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Nerve Issues And Diet?


daniella

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daniella Newbie

About 2 months ago I developed a severe pain in my inner ankle/foot area and within a week or so was in the worst pain of my life. I have been in bed most of 6 weeks. I first thought it was an injury and had bone scans,xrays but it turned out not. I was reffered to a neurologist and was given emg tests and now have an mri on sat. I have sharp pains in my foot and tingling,numbing. I can barely walk and am in aircast when I do. I was also given a nerve block shot and am on nerve meds along with vicadin for pain. Anyhow I have been tested in the past for celiec and it didn't show but I have a lot of the symptoms including very high liver enzymes,low white blood count,bloating and cramping,usually constipated but when I go its a lot, and now this nerve issue. Before this nerve issue I always had sore joints and pains. I'm in my late 20's. I'm under the care of 3 plus docs right now but was wondering if anyone had any input and found a wheat free diet to help. Thank you and I hope this was the proper place to post.


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GeoffCJ Enthusiast
About 2 months ago I developed a severe pain in my inner ankle/foot area and within a week or so was in the worst pain of my life. I have been in bed most of 6 weeks. I first thought it was an injury and had bone scans,xrays but it turned out not. I was reffered to a neurologist and was given emg tests and now have an mri on sat. I have sharp pains in my foot and tingling,numbing. I can barely walk and am in aircast when I do. I was also given a nerve block shot and am on nerve meds along with vicadin for pain. Anyhow I have been tested in the past for celiec and it didn't show but I have a lot of the symptoms including very high liver enzymes,low white blood count,bloating and cramping,usually constipated but when I go its a lot, and now this nerve issue. Before this nerve issue I always had sore joints and pains. I'm in my late 20's. I'm under the care of 3 plus docs right now but was wondering if anyone had any input and found a wheat free diet to help. Thank you and I hope this was the proper place to post.

I had nerve issues in my feet and hands, for 7-10 years. Tingling and numbness. It doesn't sound as severe as yours, mine is rarely debilitating, though on occasion it makes walking or doing simple manual tasks very difficult or uncomfortable.

I have seen some improvement in frequency since going gluten free 4 months ago, but not much improvement in severity. I am still experiencing some GI issues, I'm trying to eliminate corn now, and am starting to wonder about diary.

Geoff

RiceGuy Collaborator

Two things in particular have helped me greatly with nerve function and such. A sublingual methylcobalamin supplement (vitamin B12), and a magnesium supplement. I recommend them most highly.

JNBunnie1 Community Regular

I have to bring something up that's very unpleasant, however unlikely. Has any of your doctors considered MS?

daniella Newbie

Thank you for your replies. I feel very lonely,confused,and scared along with the pain. Thank you for the suggestions and personal experience. I have not been tested I don't think for ms. Unless that would show in my mri tomorrow. I did have bone scan,emg,and doppler,xrays and complete blood work. I'm very frustrated with docs at this point because one sends me to another or like the neurolgist who sent me to pt that overstretched me and now I'm in worse pain then before and why I started to take vicodin. I'm very concerned that all the waiting to get in for tests or for the doc to order more after waiting to see if the meds help or what the previous test shows is making things worse. I'm trying to not get ahead. On the note of stomach issues like last night I was up all night with cramping,bloating and feeling like I need to go.Also would it make a difference if not intolerant but sensitive if you just limit but not take away? Thank you again its very appreciated.

marciab Enthusiast

Your digestive issues could be from the Vicodan. All pain meds tear up my stomach. And make me feel like I am disconnected.

I hate it when doctors make me feel worse. I have pain in my right hip and foot from a herniated disk, but the excercises the PT has me doing actually make it feel better, not worse. Did your PT help you with these to make sure you were doing only the ones that did not cause you pain ? Lite stretching excercises are best.

Rotating ice and heat, 20 minutes on and 20 minutes off is actually better for pain than most drugs.

Gluten lite will still cause problems for a lot of people. I can't have any gluten whatsoever or else I will get my myoclonus and insomnia back.

Marcia

daniella Newbie

Thanks well my stomach symptoms were before the meds but I do agree it has made it worse. I always though that celiec disease came with more diareah and I'm so constipated but when I do go its a lot and I feel drained like again I was up all night with such stomach bloating and still constipated.This is regardless of fiber intake. I saw a nutritionist because I eat a lot and though I don't feel hungry I feel malnurished if that makes sense. I have a bug appetite though regardless of hunger. As for pt actually I saw another doc yesterday and for my issue it aggrevates it. I had my mri today so will see and a nerve shot yesterday. If the next set of shots doesn't help and these tests don't show anything they think they will do surgery to release a nerve. So sick of this and it really teaches you how health is so important.


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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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