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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Bad Is Cheating On The Gluten Free Diet Periodically
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59 posts in this topic

Many doctors I've seen in my time seem to think it's ok for celiacs to cheat on the gluten free diet. Some say once every few months and others say once every year or couple of years.

How long would it take to heal? I've heard it's around 3-4 weeks from a single 5 gram dose of gluten.

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How often is it Ok to eat rat poison? Would you believe some experts over some doctors that do not know anything about Celiac? These are just two. There are more you can google.

Celiac info

http://www.cureceliacdisease.org/living-with-celiac/guide/treatment

The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten

Q: Is it ok if I ingest some gluten if I do not experience any symptoms?

No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis.E

N.

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Geez....those "doctors" don't know what they're talking about!! They are most definitely NOT experts, and you shouldn't listen to them.

I'm a perfect example of why you should never, ever ingest gluten. I, too, thought it might be okay to cheat occasionally, and I even read an article that said that after the small intestine heals, some people could actually eat gluten again. Was I wrong!! I cheated a few times by eating pizza...and after the third time, I became unable to absorb iron and had to have weekly intravenous infusions of iron. My boss wasn't too happy that I had to have a three-hour lunch every week in order to receive the infusions, and I had to use my vacation time. Eventually, I was diagnosed with cancer and the chemo miraculously healed my small intestine so that I no longer needed iron infusions (but no one wants to go through chemo, believe me).

A few years later, I accidentally ingested some gluten, and I ended up suffering from malabsorption of Manganese and Zinc so that my tendons and ligaments became floppy. As a result, both of my feet fractured a week apart. It took me eight months to figure out which nutrients I wasn't absorbing, and I spent that time limping around with a walking boot on the foot that hurt the most.

So, if you think you'd like to end up like me, sure, go ahead and cheat. Once the gluten is out of your body for a while, your immune system becomes strong again and reacts violently to the smallest ingestion of gluten. Want to test this concept? Believe me, you don't want to go there!

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Geez....those "doctors" don't know what they're talking about!! They are most definitely NOT experts, and you shouldn't listen to them.

I'm a perfect example of why you should never, ever ingest gluten. I, too, thought it might be okay to cheat occasionally, and I even read an article that said that after the small intestine heals, some people could actually eat gluten again. Was I wrong!! I cheated a few times by eating pizza...and after the third time, I became unable to absorb iron and had to have weekly intravenous infusions of iron. My boss wasn't too happy that I had to have a three-hour lunch every week in order to receive the infusions, and I had to use my vacation time. Eventually, I was diagnosed with cancer and the chemo miraculously healed my small intestine so that I no longer needed iron infusions (but no one wants to go through chemo, believe me).

A few years later, I accidentally ingested some gluten, and I ended up suffering from malabsorption of Manganese and Zinc so that my tendons and ligaments became floppy. As a result, both of my feet fractured a week apart. It took me eight months to figure out which nutrients I wasn't absorbing, and I spent that time limping around with a walking boot on the foot that hurt the most.

So, if you think you'd like to end up like me, sure, go ahead and cheat. Once the gluten is out of your body for a while, your immune system becomes strong again and reacts violently to the smallest ingestion of gluten. Want to test this concept? Believe me, you don't want to go there!

Was that just from a couple of gluten ingestions or were you keeping on eating gluten periodically while you had the infusions? (or was it just those three times?)

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It was just those few times. My body goes completely crazy if I accidentally ingest the smallest quantity of gluten now. One of my feet will never be the same, so even though I was a lifelong runner, running is no longer something I can enjoy.

Plenty of people on this forum can attest to how sick gluten makes them now that they've been gluten free for a while. Our bodies react as though it's the worst poison possible. When I cheated by eating the pizza, I really didn't have much of a physical reaction (I didn't feel sick or anything), but when my ferritin level bottomed out and I couldn't get it to increase no matter how much I supplemented with iron, I knew I was in trouble...and I knew why. I was extremely strict with my diet thereafter, but now even the slightest gluten contamination causes havoc with my body. I get a migraine, my eyes swell up, my nose gets stuffed up, I get a low-grade fever, my joints hurt terribly, I get awful diarrhea for three days, and I get foggy brained. It feels a lot like a very bad flu. Afterwards, I worry about which part of my small intestine got destroyed...and I wait for the fallout. Please don't consider cheating for even one minute. I know it's tempting, but it's so not worth it.

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Ugh! It's not like a weight loss diet. That's like the Dr. who said I needed to give my kid with food allergies a break and let her be a kid for two weeks on a vacation with her dad. I was like... Let her get sick for two weeks? She doesn't WANT to get sick! Some Drs. are clueless.

Yes at some point you will screw up and eat some wheat or something. You either won't read a label correctly or will get it through cross contamination or from eating something prepared by a well meaning but clueless person. But in my mind there is no need to do it on purpose.

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As much as I would love to disagree, they are right. I still have not 100% committed to permanent gluten-free. I get better and then relapse. It really is not worth it just in the symptoms you feel. Even worse for the issues you do not feel that will affect your life later.

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I don't think anybody on this forum is going to say cheating is ever okay. To me it's just not worth it because the symptoms are so severe. I sometimes wonder if I were symptomless if I'd have the discipline to be as vigilant. I would hope so just because I know how dangerous all that gluten is.

Plus, even with being super super careful, I feel like just going out into the world and eating at a restaurant, or grabbing fruit at a buffet table probably is zapping me a few times a year, so I'm not going to knowingly do it to myself.

Once you get your mind completely around this, and get into your gluten free routine, it's not so terrible. (Although I'm getting ready to get on a plane and mapping out my food for the flight and in case of emergency food...and well, sometimes it's a hassle. But I don't want to be sick on vacation)

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Physically your villi might be able to recover quickly from a glutening, say a couple of weeks. Maybe for your body it will take a couple of months. Maybe if you cheat once only half your intestine or something will react poorly, not all of it. So what, a couple of months with poorer food digestion, so what? You've probably lived with poor digestion for years.

The thing is, even if your body has a lighter reaction that someone else's, or if your villi heal quickly, or if your intestines make giant gaps to absorb everything and anything so that you won't be as nutrient deficient while your villi are damaged, FIRSTLY, you just don't know. Rather, you KNOW it will damage you, but you don't know how long it will take your body to heal and if your body can cope properly while it heals. Maybe it would be OK in the long run, but is it worth the risk? Rosetapper's story should be enough to scare the bejeebuz out of you to ever purposefully cheat on your diet! (it does to me) AND she was one of those people who didn't really even notice when she was eating pizza, not someone who feels like they're dying an hour after ingesting gluten. I feel you Rosetapper, and for me your story doesn't fall on deaf ears.

SECONDLY, you ARE going to ingest gluten at some point. It doesn't matter how careful you are, you will screw up or someone else will screw up for you. The doctor who says once a year is alright is basically telling you that you can only screw up ONCE A YEAR, not purposefully eat a bagel once a year. What I'm trying to say is that even if the doctor's right, you still can't ever purposefully eat gluten and expect to stay healthy, because you will ingest it at some point or another, (probably closer to the once a month mark than the once a year mark too), whether you know it or not.

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Something else those ignorant doctors are discounting: the fact that every time you even accidentally ingest gluten, you are triggerring an auto-immune response. Continue doing so and one of those times you will trigger the start of another auto-immune disease, one that can NOT be controlled completely with diet. So, if you want to develop Multiple Sclerosis, Sjorens Syndrome, Lupus, Type 1 Diabetes, Hashimotos....the list goes on and on.....then by all means, indulge. I know it is difficult to get your head around the fact of a lifelong diet in the beginning. It IS an inconvenience and it sucks. But that is the straw we drew. People with cancer or any of the other horrible diseases one can develop don't get to choose how their life will change either. They have to accept it. And you do too.

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if you have celiac, you can't have gluten. the end.

even if i accidentally ingest gluten, from who knows where because i am very careful, it takes weeks for my whole body to recover. from the joint pain, irritability, headache, extreme fatigue, etc, not to mention the severe reaction from my intestines, loss of appetite, hair loss, rash, IMMEDIATE weight loss, etc. and it's so depressing, too. i am still weak and puny from a 'mystery glutening' almost 2 weeks ago...

i will never purposely ingest gluten. i don't have time for it.

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I am with Karen and notme!

I view gluten as poison and a trace glutening sets me back for weeks.

This disease almost killed me.

It certainly killed my Dad. He was unDXED and suffered horrid gastro symptoms, h. pylori, ulcers, anemia requiring blood transfusions for 8 years, a heart valve transplant and kidney disease requiring dialysis. If only we had known; this simple gluten-free diet may have helped spare him some of that misery.

I lost 3 years of my life to this thing. Why would I purposefully ingest gluten and go back there?

Some celiacs go ahead and cheat and incur damage.

For what? wheat bread? what's the big deal?

You are the one that has to live with the consequences.

At some point, a celiac has to decided this "is what it is" and learn to cook and bake yummy gluten-free foods and get over it.

There are WORSE diseases we could have --and they can be yours if you mess with gluten. Read about lymphoma, diabetes, kidney disease, and heart disease, etc. and their association with untreated celiac disease. (meaning NOT adhering to the gluten-free diet)

Why would anyone screw around with that?

It's the hand we were dealt. Play it.

Stop negotiating and bargaining "how much will be okay".

The answer is NONE.

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My dad died of leukemia, I'm pretty sure due to undiagnosed Celiac. Were I symptomless, that would be enough to keep me on the straight and narrow.

My grandmother's sister, my mother's sister, my mother's father, my mother's cousin, my best friend's father, and my father all died of cancer. With all of that I have learned exactly how much doctors DON'T know. The best information you can get is from people who have long experience with something, and that's the people here. There is no safe gluten, and any doctor that says there is ought to be reported to Quackwatch.

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My grandmother died of cancer that may have been related to undiagnosed celiac. After a seven year battle she died. The last year of her life she pooped in a bag, weighed less than 100 pounds and kept loosing weight and was in constant pain. She died weighing less than 50 pounds in unimaginable pain. I really have no desire to die in pain with a poop sack.

My great grandmother fell when she was 80 and broke her hip. Maybe she was just old, maybe she had celiac related osteoporosis. I really don't feel like breaking any bones, certainly not a hip.

I met my husband and his family just in time to watch his sweet grandmother slowly slip away to dementia. Day by day a little more of her gone. During her good moments, terrified, knowing what was happening to her. She had many other symptoms of undiagnosed celiac. I don't want to slowly slip away, knowing it's happening and helpless to do anything, knowing I'll eventually be nothing but a burden to my family, unable to even recognize them.

My husband's mother has a type of cancer that can be related to celiac. It hasn't spread yet, but it will. Her hair is relatively short, it hides well how thin it gets when she goes back for chemo and it isn't awkward growing back. She spends weeks at a time barely able to do more than go to chemo when she gets the bad news. Again. This happens every few years. She knows that eventually the cancer will claim her, the doctors will say that this time nothing will help and to simply enjoy what time she has left. She lives on borrowed time, I don't want to.

Lots of people have shared what untreated celiac does. The only treatment for celiac is a gluten free diet, so when you cheat you are opening yourself to all of the possibilities of untreated, undiagnosed celiac. Every time you eat gluten on purpose you are playing Russian roulette. A slice of pizza can literally kill you. Not the day you eat it, but in much more horrific and unbearable ways. Think about it, is dying worth it?

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Hi ICM,

Welcome to the site! You sure picked a popular question for this thread! :) I'm sure you got the idea by now that people are against the whole cheat a little thinking of your doctors. There is a reason for that, or maybe quite a few actually.

Here is a post from a few years ago that seems relevant. My younger brother had a colostomy for a while so I know it is not so much fun. BackTalk doesn't visit often but did share her story as a warning.

Falling off the gluten-free wagon Post #37

Here is something to consider. IT WILL KILL YOU! I was gluten-free for almost 3 years. It was a struggle and it wasn't easy. I had had enough. I hauled my butt to Mc Donald's, ordered a quarter pounder and never looked back. It made me feel like crap but I stayed with it and got to the point where it didn't bother me. I went for another year and a half eating anything I wanted. About 4 months ago I started getting stomach cramps but was able to blow it off for a few weeks. I ended up on the floor of a pizza place with such bad cramps I was out of my mind with the pain. I was taken to the hospital, and thank God, just in time. My intestine perforated and blew out. They took out 2 feet of destroyed intestine. I am now the proud owner of a Colostomy. If you don't know what that is, look it up. Long story short, I poop in a bag now that is attached to my stomach. Again only by the grace of God mine can be reversed and I can be put back together in a few more months.I haven't posted on this forum in a long time but your post got to me. If you were told you need to go gluten-free, you better do it. If a bowl of cereal is worth having, keep eating it. You will enjoy the bag on your side when it gets bad enough. But what the heck, it may take years.Jess

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Then again, when I was young and used to smoke, people could show me a black lung and I would still think "Oh that won't happen to me!"

Scare tactics may not work for people.

We could tell stories all day long, but will it have any effect?

In the end, if you cheat with gluten, you're risking further health problems.

It's just that simple.

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Something else those ignorant doctors are discounting: the fact that every time you even accidentally ingest gluten, you are triggerring an auto-immune response. Continue doing so and one of those times you will trigger the start of another auto-immune disease, one that can NOT be controlled completely with diet. So, if you want to develop Multiple Sclerosis, Sjorens Syndrome, Lupus, Type 1 Diabetes, Hashimotos....the list goes on and on.....then by all means, indulge. I know it is difficult to get your head around the fact of a lifelong diet in the beginning. It IS an inconvenience and it sucks. But that is the straw we drew. People with cancer or any of the other horrible diseases one can develop don't get to choose how their life will change either. They have to accept it. And you do too.

I totally agree with MitziG. I was diagnosed with celiac disease at 38 years old, long enough for my celiac disease to trigger the start of another auto-immune disorder that I was just diagnosed with, Meniere's disease. For me, having celiac disease is a walk in a park on a sunny day compared to my Meniere's. I wish my celiac disease had been diagnosed MUCH earlier, if only to save me from developing another auto-immune disorder.

Cheating is NOT worth it.

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Welcome to the site! You sure picked a popular question for this thread! :) I'm sure you got the idea by now that people are against the whole cheat a little thinking of your doctors. There is a reason for that, or maybe quite a few actually.

IMHO the big problem is that it is hard to find scientific data on the net for what happens when one is occasionally glutened. Why we feel so ill from a small dose of gluten, while before we didn't feel that ill when consuming gluten regularly. Is feeling ill from being glutened a measure for the damage done?

It took years for most celiacs to get diagnosed, so it feels like it took years to get to a point that the villi were destroyed enough to be diagnosed.

Also, when already gluten free, to be diagnosed one must undergo a severe gluten challenge for many weeks and still risks a false negative.

I guess I'm not the only one wondering how much damage an occasional glutening really does.

Not that I plan or want to cheat, I'm very happy without gluten, but just wonder. Would be nice to find a scientific, non-emotional answer to this question.

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IMHO the big problem is that it is hard to find scientific data on the net for what happens when one is occasionally glutened.

Actually, there are MANY studies of people on a gluten-free diet for years who still have villous atrophy (or refractory sprue) upon repeat biopsy.

here is just one:

http://www.celiac.com/articles/710/1/Refractory-Sprue-by-Michelle-Melin-Rogovin-University-of-Chicago-Celiac-Disease-Program/Page1.html

"In a recent study of patients with "unresponsive" celiac disease, Dr. Joseph Murray and his colleagues found that of 49 patients evaluated, only nine actually had refractory sprue—25 were found to have gluten contamination in their diets.

How can I reduce the chances of developing refractory sprue?

Researchers agree that most cases of refractory sprue develop in people who were diagnosed very late in life or who didnt follow the diet completely. Note that it doesn't matter how much gluten was consumed in these patients, they still developed refractory sprue."

The patients in these studies insist they adhere to the diet, but does this mean then that they are cheating occassionally or more likely, being glutened accidentally? --something ALL of us are likely to have happen many times throughout our lives.

Our point is, it's bad enough we get trace glutened all the time (despite our best efforts) but it is unwise to ADD to the problem by purposefully ingesting it.

That is just reckless, IMHO.

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Then again, when I was young and used to smoke, people could show me a black lung and I would still think "Oh that won't happen to me!"

Scare tactics may not work for people.

We could tell stories all day long, but will it have any effect?

In the end, if you cheat with gluten, you're risking further health problems.

It's just that simple.

I used to be a smoker too. I was lucky to be able to share some insight at a recent meeting focused on dealing with having a family member who is an addict. (of any sort) I remember pointing out that at the time that I was smoking, nothing else mattered. I knew it was bad for me, I knew I might die, I knew all the horrid things that could happen before I died. What mattered was when the next time was I could light up.

Sound stupid? It isn't any more stupid than having celiac and eating gluten. Both are bad for you, can kill you and will make you horribly sick before you die.

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Then again, when I was young and used to smoke, people could show me a black lung and I would still think "Oh that won't happen to me!"

Scare tactics may not work for people.

We could tell stories all day long, but will it have any effect?

In the end, if you cheat with gluten, you're risking further health problems.

It's just that simple.

Yes, scare tactics aren't too effective, especially on the young. I heard it said that telling young people that they will die if they drive drunk doesn't work, because they think it won't happen to them and they feel invincible. Instead tell them that they could end up in a wheelchair like Christopher Reeve and unable to hang out with their friends. That has more of an impact.

But it applies to a lot of things. I took birth control pills as a young, relatively healthy woman. The doc and the prescription insert said that users could develop a whole group of side effects, including kidney and liver tumors. Did I think it would happen to me? NO. Did it? YES. (Benign at present, thankfully.) Would I go back and change my decision now? Maybe, but I was able to not worry about unplanned pregnancy and have two very well-planned, healthy babies exactly when I wanted them and not when I didn't. My friends who were not on BCPs were unexpectedly parents when they didn't want to be.

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IMHO the big problem is that it is hard to find scientific data on the net for what happens when one is occasionally glutened. Why we feel so ill from a small dose of gluten,

Actually, there are MANY studies of people on a gluten-free diet for years who still have villous atrophy (or refractory sprue) upon repeat biopsy.

This is a completely different issue to "what really happens on an occasional glutening"

Please don't get emotional about it. It is a valid question. I'm just curious what happens in case I get accidentally glutened.

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This is a completely different issue to "what really happens on an occasional glutening"

Please don't get emotional about it. It is a valid question. I'm just curious what happens in case I get accidentally glutened.

I gave this, impersonal, non-emotional & credible link at the beginning. Here's a pertinent excerpt:

"The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten."

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets6_Treatment.pdf

and another:

": Is it ok if I ingest some gluten if I do not experience any symptoms?

No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis."

http://www.celiacdiseasecenter.org/A_Patients/A02-FAQ.htm

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I gave this, impersonal, non-emotional link at the begining. Here's a pertinent excerpt:

"The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten."

http://www.curecelia...6_Treatment.pdf

I've seen this document and although it is coming from a very reliable source, there is no scientific reference to their statement that it "can" damage the intestine.

Has nobody found any study yet about the effects of occasional glutening?

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Has nobody found any study yet about the effects of occasional glutening?

I highly doubt one exists. It would be very difficult to do in a meaningful way. You would need a significant number of people with celiac disease, over a long period of time, with a "control" segment who are 100% successful at keeping totally gluten-free, for comparison. Given reality, I don't know how you could verify the control group's compliance.

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    • Re. gorilla munch - Made with corn, says gluten free on the box, I don't know why it wouldn't be. It's quite yummy. Corn pops and Post golden crisp used to be my favorites, before celiac.
    • I buy the Chex cereals( except wheat). I had recently been buying Puffins from Barbara's bakery but got a very unsatisfactory answer to my question about where they source their oats so I have decided to stop buying them. See below.... "Thank you for your recent email about the oat flour in our Puffins cereal.  We appreciate the time you took to contact our company.

      Approximately 90% of our ingredients are sourced from North America. However obviously there are some crops that do not grow here, and items that are not manufactured here. In those cases, we source from other areas, mainly UK, EU and South America. Regardless of where the supplier is located, we have a very robust Supplier Assurance Program that ensures that we purchase only from approved, high quality suppliers. 

      We thank you again for your comments and hope you continue to enjoy our products.  If, at any time, we can be of further assistance, please don't hesitate to contact us again."
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