NCGS - nerve or muscle problems?

[73DAllen]

I believe  that I have NCGS, but I am not sure about the latest symptoms. Looking for feedback from those with similiar experiences. 

Quick med history - mom has lupus and sister has full blown dx’d Celiac.  I have had stomach issues for most of my life, numerous ER visits and never anything found. 4 years ago I kept pestering my gastro with intestinal issues; my entire gut was a mess: constipation /diarrhea /gas / cramps / sharp pains. After ever imaginable test they decided my gallbladder needed to go. My lower back hurt for a year later and my gut pains returned. After another round of tests I was dx’d with severe IBS, likely had it since a child. I told the doc I had recently tried a Gluten free diet and was actually feeling better - so he said I must also be intolerant as my blood work did not indicate Celiac (no biopsy however).  I stopped the gluten-free diet in January of this year  

The second half of my medical story is around my muscles and joints.  I have been a weightlifter all my life and about 4 years ago (same timframe as gut issues getting worse) I started complaining to my PCP about feeling horrible every morning, difficulties getting up and moving each morning - mostly joint aches.  My bloodwork showed elevated CPK (250).  Fastforward to March of this year, my CPK has been tracked regularly for 4 years and has been elevated every time (250-500), but this is where something has changed.  Over a very long work weekend in March cutting timber, my forearm muscles began to cramp along with joint pains in my hand, started in the right arm and then moved to the left.  The right arm now feels like it is almost asleep but not numb, a very discomforting feeling.  Then this sensation moved to my right leg and now my legs (shins,calves, & hamstrings) are fatigued, tight up to the point of a cramp and they hurt.  I am also now getting cramps in my back and shoulders . 10 weeks into this and I have cramps, twitching, fatigue, and tension all over my body with muscle pain (dont think I have true weakness yet).  I get no relief.  I have seen a neuro who conducted an EMG & NCV, he said nothing neurological is wrong (other than very brisk reflexes).  I have had a work up by a rheumatologist who cleared me of autoimmune diseases.  I have completed 21 days of doxycycline with the idea it is Lyme.  When I stand up it feels like something is settling in my arms just above my wrists and it causes pain, in my shins too.  I have some tingling and numbness, but nbr 1 complaint is pain.  

I am going back on the gluten-free diet as I did have some improvement in overall feeling, but I am of course wondering if NCGS can cause this much pain with muscles or nerves.  I don’t know the source of my pain, but I feel like it is nerves since no strenth of muscles relaxers or massages provide relief.  I am half the man I was just 2 months ago, I have no energy to do anything that I normally would. Anyone have experience similar to this?

 

Edited June 5, 2018 by 73DAllen

[cyclinglady]

I would ask for the full celiac panel  (TTG, DGP and EMA) again since you have been consuming  gluten since January.  First degree relatives should be retested every two to three years or sooner  if symptoms warrant.  Note that some celiacs are seronegative.  In that case, an intestinal biopsy is needed.  

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Get the full panel.  If my GI had just ordered the screening TTG, my diagnosis never would have been caught.  Maybe you did not have the full panel the first time.  Maybe you should get biopsies.  In my opinion, IBS means “I be Stumped.”  

I wish you well. 

 

Edited June 5, 2018 by cyclinglady

[Ennis-TX]

Ditto on cyclingladys comments, but I wanted to point out some other things, if you have celiac you will suffer with nutrient deficiencies, some of the major ones will cause the numbness, tingling, and join issues like Magnesium, full spectrum of B-vitamins, vitamin D, iron etc.
Magnesium sounds like the major one for you do look up the symtoms and see how they match, depending on your bowel habits I would either suggest Doctors Best powder at night before bed, or using Natural Vitality calm if you have constipation issues dosing to tolerance. With it you start off at 1/4 tsp (1-2g) and raise it that much a day til you reach the full dose or get loose stools then back it back down.

[73DAllen]

I have been on supplements for a month now, no relief. Also have high powered relaxers, no relief. 

 Just got a copy of my last blood work, CPK still elevated but also notice that my Lymphocyte Abs was low...an indicator of inflammation I believe.  My history points to NCGS, and I know some present with muscle issues...just wondering if anyone can relate.