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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

GeorgeW

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  1. Thank you all. I'll cross that bridge when I come to it. I had an aortic valve replaced in 2010 so I am considered a cardiac patient also. I am currently on a low sodium, low fat, gluten free diet. There's not a whole lot more to give up. At least that's how I feel. George
  2. Hi all, Well I got a phone call from my gastro yesterday and he said that microscopic biopsy does indeed show that it is microscopic colitis, otherwise known as lymphocitic colitis. He did start me on budesonide. He said 30 days on the steroid and then a weaning off phase and I should be good as new. Hopefully that is the case. Dee, My pain was always left sided only and my doc said that I had inflammation in the sigmoid colon which is on the left side. The fact that you have pain on both sides might indicate something else. George
  3. Thank you for asking! 😀 So my samples all came back negative. I saw the new gastroenterologist Monday and he was also surprised that the other one didn't run more tests either. Just from my description of what happened he had an idea that it was probably microscopic colitis but he needed a tissue sample so he scheduled a colonoscopy for Friday (2 days ago). I had the colonoscopy and he said that there was inflammation in the sigmoid colon which is probably causing the left side pain. So I have to wait until the tissue sample is analyzed but in the meantime he wants me to take 3 doses of pepto a day. He said that if it's microscopic colitis a low dose steroid would clear it up with no after effects. He also said that microscopic colitis isn't uncommon in celiacs.
  4. Thank you for this information. I will certainly look into it. I went back to my primary Dr and explained the situation. He was unaware of the diarrhea (29 days now) and was appalled that the gastro didn't do any further testing. He also thought it was time for a 2nd opinion from a different gastro. I was all for it. So, my primary had me do the stool sample testing over again checking for everything, not just C-dif. I was given the "kit", which the gastro had never done, with the 4 tubes, 3 partly filled with some liquid and 1 empty. Also the "hat". I was worried that I might need a sombrero more than a hat. It was the most disgusting thing I have ever had to do and I hope I don't have to do it again any time soon. So I have an appointment with the new gastro this coming Monday but in the meantime, no meds to combat the diarrhea and lately I have avoided leaving the house in fear that I might get an "attack". Usually my wife and I like to go out to a Mexican restaurant on Cinco de Mayo, but might have to forego it this year.
  5. I'm going to contact my primary Dr and see what his take is on this. I know I can't wait another 4 weeks to go to my gastroenterologist. Today marks day 23 of diarrhea. Since switching back to Imodium it has gotten worse. I think that the other 2 medications, even though I couldn't tolerate them and they didn't stop the diarrhea, at least slowed it down a little. If my primary has no clue, then I am definitely contacting U of C. The only thing stopping me is that they are out of network for my insurance plan so it would be more costly.
  6. Cycling Lady, LMAO at IBeStumped! So true. Yes, he is trying the band aid approach it seems. That's probably the most frustrating thing of all. So yesterday I get a call back from his office and they say to stop taking the Viberzi and switch back to Imodium! I reminded them that Imodium didn't work, I had already used it 8 days with no changes. His assistant informed me that that is all he can recommend at this time until he sees me at my next appointment which is 5/24! I live near Chicago and I am about to make an appointment to go to the University of Chicago hospital which is the top celiac research hospital in the country. Hopefully they can give me better answers.
  7. Hi everyone, Just an update to my situation. I had thought that I might be getting better since I started adding gluten-free grain back into my diet but I was wrong. It seems that the Methscopalamine Bromide just delayed the effects, didn't stop them. I had to stop taking it because one of the side effects is to stop sweating, which I did. There were times when I felt hot and almost couldn't catch my breath. Anyway, my doc put me on Viberzi instead. I took 3 doses, 1 Tuesday evening and then 1 Wednesday morning and then again Wednesday evening. Each time I took 1, it seemed that about half an hour later I would develop severe abdominal cramping, pain in my neck, shoulders and upper back and a feeling like my insides were on fire. My face felt like it was hot and tingling. It wasn't warm to the touch but felt like it to me. Worse of all is it didn't work anyway, I still had diarrhea. I stopped taking Viberzi after reading the precautions pamphlet which said, "stop taking Viberzi and tell your doctor if you have abdominal cramping, pain which radiates to your shoulders or upper back." Go figure. Anyway, today is 3 weeks straight of diarrhea and still no diagnosis and not sure what he's going to want to do next. George
  8. First of all. Thanks to everyone who has replied to my post. You have given me lots to think about that I would not have considered otherwise. Knitty Kitty I think you may be on to something since I had a sandwich 2 days ago and yesterday (Aldi gluten-free bread of course) and yesterday I only had 1 small episode in the morning and nothing since. This morning I had Bob's Red Mill gluten-free oatmeal so we'll see what happens. Plumbago, I have no pain in the ribs, the pain is in the space between my bottom rib and the iliac crest of my pelvis. If my x-ray vision were working, I would say that it is my sigmoid colon that is giving me pain. Tests however have shown nothing wrong.
  9. The only change in the diet was an elimination of all grains. Everything else was food I had already been eating. Chicken, fish, lean beef or pork, fresh fruits and vegetables.
  10. I guess the point of my original post is being missed. I'm saying that I know that I haven't ingested any gluten in the past 6 weeks because I was doing the No Grain No Pain 30 day diet which is totally grain free and then I switched to the DASH diet which is also grain free for the first 2 weeks and yet I've developed this diarrhea which so far has lasted over 2 weeks. When I have been glutened in the past, and it wasn't often because I never cheat, symptoms only lasted a day. This makes me wonder if the diarrhea is due to celiac disease at all or maybe something else? I have also had the pain in my side for over a year. When I lie on my left side it hurts more due to pressure. Then when I roll on to my back or sit up, I get a queasy somewhat burning sensation in my stomach which is followed shortly thereafter by another bout of diarrhea. My original question was to ask if this has happened to anyone else and if this is a normal course of the disease?
  11. Even if my pets and wife were free of gluten, most everyone else in the world is not. I come in to contact with numerous people every day. I'm a therapist in a nursing home. If all it takes is to hug someone not gluten-free or pet a dog that eats regular dog food to cause a reaction, I might as well stay home.
  12. Thank you ladies. I called his office to let him know that the medication isn't working but the side effects are kicking in, dry mouth, headache, cessation of perspiration and dry eyes. Now I have to wait for him to call back at the end of the day. I had a colonoscopy last year in January but haven't had an endoscopy since I was first diagnosed 9 years ago. He seems to think that I have become more sensitive to gluten and to switch my pet food to gluten-free, have my wife buy gluten-free makeup and make sure that all my toiletries are gluten-free. That would pretty much make me homebound.
  13. Yeah, he said endoscopy in 6 weeks if nothing changes. He doesn't do camera pills, insurance doesn't cover.
  14. Thanks again for your response. He hasn't really tried ruling out anything else yet. He did have me tested for C-Dif which was negative also. I also have wondered about Crohn's or IBS. I also wonder about other infectious bacteria such as MRSA, VRE, ESBL and E-Coli. I haven't run a fever in any case. He currently has me on Methscopalamine Bromide which isn't working and talking about switching to Viversi. The thing is, I have been gluten-free for 9 years and have only gotten glutened accidentally a few times but the symptoms pass in a day or less. This has gone on for 2 weeks straight and it's very frustrating. In fact, I have been totally grain free for 6 weeks until recently when I started eating rice as part of the BRAT diet to try and get my symptoms under control. In the past 2 days I have gone back to gluten-free bread and gluten-free breading on a chicken breast.
  15. I have a complete panel done once a year. My last was February. It was completely negative for gluten. The meds were subscribed by my gastroenterologist who is the one who does the panel so I would hope that they are gluten-free. He is suggesting 3 different drugs and since the first isn't working, time to try the 2nd. Thanks for your response.