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JohnnyDoom

Possible Sensitivity or Celiac?

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Hello everyone. Since March I've been experiencing a number of Muscleskelatle issues. I began having chronic burning in my right shoulder. I thought it was due to weight lifting and a desk job. Eventually my right arm started numbing and tingling. My doctor ordered physical therapy. It helped a little. I began having issues with spasming in my neck. I continued to do the therapy exercises. I went back to the gym after four weeks or so. I weight lifting lightly for a few weeks. In May the weird symptoms hit me. My neck was stiff, dizziness, coordination, balance, floaters, headaches, pain in my right leg, tingling in my feet. I thought for sure something was seriously wrong with my neck. MRI was normal of my cervical spine. I was refered to a neuro. The neuro suspected MS. MRI of brain was normal. He said I pinched a nerve somewhere in my neck and that I would be fine. I went back to physical therapy. They were baffled by my symptoms. They said the upper part of my body was due to bad posture at my desk (Even though they praised me for posture while walking and sitting in the lobby LOL smh) They couldn't explain the leg symptoms. They said just keep stretching. I went to my primary care doctor.. again. He ordered blood for calcium, iron, electrolytes and thyroid. All normal. I asked him about b12 and he laughed at me. He said none of this would

I went to another neuro. He looked at my images of my cervical spine and brain. He said they looked perfect. He ordered an MRI of my lumbar spine. It was normal. I had some degeneration at L5..but he said that was probably a birth defect and wasn't worried. EMG was normal as well. He gave me anti depressants and it only made my symptoms worse. I was desperate for help. So I went to a chiropractor. The chiro has helped with the stiffness in my neck. I almost have full range of motion.. but symptoms are still lingering. I still get stiffness/tingling in my arms, my legs still bother me, I have floaters, headaches/backache in the morning, dizziness, off balance feeling, ringing in ears, foot sometimes falls asleep, intermittent carp tunnel symptoms in both hands..you name it. No stomach issues..although I get a nasauated feeling my chest. My chiro keeps insisting that I need more curve in my spine.. I was in "phase 2" of degeneration. I know it's bull.. because I don't have any arthritis..no degenerative disc's, nothing. I think he's getting nervous because some of my symptoms aren't improving. He doesn't really have explanation from some things. Although, it helps with the neck stiffness. He has taken urine samples twice and my PH levels are still VERY low. He asked me if I'm drinking enough water. I drink water like crazy. I did some research and I read that celiacs are in fact chronically dehydrated.   I went back to the neurologist that thought I originally had MS and had him review the images again. He said they were fine. He told me to take ibuprofen to keep the nerve inflammation down.  I have problems with my right arm when working out and both arms shake. My legs don't feel like they have the strength. When I work out I get dizzy, I have problems with my right arm and trap, legs don't have a lot of strength, speech is slurred,  I get sinus congestion, lump in the throat/sore as well. Strange right? I worked out last night and woke up in the middle of the night with pain in my hips, legs, and neck. I almost went to the ER. The symptoms cleared after walking around for a while.  You would think if I something serious wrong with my cervical spine, it would've showed on my MRI/XRAYS. I've been to 2 neurologist's, ortho, ENT, Primary Care several times..so I've spent a lot of money. I just want to know whether or not it would be worth going to a GI for another opinion. Has anyone else had similar issues? Would it be worth getting another opinion?

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Hi,

I am not sure I will be helpful. I used to regularly exercise and I had some shoulder and lower back pain. I was told to go for a physical therapy and I did, which did not make much difference. Even when I was not exercising, would also wake up in the middle of the night with some pain either in my legs, back or a headache and often get dizzy. Sometimes, the moment I opened my eyes, I had a horrible migraine and my lower back was so stiff and painful that I felt like I could not move. I worried about MS and got an MRI done, and thanks God, it was fine. After I stopped eating processed food, sugar, dairy, and soy, I began seeing improvement in general. I have not had headaches and back pain in a long time. It is great that you did all of these extensive tests to rule out many things. There are so many symptoms that overlap in many diseases that it is hard to tell. Take a closer look at the food that you eat and pay closer attention to see if something bothers you in any way. If you can, get tested but I really do not know if this could be celiac. 

 

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I JUST came here with this same problem (plus gastro issues and vitamin deficiencies). I tested negative for celiac, but did a gluten-free trial anyway when I realized all my symptoms came after eating wheat. I'm doing better now. Look up gluten ataxia and gluten neuropathy if you want more info.

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Ender...did you have the stiffness in the neck as well? How long did it take for you nerves to heal?

I don't know about a stiff neck, but the last time I experienced the numbness really bad, it had spread to my neck and half my face and lips. I'd actually gone gluten-free a couple of days before that, so luckily I don't know how bad it might have gotten. :ph34r:

Please understand, I've only been gluten-free for a week, so take everything I'm saying with a grain of salt. Also, understand that I'm just doing better, relatively speaking. I'm seeing improvement in my symptoms. We have a somewhat different set of symptoms and for different lengths of time, and I can only really talk about my own experience since I'm very new to this site, too. I've lurked enough to recount some advice I keep seeing over and over though: get tested for celiac before you go gluten-free. From what I've read about gluten neuropathy and gluten ataxia (especially without gastro symptoms) you probably won't test positive (I didn't), but at least you'll have been tested, right? 

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You might as well get tested.  Celiac has over 300 symptoms and disorders associated with it, and that includes neuropathies, and ataxia. Uveitis (floaters) also can co-occur with celiac disease, and should be checked by the eye doctor.  http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf

Do not go gluten-free before testing because that could cause false negative results.

The tests are:

  • tTG IgA and tTG IgG (tissues transglutaminase)
  • DGP IgA and DGP IgG (deaminated gliadin peptides)
  • EMA IgA (endomysial antibodies)
  • AGA IgA and AGA IgG (antigliadin antibodies) - older and less reliable tests
  • total serum IgA
  • endoscopic biopsy (6+ samples taken)

Get as many tests done as possible because the tests do miss some celiacs.  Multiple tests increases your odds of the disease being found.  http://www.worldgastroenterology.org/guidelines/global-guidelines/celiac-disease/celiac-disease-english

Be aware that if your symptoms are due to celiac disease or non-celiac gluten sensitivity (NCGS) it could take many months to a few years on the gluten-free diet to see improvements.  Nerve damage and arthralgis seem to take the longest to recover after going gluten-free. My arthralgias were still improving after 2 years gluten-free. Other symptoms like headaches and bloating could start improving days or weeks after going gluten-free.

Best wishes!


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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I had similar neuropathy issues.  Doc checked for MS, lupus etc all negative.  Endocrinologist work kept coming back normal.  Finally diagnosed hypothyroid a year or so after celiac Rx.  It took several years on gluten-free diet for many of my symptoms to subside.  i had severe deficiencies by the time I was diagnosed.

 i have been 10 years gluten free now, but this year I started getting neck pains, headaches, nausea, and pain in the thoracic/chest region.  Doc did complete heart workup because of the nature of pains. I went to a chiro wanting relief from the neck pain, both she and i thought my symptoms could be possible gallbladder issues.  It turned out my thoracic region was pushed forward and lacked the natural curve which in turn pulled my rib cage outward causing constant pressure. By the end of the week my pain was nearly resolved…I chose to start with least invasive solution first.  Glad it worked this way this time, it can be frustrating going through months of testing with inconclusive results.

Good Luck to you!

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Thanks for your input everyone. Beachbum-I'm beginning to think it could a thoracic outlet problem similar to what you have. I read people with thoracic outlet isses can experience floaters as well. Did you? My chiro juat blows me off when I mention it. But I still have weakness in my right arm..pain/stiffness/tingling in right leg and tingling in my left foot. My diet was BAD this weekend. Both dairy and gluten and I felt fatigued and still do. It's just frustrating when doctors keep blowing you off. 

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Hey folks. I went to the chiropractor today. I had numbness in the back of my neck/head/left side of face/numbing tingling in pink/index fingers on both hands. He asked me.. "Do you have a cold?" I said, "No..not at all."  "Your lymph nodes are really swollen." He had a lost look on his face. But the light bulb turned on for me. He did an adjustment and still feeling it. I'm beginning to think it's b-12 (my primary care doctor refused to test me for it). That could be an underlying problem for Celiac. I'm going to stay gluten free for a while to see if my symptoms diminish. I'm tired of going to doctors because they all think I'm crazy. Has anyone experienced swollen lymph nodes as a symptom of Celiac?

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