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Danny66

Researching And Trying To Connect The Dots

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46yr old male trying to connect some dots, and looking for some input. Long post, so thanks for reading. :)

Woke up one morning to find a bump on my right shoulder. Come to find out I had an Acromioclavicular injury and after the OD finally sending me in for a MRI, we also discovered a tear in the shoulder. This was on the right side. Also, some years ago i had torn my left rotator cuff. The thing here is i could never remember something where i had caused the damage. I use free weights a bit and had just guessed I had caused the injuries at some point during a workout. One of the biggest issues that has me doing my research is daily unbearable fatigue. I

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46yr old male trying to connect some dots, and looking for some input. Long post, so thanks for reading. :)

Woke up one morning to find a bump on my right shoulder. Come to find out I had an Acromioclavicular injury and after the OD finally sending me in for a MRI, we also discovered a tear in the shoulder. This was on the right side. Also, some years ago i had torn my left rotator cuff. The thing here is i could never remember something where i had caused the damage. I use free weights a bit and had just guessed I had caused the injuries at some point during a workout. One of the biggest issues that has me doing my research is daily unbearable fatigue. I

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I had almost all of your physical/neurological problems and more for my entire life. Also, at celiac conferences, it is often mentioned that celiacs cannot remember much of their childhoods because of decreased blood flow to the frontal lobes of the brain (caused by celiac). Celiacs oftentimes have plaques throughout their brains, but there hasn't been a lot of research in this area. Your numbness and tinnitus could be caused by malabsorption of B vitamins (especially B12). I think celiac is definite possibility in your case--in fact, I think you DO have celiac.

Although not a lot of research has been done on how celiac affects the muscles, tendons, and ligaments, many of us can describe the pain and tightness that you have also described. I've suffered an entire lifetime from rigid muscles, tendons, and ligaments as well as painful bones and joints. One physical therapist told me I had the most rigid muscles she had ever encountered, and an orthopedist immediately assumed I had some form of muscular dystrophy (which I don't!).

I can immediately help you with your muscle problems (the fatigue, recovery time, and pain). I've helped a number of other people on this forum, and perhaps one or more of them will jump in to lend credence to the solution I'm about to describe to you...because the change is phenomenal after doing this simple thing, which oxygenates the cells of the body. I learned about it when I was studying the cause of cancer (which I have) and then was happy to learn that it helps with muscle fatigue and lactic acid buildup, too. Since implementing this simple solution, I've had NO muscle spasms, muscle fatigue, long recovery time, or rigidity. Apparently, I was lacking what is called "parent essential oils" (Omega 6 and 3) in a particular ratio.

All you have to do is take 1/2 teaspoon of organic flaxseed oil and 3/4 teaspoon of organic safflower oil and mix them iton either a smoothie or a small glass of juice. You can take it once or twice a day. I usually take it in the morning and then again just before I exercise--I can exercise longer, more intensely, and with zero recovery time afterward. Believe me--this really works, and I owe this knowledge to the book "The Hidden Story of Cancer" by Brian Peskin. A marathon runner recently posted on this forum with the same concerns as you, and after he tried this solution, he was able to run like he used to and didn't have to spend days on the couch recuperating. He's doing just fine now.

Please see a doctor about having your vitamin, mineral, and hormonal levels tested (especially B vitamins, Vitamin D, iron, and thyroid), because you may need supplementation. However, when it comes to muscles, doctors seem to know very little.....so I hope you'll try the easy, inexpensive treatment I've described, because I know how you feel. I've been there and spent 50 years with muscular pain and weakness, and now I feel absolutely normal.

Oh, and please get tested for celiac. If your tests are negative, go gluten free anyway...and you may experience a vast change in your health (especially joints, neurological symptoms, and digestive complaints).

Please let us know what happens--I think you're about to embark on the road to recovery!

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I think you have connected the dots. Get the testing done, then regardless of the results, try the diet. Gluten intolerance can be just as severe as Celiac, so don't let a negative dx discourage you. From those of us who have been in your shoes, we can honestly tell you your whole world is about to change for the better.

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I would actually suspect that the muscle tightness and possibly the TMJ (bruxism?) is part of the malabsorption of nutrients associated with Celiac, magnesium in particular for those issues. Here's an article I noted when I was researching:

http://www.is.wayne.edu/mnissani/bruxnet/ploctran.htm

Bruxism and magnesium, my clinical experiences since 1980 -- By C. Ploceniak

I can't necessarily recommend a good magnesium supplement, but if or when you start absorbing nutrients you should be getting some from your food. I have one that I'm going to test again soon, now that I think I've finally figured out other intolerances that were bothering me.

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ciamaria brings up some good points--you may also be lacking in magnesium. While many brands of magnesium can cause digestive upset, two brands seem to be well tolerated: Bluebonnet Liquid Magnesium and Nature's Way Magnesium Complex.

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Welcome Danny!

Congratulations for connecting the dots. It is unfortunate that so many of us with numerous symptoms go undiagnosed or misdiagnosed for many years. I don't think I read one of your symptoms that could not possibly be linked to Celiac Disease.

You should definitely get tested for Celiac Disease.

Full Celiac Blood Panel:

Total Serum IgA

Tissue Transglutaminase IgA and IgG

Gliadin IgA and IgG

Endomysial Antibody IgA

Deamidated Gliadin Peptide IgA and IgG

Also, low vitamins/minerals can indicate you are not absorbing nutrients properly - another indicator of Celiac Disease and as others have mentioned the possible cause of many symptoms. So you might want to have these drawn at the same time as the Celiac panel.

Misc blood tests:

Bs, D, K, Iron, Ferritin, Copper and Zinc

Just wanted to add a bit about your left ear. I have been partially to mostly deaf in my left ear my entire life - it got worse with age and surgery to structurally repair my middle ear. I had random ringing and inner ear itchy/stuffy feelings my entire life that also got worse with age. At about a year gluten-free I was walking with a girlfriend (whom has always known which side is my better side/automatically positions herself on my right so I can hear her more clearly) - she happened to be on my left side which was very unusual - suddenly I realized I could hear her clearly and later that day I told my husband to stop yelling at me...he said "what are you talking about I'm not talking any louder than usual" - my son's confirmed he wasn't talking louder - then the volume of the TV bothered me where it never had before! While I still have loss of hearing in my left ear, I can understand words much more clearly and the tingly, ringing and itching are very infrequent these days. Subsequently my daughter (has the exact same problem in her right ear) removed all gluten and a few months later had much improved hearing. Can we prove the connection to gluten, no. Do we believe the inner ear problems we have are related to Celiac Disease, absolutely.

Celiac Disease can effect any part of body, because if your body can't get the nutrients it needs from the digestive system - it can't function properly.

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I would echo what has been said.

Celiac Disease is a multi-system disease and affects you from head to toe. Your list sounds a lot like mine!

Get tested and even if it's negative, please try a strict gluten-free diet to see if you feel better.

My muscles, tissues, tendons and bones were so deeply impacted by Celiac that even 20 months after diagnosis, I am still carefully and slowly rehabbing them. The physical therapist, massage therapist, and the women's pelvic floor specialist all had to help me for nearly two years. I could not walk, sit, stand or lie down without pain. I had serious muscle mass loss.

I had both shoulders done years ago and I still had pain and my TMJ pain was excruciating. I lived in hell. I could not lift my arms or dress myself at one point. This horror went on for 4 years, but

....Last month, I went kayaking. :) whoohoo!!

Please read this, giving notice to Muscular system symptoms:

http://www.recognizingceliacdisease.com/21.html

and this:

http://glutenfreeworks.com/blog/2010/07/03/health-in-depth-muscle-weakness-in-celiac-disease/

And look into the supplements ROSETAPPER has suggested. I had to replenish my tanked B-12, B-9 (folate), D, (these were all found through lab tests) and essential fatty acids and amino acids PLUS I supplement with collagen for tissue repair.

I use 2 lbs. weights now, but at one point, I was told to "get a scooter to get around" and accept my fate. NOPE!

Best wishes!

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I'm sorry for all you're going through. I had (a few, still have) many of the same symptoms. Going gluten free was a life-changer for me! I was able to eat without having pain all of the time, and some of my other symptoms improved as well.

Like I said, I really can relate to many of your symptoms. I found out that I was clenching/grinding my jaw in my sleep. At first I didn't believe it, but after grinding through a mouthguard in about 3 weeks, I couldn't argue with that proof. That kind of clenching caused terrible headaches, tension, pain in shoulders and neck, etc. I'm still working on the clenching.

Keep us up to date on what happens with you. Good luck!

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Ditto what the other said. A lot of that is me too. I can relate to your hand pain...annoying!

I also wanted to suggest thyroid testing. Iis more common in women, but with your sibling history, hypothyroidism could cause many symptoms along with extreme fatigue. Many with celiac are hypothyroid too.

Best wishes.

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Thanks everyone for the info, recommendations and wishes.

Took a little turn on Sat and went to the ER. Everything in the past couple of weeks has intensified a bit after having a hotdog and fries at the end of a round of golf. I had immediate distention like none I've had before, and have pretty much been miserable since. That's a food group I don't have very often, even before I try a gluten free diet.

Anyway, the numbness moved to the left side of my face, and the neck and back pain in the joints and muscle was just about too much. Everything in the ER; EKG, CT SCAN, Chest Xray, and blood work was ok. My glucose was 102, so a couple ticks high. That was odd since I hadn't eaten in over 12 hours. The ER doc wanted to keep my overnight to have a neurologist come in and do a couple of tests. I'm not a big fan of hospitals, and probably not the most compliant patient either :).

I did schedule an appointment and was seen by a neuro on Tuesday.. She didn't note anything remarkable, but did request a MRI of the brain with contrast.. That sounds like a lot of fun.. Gonna cost me 600 bones also,, :(. She also referred me to a cardiologist for an echo.. Typical cover my booty types of things ;). So, we'll see what all that holds..

I did make an appointment with my wife's Naturo office. I'll see them tomorrow. Hopefully get somewhere with that. STOP here if you don't like TMI!

This morning I made another booboo (note to self; STOP IT!!!). I typically will do some eggs or fruit and nuts for breakfast.. Forgot my routine of throwing a few eggs in the boiled egg contraption when I woke up, (did i mention my memory issues???), dooh.. Little rushed, SOoooo, i had a bowl of mini wheats instead.. (ok, I've gotta write that note down; STOP IT!!!!)... Started off ok, then little bloating and major gurgling on the ride to work. I ride a Harley, so that makes for some interesting discomfort, (hmm, anyone ever seen a porta-potty on a harley).. Got to work, then the jabbing pains in the gut start, followed by a major lightheaded feeling, nausea, and a pinch of head pains here and there for good measure. They would only last for a few seconds maybe a minute, but the lightheaded feeling hung around all day. Now, we all know what's next right??? Ok, the 2nd BM of the day; (had one before the mini wheats), never knew a BM could have some many aspects and shades of color in one sitting (hmm, Picasso in a toilet bowl)... 3rd BM an hour or so later was a little more consistent, unrewarding, pale, loose, and floating (maybe a cheap imitation)... Sorry still feeling like pooh; (ok, bad choice of words), and needed to vent.. I told you to stop up there ;). OK, where did i put that note to "STOP IT!!!"...

God bless, thanks for listening..

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Do yourself a big favor. Tomorrow at the Naturapath request labs - full blood work up for Celiac. No stool testing, no in-office test. Full celiac panel from a lab like LabCorp. ND's can order those. That gets the Celiac bloodwork out of the way, no arguing or waiting. You'll probably have those labs back by the time you start making your specialists rounds.

Here are the tests: http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets3_Antibody.pdf

And tonight, throw out the gluten foods or put stickies on them saying "no". Yeah yeah, I know you're supposed to stay on it for testing but dude, I don't think that's such a good idea for you if gluten gives you that kind of neuro reaction.

Get the lab order tomorrow. Express loudly you are going gluten-free and it must be done. Demand it. Don't leave without it. Would be nice to get a full thyroid work up for tsh, Hashimotos and Graves, request free t3/4 and reverse too.

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Thanks PP..

The gluten free thing is the plan.. I'ma thinking this is going to be a battle with the wife..

This naturo I'm seeing tomorrow isn't her doc, so i'll have to feel him out. They did schedule me with him, because chronic pain, arthritis, et al, is his specialty. I'll certainly be pompom'ing from my side..

I'm really thinking my issues are related to gluten/celiac.. I guess you never know though.. I have all the pain, and fell bad, but don't really feel sick if that makes sense. I don't really think the neuro and cardio will find anything major, but my wifes coworkers and family have her all worked up about strokes and hear attacks, so I'll have to appease her I guess :).

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I didn't feel that "sick" til I looked back on it. Judging wellness, for a Celiac or person with any AI condition, is like asking a blind person to describe a color they've never seen.

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Yeah, I'm starting to think that way as well. I have a really hard time remembering how I felt even a few months ago.. I need little clues to help me. I do remember thinking sometime around may or so of last year how awesome i felt. I spent a few years of life not caring for my body too much. I did give up the sodas, started eating real strict, and hitting the gym heavy at the end of 09. Still gotta give up the smokes though :(.

That feeling of wellness i felt last year was awesome, then the mystery shoulder injury in Oct of last year stopped the gym thing for a bit. I got back into free weights and some cardio a few months later, but just can't seem to get back to the same level. The fatigue and lethargy are just overpowering. I know at least in June I was feeling tired. A slow bedroom due to fatigue ;), was leading me to think my T was low, so I had purchased a tribulus supplement to help. I emailed the wife today to ask her how long I've been feeling tired.. That's when I remembered the supplement, and went and checked the order.. I know all the neuro issue have been going on for several months, because I can vaguely remember talking to the PT for my shoulder about them. Hmm, ok I'm rambling,,, sorry..

Long story short, is I can remember that at some point I was feeling pretty good.. But been a while, and since that stupid hotdog and fries 3 weeks ago, everything seems to have went haywire. I did have some MAJOR stress (calls to the boss I'm quitting type stress) on a couple of projects at work at the beginning of the year. I believe I've read that stress can trigger celiac/gluten.. Timing would be about right,, I think :(.

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Possibly another dot connected. Just discovered that my father was diagnosed Celiac by biopsy last year..

My Naturopath did request the Celiac panel. Will have that next week.. Onward and Forward..

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I found, that when I hit a certain point (stress, The Damn Rash) I literally just broke down mentally and physically.

They feed each other. At that point, you just have to become resolute, decide to work on finding the cause and doing what needs to be done to fix it. You CAN figure this out.

How did your doctor appt. go?

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I'm with ya, it's been an absolute bear.. I haven't experienced any major rash issues. Get a little breakout right below the sternum every so often. Never though much about it though.. I guess that changes eh?

The Drs appt went well. It was the initial homeopathic intake, so not much in the way of diagnosis yet. See him again on the 18th after the lab draw..

For what it's worth, I do have ups and downs for sure.. When it gets bad I supplement with Rhodiola rosea. It seems to help me quite a bit..

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I'm with ya, it's been an absolute bear.. I haven't experienced any major rash issues. Get a little breakout right below the sternum every so often. Never though much about it though.. I guess that changes eh?

The Drs appt went well. It was the initial homeopathic intake, so not much in the way of diagnosis yet. See him again on the 18th after the lab draw..

For what it's worth, I do have ups and downs for sure.. When it gets bad I supplement with Rhodiola rosea. It seems to help me quite a bit..

So he ordered a Celiac panel? Are you staying on gluten or going off? Sooner is better since antibodies start falling.

Hopefully you're getting a full thyroid panel, too.

Had mine drawn Friday - 20+ tests/7 vials. This time looking at some new thyroid stuff. Hopefully something is obvious. Celiac is easy compared to Hashis. Sigh.

Then went and did a hard upper body workout and heavy cardio. Without breakfast. Not my smartest move. Arm was throbbing. Dumb.

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So he ordered a Celiac panel? Are you staying on gluten or going off? Sooner is better since antibodies start falling.

Hopefully you're getting a full thyroid panel, too.

Had mine drawn Friday - 20+ tests/7 vials. This time looking at some new thyroid stuff. Hopefully something is obvious. Celiac is easy compared to Hashis. Sigh.

Then went and did a hard upper body workout and heavy cardio. Without breakfast. Not my smartest move. Arm was throbbing. Dumb.

Yes, he ordered the full panel, full thyroid, b12/folate, iron panel, methylmalonic Acid, urinalysis, yeesshh, i think he checked off all the boxes...

I do a routine called strong lifts, i've always felt better doing it on an empty stomach. With cardio, i run down fast w/o eating.. Although, everything runs me down these days,, fatigue after eating had me so tired, getting off to the gym is challenging.

I'm going to stay on gluten (acutally im loading it right now), until after the blood test. Then i'll let my doc decide if i should continue on with it until after a biopsy if that becomes necessary..

I experienced the thyroid issue with my wife.. She spent 10+ years on antidepressants due to a thyroid issue allopaths didn't want to accept or dig into. That's when i started researching it and finally took her to her current naturopath, she diagnosed her hypo on the first lab, prescribed he Armour, and she's turned around completely in about 18months.. Dropped a bunch of weight, off the meds, glucose/a1c back in line, etc...

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