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Does This Sound Like Celiac


Happy2bhere

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Happy2bhere Newbie

1992 - Diagnosed with IBS. Learned how to control symptoms and over time learned that large, fattening, greasy type foods were the worst. Mainly high fat foods.

2006 -Virus. They believe it was Parvo. I had a rash (itchy burning bumps) followed by extreme joint pains, numbness and tingling in my extremities. I had diahrea for one months time. I also had bouts of ataxia at this time which I thought (what is going on). My face even went numb at times. I was tested for MS.Five months into this now complaining of only joint pains, I was given a Celiac panel. The only one that was off the charts was for the Antigladin Igg. She then sent me to a GI. I was given an Endoscopy. She said it was negative for Celiac and that was it. I was relieved because the thought of learning the diet seemed a bit overwhelming. However, I was diagnosed with Barett's Esophagus due to GERD. What? I later learned that I had atypical reflux. (burping, belching, nausea with some chest pains). I was put on Zantac. They also found a precancerous polup in GI track. I followed up a year later and they now found an ulcer and a hiatial hernia. I was put on Nexium and checked again 3 months later and the ulcer healed. While on Nexium I began to have EXTREME BLOATING (looking very pregnant). It was to the point the GERD was worse and I lost my appitite because it seemed that food was just sitting in my stomach not going anywhere. I was told to take some probiotics. This didn't seem to help. I was given an antibiotic that only felt in the bowels. This was nice because I didn't have the usual side effects of full body antibiotics. This cured the bloating for some time. I was told I had Small Bowel Overgrowth. I was given a 24 hour ph test and a esophageal mamometry. I was being tested to see if surgery (fundoplication) might help me. They felt for sure my LES was non-functioning. During the testing my doctor retired and met with a new doctor. He looked at everything and said he wasn't sure about the surgery now because my LES had normal pressure. What he did notice was that it was opening without a swallow and was happening mostly at night when lying flat which was causing the Barrett's. He asked current symptoms: bloating, nausea, fatigue after eating. He went back to this blood test and wants me to try the celiac diet. He believes all these things are happening because of Celiac. Has anyone been told they have this with only one blood marker and no biopsy. I also get this warm/burning pain in my feet sometimes at night which I have to put them under cold water to be able to fall asleep. Could all these symptoms be a result of Celiac. The joint pains come and go and move around. He thinks this might help the burping with in turn will help all the other symptoms.

Does this sound like anyone else out there?


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Ursa Major Collaborator

You've got an excellent doctor! Yes, ALL those problems could be caused by celiac disease, and his recommendation to try the gluten-free diet is a good one.

What have you got to lose? The gluten-free diet is healthy, and it might just be what you need to finally get better.

I have a hiatal hernia as well, and it doesn't bother me any more now that I am on the gluten-free diet.

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    • trents
      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
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      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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