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Feet Problems/neuropathy/amputations

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Posted 25 March 2011 - 05:26 PM

Both me and my husband were recently diagnosed Celiac and have both been gluten free for about a month now. My husband developed neuropathy in his feet about 20 years ago. He was a landscaper and on his feet 10-12 hours a day and had chronic burning in his feet. In 2000, he developed an ulcer on his big toe and 2nd toe which would not heal. In 2008, when infection set in and doctors recommended amputation of both toes. Recently, he developed an ulcer on his big toe and 2nd toe on his other foot and it looks like possible amputation of those 2 toes as well. At least he has a sense of humor and refers to himself as Keith "8-toes" and even said he may have to change his name to "6-toes". And he can walk just fine without the missing toes and is not terribly upset and having the other toes removed. He has had several test for diabetes and glucose tolerance test, all test are negative for diabetes.

My question is this: Have any celiacs had similar issues with their feet(i have read that neuropathy can be a side affect of celiac)?? Could the ulcers on his feet be a side effect of years of undiagnosed celiac?? Could celiac have contributed to his feet ulcers developing or not healing??
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Posted 25 March 2011 - 05:51 PM

I can attest to having neuropathy in my feet since about the age of 15, and I also don't have diabetes. I was diagnosed with celiac when I was 47, and I'm 54 now. The neuropathy improved a little bit after going gluten free, but it's still there. I recently read that, besides malabsorption of B vitamins, neuropathy may be caused by years of iron anemia. Has he had his ferritin level checked? My anemia was so severe from age 11 until age 50, I had to receive iron intravenously for several years.

If your husband suffers from malnutrition due to years of undiagnosed celiac, I would imagine that that would have had an impact on his ability to heal. I hope you have both had blood panels run to determine which nutrients you may be low in.
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Posted 25 March 2011 - 06:45 PM


My question is this: Have any celiacs had similar issues with their feet(i have read that neuropathy can be a side affect of celiac)?? Could the ulcers on his feet be a side effect of years of undiagnosed celiac?? Could celiac have contributed to his feet ulcers developing or not healing??

I have neuropathy, that was my FIRST symptom and I never got stomach symptoms...The neuropathy led me to a neurologist that ran a bunhc of autoimmune tests to rule them out and BINGO it was celiac. This is shown to be true in many cases. Mine is getting a BIT better BUT still have nerve pain and random tingling. I cannot attribute it to anything specific, it seems to flare up and then subside. I also get it in my tongue...It may get better on the gluten-free diet, be patiend I think nerves can take a long time to heal. I don't know about the ulcers but in all honesty, nothing about this diease is predictable OR simple
How strange that you were both diagnosed! That is statistically weird but at least you have each other to be on the straight and narrow!
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TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy



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Posted 25 March 2011 - 07:37 PM

I don't know about neuropathy, but I had some issues with my feet. Before I went gluten free my feet and ankles were always swollen and odd looking. Kind of blue and white in patches. They were also cold. I didn't actually realize they were cold until after I had been gluten-free a while and they started warming up. Now after 3 years gluten-free they are warm and not swollen, Still don't look just like a normal person's feet but they work ok for me. And they aren't blue and white any more but actually look warm.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul



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Posted 26 March 2011 - 04:03 AM

Neuropathy is not uncommon with celiac. I had it beginning in both hands and feet and it moved up the legs and arms by the time I was diagnosed. They did surgery on one hand because they thought it was carpal tunnel. The idiot doctor even chopped off a muscle he thought was overdeveloped. It was overdeloped because I was an artist and worked with woodcarving and tools a lot and it took a long time for me to get any hand strength back. Anyway I found sublingual B12 helped the nerves heal a bit faster. I even regained reflexes in my legs after losing them as a child. Since I had congenital deformities corrected then they attributed the lack of reflexes to those even though I also had symptoms of celiac at the time including severe DH that was misdiagnosed as 'poison ivy in the blood'.
Hopefully the nerve issues for your husband will resolve eventually but it does take time. I hope they don't have to do another amputation but glad for him that he has such a good outlook on life.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)

celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom

Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)


Marilyn R

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Posted 30 March 2011 - 05:35 PM

There was a really good article in this month's issue of "Living Without" about peripheral neuropathy and gait ataxia. If you can't get access to the article and want to read it, send me a PM. (I sent a link to all of my siblings because it explained what Mom went through to a "tee", and it is what I'm going through. Neuropathy was my first symptom, but none of my doctors connected the dots.
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

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