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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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I have managed to get glutened a few times, and most recently I have been having really bad awful pains in my hips. It hurts to move them out the side, like if I wanted to cross my legs, and when I'm driving or walking, they are cracking and popping like a box of rice=krispies that fell into a puddle of water. I'm a bit concerned because I have a very thin bone structure and I have not had anything done to check it out aside from the heel scan I had done about 5 years ago. However, I'm thinking that since my heel didn't hurt, it might not be a good test of my overall bone density, as it was just one part of my body. The pain usually subsides, but this last time I got sick, the pain is now sticking around, and I'm having a hard time walking. I went to my doctor yesterday and expressed my concern, however she said that at my age, I'd set a world record for osteoperosis, or even osteopenia. She sent me for x-rays to see if I had any stress fractures, or anything else, and poked and prodded me to make sure that I was not infected, or just stiff. My concern is this-

if the x-rays don't show anything bad, what else could it be?

I don't know where to go after this, and I'm afraid of what will happen if I can't find out what is wrong.

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I can't relate to the rice crispy type "FizzyHips", but the pain - oh yes.

For me it wasn't side to side as much as forward and back. It lasted quite awhile, though not at a constant level. It gradually got worse until I couldn't actually walk, which lasted nearly a month. I do attribute it to Celiac.

I also have had severe pain in various other places, and most seemed bone related in nature. Most lasted two to four weeks. Shoulders, back, ribs, legs, etc. All I suspect were brought on by the gluten intolerance and/or subsequent damage. The pain seemed to be slowly traveling from one area to the next, sometimes subsiding while it was "on the move".

I'm still not pain free, though I believe nearly there now, as there are only a few small places left. It is getting easier day by day to get around without discomfort.

However, I have also experienced what yeast can do to a person's gut. The damaged gut seems to be all the more susceptible to infection. I wouldn't overlook this possibility, not after what happened to me with yeast. I don't know if you are familiar with this subject, but you might want to search the board for "candida", "Caprylic acid", and "Acidophilus". Google those too, and you may find more than you ever imagined.

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I'm just wondering why I'm in so much pain... do you think that there is an attack going on in my hips, (like som gluten mysteriously got there or something..)or is it just something I'm not going to get an explination to?

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I'm just wondering why I'm in so much pain... do you think that there is an attack going on in my hips, (like som gluten mysteriously got there or something..)or is it just something I'm not going to get an explination to?

I don't have a scientific or medical explanation, but I do know that for me it was really painful, and all I could do is find the least irritating movements and stick to those. For my hip, leg and knee pains, I found it GREATLY beneficial to use a leg pillow (or fold up an extra blanket) to lessen the stress while sleeping. It made a huge difference for me.

I suppose it could be the body trying to repair parts which it couldn't deal with while the glutening was going on. Just make sure you give yourself plenty of proper nutrients so the body can do what needs to be done. The freshest veggies - all kinds, dark leafy ones too. Fresh fruits are full of all sorts of good stuff. And, or course, plenty of water.

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Hello Princess:

If I were you I would have the x-ray on your hips and then have the docotr do a bone density test. It is so important that you listen to your body and push your doctor to keep testing until they figure out what is wrong.

I think many of us have learned the hard way that the medical profession is far to willing to say it's all in your head, it's stress or your depressed. We really must take charge of our own health. If you don't get satisifaction from this doctor then change doc's.....

Sally

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Hello Princess:

If I were you I would have the x-ray on your hips and then have the docotr do a bone density test. It is so important that you listen to your body and push your doctor to keep testing until they figure out what is wrong.

I think many of us have learned the hard way that the medical profession is far to willing to say it's all in your head, it's stress or your depressed. We really must take charge of our own health. If you don't get satisifaction from this doctor then change doc's.....

Sally

Have you been tested for RA or sent to a rhumatois specialist? All summer I was having very bad hip pain constantly. I couldn't lay on my side, hurt if I sat too long, ETC. Finally I was sent to a Rhumatoidoligist and they did a lot of indepth tests. Came back that my celiac (and having not been put on a gluten-free diet so long) caused borderline RA...being made worse everytime I was glutened. Still have some pain (hardly any) but it only acts up after I accidently am glutened.

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Thanks for your replies. I'm going to find out the results of the x-rays on monday and see where I go from there... I'll keep all this advice in mind the next time I go to the doctor.

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I get the same pain when I get glutened. My pain feels like it is in the ball joints of the hips and also in the area on my very lower back (almost at the tailbone) where the hips join to the spine. It will ache terribly, and I will feel very stiff and have great difficulty walking and climbing stairs. A heating pad helps a lot, and for me I take extra-strength Advil. It usually lasts 3-7 days and then goes away.

Nobody has been able to figure out what is causing it (I also had the X-rays, etc). The only person who even heard of this was my chiropractor who said he has read that people who have celiac disease often have a problem with pain in these hip joints. But that was all he knew.

If you get any information on what might be going on...please post the findings here...I'd be very interested in anything you learn.

Best of luck

Gabby

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I have terrible pain in my hips and outside of my legs, connecting to my glutes and lower back. My doctor says gluten will "attack" here, or other words that it does make those muscles sore. Mine will pop when I'm biking, probably because of muscle instability. They do not pop when I'm walking.

This past weekend I was in NYC, walking a lot with some running to catch trains. I felt like my body was going to collapse under me because it hurt so bad in my hips and legs. IT band troubles may also be slightly linked to autoimmune disease. This is a band that runs down your outside leg from your hig bone to your knee. I started having trouble with it when I was training for a hlf marathon. It's been almost a year since I've run and it sitll bothers me. IT band troubles often go hand in hand with piriformis syndrome, which can then lead to sciatica. You can look all of this up online to see if it sounds like you. Medical massage, pysical therapy and stretching help, but for me the pain always returns after being active more than 30min to an hour, depending on the intensity. And by being active I don't mean running - I mean just standing and walking. Pain while sitting for a long time is tell tale piriformis/sciatica.

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Do any of you have arthritis in your family? As arthritis is a big thing in my family I can't tell if the pain is worse when a glutening happens or not as my arthritis is so bad.

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I have managed to get glutened a few times, and most recently I have been having really bad awful pains in my hips. It hurts to move them out the side, like if I wanted to cross my legs, and when I'm driving or walking, they are cracking and popping like a box of rice=krispies that fell into a puddle of water. I'm a bit concerned because I have a very thin bone structure and I have not had anything done to check it out aside from the heel scan I had done about 5 years ago. However, I'm thinking that since my heel didn't hurt, it might not be a good test of my overall bone density, as it was just one part of my body. The pain usually subsides, but this last time I got sick, the pain is now sticking around, and I'm having a hard time walking. I went to my doctor yesterday and expressed my concern, however she said that at my age, I'd set a world record for osteoperosis, or even osteopenia. She sent me for x-rays to see if I had any stress fractures, or anything else, and poked and prodded me to make sure that I was not infected, or just stiff. My concern is this-

if the x-rays don't show anything bad, what else could it be?

I don't know where to go after this, and I'm afraid of what will happen if I can't find out what is wrong.

Hello, may I offer you some thoughts? I had horrendous pain and did some reading on arthritis. The deadly nightshade family of plants, that is potatos, tomatos, peppers, eggplant, and related plants cause pain in the joints and up and down the spine. I was having such pains along with my glutein intolerance and remembered other family members complaining of such pain in years past. I eliminated these items from my diet and voila! the pain is ceasing. Please try this. See if it works for you. I hope it will help you.

My best to you in the holiday season, Beadlady

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