Celiac is More Painful Than Thought – and What Does That Mean?

In seeing new pain patients, I became painfully aware that Celiac or at least gluten sensitivity has a definite presence- so much so that I always looked for it. Now, it looks like “anybody is fair game” now that even gluten intolerance without Celiac can potentially have their pain better off gluten for 6 months. What makes things clearer, is the finding of neuropathy in established celiac varies from 0.7% up to 23% with even more –  39% of celiac, having neuropathic symptoms. The latter might reflect how small fiber neuropathy is impossible to diagnose without biopsies – something not done where I live.

Another startling  finding is that sensory Chronic Demyelinating Inflammatory Neuropathy (sensory CIDP) is increased in Celiac. Sensory CIDP is hard to diagnose because of the lack of muscle weakness early on yet is potentially treatable with IV gamma globulin, Plasmaphoresis and pulse steroids. This leaves a subgroup of people with widespread pain treatable which one study in Fibromyalgia found when subjects responded to IV gamma globulin. I find it disturbing that there could be a subgroup of widespread pain Celiac victims that have treatable disease.

Thawani, S. P., Brannagan III, T. H., Lebwohl, B., Green, P. H., & Ludvigsson, J. F.
Risk of Neuropathy Among 28 232 Patients With Biopsy-Verified Celiac Disease.
JAMA neurology.(2015). May 11, E1 – E6

  • 28 232 cases of Celiac
  • 2.5 times risk of developing Neuropathy
  • 2.8 times risk of developing Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
  • 7.6 times risk of Mononeuritis Multiplex

Occurrence Studies of Celiac Neuropathy

Actual stats varies with study

  • their study – 0.7% incidence Neuropathy versus 0.3% in control group
  • more interestingly is the 3.2% incidence of diabetes vs o.4% in control

An American study:

Chin RL ,Sander HW  ,Brannagan TH ,et al .|
Celiac neuropathy.
Neurology. 2003;60(10):1581-1585.

  • found in 6/20 cases and felt it should be considered in sensory neuropathy even without gastrointestinal symptoms
  • burning, tingling, numb, heavy, and “pins and needles” sensations
  • 5/20 gait abnormalities

Luostarinen L, Himanen SL, Luostarinen M, Collin P, Pirttilä T.
Neuromuscular and sensory disturbances in patients with well treated coeliac disease.
J Neurol Neurosurg Psychiatry. 2003;74(4): 490-494.

  • “Heat pain and tactile thresholds in both upper and lower extremities were significantly higher in patients with celiac” – but not other
  • 23.1% neuropathy rate

a US study:
Shen, Ting-Chin David, et al.
Peripheral neuropathic symptoms in celiac disease and inflammatory bowel disease. Journal of clinical neuromuscular disease 13.3 (2012): 137-145.Shen TC

  • More interestingly peripheral neuropathy extends to all causes of diarrhea as well the normal population: (but p<0.001)
    38.9% In celiac
    38.7% in the Inflammatory Bowel Disease

    20.5% in the control group

UK study:
Hadjivassiliou, M., et al.
Neuropathy associated with gluten sensitivity.
Journal of Neurology, Neurosurgery & Psychiatry 77.11 (2006): 1262-1266.

  •  In idiopathic neuropathy,  “Positive immunoglobulin (Ig)G with or without IgA antigliadin antibodies was found in 34% ” vs 12% seen in controls. Those with isolated IgG serology, are usually thought of as more dermatitis herpetiformis candidates (chronic itch +/- limb blister rash)…
  • felt mean age onset 55

CIDP Issue

The most disturbing issue, is its connection with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) -a treatable disease

Few facts re CIDP:
Advances in the diagnosis, pathogenesis and treatment of CIDP
Marinos C. Dalakas
Nat. Rev. Neurol. 7, 507–517 (2011)

  • “Chronic inflammatory demyelinating polyneuropathy (CIDP) is the most common acquired chronic autoimmune neuropathy”
  • though most idiopathic, associated with diabetes,  hepatitis C, lymphoma,  monoclonal gammopathy of undetermined significance, HIV / AIDS, organ transplant, connective tissue disorders, Charcot–Marie–Tooth disease, and  melanoma
  • 4-24% diabetics affected
  • in Sensorimotor neuropathy, 34% had positive IgG with or without IgA antigliadin antibodies (vs seen in 12% healthy controls)
    Hadjivassiliou, M., et al.
    Neuropathy associated with gluten sensitivity.
    Journal of Neurology, Neurosurgery & Psychiatry 77.11 (2006): 1262-1266.

Classic CIDP:

  • Motor and Sensory Changes so some weakness likely
  • Proximal and Distal
  • Reflex loss- ankle or generalized
  • Progressive or relapsing
  • Positive electrodiagnostics distinguishes it from small fiber neuropathy that has no features
  • Protein high in CSF – a good feature but rarely ever done here.
  • Lumbar MRI may show  enlarged Nerve roots

Sensory CIPD

  • Earlier on, only sensory loss might be prevalent, confusing it with plain neuropathy
    Berger, Alan R., Steven Herskovitz, and Jerry Kaplan.
    Late motor involvement in cases presenting as “chronic sensory demyelinating polyneuropathy”.
    Muscle & nerve 18.4 (1995): 440-444.

Comments –

  • “Gluten Neuropathy” might be rampant in Celiac subjects seen at a pain clinic.  CIDP is potentially more common in Diabetes. With the combo, one wonders is CIDP is higher. I have one diabetic with celiac and widespread pain that I am going to have to look closer at.
  • In people with either disease, and particularly with combo, assessment by a neurologist with EMG is indicated.   CIDP is treatable with IV gammaglobulins,  plasmaphoresis and steroid 4 day pulses ( though extra diabetic meds would have to be planned with latter).
  • More interesting, is in any chronic pain patient with Irritable bowel symptoms, not only can celiac, but also inflammatory bowel disease, result in widespread pains.
  • There is a warning associated with this – people with celiac and any inflammatory bowel disease and not good candidates for flouroquinolone (Levofloxacin, Ciprofloxin) as theses drug are notorious for causing neuropathy. Still, have had to use them short term but not any length of time – but be warned…

Sacroiliitis Issues

Next comes the issue of Celiac Sacroiliitis:

  • Either subclinical or belt line back pains with morning stiffness
  • Usai, Paolo, et al.
    Adult celiac disease is frequently associated with sacroiliitis.
    Digestive diseases and sciences 40.9 (1995): 1906-1908.
    “Bone scintigraphy was positive for sacroiliitis in 14 cases (63.6%). Except in the case of one patient suffering from rheumatoid arthritis, laboratory data were normal.”

Recently saw a lady with chronic diarrhea.

  • She has had failed back surgery and failed revision of back surgery. She has had failed spinal column stimulation.
  • Gastro and neurosurgeon specialists tell her there is nothing to do and she is sold on that.
  • Patrick and thigh thrust tests of both her SI joints are grossly positive. To be fair she  had one injected before but  anesthetist never got around to injecting other. (I find results are so much better when both are injected at same time – undoubtedly partially a dose issue (80 vs 40 mg kenalog)
  • she feel a portion of her problem in her left flank and the skin is tender – obviously tender cluneal nerve tracts probably with thoracolumbar facet issues.
  • She has let me work on her left  quadratus lumborum muscles once but obviously needs much more work
  • Scar is tender too..

I suspect she is either celiac and/or microscopic colitis with inflammatory sacroiliitis. How much neuropathy is involved is another issue. Now I will have to consider CIDP as well. Of course there are thoracolumbar, quadratus lumborum and cluneal nerve issues too.

One will need to review chronic pain patients for celiac, IBD, possible peripheral neuropathy and more importantly CIDP. Checking for ankle jerks which  is not effected in small fiber neuropathy, would be a good start. Seeing a neurologist who does EMG’s another. 4 day pulse therapy of dexamethasone 10-40 mg /day x4 days might give some idea of  CIDP or inflammatory issues but given wide range of issues don’t expect great changes.

Did I mention people with chronic diarrhea can have low?

  • Thiamine –
    Yeh, Wei-Yi, et al.
    Thiamine-deficient optic neuropathy associated with Wernicke’s encephalopathy in patients with chronic diarrhea.”
    Journal of the Formosan Medical Association 112.3 (2013): 165-170.
  • Low B12 from malabsorption even without the diarrhea

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One Response to Celiac is More Painful Than Thought – and What Does That Mean?

  1. Jane Williams says:

    My mother had CIDP and my brother has been diagnosed with coeliac. I am gluten intolerant (likely coeliac but couldn’t face the necessary gluten loading for diagnostic upper GI endoscopy). I have been found to have low B12. I have neuropathic symptoms of pins and needles, muscle weakness and altered sensation in my lower legs. Could I have CIDP? Should I get tested for coeliac?
    I have also been found to be osteopenia.
    With muscle weakness as part of the picture, CIDP is a real possibility. EMG muscle/nerve studies could help clear up this picture – get a referral for those studies. Loss of ankle reflex jerks could highly suggest it and prove to your doctor it would be worthwhile.
    Treatments for CIDP include IV gamma globulins and plasmaphoresis – both very expensive propositions so workup is very important.
    Pulse oral high dose cortisone (dexamethasone 40 mg/day for 4 days each month) is sometimes used and could aggravate your bone density. Any ulcer meds could aggravate that and might need to be reduced to using every other day. Vitamin D 4000 u/day would help both calcium absorption and at that dose have anti-pain properties. If post-menopausal estrogen replacement might be an option under 60. Over 60, Evista/Raloxifen “fake estrogen” can be used – if you are willing to accept the slight increase in stroke risk and the leg cramps you can sometimes get with it’s use (the latter makes it a problem for someone with leg issues already). Calcium 1000 mg or more/day is required and the scare over heart disease issues has not been confirmed by a recent study.
    There is a subgroup of Fibromyalgia patients with only gluten intolerance (not frank celiac) that improves off gluten but it takes 3-6 months to notice benefits. Calcium can cause diarrhea sometime and celiac subjects are highly prone to microscopic colitis – normal looking bowel on scoping but increased inflammatory cells in lining of bowel at certain biopsy sites. This can cause diarrhea in its own right.
    I hope you get the treatment you need.
    – admin
    Any suggestions from Celiac victims out there?

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