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Gluten Free Poll

twe0708

By twe0708
in Coping with Celiac Disease

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Roda Rising Star
Roda
Posted
How many years have you been trying to live a gluten-free life?

How often or many times do you think you've been hit with wheat?

Anyone been diagnosed with cancer, kidney or liver problems?

Have you ever said "what the hell" and just ate something you aren't supposed to?

What is your age?

One year

Wheat in particular at least once. I ate an otherwise gluten free macaroon that a friend of mine placed on top of a brownie. It was only a month after I went gluten free and she tried really hard and I ate it so I would not hurt her feelings. Won't do that again. I have been hit with either cc or barly malt in "natural flavors" once by not verifying. I tried gluten free oats after 7 months gluten free in some cookies I made. I had a horrible reaction from them so I am even gluten free oats free.

No.

Sort of. My husband had some cheese that had beer in it. I took a very small nibble. I did not have any problem from it, but really decided that the cheese was not good! :lol: I ate some tortillia chips from a local mexican restraunt that someone had left over at work. They were more than likely fried in contaminated oil and who knows if they had wheat in them. Learned my lesson because the chips gave me wicked heartburn.

I am 36 years old.

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Switch2GF Rookie
Switch2GF
Posted

How many years have you been trying to live a gluten-free life?

Diagnosed 5 years ago- officially gluten-free for 1 year. Had solid spurts of gluten-free during those first years, but always eventually relapsed.

How often or many times do you think you've been hit with wheat?

I'd say once every month or two I accidentally am glutened, almost always when out to eat. Honestly, if you eat out, it is going to happen whether you know it or not.

Anyone been diagnosed with cancer, kidney or liver problems?

Nothing yet, thankfully!

Have you ever said "what the hell" and just ate something you aren't supposed to?

Once in the past year... avoiding an awkward situation(long story).

What is your age?

Male - 25

(Just had to put male, since I am finding I am in the far minority in the active gluten free online community :D )

Karrin Rookie
Karrin
Posted

How many years have you been trying to live a gluten-free life? Started June 2009

How often or many times do you think you've been hit with wheat? Probably once a month in small cc'd doses.

Anyone been diagnosed with cancer, kidney or liver problems? Just got over a kidney infection.

Have you ever said "what the hell" and just ate something you aren't supposed to?

Yes, homemade pumpkin custard that I suspected might have been cc'd.

What is your age?

27

foodiegurl Collaborator
foodiegurl
Posted

How many years have you been trying to live a gluten-free life?

Since March 2009

How often or many times do you think you've been hit with wheat?

three time, I believe

Anyone been diagnosed with cancer, kidney or liver problems?

I had severe-pre-eclampsia and HELLP when I was pg (pre-diagnosis), and it effected my liver and kidneys while pg, but corrected itself after delivery.

Have you ever said "what the hell" and just ate something you aren't supposed to?

No way!!

What is your age?

37

jenngolightly Contributor
jenngolightly
Posted

How many years have you been trying to live a gluten-free life?

2

How often or many times do you think you've been hit with wheat?

Too many - we don't eat out anymore... uh, well, except last weekend when we went to Boston Market and YES I got glutened dammit.

Anyone been diagnosed with cancer, kidney or liver problems?

No (but yes to osteoporosis and neurological issues and...)

Have you ever said "what the hell" and just ate something you aren't supposed to?

Never

What is your age?

39

gettinbetterbaby Newbie
gettinbetterbaby
Posted

How many years have you been trying to live a gluten-free life? One year and a couple of months.

How often or many times do you think you've been hit with wheat?

Maybe 10 or more times since the start. The learning curve was steep, and so it happens less often now, but still way too often (always when eating out). The longest I've felt well is 23 days in a row, which was phenomenal. Before that it was nine days.

Anyone been diagnosed with cancer, kidney or liver problems?

Two or three years before becoming gluten-free I was sent to a kidney doctor (nephrologist), for odd blood work; I was "dumping" potassium, magnesium and salt. He couldn't determine the cause, wondered if I was vomiting or taking laxatives: No. Weeks later, after consultation with colleagues, he diagnosed Gitelman Syndrome or Bartel's Syndrome, which is just a collection of symptoms. He was puzzled. I was too. I had mentioned stomach aches too, as I have over the past twenty years to all doctors with whom I've had contact. That led nowhere as always. So I treated the deficiency with magnesium supplements and noticed unexpectedly my stomach felt better for awhile, which was a bonus. I eventually put all this together myself, later, with much help from all of you on this forum who I'd like to thank here. I have learned so much.

Have you ever said "what the hell" and just ate something you aren't supposed to?

Never, but I've eaten around things I'm not supposed to eat, that was touching, and have most recently learned not to do this.

What is your age?

44

luvs2eat Collaborator
luvs2eat
Posted

How many years have you been trying to live a gluten-free life?

7 years

How often or many times do you think you've been hit with wheat?

In the beginning, when I thought I was being gluten-free, but was making tons of mistake... lots. Now... maybe once or twice a year??

Anyone been diagnosed with cancer, kidney or liver problems?

Nope

Have you ever said "what the hell" and just ate something you aren't supposed to?

ONCE... when I'd been gluten-free for about a year, I scarfed down a huge slice of homemade bread w/ butter and nothing happened!! I had this idea that I could "plan" a cheat... maybe monthly. But... the longer I was gluten-free, the more sensitive I became and now I would NEVER, EVER say "what the hell"... EVER.

What is your age? 56. Two of my 3 daughters have been diagnosed too.

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spicenator3000 Apprentice
spicenator3000
Posted

Trying to live a gluten free life for 5 years, had it since childhood and didn't know (lived with pain/problems).

Some how I get gluten about every month now, getting the diet and other products under control takes a long long time. Takes me about two weeks to get back to normal digestion (if I do my procedure of recovery).

Diagnosed with cancer at age 20-Non-Hodgkin's Lymphoma (about the size of a grapefruit in between my heart and lung-acted like heart attack symptoms). Also had malnutrition problems from childhood still lingering, cysts, and minor issues that come and go. Family has had many cases of cancer, liver disease, kidney, reproductive and neurological issues. Seems that those people before me had celiac disease and never were diagnosed. This leads me to believe it gets worse every generation that is not taken care of.

Absolutely have just ate stuff I wasn't sure was gluten-free. Typical human nature to rebel against what I know is right and wrong.

I am now 25, will be 26 in 3 months. So 6 years cancer free.

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      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
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @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
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      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
      My only proof

      By knitty kitty · Posted

      @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
      My only proof

      By Jmartes71 · Posted

      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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