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Full Recovery, What Worked For Me.


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7 replies to this topic

#1 B-ry.

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Posted 31 January 2012 - 11:16 PM

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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#2 Hopeful1950

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Posted 01 February 2012 - 07:48 AM

"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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#3 IrishHeart

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Posted 01 February 2012 - 08:21 AM

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
  • 2
"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy



Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. Posted Image

#4 Aly1

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Posted 06 February 2012 - 04:00 PM

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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#5 Aly1

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Posted 06 February 2012 - 04:03 PM

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

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Posted 12 September 2013 - 09:47 AM

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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#7 ItchyAbby

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Posted 12 September 2013 - 01:35 PM

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!


  • 0

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#8 kareng

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Posted 12 September 2013 - 02:10 PM

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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