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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This 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 email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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    About karoyse

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    • Birthday 05/05/1958

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    • Gender Female
    • Interests Crafts Mygrandkids,& Gardening

    karoyse's Activity

    1. karoyse added a post in a topic Thyroid Or Is It All "in My Head"?   

      I have been going though almost the same problems. I am 56 and got DX with celiac's two years ago. For the last 3-4 years my health has went down hill. I had my thyroid remove when I was just 13  years old so I know when the meds aren't right . I have been trying to get my family doctor to listen to me . She kept saying my thyroid test said my levels were too high the last two years. She took me from 200 mcg to 150 mcg. I have been feeling just like you .  Plus I have gained 50 pounds. Finally I asked her to send me to someone who specializes in thyroid problems. She didn't like it but I finally got her to send me to a Cardiometabolic Specialist last week.  I found my answer. He really knew what he  was talking about. My family DR didn't know how to read my test. He said a lot of MD's don't know how difficult it is when you are dealing with other autoimmune disease's. to get the thyroid levels right. He said she should have uping my Synthyroid unstead of lowering it.
      So if I were you I would  see if you can find a Cardiometabolis Specialist because they deal with how the whole body work together. He answered my questions other Drs. just blew off because they really don't understand how the thyroid works.
      I wish you luck because I get what you have been going though. It makes you crazy trying to figure out whats happening to you when the people who you go to don't listen or really understand.
      NO One really understand unless they have these problems. So keep trying to find someone who can help you. It really has messed with my life at times I felt like the walking dead. I am ready to start living again.
      Best of luck
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    2. karoyse added a post in a topic Hormones, Hashi's And Celiac- How Does This All Work Together?   

      Thanks Icelandgirl,
         I have been having that tingling too so it might be your meds aren't strong enough. I just amazes me just how many things can get messed up when you thyroid medicine isn't working right.
      The worse part is family and friends just don't get it.  When you feel the walking dead its really hard to do and be the person you want to be or they want you to be. My husband is full of life and is 2 years older then me. When  I was DX with celiac's two years and my thyroid meds haven't been right I know I haven't been the same. Like I said I wouldn't wish this on my worst enemy but it might help to get a litte understanding if some of my family could be in my shoes for a while just to see I'm dealing with.
       I guess thats why this post caught my attention seems like most of you have been dealing with it. I guess what I'm saying it nice to not feel all alone and I'm not the only person going though all this.
      I  felt like the weight of world lifted off me when my new Dr. told me what was really happening. Same with finding out I had Celiac's 2 years ago. . I had been to so many different Kinds of Drs . before I finally went to a gastroenterologist. because I was having trouble breathing and sleeping at night because of GERD. My husband was getting upset with me . I told him I need to find out what was happening to me to make me feel so bad. If he didn't believe me  to make sure they do an autopsy on me when I died then he will see something was really wrong with me. I had him go with me to find out the results of my 4 different scope. Not that I wanted what I found out but it least I got some answer's and so did my husband. I have Barrett esophagus ,Hiatal hernia, Gerd  Celiac's . Plus menopause hell. Then my family Doctors lowers my Thyroid Meds when they should be raised.  OMG
      I had no idea what Celiac's was. Boy was I overwhelmed. 2  years later I think I have my Celiac's under control .It just my family likes to eat out a lot, They really think I am being a pain when I ask  question's  from the waiter or don't want to go with them because I know the
      place they want to go doesn't have any Idea what Gluten is .
      Now the new Dr say I might also have Hashimotos too . What is that and can I have that if my whole thyroid was removed? .Another Dr. told me I had Fibro now this Dr. doesn't think I do.
      Sorry if I sound angry but I guess I am . I just want to feel good again. I kept thinking it was all just old age but I see other people older than me and they are getting along a lot better than me.
      This has been a crazy few years and I feel like maybe now I have some Idea what I dealing with. I can get back to enjoying life more.
      Thanks for posting the info . it has helped me a lot.
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    3. karoyse added a post in a topic Hormones, Hashi's And Celiac- How Does This All Work Together?   

      Hi, Just have been reading al the info on this post and this is the first time I have ever posted anything .  I have been having alot of the same problems you have been posting about and my Dr. kept telling my thyroid levels were fine. I felt awful so finally she sent me to a endo Dr. It was like I finally found someone who understood..He said she read the test wrong and she should have raised my synthyriod to 175 mcg in stead she lowered it the last two years. I am so  mad at her for letting me feel like this. He took the time to explain everything to me. I really hope things get better soon.
      What i wanted to ask is have any of you had problems taking the generic synthyroid?  It doesn't work for me and i have been taking brand name for 28 years.
      Thanks for all the info. It is nice to know there are other who understand all the problems Celiac Thyroid and menopause cand cause. Though I wouldn't wish this on my worst enemy.
      • 0
    4. karoyse added a post in a topic Barretts Esophagus And Acid Reflux Meds Causing Severe Mucle Pain   

      Does sound familiar. I am 54 and had my thyroid removed when I was 13 years old. It is amazing how much your thyroid effects. I have had to have my thyroid dose changed so many times I can't keep up. My weight has went up and down like yo yo too. I get anemic easily. Thank God for the Bio-identical.I don't think I could have gotten this far with out them. I didn't realize they weren't available everywhere. My hormones were so low it even shocked the Dr.
      Glad your Barrett's Esophagus is removed. I was wondering if it would get better or go away.
      I pray gluten free does help. My stomache has really started to bother me with out the reflux meds. Hopefully will get something tomorrow. It helps hearing from you and seeing thing that helped you and other's.
      I'm trying not to feel sorry for myself as I see what other 's here are dealing with but sometimes it just feel's like what else can come at me.
      Thanks for the post best of luck and better health
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    5. karoyse added a post in a topic Invisible Disease: You Look Healthy   

      Yes the last two years have been the worst but I think I might have had it longer but because all the other medical issues I thought were the reason I felt so bad.
      Now I am dealing with the meds and Doctor trying to see what kind of reflux meds I can take. The Dr called in a new one and now my insurance won't pay for it. I don't really want to take any but the Dr said with Barretts that could lead to cancer if I don't get the acids under control. Sometimes I feel like banging my head against a wall. Nothing is simple anymore.
      Sorry I am done whinning now.
      Have you been getting better since going gluten free? I have been reading so much trying to find if everything I eat or touch has gluten in that my eyes are crossed. I hope I can get to the point I can relax and enjoy eating again. Also just trying to find my way around these forums. I am not the best at computers.This brain is on over load.
      Take care and Thanks
      To better health
      • 0
    6. karoyse added a post in a topic Invisible Disease: You Look Healthy   

      Hi, I just got DX on Oct 1st and have been trying to be gluten free. it is so over whelming trying to figure out what you can eat. Going out to eat is nightmare. Just having the energy to get my kitchen gluten free and keep things away from the things that aren't is just too much at times. Not to mention the cost of the food you have to use for baking. Plus trying to make family and friends understand why you have to be so careful.
      Sorry I needed to vent. At least here I know you understand.
      I am just looking for the light at the end of this tunnel.
      • 0
    7. karoyse added a post in a topic Invisible Disease: You Look Healthy   

      I know exactly what you mean. I just got DX but for the last two years i have felt like the walking dead and most people just don't understand it isn't by choice that I feel this way.
      I feel bad when I am in so much pain I can't get down on the floor and play with my grandkids. My husband was really getting mad at me until I got DX with Celiac's but now I think he starting to try and understand. He has just retired and is full of energy and life. He wants to go out danceing like we used to but I just am not up to it. I was always very active until this.
      I am a Custodian at an elementary school with 500 kids. Its a hard job even when you feel good. It's all I can do somedays to just get my job done. I keep wondering how much longer I will be able to work.I know people are wondering why I am not the same person I used to be.
      I am praying going gluten free will help. Since people can't see what is happening to us they just don't understand. Until I found out about Celiac's I really wondered what was happening to me and I had heard about Celiac's before this. Why isn't there more awareness?? I had heard on people not eating gluten but really didn't understand why. Now I do !!
      Hope for better health
      • 1
    8. karoyse added a post in a topic Barretts Esophagus And Acid Reflux Meds Causing Severe Mucle Pain   

      Thanks so much for the replys and thoughts. I have been taking vitamins but thought the same maybe i was deficient but I has a blood test last week and everything came back good except the Iron levels. I started more iron now.
      I have really been trying to be gluten free but I am new at this so hopefully it will start to help.
      I really didn't notice a lot of stomache problems before my DX. Just once in a while D & C. Only heartburn if I ate spicy or greasy foods. Now since I have been on 5 different Meds for acid reflux my stomache hurts and feels bloated.
      The cough at first was the big problem because I wouldn't catch my breath.( that was from the Barretts Esophagus the Dr' said) The Meds helped with that but after a while the muscle pain was awful.
      I haven't taken it for three days and the muscle pain is gone & no cough. I'll call the Dr. tomorrow and see what he has to say but I don't know what else I can take and it's getting expensive.
      My thyroid problems have always been an issue. I had to have it removed at 13 years old and it has been a real pain with my weight and hormone levels. I have had a weight problem all my life because of this and major PMS problems and now Menopause H____.
      I am on the strongest Bio Identical hormone replacement they make and a .175 synthyroid. ( My synthyroid has to be changed often)
      I first I thought 2 years ago I felt so bad because of Menopause but even with the Bio I still was real foogy and emotional. After reading these forums I see celiacs can cause a lot of my symtons too.
      I see this will be a long time learning what my body can and can't handle. I went to a health food store today and they gave me some ideas about what might be causing the muscle problems. Will see what the Dr says about it too.
      Having these forums and the info on this site has helped a whole lot.
      Can't blame Celiac's on my spelling though.HA
      Thanks again and I will be checking back and learning more from you all who live with this. You are the only
      one's who truly understand what this is like.
      • 0
    9. karoyse added a topic in Celiac Disease - Coping With   

      Barretts Esophagus And Acid Reflux Meds Causing Severe Mucle Pain

      Hi I just got DX with Celic's, Barrett's esophagus, Hiatal hernia and Gert on October 1. This was a surprise because I went to the Dr because I had a cough and a little stomach pain. ( long story made short) The Dx has helped me finally figure out why I have been feeling so bad. I thought most of it was just going though Menopause. Plus not having a thyroid has make my health problems crazy over the years.This DX has answered a lot of the puzzle pieces of my family's health problems
      My Mother died exactly 3 years to the date of my Dx. She had colon cancer as did my Grandmother and Uncle.
      This is all very over wheming on top of the fact the medicines the Doctor gave me cause severe muscle weakness and pain. When I talked to the Doctor and Pharmacist they both look at me like I'm crazy and say they should not do that but I have stopped them and the muscle pain goes away. I have tried several over the counter and prescriptions for acid reflux. They all cause muscle aches some faster then others. I know Celiac's can cause some muscle pain too which I think is part of the problem because for year's my legs will ache if I over do it or take certian meds.
      Does anyone have this problem? Should I just stop taking the med's? They really make me feel awful and I have a very physical job and
      somedays I wonder how I can keep going.
      I have read a lot of the post in these forums and they have been a great help with a lot of my questions for Celiac's. I have had a lot of health problems over the years and wonder what in the world was wrong with me. I think I have had Celiac's all my life but in the last year it has really kicked in. I feel after reading these forums a least I'm not alone. ( I wouldn't wish this one anyone but I know now all my aches and pains weren't in my head like some people make you feel) Thanks Kim
      • 7 replies

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