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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.

Looking To Meet People Who Have Been Bed Ridden From Celiac
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21 posts in this topic

i am having a hard time seeeing the light at the end of this very dark tunnel. i was in hospital 2 months ago before being diagnosed with celiac. since being on the diet i have gotten so much better but still spend some days in bed. my current situation is that im in so much pain lately that ive been in bed for 2 weeks :(

has anyone had such severe symptoms like this? please share your stories with me!

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Hi,

I have been gluten free for 1 year 5 months. Before going gluten free I was bedridden with pain. I also had unexplained seizures/faintign and I was ordered not to drive by my dr. At least a year of my life is a blur in my memory because about all I did was sleep or stay in bed in pain. My hair was failing out, I had dark circles around my eyes despite sleeping most of the day, my hands shook, My muscles spasmed and my joints hurt, I could not keep any food down (probably because I was eating mostly saltines and toast prior to gluten-free). It does get better. For me I had to give up dairy and soy as well. Be sure you have all your vitamin levels checked and that you are at least taking a good gluten-free mulit-vitamin. I started being able to do some housework again (dishes and laundry) at around 6 months. I am now back to doing everythign I did before (including driving) except for reading for long periods and walking long distances. I exercise every day, however, for 30 minutes on a treadmill. Something that was impossible for me a year ago. I'm still getting stronger everyday. My dr wants me to ideally be able to do 60 minutes of exercise per day but I am not strong enough for that yet. My memory is still bad at times. I'm taking B12 to try to improve it so I can go back to grad school. Just take it one day at a time and know that you will steadily improve if you are diligent about staying 100% gluten-free, eating healthy (mostly natural gluten-free foods like fruits, veggies and meats) and taking your vitamins. Give the gluten-free diet a few months and if your pain does not improve you might want to look into additional food intolerances. The most common ones on this board seem to be dairy, soy, other grains (like corn or rice), nightshades and fructose.

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wow thanks so much for sharing your story! it gives me hope that someone like you can go through that and come out being able to exercise and have no pain. i think i have a corn allergy so i avoid that, and im also about to trial a lactose free diet to see if the pain goes away at all. its so frustrating trying to figure all this out but i guess i will get there..

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im also about to trial a lactose free diet to see if the pain goes away at all. its so frustrating trying to figure all this out but i guess i will get there..

Yes, the lactose is the first thing to take out, right away!!!. Most gluten intolerant people cannot digest lactose until their gut heals.

Perhaps if you do a little reading in other people's threads you will see that we have to remove lots of things at first.....

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wow thanks so much for sharing your story! it gives me hope that someone like you can go through that and come out being able to exercise and have no pain. i think i have a corn allergy so i avoid that, and im also about to trial a lactose free diet to see if the pain goes away at all. its so frustrating trying to figure all this out but i guess i will get there..

You're welcome! Welcome to the board! I am not 100% pain free but I would say proably 95%. I hurt after exercising even with stretching but I am really pushing myself to do more and more. I have been slowly regaining my muscle and that is what hurts. I was so weak before. I know some people on the board that were bedridden went through physical therapy. I was not able to afford anything like that without a formal diagnosis so I have just been doing this on my own with dr's guidance on what to do for exercise. I started out walking to the mailbox and then around the grocery stores while leaning on a shopping cart. I would try to just go a little further each day until I could walk around the store without leaning on the cart. Then I started walking to the grocery store every three days (I live about two blocks from one), then every other day. When I was able to do every other day without being too tired I started walking on the treadmill with a friend (this was in January of this year). So it was a gradual process. Make small goals for yourself each day and then when you can do those goals without difficulty add something else.

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the problem i have is that one day ill be 80% perfect and the next ill be bedridden for 2 weeks again. its a rollarcoaster and i think depends alot on what im eating. its very hard some days :(

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the problem i have is that one day ill be 80% perfect and the next ill be bedridden for 2 weeks again. its a rollarcoaster and i think depends alot on what im eating. its very hard some days :(

It sounds like you are still getting some accidental gluten somewhere. If I get even a little gluten I am down for at least a week (longer if it is a large amount). What are you typically eating? have you taken all the needed precautions to eliminate cc at home? Like having a dedicated toaster, new cutting boards, new wooden spoons, new colander, etc?

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i have now but i think that may have been the problem. im in pain from about 16 days ago. it just seems never ending. today i have nausea aswell i dont understand what im doing so wrong. im basically livng on veggies and eggs. i had an allergy test and im fine with everything im eating so i dont get it

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i have now but i think that may have been the problem. im in pain from about 16 days ago. it just seems never ending. today i have nausea aswell i dont understand what im doing so wrong. im basically livng on veggies and eggs. i had an allergy test and im fine with everything im eating so i dont get it

You might want to add some carbs to that. How about some rice or sweet potatoes? Rice cakes with peanut butter usually agree with my stomach when I'm feeling nauseus. I know for me I find just eating protein or veggies alone makes me a little queasy, but when I pair them with some rice or something I feel better. Everyone is different however. Be sure that you are eating enough calories.

Also consider that it is possible to be intolerant of something and not really allergic. Intolerances (like lactose intolerance) would not show up on allergy testing. Some allergies do not show up as well (due to false negatives). I just started having an anaphylactic reaction to milk, however my IgE milk allergy tests came back negative (both blood and skin prick). The allergist told me since milk makes my throat swell shut to continue to avoid it.

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Well, basically you are trying to digest food with a gut that has been damaged by gluten. So it is going to have a really hard time at first and you have to be kind to it. Do not eat raw, uncooked, veggies and fruits. Do not eat the skins on things like apples, pears, tomatoes, broccoli stems. Baby your stomach and pretend you are a baby eating baby foods. Be as kind to your tummy as you can and it will thank you. Eat applesauce instead of raw apples. Mash things up as this will get the digestive process started and expose the most surface area of the food to digestive enzymes.

Take probiotics that are gluten and lactose free to help heal your gut. Try some digestive enzymes to help digest your food since the gluten may have sent your pancreas on vacation to the Bahamas for a while (or even to the Mediterranean :D ). Make things as easy for it as you possibly can, and eat a limited diet at first (as you seem to know to do) so you can figure out what is bothering you.

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I was bed ridden for 5 years...sick for 7 but functioned the first 2 years trying to figure out what was wrong until I got seriously ill and couldn't get out of bed. Headaches, migraines, nausea, vomiting, D, fatigue, slept away whole years being ill...all the dr's would say was fibromylagia...but it wasn't.

I am only 7 months gluten free and I couldn't even walk across the street when I started this diet. I was weak and sick. Then the headaches went away and the pain lessened. Now I drive, walk, work, and function as a normal human being albeit with post traumatic stress disorder from living in lala land for so long. I was eating crackers for the nausea and taking meds for nausea too. It was wheat huh? wow!

Be very careful of cross contamination. If I get any accidental ingestion, I end up with muscle pain, weakness, fatigue, anxiety and depression as if none of it ever went away. It is bizarre and scary. But if I eat clean I am fine. Muscles are returning and I have lost a massive amount of inflammatory weight. That is what I call it because I certainly didn't gain that weight from eating...it was fluid retention and inflammation. I hardly ate at all for several years except nibbles here and there. Now I eat normal meals.

I had to give up eggs. At first they were my main food, like you. But I realized they were bothering me and now whenever I test them, I know I can't eat them. I feel lousy, my face swells, I feel bad. So I quit eggs. Then dairy, then soy, now working on nightshades. They all have negative effects on me. I wanna feel good. I do feel good if I eat mostly meat with some cooked veggies and minimal fruit. Way more restictive than I wanted to be. Thought gluten was bad enough, but it is all the other stuff too. I don't handle carbs well at all. Protein is most easily digested for me.

I am feeling better mentally and physically than I have in years...and no one would ever believe I spent most of the last 7 years in bed, sleeping, or with a headache. You can do it. It does take time, but I know you can get your strength back if I did. I'm not all the way there...still have good days and bad. Learning where gluten is and what got you is a big part of living gluten free. I only eat things with peelings and meat. Other than the occasional Snickers for a treat. I'm safer that way. Can't afford to be sick for days due to food mistakes.

Just want you to know it can be done. This diagnosis eluded me for years. I'm thrilled to be given a second chance at life. You must figure out what foods you are intolerant of besides gluten and you must figure out where the trace gluten is hiding...and then the healing takes place.

Hope your healing goes fast and that you feel better soon.

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ive been taking a probiotic and im also on aloe vera and glutamine casules. im just so imptient and frustrated with my body :(

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wow 7 years! im so sorry you had to go through that. so after 7 months you are doing well? thats fantastic!

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Hang in there. It's been two years since diagnosis for me. When I was at my worst I needed help eating and getting up to use the restroom.

As I progressed, there were little milestones... I could wash my own hair. I could take a shower without a nap afterwards. I could walk down the street. Then around the block. I'm not 100% yet... maybe 50 or 60, but I love the good days (hours, minutes).

Like eatmeat said, many (most?) people need to figure out what works for them in addition to gluten-free. I'm learning to pace myself. Not something I do naturally!

Patience is hard. I struggle with it daily, but I'm getting better. Acceptance without giving up the fight to get better is a fine line to walk, but keep at it. I've found reading and sharing stories here to be very helpful in my healing.

Best.

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Hang in there. It's been two years since diagnosis for me. When I was at my worst I needed help eating and getting up to use the restroom.

As I progressed, there were little milestones... I could wash my own hair. I could take a shower without a nap afterwards. I could walk down the street. Then around the block. I'm not 100% yet... maybe 50 or 60, but I love the good days (hours, minutes).

Like eatmeat said, many (most?) people need to figure out what works for them in addition to gluten-free. I'm learning to pace myself. Not something I do naturally!

Patience is hard. I struggle with it daily, but I'm getting better. Acceptance without giving up the fight to get better is a fine line to walk, but keep at it. I've found reading and sharing stories here to be very helpful in my healing.

Best.

you're right its a very fine line. and wow 2 years is a very long time. i hope you fully recover very soon! well done for your positive attitude. this site has been great i agree. it fills my day a little more instead of being upset and alone sometimes

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Hi MissBonnie, I never got to the point where I was bedridden but it came close. There for a year I couldn't work, my pain levels and fatigue were between 8 and 9 most of the time. Not good at all.

I had to quit not only the gluten but dairy, soy and the nightshade vegetables as well. Nightshades have a toxin in them that causes joint and muscle pain as well as swelling. (Potatoes, tomatoes, all bell peppers, and eggplant.)

I also understand you share a house with gluten eaters. You may have to put your foot down and take your house gluten free untill you feel better. Cross contamination can make you just as sick too. I hope you get to feeling better.

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I am currently bed ridden somewhat, I sleep in bed for 12 -14 hours a day, each day. I have a regula hospital bed in my house. A while back, I had a regular bed, with a regular box springs and mattress. My back side or rear end if you want to put it that way, gave me problems. I would wake up each morning, with red spots overtop my shoulder blades and on the back of both hip bones. (Bed Sores starting to form). My relatives chipped in and each one bought me something different. They helped me buy the hospital bed frame, mattress, and overlay. The same set up they have in the hospitals. I sleep better at night and the bed sores situation has not formed, thank God. The muscles, fats, and weight on me is so low that, my bones stick through my sick and it hurst my backside to sit up in a regular bed or chair. I live in Denver CO.

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I was bedridden on and off before diagnosis. After, I did a mini triathlon.

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I also have a hospital-type bed - they are a godsend :D

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Are you getting gluten kisses from that hunk of a guy in your profile? (You two make a great couple!) :)

I bought some gluten-free hand lotion that cost over $20 and decided that olive oil is just as good on the skin and lips. You have to try to live like your ancestors.

For cleaning products, I mainly use borax and lemon oil. And microfiber sponges/cloths with water.

I don't know if that will help, but I thought I'd mention it. (There is so much stuff in cleaning & H&B products, and I think some of them have made me sick.)

Murphy's Oil Soap is ok too. And Kurt's (or is it Kirk's?) Coconut Soap - you can get it at Cracker Barrell.

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First off i would like to offer you my deepest sympathies for your struggles. The pain goes much deeper than the surface, and just a physical reaction, and I know the depths of and implications of the types of struggles you are trying to handle. I have been struggling so much that it is hard to find words to express it. I was diagnosed w celiacs around 9 years ago. My dr said he had diagnosed thousands and thousands of cases, and never seen a sensitivity to even compare to mine. I just found this sight, and it saved me from a panic attack and a trip to the er. This is no exaggeration. My symptoms have a ridiculously wide range, and I had not heard of others experiencing such profound struggles either until now. They include- debilitating back pain- constant nausea- aches and pains in every joint and square inch of my body to rival a broken bone- unbearable flare up of fibromyalgea- bleeding when I poop-extreme anxiety (which goes away when the gluten is removed, it is not normal for me) varying skin problems, depression, extreme pain in the intestines (I have broken my heel and collarbone, and the pain of those was casual compared to the type of pain I am describing here)- and when it is bad enough, it feels like a 30 pound weight is sitting on my chest, i feel like i am having a heart attack... racing pulse, shooting feelings like lightning down my arms-soreness in the ribs like i was in a car wreck-it would be easier to say that it destroys my life in about every way I can conceive of... these symptoms can arise from a single cross contamination, and sometimes linger off and on for up to 2 months from a single exposure! I was truly at my breaking point until reading the posts of others who really understand what I am talking about- I thought I had a serious medical condition of another kind, in spite of blood work and physical evaluations saying I was healthy (save an EXTREME!!!!!! sensitivity to gluten). Hang in there, and share your struggles with those of us who care and understand. It helps me knowing that these problems, as potent as they are- can be a reaction to gluten. I have found that every so often, marijuana can help, but other times it can make it worse. Look into a new product called gluten flam. It helps your nervous system not completely freak out, and it is a much healthier alternative than drugs (i mean of any kind, legal ones included). Your immune system and nervous system can go totally bonkers for up to 6 months from a single exposure if you have a bad enough sensitivity. I would like to thank anyone who has been willing to share their struggles and encouragement as well- it saved me from that which i can hardly bear to imagine. Best of luck and kindest regards!

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