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Glutened! Who Was The Culprit?


rabbit24

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rabbit24 Newbie

udi's breads

bertolli olive oil

and nutella

The only things that I ate that could possibly be causing this sickness. Any help?


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psawyer Proficient

Welcome.

I'm sorry, but you have not given nearly enough information for me to answer.

How do you know what made you sick? How long have you been gluten-free? How severe was your villous atrophy? What else did you eat that might have caused a reaction? What WAS your reaction?

Your first post here provides no context or background, but questions three products generally accepted as gluten-free.

Please provide some more background so we can understand the context here.

Lisa Mentor

None of your listings would cause me concern. But your history would be an important road to consider.

dilettantesteph Collaborator

Some celiacs are more sensitive than others. What one eats without problems, another can't. You could go on a whole foods diet till you are better than add things one at a time to know what you can eat.

rabbit24 Newbie

Welcome.

I'm sorry, but you have not given nearly enough information for me to answer.

How do you know what made you sick? How long have you been gluten-free? How severe was your villous atrophy? What else did you eat that might have caused a reaction? What WAS your reaction?

Your first post here provides no context or background, but questions three products generally accepted as gluten-free.

Please provide some more background so we can understand the context here.

oops sorry about that psawyer, cant really think straight right now.

I don't know what made me sick, that's what i want to find out because i got sick two times in one month. To be honest im tearing up right now because i feel so sick, and so frustrated that this is happening again. I have been gluten free for about 6 months now. The doctor did not do a biopsy because of all the factors in this, long story, i did get the blood test but that along with everything else and a positive response from the gluten free diet they knew as well as i did too that this is the only thing that fits and explains all my medical problems. I was doing very well for a while and now i keep getting sick again every couple months. Now twice in a month. I swear im this close to only eating salad for the rest of my life.

Everything i have eaten:

udi's cinnamon raisin bread

udi's whole grain bread

udi's pizza crust

bertolli olive oil (every time i ate this i felt nauseas afterward)

starkist tuna in water, the blue and silver can

tazo tea, stash tea, twinings tea, and once i had this cold and flu tea but it is supposed to be gluten-free

jif peanut butter

nutella

plain rice

mccormick salt

mccormick basil

I only have gluten free pots pans toaster dishes etc so its not that either. ugh i feel like barfing.

my main problem is severe nausea, I am so queasy its unbearable. Brain fog and depression also. So basically I just feel very very ill, and brain fog, i am extremely pale and sick looking and am losing weight.

rabbit24 Newbie

Some celiacs are more sensitive than others. What one eats without problems, another can't. You could go on a whole foods diet till you are better than add things one at a time to know what you can eat.

i might have to do that. how do i do that? im so sick it seems like no matter what i try its killing me. even things tht are supposed to be safe

kareng Grand Master

oops sorry about that psawyer, cant really think straight right now.

I don't know what made me sick, that's what i want to find out because i got sick two times in one month. To be honest im tearing up right now because i feel so sick, and so frustrated that this is happening again. I have been gluten free for about 6 months now. The doctor did not do a biopsy because of all the factors in this, long story, i did get the blood test but that along with everything else and a positive response from the gluten free diet they knew as well as i did too that this is the only thing that fits and explains all my medical problems. I was doing very well for a while and now i keep getting sick again every couple months. Now twice in a month. I swear im this close to only eating salad for the rest of my life.

Everything i have eaten:

udi's cinnamon raisin bread

udi's whole grain bread

udi's pizza crust

bertolli olive oil (every time i ate this i felt nauseas afterward)

starkist tuna in water, the blue and silver can

tazo tea, stash tea, twinings tea, and once i had this cold and flu tea but it is supposed to be gluten-free

jif peanut butter

nutella

plain rice

mccormick salt

mccormick basil

I only have gluten free pots pans toaster dishes etc so its not that either. ugh i feel like barfing.

my main problem is severe nausea, I am so queasy its unbearable. Brain fog and depression also. So basically I just feel very very ill, and brain fog, i am extremely pale and sick looking and am losing weight.

There is no fruits or veggies, not much fiber. Lots of processed stuff. Even the good gluten-free stuff has a lot of sometimes, odd ingredients. What if you tried a less processed food diet. Chicken, rice, cooked veggies?


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confusedandlost Rookie
:ph34r:
dilettantesteph Collaborator

i might have to do that. how do i do that? im so sick it seems like no matter what i try its killing me. even things tht are supposed to be safe

Eat produce and unprocessed meats.

Skylark Collaborator

I see you are eating a lot of Udi's. Not everyone can tolerate that much xanthan gum.

Dairy was getting me and I thought it was hidden gluten for the longest time. I got sick after a party where I had wine, grapes, and cheese and blamed it on the wine, then on cracker crumb CC when challenged wine and it was OK. :lol: (Yes, I was in denial. I love cheese.) I am also finding that I react to tomatoes. What I thought was a reaction to shared fryer CC when I ate french fries is actually a reaction to ketsup I put on the fries.

I'd suggest starting a food/symptom diary and looking for patterns, particularly what you ate the two days before one of your reactions. Pay particularly close attention to dairy and soy.

mommida Enthusiast

From that list you have eaten eggs, soy, and nuts. 3 offerings from the top 8 allergens. Keep a food journal to see if you can track down another intolerance. Keep in mind some reactions can cause damage for 12 days. :huh:

Cathey Apprentice

Try the whole foods and leave out the processed ones. Also can tuna contains broth, was the mayo cross contaminated? You never know what is in that broth the only safe broth is the ones labeled gluten free and trust me the tuna can does not say gluten-free. Hope you find what bit you.

IrishHeart Veteran

Your diet is missing fruits, vegetables, meat, poultry, fish and nuts and eggs. :blink:

You are losing weight, hon because you are not getting enough protein!

If you are eating butter and using cheese on that pizza crust--you may have a dairy intolerance.

There is so much going on it COULD be, rather than any "suspect" product.

Eat plain foods for a week or so and see if you feel better.

This means meat, fish, vegs, fruit, nuts, eggs. No gluten-free products from packages, nothing from a can. Plain and simple.

Do you take probiotics? It might help straighten out your gut.

Just some suggestions.

eatmeat4good Enthusiast

Meat and vegetables will or should heal you.

I get nauseous from too much gluten free stuff like Udi's even if it is safe for us. I don't know if it is Xanthan gum or what. I love Udi's and keep it around for snacks and treats...but it remains just that...snacks and treats. For my main healing food I eat meat and vegetables. Some fruit and nuts for dessert. Good luck to you. I know how much it sucks to be so sick that you really don't feel like cooking and you really cannot think straight. It was bad. Fortunately everybody who said eat whole foods is right. It gets better. Make soups out of meat and veggies or chicken and veggies. If you are really nauseous and having trouble eating, puree your meat and veggies or soup and get it in that way. Raw vegetables are sometimes really hard on your digestive system until you heal. In the end I had to give up dairy and eggs too because they make me sick. You will have to find out what the culprit is, but the only way is to eat clean for a while and then test the foods you suspect. Hope you feel better soon.

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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. 
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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 
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