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Frustrated!


kkkkaty

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kkkkaty Rookie

I was diagnosed with Celiac in August and at first I ate only fruit, veggies, rice and little else but slowly I've discovered lots of great things to eat. But I haven't been feeling very good for awhile now- I have more headaches, bad sleep, general achy-ness.My stomach is much better but not entirely right. I think I eat well, take vitamins, run 4-5 days week..I should be feeling great. I just got back from the holidays with family and, as far as I know, ate nothing bad. But I felt terrible. I spent a bunch of time on this board looking for clues and came up with a whole list of things I may be doing wrong- toaster, lipstick, shampoo- to name a few. I am feeling so overwhelmed by this right now- Should I have dedicated wooden spoons, cutting boards, other? Maybe I expected this process to be easier or faster.I have always had an excellent attitude about this but I'm sooooo frustrated!


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Mother of Jibril Enthusiast

Welcome to the group!

I'm sorry you're having such a frustrating time :(

Have you considered that you might have another food intolerance or another autoimmune disorder? I felt even better after I stopped eating corn. Plus, I think once you're off gluten it becomes easier to recognize other things that might be going on in your body...

A book that I've found helpful is "The Autoimmune Connection" by Rita Baron-Faust and Jill Buyon. It's well-organized, scientific and provides lists of symptoms and related disorders. For example, here are some disorders that turn up in a lot of people with celiac disease:

- type I diabetes

- thyroid disease

- Sjogren's syndrome

- primary biliary cirrhosis

- myasthenia gravis

- pernicious anemia

I would look through the book and see if anything fits your symptoms. Then, if you're not completely sick of doctors... go ask for some tests.

gfpaperdoll Rookie

You are probably getting cross contaminated, are you still cooking for other whith wheat flour. Still cutting your apples on the same wooden cutting board that you used for wheat bread?

check out the cross contamination threads. & be careful about the gluten free goodies that you are eating, especially the ones that are manufactured in places where they have wheat etc.

kkkkaty Rookie
You are probably getting cross contaminated, are you still cooking for other whith wheat flour. Still cutting your apples on the same wooden cutting board that you used for wheat bread?

check out the cross contamination threads. & be careful about the gluten free goodies that you are eating, especially the ones that are manufactured in places where they have wheat etc.

Thanks for the reply. Are you saying that one should not cook with wheat for other people? I make cookies, cake, pancakes, etc. for my kids - is that considered risky? I understand the idea of dedicated tools and dishes and I'll be paying attention to that immediately. Please clarify about the cooking...Thanks.

SGWhiskers Collaborator

The airborne flour and baking mixes are a no, no for us. It is easy for us to inhale bits of flour and the reaction can sometimes be more or less severe. Then the flour dust falls to the countertops later in the day, and we can cc ourselves again. I've switched to using gluten-free mixes and hubby does not seem to mind a bit. We also have store bought goodies in the kitchen for him. I'll handle the gluten items if I must, but I avoid it most of the time because I'm still getting mystery glutenings.

I hope all your new information helps you feel better.

SGWhiskers

mbrookes Community Regular

There are so many gluten-free cookbooks and recipes available that I cook only gluten free for my family and guests. Nobody knows the differeence, except that there is no bread. In fact, I just had my family here for Thanksgiving and served all gluten free food, even desserts. Everyone raved!

Just tell your family that this is something you have to do to stay healthy. There will be no more gluten cooked in your kitchen. They can eat all the gulten they want when they eat away from home.

This may sound selfish, but what good are you to them when you are sick?

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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. 
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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 
    • 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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