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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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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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      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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