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Gluten free kitchen

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Gluten free kitchen Newbie

I thought that the diagnosis was the cure all, but now I know it was just the pebble that started the avalanche. I have been VERY good with my gluten free LIFESTYLE! (Otherwise, it's not pretty).

I am having problems eating out at restaurants and family/friend gatherings. I am not sure if my kitchen is ultra sterilized or if the cross contamination is not regarded, but I feel very isolated in my own home.

My friends make fun of the taste and flavor of my foods, but I have yet to get the guts to stand up for myself. I am just wondering if people have the same issues. I didn't ask for this and would never wish this isolation on anyone....

:) Teri


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dksart Apprentice

Yes.

I am so jealous whenever people post about how their husband threw out all the bread to keep a completely Gluten-free kitchen or how their kids support them.

My family thinks they are doing OK, but still make grilled cheese in my Gluten-free specific pans or use my colander because they say they will wash it and I'm just crazy for thinking that one little speck of gluten can get me. They think it's alright to wipe their toast crumbs off the counter and put that towel back on the rack.

I finally got them to stop double dipping in the butter, jam, mayo or peanut butter. They know what will make me sick, and don't want to hurt me, but sometimes they are a little lax when it comes to cc issues.

gfpaperdoll Rookie

GlutenFreeKitchen, your isolation is my heaven. I love my all gluten-free kitchen. Summon up the courage to speak up for yourself. Just take your own food with you when you go places. I did it for years before I even knew about gluten, because of all my allergies. Other people with allergies have to do this also, not just the gluten avoiders! :)

Have a topic of conversation ready & change the subject when it is directed towards your food. Really these days it should not even be a topic, what with people eating vegan, raw, no carb, no eggs, no this & no that. Most of us have a varied diet, it is just that we cannot eat fast food! & what a blessing that is!!!!

Try to start thinking of your kitchen in good terms & not put in the limitations.

YoloGx Rookie

Not to contradict, but I think going gluten free plus also having to avoid a host of other allergens does make it a lot more difficult if not almost impossible to eat out. Having an allergy to carrots does not make me react if there is a speck of carrot around if you get my drift. I could live with that and my nut allergies, fermented food intolerance, nightshade family and citrus reactions, sugar intolerance etc. Even gluten thought of as an allergy was OK. But now entirely off all gluten I react like others to the smallest trace amount like the vinegar or some invisible whatever. It makes going out to eat not fun at all unless I just alternatively bring my own.

The most difficult part is when people try to honor me. For birthdays now either I make the cake etc. or I just go do something different--though I got caught recently since my date wanted to take me out to dinner. I chose a restaurant which I thought had gluten-free food but as it turned out it wasn't gluten-free enough for me and I was miserable the next day. If I do this again I will go to some big chain known for their gluten-free dishes and still insist on talking with them thoroughly to remind them of the protocol.

The first date thing is really still pretty tricky, since even tea can be a problem if made with a server's gluteny hands. These days I plan on just bringing my thermos and hope no one really notices or cares.

Any other suggestions?

Bea

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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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