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Where Does Gluten Hide


hermit41

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hermit41 Newbie

I have been reading the posts on this forum for some time but only recently decided to join. I was diagnosed with "probable" DH by skin biopsy about 2 years ago and with Celiac Disease a bit over a year ago by blood test. At that time I went on what I hoped would be a Gluten Free Diet, and to a large extent it has worked. At least I have had considerable improvement in the operation of my bowels, movements, bloating, etc.; and have had long periods of remission from the DH blisters. About 6 and 4 months ago I had upper GI scopes and no evidence of Celiac Sprue was found. Still I don't know if this was because I had actually healed because I immediately went for a gluten free regimen after the blood test diagnosis, or what.

At any rate, my problem is that despite what my wife and I think is a robust vigilance routine, I continue to get outcroppings of DH blisters that I cannot attribute to anything I ate at home, visits to restaurants or inattention to the allergen details on food packages. These can last for a month and then clear up for a month following the same routine.

I have been suspicious of everything and most recently some of the left over Easter candy specifically Hershey's Candy Coated Milk Chocolate Eggs. I have heard that some food colorings have gluten in them. But the allergen information on the packages indicates otherwise. I have put my trust in the allergen information on the packages.. but something keeps biting me. Does anyone have similar experiences or knowlege of what addidtives might contain gluten and still escape being noted on the allergen information.

Cheers,

Craig


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magpie Newbie

sounds like you and I are paddling the same boat , for about the same amount of time, I dont know the answer but maby thee'se few things will help I hope so . I thought that all red meat was safe icon8.gif it's not per wegmans a few weeks ago , if any meat products are cut up instore they have been CC this includes cut up chicken , pork , turkey ect, ect , so ask your meat dept about there good's , it really is about starting from scratch if anyone isl living in your home that is eating gluten you do need to have all your own gluten-free pot's , silverware , toaster , you know the list and check out everything , gluten can hide in the toothpaste , shampoo , meds , again ect , ect and you need to ask your-self if going out to eat is worth the break out , it does not matter that you are eating gluten-free at the resturant it's the bloody resturant thats one big break out waiting to happenicon12.gifpardon me lol but really next time your in a resturant just watch , from the cleaning of the table your sitting at to the person that is serving your meal they are not washing there hand's after everything they touch , and thats just what you can see , it's just not worth it to me ,thats just my oppion . but any way I hope this helps even a little cheers

ang1e0251 Contributor

Sounds like you are having a problem with Sneaky Gluten. It can hide in the craziest places! Recently another poster reported that many frozen chicken pieces are coated with gluten containing broth before freezing. Also I avoid items with "Natural Flavors". This might not always be necesary but unless you call the company you don't know if gluten is one of those natural ingredients. Lots of pet food has gluten. It can also be in the additives that are used to round out supplement or in the coatings.

When you eat in restaurants, you just can't know about CC. It's a crap shoot.

It might help you to keep a food and symptom journal for awhile. It could help pin down a pattern that's not so easy to nail down.

one more mile Contributor

in my house it hides on the counter tops. My food never touches the counter now. There is no 5 second rule for us!

I agree with what the first poster said. Get back to basics and slowly add food. I add things one at a time. If trying something new I take one bite and wait about 15 minutes. I would much rather have to heat up a new food then spend a few days in the bathroom. I have even done this when dinning out and had waitress's come over and ask me if the food was ok. My friend teases me that I should send a food tester ahead of me.

Another hiding place is in spices that are added to processed food. One place I called said that they can not promise that their vendors are gluten free. and what may be gluten-free one time may not be in a few months.

You are not actually walking in to a dunken doughnuts are you? Just the flour in the air in them makes me itchy.

When you figure it out please let us all know.

irish daveyboy Community Regular

Hi,

Here's a link to something I posted long ago on another thread but on the same theme.

.

Hidden Gluten

.

Best Regards,

David

.

SGWhiskers Collaborator

My sneaky gluten sources:

Hand soap where I work. (darn Vitamin E)

Grocery store (can't go in anymore)

My rice maker (don't ask me how)

Eating with my fingers (spoons for finger food now).

Bird food

The BBQ

Anytime someone else helps with my food.

My favorite tortilla chips (CC?)

Lisa Mentor

Open Original Shared Link

Here is a list of companies who will clearly list ALL forms of gluten. Hershey is not one of them. :angry:


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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. 
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      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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