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Is It Real?


egallag

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egallag Rookie

I was diagnosed about a week ago and have been gluten free since. Is it odd that I was happy to get the diagnosis? I mean it has been years of suffering, to finally have an answer and an answer that is something I can control, was such a relief I did not even think about what it would take to change my life (well not right away anyway).

So I am working on changing my life, went out immediately after my appointment and bought some Gluten free to get started. I started researching before getting my results, just in case. I ordered a couple of Gluten free cookbooks and a shopping guide (I should get them today!).

Here is the "Is it real?" part. I feel like a new person already, it is amazing! I addition to Gluten free, I have started taking Lactaid for my Lactose intolerance (I could not bear not having gluten or dairy, so I figure stop one and put up a defense for the other for now). I have also added a daily dose of DanActive.

I have not had an "episode" in 3 days. It is such an odd sensation to not feel dread when I eat that I keep waiting to feel awful and when I don't I am inclined to want to dance :). And since I am not totally exhausted all of the time, I just might dance.

Don't get me wrong, I am completely freaked out by the whole thing and found myself day dreaming about Perogies and Pizza. But when I eat something and that inevitable pain and discomfort does not follow, it is great.

That's all for now, I just had to get that out there. Thanks for listening, I am happy to have a place to come to talk about things and ask the questions that I am sure will come.

Beth


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GlutenFreeNewB Rookie

Congratulations on feeling better already! It is an awesome feeling to finally figure out what helps. Be very careful eating "gluten free" processed foods at first. Sometimes it takes a while before your body is ready for anything processed. Try eating meat, vegetables and rice at first; foods that you prepare yourself. Try adding in new foods slowly - one at a time while checking for a reaction to each one. After a couple of months, it gets much easier and you start to feel like a "normal" person again. Keep on dancing!

Skylark Collaborator

Yes, you can stop pinching yourself. It's real. :)

Nicolevh Newbie

;Oh you are not alone! I was diagnosed about a month ago. My switching to totally gluten-free has been slow (I went on a trip just a couple of days after my dx and I did not adhere to a strictly gluten-free diet). But, I have been gluten-free for about a week now, and I do notice a huge difference. I'm not running for the bathroom or the couch immediately after eating. Tonight I tried Tinkayada's (sp?) penne with mozzarella, tomato, and basil and it was amazing. I was prepared for it to taste different but I thought it tasted exactly the same (and I'm Italian and grew up with the homemade stuff so that's a pretty high review). A slightly different texture but It was way better than I ever thought it could be. In it's defense I used olive oil so it just made the pasta a little slippery and hard to get it to stay on the fork- flavor wise I thought it was spot on. With the exception of just a few items I found everything I needed/wanted at my local Safeway so that makes it even better. I did have some frustrating moments on my first major shopping trip and had to bypass some items to wait until I could come home and research if they were gluten-free but that's just part of the learning curve. My tip: take a printout of what isn't gluten-free AND what is. I had the "what isn't" sheet but then when something wasn't on it I got confused. Was it not on there because it is gluten-free or because the list was from a few years ago? Ex: soy lecithin wasn't on my 'do not eat list' but was on the gluten-free one. I wish I had both with me. Overall, like you, I am so happy to have a dx that is something I can control and that I am already feeling the results from!

  • 4 weeks later...
Simona19 Collaborator

I

Don't get me wrong, I am completely freaked out by the whole thing and found myself day dreaming about Perogies and Pizza.

I can help with this part: https://www.celiac.com/forums/topic/89355-gluten-free-potato-pierogi-with-sour-cream-and-roasted-onion/page__pid__769296#entry769296

Aly1 Contributor

Oh man, why did someone say pierogies. I love pierogies. I am now having a major craving!

Skylark Collaborator

Oh man, why did someone say pierogies. I love pierogies. I am now having a major craving!

Yeah, and my chance of pulling off that recipe is slim. I had enough trouble making stuff like that with gluten dough! I can just picture dough sticking to my rolling pin and the uneven dough and the tears and all the filling coming out in the pot while I boil them. :lol: :lol: :lol:


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BrittLoves2Run Apprentice

I am on day 7 of Gluten free and I haven't had ONE joint ache, almost zero nausea, or a headache in almost a week. I can hardly believe it. If i feel this decent already, I can't wait to see how I feel in a few months.

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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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