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Major Meltdown Yesterday


bonnie blue

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Kimbalou Enthusiast

For about a week now I have been very depressed, I have been gluten-free since September 13th, (funny how you remember the exact day when you finally find a diagnosis) Anyway I don't know if it is the holiday season, or that at times having Celiac is very overwhelming, but yesterday at work I lost it. For no real reason I started crying and could not stop, I locked myself in the bathroom and just sat there on the floor of the bathroom crying my eyes out, after awhile my boss knocked at the door wanting to talk to me, he is very understanding of everything I am going through, he wanted to send me home, but after a chat with him I decided to stay. I did finish the day, and today I have the day off, so I am looking to my new friends here to tell me I am not crazy and this has happened to someone else. So I am asking has anyone else went on this emotional roller coaster that I am experiencing now. I would appreciate any input, thank you all, this forum has become a second home to me.

I totally understand! I'm trying to be positive, but it is hard. Especially when people have different reactions to it. Have you seen the website "Gluten-free girl and the Chef?" She has a lot of amazing recipes. I just went gluten-free at the end of Nov., so I am new to this. I haven't tried her recipes yet. I think we should try to look at all the things we CAN eat, not what we CAN'T. It's also an opportunity to get creative in the kitchen! I am always on an emotional rollercoaster, so I feel your pain :). Hang in there!!


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bonnie blue Explorer

Thank you Thank you to all that have responded. You have made me again realize I am not in this alone. I think alot of the emotional strain right now is that I have always been the "baker girl", in fact Sundays were the days I made homemade bread, cookies, brownies, you name it I baked it. And I have already tried many recipes and shared them with family and friends with great reviews, but nothing will ever take the place of my mom's homemade bread recipe,:( So with the wonderful support of my new Celiac family here, my amazing husband, wonderful daughters, my sweet grandson, and my friends, I will keep goin, just taking it one day at a time. Every day I feel better, I am on the road to good health again and thats all that matters. B)

THernandez Newbie

I have been gluten free for a few months now, and I have had several times where I have started crying because it just all seems like too much sometimes!! I am half Italian, and eating pasta, crusty italian bread, pizza, etc has been part of my life for as long as I can remember. I also used to love to cook, and now it just seems like so much work to make sure that every ingredient is gluten free. Sometimes I miss the "comfort" food, grilled cheese, mac and cheese, pizza, and I know there are substitutes, but it just isn't the same. My husband is great, but I know it can get old with me always asking "is it gluten free?" In the scheme of thinks, life could be so much worse, so I do count my blessings every day. I agree with another post that says it is heathy to just cry and get it out. Hope it helps to know you are not alone, I know it helped me to read your post.

This was me 4 years ago. But cooking gluten free comfort foods has become my passion. I even started a blog so I could keep track of all my recipes for my kids, since they inherited bad genes from me, I wanted to make sure they can cook all the foods they love when they grow up and are on their own. Honestly, the home made gluten-free versions of grilled cheese, pizza and mac & cheese are as good as I remember. I was only diagnosed a few months ago, but my kids were diagnosed 4 years ago. SO I had the real thing not that long ago. I did a fair comparison to work out the kinks in my cooking by doing back to back taste testing (something I can't do anymore, but now I make my husband do it.)

If you really like to cook, it's almost more fun, because it's like a chemistry experiment. With wheat flour, it doesn't matter what you are making, for the most part. If you're making bread, add yeast to get it to rise. If you're baking sweets, add baking powder. That's kind of it. But with gluten-free baking and cooking, you have SO many flours to choose from and depending on what you're making, you can pick and choose the ones with the right properties and textures to get what you're looking for.

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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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