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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.

Full Recovery, What Worked For Me.
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8 posts in this topic

Hey Guys I just joined but feel that it's my duty to divulge the wisdom I have acquired through nothing but falling on my face repeatedly while trying to recover from Celiac over the last 3 years. My grammar is garbage so bare with me lol. lets start with my symptoms from as early as I can remember tell i hit the break point.

In the eighth grade I would get wicked cramps in my lower stomach that would force me to bend over in pain and eventually end up on the toilet an hour or so later. In the military I would get strong stomach cramps in my upper stomach and then chug milk to make it go away. Months before I got out of the Air Force I got a strong bout of vertigo, one minute I would be watching TV the next second the whole room would start to spin tell I vomited. That was from chocolate (DARK) I later found but it is connected to Celiac I will explain later. After The Air Force Months or so I would drink cocoa before my work outs (cocoa raises your nitrogen levels and helps to dilate your blood vessels, helps you get a better pump and better recovery) I read that right before I got out of the Air Force, connection yep. Hour or so after each work out I would get a strong sense of deja vu then the vertigo then nausea. about 2 years later came the beginning of the breaking point.

My Muscles started to lock up, Muscle knots all over my body, in my biceps, triceps, shoulders, neck, feet, hands, face everywhere. Then my energy levels started to plummet big time. about 4 months after i started to develop a cough and drainage from my tonsils adenoids at night it would drown me I would have to wake up and cough it up and it got worse and worse. one night it got real bad I got up went to the bathroom and drank some water looked down and saw a red line going down the side of my leg! I googled it and it was sepses(blood poisoning) life threatening stuff. I thought well its 2 in the morning ill go to the hospital when I wake up. buy the time I woke up it was 90% gone so i thought well ill give it another day,(I didn't say I was smart, wisdom comes from being dumb lol) It went away and I noticed red patches popping up on my hand shoulder and aahhhmmm crotch. I put 2 and 2 together and figured well that's auto immune, it wasn't there before and the symptoms come and go so it must be something im eating.

I tried everything I could think of cutting out nothing worked, one day i had nothing to eat and hadn't been coughing for a day or two and had a big glass of milk then the drainage started and the coughing, "found it" I thought. (progressive stages of Celiac your body starts to reject lactose in milk) The coughing and the drainage went away but the muscle knots and fatigue stayed, it didn't make sense yet so I kept taking things out tell one day I thought lest try this gluten free thing.

Within two week my energy started to rise after 4 or 5 months i figured out everything that had gluten in it and cut it out. Things got a lot better for me but although the muscle knots where not as bad they where still there. Come to find out the main thing your body uses to recover from damage especially intestinal damage is glutimine the amino acid. The largest stores of glutimine in your body is stored in your muscles. My body was pulling glutamine from my muscle to recover my intestines and leaving my muscles high and dry with nothing to help them recover with so they would shut down and knot up.

Time and a gluten free diet helped but because my intestines were so damaged they had a hard time soaking up enough nutrients to help my body recover. What I finally found was I needed the most nutritious calorie and vitamin rich food I could get and lots of it, I also need lots of amino acids for my body to use for recovery. Long story short its the paleo diet and force feeding my self even when my appetite was low that finally turned the corner for me. Chicken breast, Beef, eggs, pork, sweet potato's, potato's, Brussels sprouts(covered in olive oil baked for 30 min on 400 and dipped in home made honey mustard)green beans corn and all the fruit I could jam down my throat. That's what did it for me all my symptoms are gone even the knots. Im back in the gym and full of energy. Oh Hemp milk has 20 amino acids in it good protein and the chocolate is delish!

I dont want to go on forever so if there's something you have questions about ill pop in once a day to check on the thread.

P.S.

DEATH TO GLUTEN!!!

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"That was from chocolate (DARK) I later found but it is connected to Celiac I will explain later"

Hi, can you elaborate on the chocolate/celiac connection?

Thanks.

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I have the same horrific muscle knots known as trigger points(everywhere) and I lost massive muscle mass from celiac malabsorption. I have joint/bone pain, too and weakness. I am rehabbing my muscles slowly and it is grueling and painful. But I can at least lift small weights and walk further distances now. I BURN all over. Before I figured out it was celiac, I was in agony for 3 years, going from doctor to doctor and tried all kinds of treatments (acupuncture, Myofacial release, therapeutic massage, chiropractic, trigger point injections, physical therapy, even biofeedback and rolfing) Nothing worked and eventually, I could not sit, stand, lie down or walk without pain. It was pure hell. I came to the conclusion something was CAUSING this pain and loss of mobility and I was determined to figure it out. I did. It was celiac disease.

I found your post very inspiring and even though you are much younger than I am and have rebounded faster, I still have great hope I will be able to recover my muscles once more. I have read/done all I can and work with a great MT and a PT and yes, amino acids are essential for muscle recovery!

Your timing is perfect! I can always use the boost in encouragement --as I have not met many other celiacs with the extensive, devastating muscle/joint pain I have --but I might not have seen your post because you put it under the DH section--about the only symptom I did not have.

It was the title that caught my eye --as I check the new content daily! :)

Thanks so much for sharing!!! ---and good for you that you have healed so well!

And Off topic, but still very important, thank you for your service to our country!

Many blessings,

IH

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I am relatively new to gluten-free after a decade of severe muscular problems that landed me in a wheelchair, so I found your post very interesting. Pain issues aside (and they were major till I got the chair and just stopped using the muscles) my muscles would tighten up more and more with every contraction. They would feel weak for hours, then days as my illness progressed. I have yet to really hear a good explanation from a doc as to what is causing this muscular issue so reading your post was really interesting to me.

How long after supplementing with glutamine did you notice a difference? How much did you take (of course I undoubtedly need less as I'm a 100 lb female). What brand is good? Are there other similar aminos that you supplemented with that you feel helped specifically with the muscle problems or is glutamine the main one?

Thanks for any advice you could share!

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Oh and btw, way to go for fully healing yourself!

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Just wondering roughly how long after going gluten free and adding amino acids to your diet that you noticed that the muscle knots were starting to disappear?

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Hey Guys I just joined but feel that it's my duty to divulge the wisdom I have acquired through nothing but falling on my face repeatedly while trying to recover from Celiac over the last 3 years. My grammar is garbage so bare with me lol. lets start with my symptoms from as early as I can remember tell i hit the break point.

In the eighth grade I would get wicked cramps in my lower stomach that would force me to bend over in pain and eventually end up on the toilet an hour or so later. In the military I would get strong stomach cramps in my upper stomach and then chug milk to make it go away. Months before I got out of the Air Force I got a strong bout of vertigo, one minute I would be watching TV the next second the whole room would start to spin tell I vomited. That was from chocolate (DARK) I later found but it is connected to Celiac I will explain later. After The Air Force Months or so I would drink cocoa before my work outs (cocoa raises your nitrogen levels and helps to dilate your blood vessels, helps you get a better pump and better recovery) I read that right before I got out of the Air Force, connection yep. Hour or so after each work out I would get a strong sense of deja vu then the vertigo then nausea. about 2 years later came the beginning of the breaking point.

My Muscles started to lock up, Muscle knots all over my body, in my biceps, triceps, shoulders, neck, feet, hands, face everywhere. Then my energy levels started to plummet big time. about 4 months after i started to develop a cough and drainage from my tonsils adenoids at night it would drown me I would have to wake up and cough it up and it got worse and worse. one night it got real bad I got up went to the bathroom and drank some water looked down and saw a red line going down the side of my leg! I googled it and it was sepses(blood poisoning) life threatening stuff. I thought well its 2 in the morning ill go to the hospital when I wake up. buy the time I woke up it was 90% gone so i thought well ill give it another day,(I didn't say I was smart, wisdom comes from being dumb lol) It went away and I noticed red patches popping up on my hand shoulder and aahhhmmm crotch. I put 2 and 2 together and figured well that's auto immune, it wasn't there before and the symptoms come and go so it must be something im eating.

I tried everything I could think of cutting out nothing worked, one day i had nothing to eat and hadn't been coughing for a day or two and had a big glass of milk then the drainage started and the coughing, "found it" I thought. (progressive stages of Celiac your body starts to reject lactose in milk) The coughing and the drainage went away but the muscle knots and fatigue stayed, it didn't make sense yet so I kept taking things out tell one day I thought lest try this gluten free thing.

Within two week my energy started to rise after 4 or 5 months i figured out everything that had gluten in it and cut it out. Things got a lot better for me but although the muscle knots where not as bad they where still there. Come to find out the main thing your body uses to recover from damage especially intestinal damage is glutimine the amino acid. The largest stores of glutimine in your body is stored in your muscles. My body was pulling glutamine from my muscle to recover my intestines and leaving my muscles high and dry with nothing to help them recover with so they would shut down and knot up.

Time and a gluten free diet helped but because my intestines were so damaged they had a hard time soaking up enough nutrients to help my body recover. What I finally found was I needed the most nutritious calorie and vitamin rich food I could get and lots of it, I also need lots of amino acids for my body to use for recovery. Long story short its the paleo diet and force feeding my self even when my appetite was low that finally turned the corner for me. Chicken breast, Beef, eggs, pork, sweet potato's, potato's, Brussels sprouts(covered in olive oil baked for 30 min on 400 and dipped in home made honey mustard)green beans corn and all the fruit I could jam down my throat. That's what did it for me all my symptoms are gone even the knots. Im back in the gym and full of energy. Oh Hemp milk has 20 amino acids in it good protein and the chocolate is delish!

I dont want to go on forever so if there's something you have questions about ill pop in once a day to check on the thread.

P.S.

DEATH TO GLUTEN!!!

Can you give us an idea about how long it took from quitting gluten until you can say that you felt significantly "healed"? Thank you for sharing your story!

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Can you give us an idea about how long it took from quitting gluten until you can say that you felt significantly "healed"? Thank you for sharing your story!

Sorry. The OP only posted that one time a year and a half ago. Probably won't get a response.

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    • Weird Reaction
      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
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      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
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      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
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