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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.

Trying To Cope
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5 posts in this topic

Hello,

I have been trying to stay gluten-free from about November 2004. I was diagnosed with IBS about 20 years ago. As the years have gone on my problems have become worse with food allergies and terrible bowel problems. Severe pain with loose BM. I have noticed several improvements since going gluten-free. I no longer have to run to the potty!!! I have fairly normal BM for the first time in a very long time. Generally no pain with BM. My acne on my neck and upper back and jaw line is gone!! My heart does not feel like it is trying to climb out of my chest anymore after eating! No longer winded, "psoriasis" on my joints is completely gone. I have been officially diagnosed with Psoriatic Arthritis and I have to say my joints feel pretty good now! I do have disk degeneration in my lower back so the diet has not helped in that area. I am 41 and I do worry about that. My periods are much easier to tolerate now. So even though I don't have an official dx I do think I have found the answer. My doctor was thinking Crones but he was also very interested in what I would find out by doing gluten-free. I have not gone back to the doc because my insurance is not that good.

Anyway, I feel like I may not be getting enough vitamins. I have added milk for calcium and potassium. I was getting leg cramps. I eat mainly a low carb diet with some chocolate thrown in! Yum! I keep Heresy's bars in my purse. I eat processed cheese. I don't think they have any gluten in them. If they do I seem to be handling them ok. I do have food allergies that limit my choices. I seem to be intolerant of chicken. Although turkey is fine. I can not have anything mold based so regular cheese is out. But I am wondering about mozzarella cheese? Any one know if that would be ok? I tested allergic to: Corn, oranges, tapioca, mushrooms, perch, hazel nuts (walnuts burn my tongue), apricots, onions, arrowroot......I am an odd person aren't I? I do not tolerate potatoes very well. They make my heart race. Pop corn makes my face swell. Rice gives me terrible tummy cramping.

I am looking for some foods I can actually eat that will fit into this mess that I am in. I have lost 25 pounds since November and I do need to see what foods I can add to stop my weight loss now. But I want to stay feeling good too. Any ideas?

Thanks so much,

Lee Ann (I hope this is in the right forum" :)

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Hello Lee Ann,

I had a lot of problems with my joints in the past, too. Especially in my hip joints. From time to time I suddenly had a pain shooting down from my hip bone on the side of my leg, that I was in agony. A doctor told me years way before that happened, that my hip joints are too worn out and that I would have a bone "jumping" out of the joint one day. Dugh! That was a hit in the face. In addition to that I also have disk degeneration in my lower back. From time to time I could feel my disks go "plop" in my lower back. And when I moved my hips forward and backward to stretch out my back I heard that "click" from them moving.

Well, since going gluten-free my joint problems are completely gone. They only come back, when I gluten myself accidentaly. Then what I did for my lower back. Sounds stupid as hell, i know, but I started a good workout on my belly muscles to sustain my back. Now that I read your post today, I realized, it must have worked. Because, when I heard about 50 "clicks" a DAY, I now hear maybe 2 a month. But, like always, if it's not bothering you, you mostly don't realize. I forgot completely about it. Well, I did that with the martial arts and gymnastics training. For you I'd try maybe Pilates??? Or that stuff, that they do on this ball (forgot the name)??? But, whatever you do, I'd do it in a group, cause it's more fun...

Your periods are much easier to tolerate now? That's one thing I experienced, too. With me it's that good now, that I sometimes don't even realize, it starts, so I have to put something in beforehand. Sorry, don't want to be disgusting here. It's just so perfect now.

The BM was back normal again with me, too. I don't have skin from somebody in puberty anymore :P . My heart stays in my chest as well. You could take a vitamin supplement, if you're afraid, you don't get enough vitamins. I take the vitamins from Nature Made. They're glutenfree. Now, I don't know, what to tell you with all your other food allergies. And I don't want to give wrong advices. I would have said, try Nutella on a glutenfree bread to gain weight. But now I see, you can't eat hazelnuts either. Hm, that's really difficult. I eat mozzarella cheese from Boar's Head, which is glutenfree. But I don't know, if you can have that with all your other food restrictions. So, hm, no rice, how about spinach? Doesn't it have a lot of iron, too? Hm, I try to keep thinking about your problem throughout the next days and try to find something. I'm sure, all the others in here have very good advices, too.

Hugs, Stef

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Hi Stef,

I have a Stephanie too. She is getting married in less than 6 weeks and we are very busy with wedding plans!

The back and hip cracking problems you mention are too familiar! When I walk I can hear the bones in my hips grinding together. Not a good thing. I started hip pain in my mid 20's. I have never been way over my idea weight so it is not an issue of being too heavy. I thought maybe it was at times but my doctor says that I was not that far over weight. I do need to look into some exercise program to get my back stronger. It is frustrating because you need to exercise to feel good but you don't exercise because you DON"T feel good! It gets to be a circle that never ends.

My most bothersome symptoms have been the painful BM's, periods, and racing heart. I couldn't even go out shopping without know where the potty. It is a real problem when you are out traveling or shopping, Or on "It's a Small World" at Disney land and you are in this boat thinking you are going to pass out or have a major accident right there in the boat!! That really did happen. I ate a hamburger then got on this ride with my family. I was so SICK I was ready to pass out or vomit. It was horrible. I thought I was going to have to jump out into the water to get out of there! But I managed to do the breathing I learned in Lamaze and that helped me make it to the end of the ride. Celiac makes many things very difficult. Now I can get in the car and go without worrying!

My food allergies add to the frustration but I am wondering if they will get better if I take care of this gluten issue. I feel better over all that is for sure. I have been adding little things back in my diet just to see what happens. Nothing gluten though. I seem to be able to handle milk ok. I am happy to know some chocolate can be eaten.

I have found that I need to eat smaller meals throughout the day. I am not sure if everyone is like that or not. I guess one of the things for me is going from a junk food diet to a more healthy diet. It took a while to get used too!

Lee Ann :)

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Hello Lee Ann,

I eat mozzarella cheese quite often and do fine on it. If you can't take rice, have you ever tried buckwheat? I eat a lot of buckwheat - I grind it into flour and make wafflesand bread with it, though I do add brown rice and lentil flour. Buckwheat, if you can tolerate it, is very nutritous. Another grain that is easy to digest for celiacs is millet; and there's a new one called teff. I tried making porridge from that and it reminds me of cream of wheat with a nutty flavor.

Hope this helps.

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Hello Lee Ann,

my hip pain started when I was about 22 years old. The entire symptoms thing started, when I was 21. You're right, it is a real big problem and very hard with pain to first get started with something sportive for your health. I must admit, if I wouldn't have been doing sports all my life, I would have had major problems with that, too. But after a while with martial arts you get a lot of self discipline, even if you have pain, so I was very used to it already. When you can go on without blinking an eye after getting kicked in the face, you master other stuff, too. After a while you just learn to get tougher. My advice for you though is, start doing exercise with a very good friend and somebody that can "pull" you, if you understand what I mean. And somebody that doesn't let an "excuse" count and pushes you real good. I'm pretty positive, that you can DO it. You have the will to get better and that makes you very powerful. You probably don't realize that yourself, but even if you make only the step to get signed up for a class, it's already a big step in the right direction. And with me it's like that, if I pay money for something I'll go the entire way in the end, cause I don't want to put my money down the drain. What helped me also was, to tell friends, that i'm going to do this and that. And because I didn't want to disappoint anybody, if they were asking how all was working out, I did it and did it good at the end. So, if it helps you, tell me, if you signed up for a class. And I expect you to do it then and tell me how it worked out for you, ok?

Good luck, you can do it.

Hugs, Stef

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