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Help! I Keep Getting Glutened! Ugh!


horsefarmer4

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horsefarmer4 Apprentice

HI GUYS, I NEED SOME HELP. I'M STILL PRETTY NEW AT THIS ANY I'VE BEEN HAVING A LITTLE TROUBLE LATELY. I DID GOOD FOR TWO MONTHS- THEN I WENT OFF FOR ABOUT TWO MONTHS AND FOR THE PAST THREE MONTHS I'VE BEEN STRUGGLING. EVERY THREE DAYS I GET GLUTENED. IS IT JUST ME OR DOES YOUR SYSTEM GET MORE SENSITIVE TO IT?

SO ANYWAYS, I NEED SOME IDEAS TO DO THE ELIMINATION DIET. I NEED A FEW VERY SAFE AND SATISFYING BUT CHEAP FOODS? THINGS I CAN LIVE ON SO I FEEL BETTER AND THEN START TO EXPLORE OTHER FOODS. :D THANKS FOR ANY HELP YOU CAN OFFER.-TINA


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Lisa Mentor

Sorry that you are having a hard time.

Start a food journal. Record everthing that you eat and that will help you find out what the culprit is. Alot of foods can be irritants because you aren't healed.

When I feel bad, I go back to the basics. Simple unprocessed foods. Meats, seafood, rice, fresh veggies, potatoes and fruit.

YoloGx Rookie
HI GUYS, I NEED SOME HELP. I'M STILL PRETTY NEW AT THIS ANY I'VE BEEN HAVING A LITTLE TROUBLE LATELY. I DID GOOD FOR TWO MONTHS- THEN I WENT OFF FOR ABOUT TWO MONTHS AND FOR THE PAST THREE MONTHS I'VE BEEN STRUGGLING. EVERY THREE DAYS I GET GLUTENED. IS IT JUST ME OR DOES YOUR SYSTEM GET MORE SENSITIVE TO IT?

SO ANYWAYS, I NEED SOME IDEAS TO DO THE ELIMINATION DIET. I NEED A FEW VERY SAFE AND SATISFYING BUT CHEAP FOODS? THINGS I CAN LIVE ON SO I FEEL BETTER AND THEN START TO EXPLORE OTHER FOODS. :D THANKS FOR ANY HELP YOU CAN OFFER.-TINA

Hi Tina,

Yes you do become more sensitive. Though its worth it since overall you feel better. I look forward when they finish devjisinga pill lthat will make eating out easier. However for at home staying off gluten should be easy. Just don't use gluten products in you animal feed!! I suggest when you do go out invest in getting a cold pack and pack your food. It may seem weird but being sick is just out of the question.

I suggest you follow more of the paleo diet--meat, vegetables including roots and squashes and some fruit and if you aren't allergic nuts and seeds.

I find eating washed cooked quinoa very good as a grain staple in the morning especially. Plus I like making teff, quinoa, amaranth pancakes with a very small bit of potato flour thrown in as a binder (mashed bananamight work too) and cooked quinoa to make it more fluffy. I use baking soda and salt with melte d butter or coconut oil. I fry them with butter since th coconut oil makes them stick.

I top them with some fat and sugar free organic yogurt and some fruit and sunflower seeds. The Ethiopians however use teff pancakes as kind of plates for most of thier meals which they then eat after. The teff really sticks with you for the day and is completely gluten free as is quinoa and amaranth. Make sure when you get various fours they are not contaminated from gluten flours.

I usually eat potato or yam or sweet potato at night for dinner as a starch. You could use baked squash however or any number of roots.

Hope this helps. From what I hear this diet would be good for almost anyone. Humans have only been eating grains at he earliest for the last 15,000 years. And its way less than that if you are a north European. So we just aren't adapted for it.

dbmamaz Explorer

I quit gluten and dairy, and felt better for a few weeks, but then still kept getting instestinal distress. I did some testing - reacted to 1/3 of the 150 food A.L.C.A.T test panel, and of the 46 foods tested at the allergist, only 10 had no reaction. He suggested I eat foods which had a +1 reaction as well as a 0 reaction, but I'm only eating them if they did NOT react on the A.L.C.A.T test.

My current diet is only 20 foods, but I am adding things back in every 3 days - its easy to see the reaction now, since I'm feeling good. I tried some chips and reacted - they were fried in canola, so now i'm avoiding that. I had some herbal tea last night, and reacted to that. I tried a b-complex this morning, and reacted to that. I would not have noticed these reactions so clearly before when I was eating so many reactive foods.

The tests arent cheap, esp the alc.at. My current safe foods are:soy, corn, potato, sweet potato, brocolli, green bean, lettuce, spinach, celery, tomato, avacado, grape, cantaloupe, Orange, Peach, black tea, Olive. I was able to add sunflower seeds. I reacted to every meat the allergist tested me for.

Its really a big task to cut down so far - i'm cooking seperately for the family. But I trust that, by the end of this, I will know exactly which foods are bothering me. I also suspect I'll never eat wheat again, even tho my celiac panel was negative, because it was a strong reaction on both of the other tests.

good luck figuring it out - a food diary is probaby easier for most people, I just couldnt remember to write down my foods.

YoloGx Rookie
I quit gluten and dairy, and felt better for a few weeks, but then still kept getting instestinal distress. I did some testing - reacted to 1/3 of the 150 food A.L.C.A.T test panel, and of the 46 foods tested at the allergist, only 10 had no reaction. He suggested I eat foods which had a +1 reaction as well as a 0 reaction, but I'm only eating them if they did NOT react on the A.L.C.A.T test.

My current diet is only 20 foods, but I am adding things back in every 3 days - its easy to see the reaction now, since I'm feeling good. I tried some chips and reacted - they were fried in canola, so now i'm avoiding that. I had some herbal tea last night, and reacted to that. I tried a b-complex this morning, and reacted to that. I would not have noticed these reactions so clearly before when I was eating so many reactive foods.

The tests arent cheap, esp the alc.at. My current safe foods are:soy, corn, potato, sweet potato, brocolli, green bean, lettuce, spinach, celery, tomato, avacado, grape, cantaloupe, Orange, Peach, black tea, Olive. I was able to add sunflower seeds. I reacted to every meat the allergist tested me for.

Its really a big task to cut down so far - i'm cooking seperately for the family. But I trust that, by the end of this, I will know exactly which foods are bothering me. I also suspect I'll never eat wheat again, even tho my celiac panel was negative, because it was a strong reaction on both of the other tests.

good luck figuring it out - a food diary is probaby easier for most people, I just couldnt remember to write down my foods.

I just wanted to add that in time your intestines will heal and its likely you will become less reactive fro the effects of likely leaky gut syndrome.

I also found I often could have something once or twice a week but not more often especially at first. Plus sometimes I found I could not eat certain things with other specific things but they were fine by themselves.

These days I discover I need to cook my fruit so I won't have an allergic reaction.

Taking herbs and or supplements and enzymes to heal the gut helps speed up the process of healing--assuming you aren't allergic to them. I have posts elsewhere that get into the specifics.

Hope this helps!

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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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