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tattooedmom

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tattooedmom Newbie

Hi all,this is my first post. After searching and searching trying to figure out what was wrong with me ( two docs just smiled and made suggestions on what I could try ) I decided to take myself of gluten,my nana and sister are both celiac. I went off all gluten last Monday,and was feeling better within two days! It was great,I felt the best I have in a very long time. Then my honey bought me some Hershey milk chocolate bars,and some snickers minis. According to what I found online these should be fine but I feel so sick! I had a Hersheys bar last night,and a few snickers today. My head is pounding and I feel sick to my stomach. On top of that I have pain in my legs like I remember growing pains feeling like. Could those candies really have gluten? I'm also itchy and my sinuses hurt. I felt like this (and worse) everyday for the past two years. I was so happy to be feeling better and new I just feel low. Thank you in advance :D for any help!


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kwylee Apprentice

If it turns out either of those candies are gluten free (sorry, I'm not where I can easily search the internet, and I personally don't eat those because of the dairy) it still be a case of cross contamination if they are produced on shared equipment. Seems I've heard that about snickers before.

For me, dairy (and soy) quickly became the same to my body as gluten. I can tolerate a small amount of dairy now but not soy.

sa1937 Community Regular

Hi all,this is my first post. After searching and searching trying to figure out what was wrong with me ( two docs just smiled and made suggestions on what I could try ) I decided to take myself of gluten,my nana and sister are both celiac. I went off all gluten last Monday,and was feeling better within two days! It was great,I felt the best I have in a very long time. Then my honey bought me some Hershey milk chocolate bars,and some snickers minis. According to what I found online these should be fine but I feel so sick! I has a Hersheys bar last night,and a few snickers today. My heard is pounding and I feel sick to my stomach. On top of that I have pain in my legs like I remember growing pains feeling like. Could those candies really have gluten? I'm also itchy and my sinuses hurt. I felt like this (and worse) everyday for the past two years. I was so happy to be feeling better and new I just feel low. Thank you in advance :D for any help!

Welcome to the forum! Since you're so new to being gluten-free, it's probably best to avoid most processed foods for the time being. I do occasionally eat a Hershey's bar or a Snickers without a problem. Of course cross-contamination is always a possibility, too, and you might want to also eliminate dairy for awhile.

Hope you feel better soon...a lot of us have problems occasionally even after being gluten-free for quite awhile.

tattooedmom Newbie

Thank you both! I agree,I should avoid pre-made things for a bit. I get very low blood sugar if I don't have something high in sugar/carbs before bed. It used to be pretzels and a little cheese,I need to find something new! It really is amazing how quickly I felt so so much better,I have this small fear that I will start to feel sick all the time again.

YoloGx Rookie

Most of us have problems with dairy, especially at first due to our damaged intestinal villi. Yogurt is better than straight dairy and its just possible you could handle that. Nevertheless you might still want to wait on even trying that for a while, like at least 6 months??

Plus all that sugar can be a problem too for low blood sugar. Really. You might not think so, but it stresses the hormones badly. Easy to digest protein like those Asian azuki beans and chicken with brown rice and veggies gives you a more steady slow burn, which is what you are looking for. So many of us have hypoglycemia, especially at first due to malabsorption from the damaged villi in the intestines. Sugar will make you feel fine for a moment, but then gums up the works feeding bad bacteria and overstressing your adrenals.

Meanwhile I think your doctors should be taken somewhere and shot for pure pig headed ignorance. Your Mom and sister both have celiac and they didn't even consider you might at least be gluten sensitive? What goes here??

Meanwhile, not everyone can handle chocolate. Unfortunately I am one of those, as I just rediscovered. I tend to test my parameters once in a blue moon and did so with gluten free chocolate (from Enjoy Life), the good kind with nothing added except for cane sugar. And I ended up feeling awful., with a terrible migraine and diarrhea. In the past I thought I could eat chocolate now and then, but it appears not. So generally I have carob when I have the urge--though for me it has to be tree nut free too. So I just get the powder from a reputable supplier and it works fine for me.

However, most here can and do love chocolate without too much ill effect. Best to ask advice as to what is the best kinds from them. They do have dairy and soy free chocolate that I know about, which is what I had, i.e., the Enjoy Life brand found at health food stores.

Korwyn Explorer

Two people I know have found they can't eat the Snickers Minis, but seem to be able to eat regular Snickers. Entirely anecdotal I know, but possibly the shared production line is a different setup (maybe that line has something crispy on it and the regular Snickers bar line doesn't)? Or perhaps you are more sensitive to CC at this time since you are just starting out.

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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. 
    • 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 
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