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6ft6

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6ft6 Newbie

Hello all,

I've been a lurker since my diagnoses 16 months ago. Was positive for blood tests and biopsy. I initially improved quickly, like many of you. But alas, the severity of the problem has greatly increased, to the point that when i get exposed (glutaminated) i usually don't know what it was. Things other people here use make me ill for two or more days. i'm fortunate to work for an accepting environment, but it has caused me severe difficulty at times.

Does anyone have a list of products that have been deemed safe, but have caused them an exposure. For me that is anything from Amy's Kitchen. But, frenches mustard, tropicana orange juice, and now on two separate occaisions, gluten free labled yoplait.

We have gone to extremes of kitchen cleanliness and habits. Changed to gluten free dog food, etc. I was out for two days this week from the yoplait incident and have a long recovery road back - big d for 48 hrs, sweats, and twitching. still have the sweats, but the twitching is subsiding. pain in my feet is back to tolerable.

I've gone to see a celiac specialist. they are referring to a nutritionist and ordered a colonoscopy. I have even had to have the pharmacist clean the sorting tray because i was getting a reaction from my BP pills.

How do you others cope with this. If i new i was taking a risk, i'd understand. but this comes out of nowhere and i'm donw for the count.

Any advice would be graciously appreciated.

Thanks,

Michael


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Swimmr Contributor

Before starting my elimination diet, I was eating yoplait EVERY day and never had any problems (to my knowledge). In other words, I didn't start my elimination diet with suspicion that it was the yoplait giving me issues.

I can't help, sorry...just figured I'd add that I am relatively ok with yoplait.

YoloGx Rookie

My boyfriend and I have had similar problems. How we resolved it is to make our food from scratch. It actually is a lot cheaper and in the long run, it takes less time since this way we don't get sick from cross contamination as well as other issues with mass produced food that might not be quite right for us.

In addition, we avoided all grains for 10 months following a kind of combined paleo or cave man diet modified by the 24 hour yogurt from the specific carbohydrate diet. This has helped our villi heal a great deal and it now appears we are ready to expand our diet a little though we are still sensitive to sugar and unfortunately honey and nuts as well as the nightshade family (potatoes/tomatoes/peppers).

I am now creating my own diet--which I call "back to basics"--and am doing so on a thread here. Basically its the same diet I have been eating except that now I have added brown rice (I cook myself). My diet is now less focused on meat however and more on vegetables with now the addition of the rice. Soon I plan to add in the occasional baked goods I also cook myself--made without sugar but instead using stevia for sweetener.

Both of us really love the 24 hour yogurt since we seem to have a certain amount of lactose intolerance. It also has a lot more pro-biotics in it than a regular 7 hour yogurt and thus it feels really good to eat it.

Hope this helps. I don't know if you are willing to make the effort we have had to, however even if you simply do things like eat more vegetables that will help. However I have seen it here over and over that if you are sensitive its best to not use processed, bleached etc. foods and get away from the sugar...

Bea

Ahorsesoul Enthusiast

It is common for dairy and soy to bother people with celiac disease until their intestines have healed.

With dairy it could be a lactose problem. Some people even after healing can not tolerate the lactose in dairy. Some people can eat cheese but not drink milk.

A food and 'how your feel' journal should help you see a pattern. It could be something that you least expect. Log everything that you eat or use on your body for the next two weeks. If you work with items that might contain gluten log them too. Could even be that you've kissed someone who just ate something with gluten. Some people find they do react from something so little.

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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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