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Gluten Challenge


annie76

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annie76 Apprentice

I'm coming up on my two year anniversary dx, I haven't been here in quite some time. Anyway, I'm doing a gluten challenge, just curious if any of you have tried this, and what were your results. I've had a ton, and I'm fine, which we all know doesn't mean squat. I think its only a matter of time...


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YoloGx Rookie

My eldest sister got inadvertently glutened staying at my mother's after being completely off gluten for over two years. She became ill with a virus as well as D. It took her one and a half months to get over it. Not saying this will happen to you, but be forewarned. I suggest you have plenty of digestive enzymes around plus pro-biotics and either marshmallow root or slippery elm to help counteract the effects.

Bea

darlindeb25 Collaborator

I have been gluten free 8 yrs last month. This last January, I was glutened by an OTC medicine. I was sick for 3 months.

Why do you want to do a challenge? Are you questioning if gluten is really the problem?

gfp Enthusiast
I have been gluten free 8 yrs last month. This last January, I was glutened by an OTC medicine. I was sick for 3 months.

Why do you want to do a challenge? Are you questioning if gluten is really the problem?

I think you hit it on the head .... Why ????

There are numerous reasonbs not to .... including provoking a rection to something or developing a condistion that is not reversible. Although these are rare it seems like rolling the dice purely for the sake of it?

NorthernElf Enthusiast

I think I understand the desire to do a gluten challenge. Wouldn't it be nice to have a piece of paper that simply states that you are celiac or cannot tolerate gluten ? To have it in black & white ?

I've been dealing with this for four years. There are many stages to acceptance. At first I was ill, had reflux, ached, was so tired & crabby, had big sinus issues, nausea, and a life long history of stomach issues. An illness triggered it all - magnified it. My doc decided I couldn't have celiacs and bungled my testing. I had a negative blood test after about a month of no gluten...my biopsy was over 3 months after that...so no positive celiac test.

HOWEVER - the proof is in the pudding, so to speak. I eat gluten, I get sick. It's that simple.

Unfortuanately, it's even worst than that. My reaction to gluten is very sensitive these days. Just one example - last month I had poached eggs in England & noted that second egg tasted vinegary. My SIL tells me they will use vinegar to keep the eggs together if they just make them in boiling water. Within half an hour I'm cramped, nauseated, and just want to go lie down. It doesn't occur to me until the next day that in England they use malt vinegar on pretty much everything. All I'm saying is - that was a totally blind test, so to speak. Whatever little bit of gluten is in whatever little bit of vinegar they used on my eggs was enough to wreck my morning. I went on holiday and lost a couple of pounds, this in England where they have quite a few gluten-free products. I'm convinced - I don't need a challenge to prove it.

I do agree it would be nice if they came up with a test like a pregnancy test that showed for sure that a person is celiac or intolerant. But as to a challenge, I couldn't handle it - and it would be murder on my intestinal tract (damage!).

annie76 Apprentice
I have been gluten free 8 yrs last month. This last January, I was glutened by an OTC medicine. I was sick for 3 months.

Why do you want to do a challenge? Are you questioning if gluten is really the problem?

Thats just it. I do have celiac disease. I was dx with an upper endoscopy, biopsy. I have been "trace" glutened about 4 or 5 times in my two years being gluten free, and now, I've done this and I'm feeling fine. Its just strange to me. I've been asked why several times so far, I just want to see what happens, I don't even miss the food that much, being gluten free is so much healthier I have no intention of going back to it. I guess I'm just oddly curious.

samcarter Contributor

If I had a definitive diagnosis, I would never want to eat gluten again. Not even out of curiousity. You don't need to do a gluten challenge for a test, so I'm not understanding this desire to make yourself sick. Or to cause damage to your body, even if you don't feel it.


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YoloGx Rookie

I suggest perhaps then you just save it for that rainy day for when somehow or other you get glutened by accident. It happens. Maybe you won't react because you have healed so much. Even the Merck Manual says celiac is insidious after all. It takes a while to develop on either end no doubt.

Bea

ShayFL Enthusiast

I just dont understand some things, because I am not that way. On a similar note, my Sis was just dx with BC in Feb. and she quit smoking cold turkey because she doenst want the cancer to come back. I was so very proud of her because she has been smoking for 30 years. And she has been feeling incredible. Losing weight. Exercising. Eating right. Getting healthy. Then 3 days ago, she tells me she had 1 cigarette at a bar with a beer just to see what it would be like again......***sigh***

Dont forget.....just like cigarettes...gluten is a drug. :(

annie76 Apprentice
I suggest perhaps then you just save it for that rainy day for when somehow or other you get glutened by accident. It happens. Maybe you won't react because you have healed so much. Even the Merck Manual says celiac is insidious after all. It takes a while to develop on either end no doubt.

Bea

Exactly, thats what I'm thinking. I remember it all started with reflux, and went downhill from there for about 2 years. I'm not going to do that again thats for sure! FYI, to you all...It wasn't all you think it would be, the cravings and missing the food that is. I think it just gets built up after years of not eating gluten. I'm done with it, after all its only food. Thank you for the friendly advice, and keeping the torches and pitchforks at bay!

ShayFL Enthusiast

We arent all angels....but we have good hearts. I just went grocery shopping......and saw the Bobboli pizza crust. I didnt eat that. But I used to make the most amazing homemade pizza. And I had a memory......***sigh***......My sourdough crust was to die for........but no more. :P

YoloGx Rookie

Yeah, similarly I was at whole food tonight and saw all the goodies they sell and felt a moment of sweet nostalgia. But I reminded myself how its a good thing I don't eat that stuff anymore. I am in much better shape than most people my age after all largely due to avoiding gluten, sugar and a variety of allergens -- as well as continuing to go for walks, do yoga etc.. Thankfully when I really get a sweet tooth I can bake myself a gluten free stevia sweetened goodie.

Bea

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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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