Neuropathy (Pins and Needles on your feet, legs, arms and skin)

by Marilyn
(Florida)

Long story, be forewarned. My mother, an R.N., was diagnosed with Celiac Disease when she was in her late 50's or early 60's. She's still alive at 87, but has lived in a nursing home for several years because she can't walk and it takes a minimum of two people to transfer her from wheelchair to bed or bed to wheelchair. You get the gist.


I always felt like she really had M.S. but it was never diagnosed. She probably doesn't have M.S., but that is one of the many autoimmune diseases affiliated with celiac disease.

She has diabetes and is a breast cancer survivor. Mom was not compliant with the GF diet.

My first symptoms were a tingling feeling all over my body after showering. Then I started having tingling feelings in my feet and ankles, and my fingers and lips. At the worst times, I felt like my legs were being stabbed repeatedly by little razor blades and there were times I'd have to lift my legs with my arms to get out of the car or a chair. I'm 50 years old.

Then I got massively depressed and had low energy. My PCP ordered a blood work up and it showed that I had high calcium. She ordered more blood work and my PTH was within normal limits, so she said I was ok.

I self-referred myself to an Endocrinologist. She had me do a 24-hour urine test and the results were off the chart for calcium. Next, I had surgery. Hyperplasia, the surgeon said, and he removed 3.5 of my parathyroid glands. I was supposed to recover and live an entirely normal life. Hyperparathyroidism is another autoimmune disease that is apparently commonly connected to uncontrolled celiac disease.

I didn't get better. Can you believe that I had blueberry pancakes at a chain restaurant on my way home from the hospital?

Next, more blood tests. I self-referred myself to a gastroenterologist after enduring several weeks of daily nausea, vomiting and diarrhoea. I was supremely depressed and fatigued and had insomnia. I thought I was dying and really wanted to die. My hair was falling out practically in clumps. I have osteopenia, a predecessor to osteoporosis.

Things are looking better on a gluten free diet. The insomnia was solved immediately, as was the gastro problems. The tingling has subsided from a 8 or 9 to a 1 or 2 on a scale of 1-10. I have hope and don't feel as depressed. My first clue when I have a problem with something I've consumed that isn't gluten free is the tingling sensations.

Gin, by the way, is one of those things, even though the ADA says it is gluten free. I've been sick for 19 months or more, now I'm finally looking forward to life! I do not crave even anything not on the diet, with the possible exception of blueberry pancakes.

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Sep 15, 2015
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Lyme and confections
by: Anonymous

Hi,
I would recommend you email the ILADS the international Lyme Association to find a lyme doctor near you. All these symptoms sound like my daughter who has been suffering for 3 years. Most doctors will never tell you about this. You need to be tested by IGENEX labs in CA. Find a Lyme doctor and they will send your bloodworm to IGENEX. Celiac disease has been tied to tick-borne diseases. Get tested for Lyme and all the coinfections.

Good luck!

Feb 11, 2014
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parathyroid-calcium loss -celiac
by: jw

I am 62 and was diagnosed last week with celiac disease -- my vigilant doc noticed that I wasn't absorbing Vitamin D in spite of large prescribed doses to combat osteopenia/osteoporosis -- so she sent me to an endocrinologist for a thyroid/parathyroid workup which included a celiac test. That was the only thing that came up positive.

I have had all sorts of nuisance symptoms over the years, digestive/eliminative troubles, rash, tingling, but nothing was really pronounced enough for me to worry about it and no doctor ever picked up on it (read: I never bothered to mention it!) I felt great on a low carb diet for several years, but lapsed back into bread baking about a year ago . . .

I am now on my fifth day gluten free and am already sleeping better, itching less, and happy to know what is going on! Thank you for posting your very similar story of late-life diagnosis!

Nov 15, 2012
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A lightbulb went off...
by: Cindy R

I am 47 yrs old, and my 76 yr old mother, was just diagnosed with an advanced case of Celiac. She has had her Gallbladder out, hyperthyroid (where she lost 40 lbs in 3 mos.), reflux, severe anemia (the kind that is due to loss of blood in the gut - doctor did an enzyme test for that) and a bunch of other stuff.

I started doing some research, and discovered (sadly) that I too have many symptoms for this disease,and a light bulb went off in my head.

One of the most recent symptoms was a sudden onset of foot pain. I was told it was falling arches, that would explain the pain, but the burning and tingling? It starts out in the heel, and radiates forward through the foot, and on really bad days it shoots right into my toes. It used to tingle and burn when it first started, but now, it just hurts and burns so bad that it will wake me up in my sleep.

Reading the symptoms and some of the stories shared here, leads me to believe I probably have it too. I have suffered with many of the same symptoms for years. I wish you the best of luck, thanks for sharing.

Feb 20, 2012
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Responding to pins & needles
by: Anonymous

I hope you and your sister are doing well. Mom died unexpectadly of pneumonia 2 years ago just before Christmas.

I had a first cousin die of MS at a fairly young age. (Maternal cousin.)

I'm approaching my two year mark GF and developed some other food intolerances along the way. (Dairy, soy, corn, quinoa and oats), but am enjoying dairy, corn and certified GF oats again.

I am not connected with this website at all, but Celiac.Com then click on forums has been a blessing mental health wise.

I've met a few other people who had hyperparathyroidism on the forum, but it's not common.

We were going through my Mom's things when my sister found an entry that she'd had a high calcium level on a blood test.

I so wish you the best in your recovery. It takes awhile. It's taken me two years to want to clean out my kitchen cupboards, and I used to be Mrs. Clean.


Feb 20, 2012
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Even Moderate calcium can be Celiac
by: Anonymous

This story is EXACTLY what happened to me, from being very ill at 50 years old, to parathyroid tumor (large) being finally found at my insistence over resistant and indifferent physicians for proper testing, to the surgery not solving the illness. My calcium was high normal but my phosphorous fell, along with other extremely unusual bloodwork and cholesterol. I had to retire, got even sicker another ten years, then extremely ill, finally self-diagnosed with celiac disease, skeptical, but had it confirmed medically.

So it is now confirmed in my older sister, ill for 40 years with MS but sicker than the grade of MS indicated, and she saw more doctors than one can count.

I remain at 64, homebound, ill, disabled, but not worsening, and ultra vigilant about wheat. I also can't handle corn, banana, oatmeal; that causes my residual neuropathy to inflame just the same as wheat.

I never had the "classic" celiac narrow symptoms, few do, and every specialist doctor I asked if it was something I was eating, said no, even given the exact symptoms and history (If you don't have diarrhea, they will never diagnose it).

Amazing to find the same parathyroid-calcium-celiac story! Hope you do better.

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