping not to find, is ulcerative jejunitis...basically a rare condition in which inflammation to the small intestine has reached an all time high and there is basically no return to normal function. While it is scary to consider that is a possibility, part of me just wants some sort of answer, as horrible as that may sound. I will also undergo my first bone scan to make sure that I am not losing bone already. Again I appreciate all the words of wisdom, advice, and encouragement that many of you have offered. All those sufferring with Celiac disease or any other intestinal disease know that it is a challenging matter, where ruling out things is how we reach diagnosis. So while the road to finding out just what causes my intestine to continue to inflame, I keep moving forward with the hope and faith that we will eventually reach an answer.
  2. Thank you! I really appreciate what you have just said. It does get frustrating hearing "it hasnt been long enough", when my body cannot physically take the pain much longer. I am on daily probiotics for bacterial overgrowth as well, so I can check that off the list. I will try to eliminate more products. I have been eating nothing but fresh fruits, vegetables, and meats, all prepared in the home for the past few weeks. Before that I was still eating gluten free, just less limited. Thanks everyone! I will post tomorrow after the long awaited doctors appointment. ONE STEROID DOSE LEFT FOR TODAY =)
  3. Valid point you have there. IV nutrition is a topic we will be discussing on Monday. I will keep all of you posted. Thank you graciously for getting me through these few days before my appointment! I appreciate all the wisdom and ideas each of you have offered!
  4. Thanks so much. I know some further drastic measures may have to be taken in order to heal. I will discuss all of this with my doctor and a dietician so they can provide me with some information to guide me in the right direction when selecting whole foods. I eat out very rarely but you are right that may be something I have to kiss goodbye for a while! 2 more remaining days of prednisone treatment before my doctors appointment! Very ready for it =)
  5. Havent tried that yet, I will definitely ask my doctor about it and look into it. At this point, I think it is more fear and anxiety that is overwhelming me more than the pain itself. They did put me on a 2 week antibiotic (the name I do not recall, I believe it began with a Z..) because they thought it may be possible that I had a bacterial infection from all the inflammation. Hopefully things start looking up soon, I am just ready for some sort of answer! I made a call in to my doctor today and left a note with the nurse regarding the lack of relief and they are already compiling a new game plan. Monday cant come soon enough!
  6. Again, I do appreciate all responses. This is a frustrating disease in itself. Yes, 4 months doesnt seem like that long...but, the damage to my small intestine has not stayed the same, nor improved but rather further deteriorated. I also have a list of unsafe foods (including what seems like a billion ingredients) that I carry with me when grocery shopping. I have eliminated nearly ALL flour from my diet and stick mainly to fresh fruits, vegetables, and meat. I drink only 100% juice, water, or tea. Let me add that previously I had been going to a general physician for nearly a year before being referred to a gastroenterologist, who then after nearly just one or two appointments ended up at celiac disease. I began my gluten free diet, BEFORE being diagnosed with celiac disease officially in August. Refractory sprue is assumed when Biopsies continue to show villous atrophy coupled with a high celiac level within the small bowel. As I have said, I am 3 days away from completing a 17 day prednisone steroid treatment. I was put on this treatment to allow my immune response to basically stop firing and let the inflammation of my small intestine begin to heal. I have yet to feel any relief. If anyone of you has been here, you know steroids are no fun as the general small weight gain can feel like much more than a couple pounds. Again, I am very appreciative of all feedback. Blessings.
  7. I shop only at the whole foods store. I do eat out occasionally but I order items only off the gluten free menu (yes I eat a lot of salad). I do not consume any product that does not say Gluten Free on it unless it is a whole food product such as fruits and vegetables. I do not even consume gluten free bread because I find it close to repulsive. I do not consume any product that contains flour, unless I first find that it is corn, potato, or rice flour. My celiac disease level in my blood was at 11 when I first went in during the summer to my gastroenterologist. Those of you with Celiac disease know that a normal level is within 1-3. In Novemeber, my level had dropped to a 4 which is a slight positive. I know it may seem as though im whining or trying to make it seem like I have done no wrong. We all consume even the slightest amount of gluten in our daily lives no matter how hard we try. But I am growing frustrated, upset, and concerned. The inflammation within my small intestine is doing extreme damage each day that it lasts. When it comes down to it, I know that I am doing my part, by eliminating all gluten, and while it is the first concern, its extremely frustrating for individuals to continuously ask me if im taking in gluten. I appreciate all responses and all ideas.
  8. Yes. I have done all of the above. I have seen a dietician who reviewed all food choices as well as all products I come into contact with.
  9. I was diagnosed in August as having an extreme case of celiac disease. After 4 months on a strict gluten free diet, abdominal pain continued as well as other symptoms. A repeat endoscopy showed bluffed villous atrophy and the celiac level within my small intestine was sky high. Among those results of my biopsies, an increased lymphocyte count was also found. I am now on the last 5 days of a 17 day steroid treatment, with no successful days yet. Has anyone been down this road before? Refractory celiac disease is said by my doctor to be a rarity, and the fact that steroids have failed to work, is even more rare, especially at my age. I have a doctors appointment this coming week once I complete my steroid treatment. Any information anyone has regarding this matter would be greatly appreciated.
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