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shannonmc

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shannonmc Newbie
shannonmc
Posted

Hi Everyone! I new and over the next few weeks/months I'm going to have lots of questions--here's the story (familiar to many of you , I'm sure).

Family history of Crohn's, IBS, thyroid disease, reactive arthritis (Reiter's Syndrome), Premature Ovarian Failure, and Lupus.

I have hashimoto's and premature ovarian failure and my endcronologist asked 1.5 years ago about my bowels. When I told her about my mysterious and painful diarrhea with alternating constipation, she asked about a family history of wheat/gluten intolerance (yes). Then asked if I was irish (yes). She ordered ITG, TTG, and EMA blood work and viola, I was TTG and EMA positive.

Okay, so then I freaked out and refused the biopsy. My husband is italian and eating pasta and bread was/is really important to him plus I have three young children and I wasn't willing to change. (My husband is really nice and kept on encouraging me to get the biopsy and was convinced I was gluten intolerant LONG, LONG before I was.) So to make a long story short, and after having the biopsy canceled twice (once by me, once by the doctor) I decided to go gluten free. Familiar story--after only two weeks I felt FANTASTIC, and I mean absolutely fantastic.

My backaches are gone, my mysterious diarrhea is gone, no more pain, no more gas. I'm sleeping so wonderfully after 6 years of only 6-7 hours of sleep.

Okay, so I know I should have had the biopsy first, but now that I'm reading this forum there is this other test, right? Here's the clincher for me--my endocronologist called and said she was going to lower my meds--I don't need as much because I'm absorbing them so much better. Cool.

So here's my questions--cross contamination in my kitchen. The issues here are significant--does anyone live with non celiacs and have tips? (I don't have a toaster, so that is not an issue) What about washing and sponges--they eat pasta, I wash the dish, is the sponge now contaminated? I can't seem to get my mind around this--what good would it do to have a separate sponge if I'm washing dishes that had wheat in them? Can I still bake for the kids or would it be better to do it with a gas mask on? (Just kidding about the gas mask). I will have more questions later but thought I would start here.

Thanks in advance and I'm so glad this forum exists--you posts have been so helpful over the last few months.

-Shannon

P.S. I posted this a few minutes ago and realized that I probably posted in the wrong forum, my apologies, maybe just the question about entrolab (sp?) is approp and skip rest and I'll post the rest in the other forum. Thanks for your patience as I figure this out.

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Jodi Mills Apprentice
Jodi Mills
Posted

Hello,

I am new to the whole gluten free diet, but was diagnosed with celiac at around age 6. however i didnt stick to the diet. Now as I am retraining myself i have asked some of the same questions as you, and was told the best thing to do is to have new sponges, in your case it might be easier to label which one is for your "gluten free" dishes, that is what I have had to do in my household, my boyfriend is a gluten eater. I have my own special pot, and a special pan, that only I can use. i too do not use a toaster, although he does. spatulas, anything plasticky, should be replaced......

hope that helps!

this site is amazing, I feel great being able to pass on information that was passed on to me!

Guest Jemenii36
Guest Jemenii36
Posted

hi shannon-

I completley understand your fears and I am also concerned with cross contamination, as well. However, having been diagnosed with celiac disease almost a year ago i have been doing a lot of research. It really seems that although many people are not allergic to wheat/gluten, it has been show that is a an extremely healthy diet to follow. How about trying to make dishes gluten free without telling your family, and see what they say (if they notice). The more recipes i would like to try but can't, due to wheat/gluten in the recipe, the more i am able to find substitutions....and let me tell you, they mostly come out great! It takes a lot of trial and error but if you enjoy cooking and baking i guarentee no one will even know what you are making is gluten free! let me know if you need any suggestions or help with anything, as i am continuing to find recipes that i can alter!

-Samantha

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    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      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
      Are Lindt chocolate balls gluten free?

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      @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
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      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
      My only proof

      By knitty kitty · Posted

      @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!
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