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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? - 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Soft Bones
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I broke my ankle square dancing last month. Broke both the tibia and fibula right above the ankle. Just great. All I did was walk backwards, lose my balance and there goes the ankle. Very embarrassing. Lost balance due to a recent MS attack. Surgeon operated and told my sister I had soft bones. He had trouble getting the screws to stay in. I see him on Thursday and am interested to see what he says about the relation between my soft bones and celiac.

I spent tonight doing some research. Rather depressing since it is as plain as the nose on my face now that I should have a problem. I have unknowingly battled Celiac for about 9 years. I was just diagnosed 2 years ago and immediately started getting my life back but I am extremely sensitive to all traces of gluten. I have been on HRT since the mid-1980s and then due to a breast cancer scare went off of the estrogen cold turkey last August. I am pretty well thru menopause, having the privilege of going thru it twice, once at age 30 after having my uterus & ovaries removed and then again when my body remembered I was approaching 50. Celiac, menopause, stopping estrogen, low thyroid all adds up to high risk of soft bones. I'll find out later which disease I have.

I was walking about 4 miles almost every day. I square dance. I have MS, which I have had since as a child but was not diagnosed until 22 years ago. The MS attack I just had was brought on my stress of an ex-husband......court problems again. First time in 22 years I have had an attack.

I take extra calcium supplements, eat lots of greek yogurt, am almost a health food nut with being so good on my celiac. I'm very healthy if it wasn't for my MS which is more of a hindrance than anything unless this inactivity does a job on me. But, not if I can help it.

Why am I writing this long post? Because anyone out there reading a post on soft bones either, have already had this, or am worried they may have it or develop it. I would love any information anyone has learned that would be beneficial when I approach my doctor in my treatment. We Celiacs have special needs that can easily be overlooked. That is why we have forums such as this. Any info on recovery, diet, things to beware of, etc etc, I would really appreciate. Also any past topics i have missed.

Thank you.

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I broke my ankle square dancing last month. Broke both the tibia and fibula right above the ankle. Just great. All I did was walk backwards, lose my balance and there goes the ankle. Very embarrassing. Lost balance due to a recent MS attack. Surgeon operated and told my sister I had soft bones. He had trouble getting the screws to stay in. I see him on Thursday and am interested to see what he says about the relation between my soft bones and celiac.

I spent tonight doing some research. Rather depressing since it is as plain as the nose on my face now that I should have a problem. I have unknowingly battled Celiac for about 9 years. I was just diagnosed 2 years ago and immediately started getting my life back but I am extremely sensitive to all traces of gluten. I have been on HRT since the mid-1980s and then due to a breast cancer scare went off of the estrogen cold turkey last August. I am pretty well thru menopause, having the privilege of going thru it twice, once at age 30 after having my uterus & ovaries removed and then again when my body remembered I was approaching 50. Celiac, menopause, stopping estrogen, low thyroid all adds up to high risk of soft bones. I'll find out later which disease I have.

I was walking about 4 miles almost every day. I square dance. I have MS, which I have had since as a child but was not diagnosed until 22 years ago. The MS attack I just had was brought on my stress of an ex-husband......court problems again. First time in 22 years I have had an attack.

I take extra calcium supplements, eat lots of greek yogurt, am almost a health food nut with being so good on my celiac. I'm very healthy if it wasn't for my MS which is more of a hindrance than anything unless this inactivity does a job on me. But, not if I can help it.

Why am I writing this long post? Because anyone out there reading a post on soft bones either, have already had this, or am worried they may have it or develop it. I would love any information anyone has learned that would be beneficial when I approach my doctor in my treatment. We Celiacs have special needs that can easily be overlooked. That is why we have forums such as this. Any info on recovery, diet, things to beware of, etc etc, I would really appreciate. Also any past topics i have missed.

Thank you.

I also have osteoporosis/osteopenia from years of undiagnosed Celiac and my preferred course of treatment has been to do weight training and core exercises, with the help of a personal trainer. The bone meds they like to push on people do not build bone from the inside of the bone....just stops the break down of old bone and deposits new bone on the outside. It can also cause stomach problems, which we do not need, and be a problem especially for Celiacs if absorption is not optimal.

I don't know if you would be able to do this after healing of your ankle but weight training and core exercises might really benefit you from the MS standpoint also. It would make your muscles stronger and that aids balance. I am also post menopausal by 8 years and I stopped BRHT a while back because it wasn't really helping with the hot flashes all that much. Estrogen is important to bone generation but it is not impossible to build bone without it....just a little harder and it takes longer. I am sorry you have a broken ankle and hope you have a speedy recovery but please consider weight training if possible for you. It puts you in a good mental state also.

A woman has to weigh a minimum of 126 pounds to just build bone on your own. If you weigh less than that, you HAVE to exercise or you will continue to lose bone. For a man, the weight is 150 pounds. I will never reach 126 pounds so I have no option but to go to the gym. Not a bad treatment as I always feel so good after a work-out.

BTW...I also have Hashi's thyroid disease so we are very similar. It's an uphill battle but I don't like to lose!

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I have osteoporosis, too. Please be sure to post anything your doctor suggests that might be helpful.

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Thank you so much for your post. Yes, I will definitely try the weight training and have thought of getting a personal trainer. I had gotten into a great habit of having a 5 lb weight by my couch and would use it while I'm watch TV. However, this is also where I do my ebay and all my computer work. I got out of the habit and it went the wayside. But it is still there and I will put it on my coffee table and start again. It feels good, but just that stupid getting out of the habit. Just a human tendency, I guess. But when I was faithful with the weight, I could tell a difference in time.

If anyone reads this is not familiar with MS, muscle is easy to lose but very difficult to build. Plus it is very depressing because, at least with a lot of us, the muscles just hang and "swing & sway". Just terrible. I've done everything thru the years I could do, but I can tense and the muscle will buff up and instantly when I relax they hang again. Plus last year I was blessed with angel wings. For you young ones, that is the hangy underarms under old ladies like me. This is why I bought the 5 lb weight for my arm.

I started my walking about 4 miles a day as fast as I can, last fall. My chiropractor told me I needed to and he was so right. I should have started it years ago, but it takes time and I didn't have pain. Well, I got butt pain and hence the chiropractor and the advice. Now, I really think the butt pain is from the soft bones. It really helps reading what others go thru and their personal descriptions.

Hopefully, it won't take 4 months to heal my ankle before i can walk. But whatever it takes, then I'll do it. I have been exercising with just leg lifts right now, etc but will need more soon. When healed I will continue the 4 miles a day except on the days I square dance. 1.5 hrs of square dancing is equivalent to 3-5 miles of walking. Plus I'll start with the weight training. No, actually, I will ask the doctor and maybe with a personal trainer I can start that immediately!

THANK YOU! I never thought of that until I typed it! YAY! I think you just saved me! You can't believe what a shot in the arm this has just given me!!! I see the doctor in a few hours....without sleep it appears....and this will be on the main order of business right after they take me out of the torture chair...I have a huge fear that they are going to have to reset my ankle....Been crying a lot today in stark fear. The pain is right up there with childbirth.

I hope I can sleep now. Right before bed, I heard water running, wheeled out to the garage and water was running all over my garage from the AC. I live in a duplex and it was running under the walls and I don't have their phone number...plus it was midnight and I couldn't try to make it in my wheelchair over there. So, that was enough to wake me up big time along with the worries about the ankle pain in the torture chamber.

I will post tomorrow how the doctor visit went. If I don't post, then that will probably mean they put me on some meds for pain.

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Yes, I will absolutely post what my doctor tells me, anything that might help anyone. Please check my posts again and give me some tips. I am new to this and never worried about bone problems. i didn't realize Celiac was a risk factor. Now the education begins.......

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Yes, I will absolutely post what my doctor tells me, anything that might help anyone. Please check my posts again and give me some tips. I am new to this and never worried about bone problems. i didn't realize Celiac was a risk factor. Now the education begins.......

Man, I love your attitude! People.....we have another fighter here! :P Older women have such confidence.

Your MS and bone problems can be made a lot better with weight training and exercise. It won't be easy and it wasn't for me because I had muscle wasting from years of undiagnosed Celiac. I was always the wimpy kid with no strength....NOT ANY MORE! ;)

Please use a good trainer as they teach you proper form when exercising. I think you will be pleasantly surprised that the longer you maintain a strict gluten-free diet, the better you will feel with less pain. I have no idea if my exercise will restore my bones completely but with added muscle strength, you will have far less chance of losing your balance and falling....and then breaking something. It's a win, win situation.

Keep us informed of your progress but look into a personal trainer...honestly, it's the best money I ever spent. I feel pretty good right now and I actually have some muscle that shows. First time for me and I'm almost 53. You absolutely can do it.

Stay away from the meds though, for now. They will likely pressure you but don't give in. Meds are always a last resort.

Good luck and keep using that 5 pound weight! :D Hope your ankle pain goes away soon but ask them for pain meds. You shouldn't have to suffer like that with so many good pain meds out there.

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I went to the doctor and YAY! I did not have to have my foot reset or shaped or whatever the painful thing is when they bend it how it is supposed to go. Instead, it was doing well. Looked great....well except for the long hair under the cast (Yuk). I have a brace on my foot to be treated like a cast. Now I can ice it better and that felt so good. I cannot bear weight with it for quite some time. The doctor kept to himself on that and I see him again in 4 weeks. Probably a wait and see. I will have to have my leg elevated above my heart for maybe another 4 months, if I understood correctly. Found out I had another break I didn't know about so it was a triple something break. He said even with my bones the way there were it was just because I landed on the floor in just the wrong way.

I asked about the personal trainer and weight training exercises and he said not at the moment. That would be later on. Only if I really wanted a physical therapist then he would OK that but he wanted me to take it really easy right now even though it is hard for me to build muscle. He said I could do some leg lifts or something which I have been doing from the couch & wheelchair, etc. That was enough for now. I guess the fracture was a pretty bad one so I better do as he says. But the ankle is healing good and I had quite a bit of movement and he was happy with that. We'll see how it goes with the brace because this holds my foot much more secure. Soooo heavy. But may build up more muscle. At least I can ice it and wash off my leg, etc.

I asked about an endocrinologist, or who should I go to so I can get started on overcoming this soft bone condition. He advised to go to my primary care physician and have her choose from there. Sounds wise. Also, my neurologist will be given copies of all of the reports, etc. So, even though it doesn't sound like much, I'm happy because it is the assembling of my own little team ready to go into motion. They just don't know it yet. It made sense about waiting about the personal trainer. Since he wasn't really encouraging even the physical therapist, I feel he was just wanting me to take it easy, like maybe he saw I can tend to overdue at times.

It was very nice to talk to a doctor and mention the Celiac and by his reaction it was a very normal question and he thoroughly understood where I was coming from. It is sad but we all know there are some doctors that can make you want to clam up and not say anything, the roll the eye thing. I was happy say there was none of that. Also, when I mentioned the stopping of the estrogen because of the breast cancer scare, he was listening very closely. So, I feel in good hands. It turns out that even though the bone was soft, the special screws he used held well. That was good.

Now, my next move is to call and make an appt with my primary care physican, see how she reacts , where she sends me, and what tests she orders. I will then go the orthopedic surgeon in 4 weeks, then the following week I'll be down in another town about 300 miles away to my neurologist for an MRI for my MS. When I talk with him it will be interesting how the Celiac / MS / soft bones all connect. Especially it will be interesting how they connect with the different doctors viewpoint. I should include the 4th doctor here, since I also see a chiropractor. He is the one that more or less "made" me get out and start my walking program. But that will be a subject of another post. I'll also continue some arm chair & couch exercises and see what I can do. I do ballet conditioning exercises and I might get out the DVD and see what it is like to do while sitting down. Never thought of it. I can probably adapt it easily.

Thank you all for your help & encouragement in my posts.

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I was sick for two years before I finally found a good GI. About six months later I broke a metatarsal accidentally kicking the kitchen table leg (another story). As my personal physician and I were looking at the x-rays of my foot, she say's "Look at your poor, pitiful bones"!

I love my doctor dearly, but really, is that funny or what?

I had one followup visit with my GI about six months after that, and when I mentioned the broken foot incident he immediately scheduled a bone density scan, which indicated I had osteopenia. That was about five years ago.

That's my story.

best regards, lm

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I got the results from my doctor and my bone density is fine. She said that she didn't know what the surgeon was talking about then. I said that the surgeon told me my bones were soft. He felt them. He couldn't use the regular screws but had to use the screws for soft bones. My regular doctor just said that my tests turned out just fine. I told her about Celiac.com and that even though I didn't know much, I had heard there were times that the bone density test was fine yet the person had soft bones and that there was a biopsy or some other test that was needed. My doctor was not aware of any biopsy for a test for soft bones. I requested to see an endocrinologist since that is what was mentioned in our forum. She said there was none in town but if I wanted to find one in another town she could refer me. So, I went to my insurance and found a doctor about 300 miles away and will give that name to my doctor. My doctor said it usually takes 3-6 months to even get in and see one.

I have soft bones and a broken ankle from just falling. I am MS and bad balance. I think I need to see a specialist. I just want to have some treatment before my bones become weak. Has anyone had similar problems?

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Check out this article on the Cleveland Clinic site:

Bone density vs bone quality: What

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