I take several supplements. One of them just changed its formula and now has hordenine extracted from barley. I have no idea if this would include the gluten in the barley, or if so, if it is destroyed in processing, etc. I have been researching and have not been able to find out my answer anywhere.
I don't want to take a chance on the supplement, but the original formula helped me so much, I really wanted to take the new one, if possible.
Does anyone have an idea if it contains gluten?
I have been having a horrible gluten attack. I am so sick and tired of having gas and bowel problems and not leading a normal life. I do so well then something goes all wrong for a long time. Well, I had nachos at a restaurant, asked and made sure everything was corn tortilla chips, etc and got the "look" etc but still, that was Thursday evening. This is Saturday. And I have been in misery ever since. I went to the store to shop on Friday evening for groceries and happened to read the ingredients of a fresh Pico de Gallo salsa. Guess what. It said right there it had wheat gluten in it. I don't know if the restaurant's salsa is what did it do me so badly this time, but something there did. Life has been so miserable and it looks like maybe one more day at home. I love to be with people and try to be normal and my family and friends that really love me don't roll their eyes when I ask about the "wheat" since so many still don't understand gluten-free. Oh, get this. I go thru a whole thing about gluten-free pizza. I get my food when everyone else is done...so the restaurant gives me a free salad. Guess what. Crutons on it. I mean, how dumb can you get? I am sick of the whole thing. But I can't just eat at home. I live alone and I need to be with friends and family. I am just tired of being sick and having problems.
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?
It is interesting about the enamel problem. I have always had problems with thin enamel on my teeth. I am not sure of some areas are thinner than others. 3 of my children (now grown) all have my type of teeth. Poor kids had so much pain and dental work done when they were small. Now I have grandkids and I know that at least one of them also inherited this problem. I have MS besides Celiac. I have not thought about the correlation between the two. I will contact my children and mention it in case they would like to mention this to their doctor.
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.
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.......
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.
I just happened to run across your post. I had also just posted tonight earlier. What caught my eye was the what you had written about yourself & conditions, at the bottom of your post. I thought, wow, you have really dealt with a lot. Then, when I read the body and subject of the post itself, my heart just went out to you. You may be feeling down, obviously, and for good reason, but you are definitely an upbeat type person. Rereading thru your post, you are a real encouragement and fighter! Yes, there are times when everything looks bleak but sometimes when the attitude stays up, sometimes things turn out better than expected, or if not, then the trials we have are at least easier to bear and for others around us to bear. I was diagnosed with MS 22 years ago. I had actually had it since I was a child, but just never had an attack that caused enough damage that it could be diagnosed before that. I was told all of the fears of wheelchairs, how I would age so much faster, have a shorter lifespan, etc. I really gave up on myself for a while but then I got upset and decided I was thru with living like a sick person. So, I have been a happy, healthy person with MS for the last 20 years. Educating myself with what I needed to know to deal and recognize the problems I was having really helped. But now, at age 57, I don't look like the 87 year old I was told I would look like. I enjoy life and I want to continue to enjoy every minute of it. I square dance with people in their 80s that have much more life than many people I know that are in their 40s. It is all in their attitude. It is good to see you reaching out for information. I also was at a point where I was holding my own. Then some extreme stress kicked in and I had a major MS attack. Now a bunch of other things hitting at once. But we can't give up. You encouraged me. We just keep learning and helping each other and really living life. Thru it all, we'll all keep cheering each other along. Everyone can do more when they are being cheered on. Keep posting on how you are doing and what you find out. Your good attitude will no doubt help others along the way like it did me tonight!
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.
No, there couldn't be any old gluten stuck in my teeth and released by the cleaning. I have the type of teeth that I have to floss every single time I eat something. So tired of it. I also have my teeth cleaned at least twice a year, I have a water pick to remove anything I have missed with my brushing, etc. I brush several times a day also. I still think the cleaning agent may have had something since I swallowed so much of it. She rinsed my mouth, but not well and it did not all come out with the suction thing. I also had the full x-rays so had the guard in my mouth but that looked like just plastic.
If I find anything out, good or bad from the dentist, I will post again at that time.
Thank everyone for your assistance!
No, I am in Lewiston, Idaho! My good experience was at China Inn, Lewiston ID.
I will also say that I was in Springfield MO recently and ate at a Thai restaurant. I believe it was called Thai Express on Glenstone Ave. He kept telling me there was no soy sauce in the their items unless we ask for it...and then I read their ingredients in their soy sauce and even that was real soy sauce with no wheat! I ate and ate and ate two different time of his curry. Anyone that lives there has got to try his Pumpkin Curry and also the Red Curry. It must have a zillion calories which is fine as long as I don't live there and only visit a couple of times a year! Gained weight. But no reaction. Absolutely none. Almost made me cry it felt so good to eat. That was before I came back home to Idaho and had the wonderful China Inn experience. After I had the good Thai experience I spent quite a bit of time online researching Thai and was amazed how much we can eat. Yes, some recipes do use soy sauce instead of their fish sauce. But the recipes I was reading said the authentic Thai do not use soy sauce. I think I will become a genuine Thai food fan.
I also talked a Thai restaurant that is in a neighboring city, Clarkston, WA. They also told me they didn't use soy unless asked. I only have been there a couple of times but both times, no reaction, but I was very careful how I ordered. Now that I had the good experience in Springfield MO, I am anxious to try more at this Thai restaurant here.
I usually simply cook all my own food, so much cheaper and easier and have people to my house instead of going to theirs if possible. Now I feel like I can finally start to relax when I go out with friends at times.
I will call my dentist to make sure just in case there was a type of problem. Whatever it is, something happened that caused a major problem that day and was definitely a gluten reaction. Today I ate everything I had that day again and no problem. I had only eaten at home that day and today and I keep no gluten in my house...that I know of. However, there could always be surprises. Things get on our hands and even could be on the gloves at the office...they may have just eaten something with the gloves...something that simple like a cookie when her gloves were on would be enough to do me in. I love leading a normal life which isn't easy with being Celiac and having MS. But the way I do it is thru knowledge of what is happening to me and knowing what is causing it and kicking it off...That is why I was so happy to find this site.
Thank you all for your help!
I will call my dentist's office back, but since my next cleaning appointment isn't until October I feel I have some time to do a little research first. Especially if it turns out they may be the type to "snicker" at the problem. Sad, but even in the medical community it can happen. I have quite a bit of elective dental work to have done before this time, if I so decide. I want to make sure it is something to do with the cleaning and not something else that may be used during the dental work.
Thank you. I will check out the gum numbing agent. Especially since this may be the same as they give before they give the shot. I wonder if this is in the toothpaste for sensitive teeth. Just a thought and something I will check out.
Since our mouth is only rinsed partially when our teeth are cleaned, we do swallow quite a bit of the cleaning product whether we realize it or not. I am so sensitive that just having it in my mouth is enough for me to have a gluten reaction.
I appreciate all comments.