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Cross Contamination?


heather Goble

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heather Goble Rookie

I recently stopped eating gluten. I have dealt with annoying symptoms all my life that I just brushed off as just annoying stuff that happens. It wasn't until I was finally completely frustrated by them that I looked into what may be causing them. Extreme fatigue (from as far back as I can remember), horrible memory and lack of focus, bad coordination, stomach aches, gas, bloating, small weird things like tingling in my arms, numb fingers and toes and those are the ones I can remember for now. Anyway, upon looking all of these up I kept coming to the same conclusion- that they are all symptoms of gluten intolerance. So I ran all of them by my doctor and he did a basic blood work. I asked him to add a celiac test too, to which he replied, well you most likely don't have that. The blood work all came back fine, leaving me frustrated. A year passed and I am even more tired of being tired all the time, tired of the constant headaches and other symptoms. I found this forum and was surprised at the amount of people who test negative but still have legitimate gluten intolerances, so I decided to eliminate gluten. That was a month ago.

The first week was great. No headaches, no falling asleep on the couch after dinner, or nodding off after lunch, no more tingling in my arms or numb toes. Then I had a small piece of cake, which led to itching all over and shortness of breath. The following week I ate out avoiding obvious foods, but knowing there was most likely cross contamination- miserable with migraine headache. Drank a couple of vodka and tonics the next night (since I read that vodka was ok) ended up puking my brains out the next day, nauseous all day and arm tingling (didn't drink enough to have a hangover as this is not an uncommon drink and they were spaced out over hours). Turns out Grey Goose doesn't claim to be gluten free.... I work at an elementary school and we are doing standardized testing and offer the students those red and white round mints while they are testing, didn't really think about it and popped one in my mouth. Within 30 minutes I was itching all over and and had diarrhea. No one else in my house is gluten free which probably makes it hard to avoid cc. I am guessing this is what is happening? It seems like every reaction I have is worse than the one before.... I am getting so frustrated! I haven't been back to the doctor since going gluten free, but am considering contacting him about further testing or advice. Any advice would be greatly appreciated.

As for last years test results, this is what came back in the report. Am I wrong in thinking that this isn't the full test for celiac?

deamidated Gliadin Abs, IgA, which was 2.2

deamidated Gliadin Abs, IgG, which was 0.7

Thanks for any advice


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iamsarar Rookie

I was having a problem with CC in my kitchen. I finally made one cupboard for my husband and one for me did they same thing with our freezers one has gluten, one is gluten free. counters too, He uses one, I use the other. Any food I prepare for us is always gluten free. We had 4 friends over for dinner, 6 people total and I fixed a gluten free meal for everyone including dessert. Everyone loved it and were surprised it was gluten free....and vegan! Cook for your health. others will like it too. Also don't forget to check your pills, lipstick/gloss, shampoo and so on. I found gluten in my makeup and lip gloss as well as my shampoo and some of my vitamins. It was also in my generic nasal spray, the very thing I was taking for congestion was making it worse!!

I decided anything that was by my month (makeup) or on my hands (hand soap and lotion) had to be gluten free. After changing my pills, makeup, lip gloss, lip balm and shampoo I feel so much better. Look at everything in your life from head to toe!

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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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