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Tingling, itching, fatigue, tummy trouble & much more!


Elle1

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Elle1 Newbie

I've been having strange health issues for about 8 months, and only after seeing a holistic nutrition expert have I begun to wonder if I have a problem with gluten. Reading studies, articles, and personal accounts has made so many light bulbs go off in my head. I would like to share my situation in the hopes that someone out there can tell me what path I should take for the fastest resolution to this problem.
Background: Lifelong digestive issues, off-and-on, incl. diarrhea and constipation but more often painful gas/bloating. Diagnosed with GERD at 29, been on PPIs for 10 years (way too long, I know).
Nine months ago, began to experience a strange sensation in my left shin/calf. Sort of like the skin was mildly tingly and more sensitive than normal, like how sheets feel on your legs when you've just shaved them. Accompanied by fatigue, mild digestive distress, brain fog, tiny twitching of muscles here and there, mostly at night and mostly in my legs. Diagnosed with low B12, put on supplements. Should have stayed on them but got off track with them. Symptoms did mostly go away.
Within last month, leg sensations back, along with fatigue, brain fog, and minor twitching. Some days I have little itches randomly all over my body. I'll scratch one and it disappears, then one pops up somewhere else, and so on. I  have had a lot of other symptoms that I read about in celiac articles at times in the past -- headaches, insomnia, depression, abdominal pains, benign breast lumps, breast tenderness, etc.
I think I'm on the right track with this holistic person, who is helping me to wean off the PPIs. I have read there may be a correlation between PPIs/GERD and celiac. She did the zinc deficiency taste test and it was positive. Just started me on some supplements and said we'd work up to other supplements when my tummy is healed from the PPIs. She is the one who mentioned a gluten problem, told me about the possible link with PPIs and that since I'm very fair, blue-eyed, redhead, that may make it more likely that I don't tolerate gluten.
I have always thought celiac disease was only manifested in severe digestive problems, and since I have only had moderate digestive problems -- albeit off and on for a very long time -- I never considered the possibility of celiac disease. My mom has bad IBS, but to my knowledge was never tested for celiac.
This has been long-winded and I apologize, but since I don't think the holistic person can do a celiac test or order one, where would you all go from here? I don't want to waste a ton of time if this is damaging my body. My GP mentioned MS and wanted to send me to a neurologist, but I feel like it's smarter to explore the diet issue at this stage than wasting a lot of time and money, and scaring myself to death, by going to a neurologist. Thank you in advance to anyone who takes the time to reply.


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cyclinglady Grand Master

Do not go gluten free just yet.  Now is the time to ask your doctor for a celiac blood test:

Open Original Shared Link

The catch is that you must be consuming gluten daily in order for the tests to detect any antibodies.  celiac disease a can manfest in so many ways and because this it is often not caught by doctors.  There are over 300 symptoms!

i recommend that you continue to research and advocate for yourself!  Get tested.  If all else fails, then consider a gluten-free diet, but only as a last resort.  Why?  The diet is hard to maintain and more so if you have doubts.  Also celiac disease is genetic.  Your mom very well may have had celiac disease instead of "I be stumped."  You might end up helping yourself and current and future family members.  

I wish you well!  

Elle1 Newbie

Thank you, cyclinglady. I really appreciate your response. I will try to find a doctor who will do a celiac test on me. I have high health anxiety and find myself spiraling into fear that I have something really bad. Not that celiac is not bad, but I would like to get some kind of answer and start working on a solution. Thanks again.

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    • 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. 
    • BlessedinBoston
      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 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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