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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Peripheral Neuropathy, gluten, and dairy
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I am a 66 year-old woman who is suffering with tingling and pain in my feet.  I am not diabetic, and doctors have no idea what the cause could be.  I also have hypothyroid and vitiligo.  

I was tested for celiac a few years ago and the tests were negative.  However, a couple of months ago, I stopped eating grains completely because I thought that the neuropathy might be due to gluten sensitivity.  The foot pain lessened some, but still persisted.  I started eating bread a couple of weeks ago, and now the pain is worse than it was before!  

I have gone gluten-free since Saturday, but obviously, that's not enough time to make a difference.  I am wondering if it is important to go dairy-free in addition?  I have read that dairy and gluten are similar proteins.  I would hate to give up my yogurt in addition to giving up grains.  

Is it OK to eat other grains besides wheat?  I have also read that all grains contain some gluten, but would like some confirmation of that. 

 

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I was in an out of wheelchairs for 26 years - even had surgery on both feet - which did NOT work - and now since being gluten free, and eating mostly organic fruits and veggies, I am no longer in pain. The pain in my feet is mostly gone. I have eliminated gluten, as well as most caffeine, as well as soft cheeses, real whole milk (I use Silk), and yogurt. I still eat eggs, hard cheeses, and occasionally at my mom's, a limited amount of whole milk. The trick for me also though, is avoiding foods sprayed with a bunch of pesticides. Certified gluten free Cheerio's makes my feet hurt for days. Non-organic celery does the same thing. So the pesticides is the only thing I can think of. Keep trying different things. Don't give up. You got this!

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Raspberry - a friend (who isn't a celiac but has non celiac gluten sensitivity) and I (a celiac) have both have had all sorts of odd neurological symptoms and neither of us have given up dairy, although have gone gluten free.  I have seen some improvement, she has seen huge improvement. I would say definitely try going gluten free  but you may need to be patient as  neurological symptoms are often the slowest to clear up.  

As for dairy , that's more difficult.   I have noticed on MS forums that some people find they improve going dairy free, too, so perhaps that would imply that it might have some impact on nerve health in certain cases but it is a big food group to give up.  It will be interesting to see what other people post, but I think I would be inclined to get serious about going gluten free first.

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I go by the handle of "feet burn"

Similar to what raspberry was saying. This has been going on for about 2 years now. It started slowly on my left side leg & slightly in arm & hand. Then progressed to my right leg. Pretty harsh constipation developed at the same time. I'm not sure if they are related.  (big dark tacky smelly) (SORRY FOR THE VISUAL) My basic complaint has  been numbness from the waist down similar to an arm falling asleep from being laid upon all night while sleeping. You know, that tingely feeling along with partially paralitic legs & feet. My feet burn as if in boiling water & feel like theyre  in paper sacks instead of hains socks. There's days I can barely stand to put on my boots. Along with all this, my skin is hypersensitive especially the bottoms of my feet. Durring & after strenuous labor I get electrical pulses ,3 in a row, from mid thigh to my feet. Also I feel as if I'm in mid defication 24/7. I've evolved & adapted as best I can but it takes twice as long to accomplish half as much when I'm working. About 1 1/2 years ago I began seeing a very talented local neuroligist. I've had 4 or 5 MRIs EEGs xrays blood tests urine tests fecal tests brain scans optical tests some test where they shocked my legs at different amperages & a spinal tap. I'm not diabetic or hyperglycemic no parkinsons or MS no Lyme disease or syphilis, (or any other parisite)  There's no skeletal or muscular issues. My brain eyes ears & spinal cord are ok. In a nut shell, I'm healthier than the average 54 yr old male. There hasn't been any definitive diagnosis from my doctor & the dozens of specialists he's consulted with.  My symptoms don't seem to be getting any worse. I attribute that to my active & strenuous lifestyle. About 2 months ago my constipation, which had pretty much disapated, insantly turned to uncontrolable balistic diahoria. Bloating cramps acid reflux nausia & acidy stomach. Within a day or 2 I found that milk was a big trigger. It was so bad that these sneak attack bathroom sprints sometimes resulted in epic failure to arrive in time. I assumed I had become lactose intolerant, but over night? After about 21/2 weeks & the loss of 12 pounds, my sister 18 yrs my senior, put me onto  the anti gluten theory. The diet has stoped her parkinsons from worsening. I've never worried about my diet, but these symtoms  made me really decide to eat healthier. I'm not saying I have celiac or lactose. I no longer have insurance, so I've not been tested for it. My research on this site & tips from my sister have slowly improved my digestive issues to about 70% of normal. Also I'm not  sure yet, but I think my neuropathy is disapating.  I have a couple activia yogurts a day.  Only fresh fruits & veggies. No dairy or breads. No more cup of sugar a day sweet tea. No canned or processed foods. Especially no choke & puke yickdonalds or any fast  food for over 25 years. Xlg & Xxlg should be an option but not  the only option in clothing. Also why does the average child or 30+ yr old have more meds than my grandparents did? My guess for pharma & fast feedya to be allowed to poison us is our governments way of culling the herd. Everybody's  sick nowadays. Then big pharma comes in like a saving grace with the cure for the new ailment of recent concern.  What  people are ignorant of is that this ailment was inflicted upon us through the food we trust is good for us because advertising tells us so. Pharma & feedya are all just one big conglomerant that profits from the ill health  inflicted upon us consumers.  There's no food in our food anymore, & we gladly overpay for it daily.  Just consumables that inhibit our health while someone's monitary health increases. Ever notice in advertising that doctor feel good has a new pill to fix you  all up, well as long as you take a 2nd pill to ease  the side effects, but after taking the wondercure & cure for the cure, are  you getting better? Then the next item in the advertising lineup directs victims to join in the class action lawsuit against the harmful wonder  pill apporoved by the FDA 20 30 years ago. STAY AWAY FROM; GLUTEN GMOs PROCESSED & FAST FOOD OR INGREDIANTS YOU CANT PRONOUNCE OR DONT KNOW WHAT THEY ARE!

 

 

 

 

 

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Gluten is present in wheat, rye, barley, etc. A different kind of gluten protein is present in some other foods but not the kind to worry about (IE corn gluten is a different kind of gluten)

If you wish to cut out dairy you do not have to give up yogurts there is So Delicious Coconut yogurt available and even in unsweetened versions ends up being healthier then normal yogurt as it does not have that sugars associated with dairy. There are also almond and soy milk based yogurts available .There are non lactose containing cheeses like lissanatti, and a whole bunch of vegan cheeses based on soy, cashew, and almond based milks. Might try a whole foods diet and try dropping all processed foods for a week and see how you feel better.

Nerve damage is the slowest to heal, I have the issues myself. I have little to no feeling of touch and heat sensitivity in my hands and feet. I find it a tad amusing I can cut my hand and not notice it til I look at it most times, then I simply clean and seal it with super glue >.> Most days it is to the point of I can reach in to a oven or touch something hot and the heat has to reach deep tissue before I notice it. I also lost a decent amount of my mental processing ability on odd things. Again comes in waves a few things come back to me every now and then, and I am slowly regaining a few things.

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Hi Raspberry,

I am sorry about your symptoms.  It is up to you, but if you want to be tested for celiac disease, you should do that right away.   The celiac disease testing requires active antibodies in the bloodstream to work.  After you go gluten-free, the antibodies decline and the tests won't be accurate.  Celiac testing is usually a blood test for gliaden antibodies and then an endoscopy to check for gut villi lining damage.  There is a genetic factor in celiac disease so some people like to get tested so their relatives will know about the genes being present in the family.   But their is no difference in treatment, the treatment for celiac is always the gluten-free diet, and possibly some vitamins supplements.

Here is some info from the University of Chicago cureceliac site:  (the name is a goal, not a reality)

*************************************************

http://www.cureceliacdisease.org/faq/what-common-nutrient-deficiencies-might-an-adult-experience-prior-to-diagnosis/

What common nutrient deficiencies might an adult experience prior to diagnosis?

Iron, calcium, and Vitamin D are the most common deficiencies, but some present with deficiencies in B12, copper, folate, magnesium, niacin, riboflavin, and/or zinc. Nutrient deficiencies associated with celiac disease are due to intestinal damage caused by protein in wheat, rye, and barley. In most cases, nutrient deficiencies that were caused by damage from celiac disease will naturally resolve as your intestine heals. Many gluten-free dieters choose foods that aren’t fortified with vitamins and minerals like their gluten-containing counterparts. Thus, we suggest a general multivitamin to prevent against nutritional deficiencies. August, 2015

*************************************************

B-12 is a vitamin that is associated with nerve function.  People with celiac disease may not be able to absorb enough B-12.  Please read the info on this link to Mayo Clinic.

*************************************************

http://www.mayoclinic.org/diseases-conditions/vitamin-deficiency-anemia/symptoms-causes/dxc-20265323

*************************************************

This may be the cause of your nerve symptoms.  You can try taking supplements to help raise the level of B-12 on your body.  B-12 is available as an individual vitamin in several forms, including liquid and sub-lingual tablets.  The sub-lingual form is touted as being more absorbable but I am not sure that is true.

I had minor nerve symptoms before going gluten-free.  Ticks and muscle twitching, brain fog, and pesky walls that would jump out in front of me when I was walking.  Some depression and anger issues.  Poor memory.  Those mostly went away after being gluten-free for a while.  They say nerve type issues are the slowest to resolve, but if they start getting better it sure feels great! :)

Vitamin D is also often low in people, even the general non-celiac public.  So a check of your vitamin levels is in order if celiac is suspected.

Welcome to the forum Raspberry and all! :)

Edited by GFinDC

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Welcome!

Do not rule out celiac disease yet.  People who are genetically predisposed can develop it at anytime.  That is why my kid gets tested every few years even if she is symptom free.  You might ask for the complete celiac panel again after getting back on a diet containing gluten.  Do not settle for the screening TTG iGA.  Why?  I test negative to it every single time!  Yet I had just a positive on the DGP IGA (even on follow-up testing after a glutening) and intestinal biopsied damaged.  

I wish you well.  

 

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Great advice. Funny but I have just remembered years ago going through a stage when my feet really burned at night.  I'd completely forgotten that.  I put it down to chilblains although on reflection I'm pretty sure it was B12 deficiency.  B12 is a wonder vitamin and so much goes wrong without it.

http://www.livestrong.com/article/412276-b-12-deficiency-burning-feet/

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I experience peripheral neuropathy in hands and feet, sometimes with great burning in my feet. I have discovered that products containing corn, but particularly cornstarch, are one of the culprits with this. For me it was less the wheat and more this common ingredient that appears almost everywhere wheat does.  Oddly, actual corn is less of a problem than cornstarch or chips (less concentrated). Years ago I had a several neuro symptoms (never diagnosed, but probably post-viral syndrome) and mentioned to my nutritionist that I suspected medication and supplements contained an inert ingredient that was aggravating my neuropathy. She suspected it was cornstarch. So for the next couple of years I avoided it completely (which is not easy, because it is in A LOT of things ranging from medication -- ironically gabapentin, which is sometimes used to treat neuropathy -- in the coating before they sauce many foods (in lots of chinese food). and it is virtually always in bread and baked goods.  So even though corn gluten is completely different, and not a celiac threat, it can pose issues for others on these boards who suffer from this awful ailment.  Sulfites are also an issue, as are alcoholic beverages (even one). Vodka is not as bad, because it doesn't also have sulfites. So if you are still having peripheral neuropathy issues try eliminating one of these at a time. 

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2 hours ago, Corn too said:

I experience peripheral neuropathy in hands and feet, sometimes with great burning in my feet. I have discovered that products containing corn, but particularly cornstarch, are one of the culprits with this. For me it was less the wheat and more this common ingredient that appears almost everywhere wheat does.  Oddly, actual corn is less of a problem than cornstarch or chips (less concentrated). Years ago I had a several neuro symptoms (never diagnosed, but probably post-viral syndrome) and mentioned to my nutritionist that I suspected medication and supplements contained an inert ingredient that was aggravating my neuropathy. She suspected it was cornstarch. So for the next couple of years I avoided it completely (which is not easy, because it is in A LOT of things ranging from medication -- ironically gabapentin, which is sometimes used to treat neuropathy -- in the coating before they sauce many foods (in lots of chinese food). and it is virtually always in bread and baked goods.  So even though corn gluten is completely different, and not a celiac threat, it can pose issues for others on these boards who suffer from this awful ailment.  Sulfites are also an issue, as are alcoholic beverages (even one). Vodka is not as bad, because it doesn't also have sulfites. So if you are still having peripheral neuropathy issues try eliminating one of these at a time. 

Popcorn, wine, as well as coffee are my favorite things.  Have you identified what is left to enjoy?  

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I have had mobility issues but not certain if due to celiacs. i hv read several articles about this perphial nuerologic affect of being low on vit b12! my physical therapist doesnt know where connection lies but i keep finding info! anyway i can relate i started w knee problems and w limited mobility became stiff too. had knee surgury in 08 n it never went straight! ive had bouts pt to treat contractor plus subluxation of patella! my gait is crouched now n walk w walker! its hard to imagin this could be caused by celiacs! any sugg on info n tupes treatment!!

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