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The Grocery Store


pipermarau

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pipermarau Rookie

My gluten problem is on the extreme side, so much that I wince at shaking a stranger's hand or using a public pen.  I'm just curious if anyone has had issues with walking past the Bakery corner while shopping for groceries.  One of my stores has all the fruit and veggies right next to the bakery, so I have to rinse the food 'just in case'.  Some days I think just smelling the cookies and donuts gets my symptoms flaring.  I've learned to shop after they close the kitchen down but some days I have to go before 5pm and that is when I seem to be randomly glutened.  

 

If anyone else out there feels like a constant victim, you are not alone.  I wish it was as easy as reading labels for me but hugging my friends can get me sick :(  When I go out in public I touch nothing unless I have to buy it, and then when I get home I change clothes.  We all have to be extra careful so I just want to send a virtual hug to everyone, especially if they are feeling like their house is the only safe place left.


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LauraTX Rising Star

Hi Piper,

I move this topic and your pet food topic to our super sensitive celiac section since the experience of being glutened from the sources you talk about are atypical for most people with Celiac.  That way people know where you are coming from and can reply accordingly.   Feel free to post things there so you can get the answers you need.

 

Do you have a wheat allergy as well as Celiac disease?  The things you describe, like hugging gluten eaters... I have not heard of any seuper sensitive Celiac even experiencing those.  Do you struggle with anxiety about gluten? 

BlessedMommy Rising Star

Have you considered avoiding grocery shopping altogether? In this day and age, we have technological advances that allow us to bypass grocery stores if we want to.

 

I get fresh produce and eggs from farms. (I have an organic farm that allows you to pre-order whatever fruit and veggies you want and pick it up on a weekly basis)

 

As far as non-perishables, I get them from Amazon and Vitacost. People who eat meat and drink milk can also source them from farms.

 

I'm not super sensitive, but I like the convenience of having things dropped at my door. Plus, it's easier to avoid buying stuff that I don't need! 

MycasMommy Enthusiast

I don't worry about hugging, but I DO wash the fruits and veggies for that reason.  My new grocery store here in Seattle is great. The Bakery is on the opposite side of the store than the produce.  In Hawaii, they we next to each other and I know I have gotten sick once or twice from that. If I walk down the bread aisle or stand in the bakery of the store, I DO smell the smell that I know I will get sick from. I have not gotten sick from it. At least not noticeably, but I would not be surprised that if I stood there for a while, that I did.  I did not realize this was a super sensitive thing. I have considered wearing a facemask to the grocery store in the past but I never did. If I ever get sick from standing in the bakery, I will though!

Shell156 Apprentice

I've never gotten sick from just hugging someone, but I have gotten sick from hugging someone and getting their hair in my mouth! I guess I hug a lot and I wouldn't have thought anything of it but after a few times I was researching and hair products have terrible amounts of gluten in them. Boo. I am super super sensitive. Most people would never have to consider such a thing but I'm just sharing my experience so you can feel less alone.

  • 3 weeks later...
pipermarau Rookie

this is a reply to All:

 

Thank you for moving the thread to a place where it will be read by other sensitive patients.  I certainly do have anxiety about glutens since my near diagnosis.  the Drs do not know if I have celiac, allergies, or a crazy form of IBS that reacts to glutens.  Before making it to the Dr I screwed up their celiac test by going on the diet three months before they could scope me.  It was a choice of life or death at the time and I chose to live long enough to get the tests.  I wish I had known you needed to still be on wheat to get a "good" result for celiac but I was 82lbs and dropping.  When they allergy tested me nothing came up.  NOTHING.  We found it strange since I do have a bad skin reaction to wheat and latex products.  The blood test was never redone and I've almost given up on asking for a scratch test or the second type of allergy markers test.  I forgot what it is called but insurance companies don't like to pay out for that test since "so few" people need it.  I also did not test positive for any genetic marker in my blood.  Like the allergy markers, there might be more than one way to test blood for celiac but I'm not sure if it has been looked in to.  The Drs diagnosed me with severe intolerance, one wrote the word Celiac down, and another claimed IBS until I stopped seeing him.  The GMO Wheat strand theory has not been tested.  I might be one of the patients that can eat the Natural wheat grain that existed before the government "enhanced it" to make it easier to grow in large crops.  I have similar problems with Corn that is not what I consider to be natural.  

 

The only thing we know for sure is that I get very bad and sometimes instant reactions by skin and through my digestive tract with wheat containing foods.

 

The hugs and handshakes are only dangerous when I'm around small children (cookie hands..) and people that have recently eaten/cooked and smudged food residue on their shirts.  Most of my friends warn me so we do the fist bump thing when they are not safe.  My new therapist did the fist bump with me when we met.  He also offered me hand sanitizer after the session.  I'm putting him on the list of Good Drs.

 

The bakery is likely in my imagination, but when the flour is flying in the air the danger can be very real.  I need to try Farmer's Markets but I admit being anxious to new things.  A former therapist suggested I find a nice old family with a big yard and ask them if I can garden some veggies in the proper seasons if I share the bounty.  A lot of people in my area have land so that can work out, if I make the right connection.  My mom had a farm life as a kid so when she had her own land she started growing food and spices.  My dad's father also kept a similar garden on his land.  I'll be 30 this year so maybe it can mark a new chapter of my life.

 

In all my hindsight it seems my issues are mostly with GMO foods.  When I avoid them my body does better and I put weight on.  Celaic.com is the only place that seems to be able to help me with my diet change since it began with Wheat nearly killing me.  Most of my food has been "Organic" since the switch to a gluten free life and I am only now noticing the other safe grains are also GMO if I read the labels closely.  I am going to all foods Non-GMO, cage free, and as free from a factory as it can all get.  Sometimes it feels extreme but when I get sick for no reason after eating a simple gmo snack chip I feel like it isn't just me in my head taking things too seriously.

 

Shampoo and other products are not very good to me.  I've been using Dr Bronner's All in 1 soaps, Kiss My Face, and Tom's of Maine to get by.  If I color my hair I have to find "regular" shampoo or the other soaps kill the dye.  When the dye fades I have to go back to Kiss my face soap for shampoo or my hair goes crazy.  It it like the chemicals feed off one another when the dye is there.  

 

3+ years Gluten free and still just as confused as I was the day I switched.

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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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