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Vitamin Supplement Suggestions


cinderellad

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cinderellad Newbie

I have been symptomatic for 2 1/2 years but only recently diagnosed. I had negative blood work and positive biopsy. My biopsy actually read "treated celiacs disease. This may be because my rhuematologist mentioned that he felt I had celiacs or Crohns disease and I somewhat altered my diet (breads, pasta, bakery items). A few years ago I had lost about 10 pounds, my hair starting falling out and I had horrible knee pain. The weight and hair loss were attributed to "stress" and the knee pain was thought to be arthritis due to years of running and cartilage damage. After being seen by two orthopedist, having Hylagan injections and no relief I was sent to a rhuematologist that evaluated me and referred me on to a gastroenterologist. I also had 9 months of stomach pain, and woke most nights in a sweat so sleep deprivation became an issue also. I started to see a therapist in the middle of all of this because every time I mentioned my symptoms to friends/family they informed me that it was "stress" and I was doing this to myself. I began to think I must be really nuts if I could inflict all of this on myself and not be able to get it under control. After being on the diet for the past 3 weeks, my pain is mostly gone, the night sweats are gone, my hands are not swelling , I can almost bend my toes painlessly and I am sleeping better. However, my hair is still falling out, I am very tired, and my gums have started bleeding when I brush. If anyone can recommend any vitamins/dosage I would appreciate your help. I currently take a multivitamin specifically for hair/skin/nails and glucosamine.


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ianm Apprentice

Welcome. I find liquid minerals to be the best thing for me. I get the New Vision brand. www.newvision.com. Liquid vitamins didn't seem to make much difference for me but some people here swear by them. I take vitamin pills that are gluten-free. I used to get night sweats by the bucket full but those are gone now. 3 weeks is not enough time. It seems to take about an average of 3 months for things to really improve and a good year to become healthy. Keep at it because it is worth it.

celiac3270 Collaborator

Centrum is gluten-free and I'd recommend that.

I'd also recommend that you start taking a folic acid supplement

Lesliean Apprentice

Isn't it like a wonderful miracle to feel all around better? Celiac can lower bone density so while the intestines heal it can help to be careful to get enough calcium. Anemia also is common as is B vitamin complex deficency, especially B12. Some people take sublingual B12. I like Centrum Silver because it is cheap and gluten-free. Some people like to add fish oil but I forget what they are adding back-just that they said it helped a lot. I love glucosamine. My knees don't crack anymore. Maybe it would help your joints. I know someone with arthritis (a common side effect of Celiac disease!) who found great relief in glucosamine (1500mg a day). If your stomach gives you trouble, some people like DGL licorice which is sold in health food stores and helps with the gassiness or burping. I drink a lot of green tea and medicinal teas like ginger and licorice.

My running was getting so difficult I thought maybe I was just getting old, but it was really just Celiac disease and I feel better than I have felt in 10 years.

Leslie

KaitiUSA Enthusiast

I like the liquid vitamins especially while intestines are healing because of the way it absorbs in your body. I use Liquid Vitamins Plus by Utrition.

It is probably good to take sublingual B12 vitamins too.

Other things that help are probiotics and enzymes...with the combo of what I took while I was healing it really gave me a boost.

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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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