A Crisis Of Will

[Sinenox]

I've been gluten free for a few years. I was quite strict in the beginning, felt out my boundaries, realized how much I could be hurting myself and took only calculated risks. This last summer I spent a couple of months in rural Tuscany. I don't travel the way most people do - so all of that nonsense about how great Italy is for Celiacs was just that. If you're in a major city, it is fantastic. If you're in rural areas you deal mostly with people who have no idea what you're talking about, even if you speak a bit of Italian. I could have some gelato and drinks but for main courses I was looking at carefully guarded salads or risottos, and I was still glutened so often that I developed a tolerance to it again.

This has presented a major problem and I would very much appreciate some input on how to solve it. After I had been back a few months I realized that I was not-entirely-consciously maintaining that tolerance. Who could blame me? When I get it normally I end up in excruciating, relentless pain. I also get the shakes, extreme hot and cold flashes and a whole (and literal) mess of terrible physical and neurological symptoms that take me out of commission for days. I'm not the lingering kind either. If I can go to work with moderate confidence that I wont make other people extraordinarily uncomfortable I do so, absolutely. I'm working in a pretty high-stakes environment now and since I'm adjusting to a new region I've been glutened a few times after moving to my new home. Those few times cost me quite a lot. Many of my symptoms are rushing back in force now but not the ones that cause serious pain or incapacitation. I've been forced to admit that I am engaging in more risky behavior because I am afraid of what might happen if I lose the tolerance again. The glutening really is terrifying and stressful beyond words. I recognize that I am hurting myself in the long run but this time that argument has not been effective.

I'm grateful for any advice on how I can handle this.

[Fiddle-Faddle]

Am I missing something? It sounds like you are making excuses to eat gluten.

[RiceGuy]

Perhaps it will help to remember that it isn't just pain or discomfort. Nor is it just any other symptom. It's what happens over the long run - thyroid problems, cancer, kidney failure, liver problems, gallbladder problems, neurological problems, and much more. Basically, permanent damage to various organs and systems of the body.

Here's a list of just some of the really good reasons to remain 100% gluten-free:

https://www.celiac.com/categories/Celiac-Di...-and-Disorders/

I don't believe the body can "build up a tolerance", in the sense that the problem is any less serious. Rather, I think the body just looses the ability to fully react.

A dentist can numb your mouth until you no longer feel the pain of an abscess, but that doesn't make the problem go away. It simply lowers your awareness of it.

[ShayFL]

For some it takes one of those major consequences (cancer, thyroid disease, diabetes) to make them fully comply. If this is you, then that is just what it will take. I hope you arent that way and can make up your mind right now.

[Fiddle-Faddle]

Some people don't like to feel that they are not in control, and they think that admitting that they CAN'T have something means that they aren't in control; eating wheat makes them feel in control

But they're really letting the wheat control them, aren't they?

You decide if you are capable of controlling what goes in your mouth--and what diseases/disorders follow.

Do I miss wheat? No. I can make a gluten-free version of anything I want.

All I miss is the convenience, but the way I figure, an extra half hour spent mixing gluten-free flours from scratch is way more convenient than having my immune system attack me.

My 10-year-old, who isn't even officially diagnosed, felt so much better after going gluten-free, that when we did a gluten challenge and he ended up in the bathroom, crying, with cramps and diarrhea, he sobbed, "I'm never eating gluten again."

And he hasn't.

[luvs2eat]

Do I miss wheat? You betcha... I can make lots of things gluten-free, but there are some that just don't translate.

Would I intentionally eat wheat, etc... cause I craved it so? Not on your life!

[SGWhiskers]

From my perspective, I see a man who knows the risks, but has not placed his health as a high priority. Your Celiac WILL get worse and worse. It is likely to lead to other illnesses as well. Your symptoms WILL start affecting your life. You know this.

Take two steps back, and imagine the impact to your career if you were to develop neurologic symptoms from Celiac such as mental confusion, ataxia, parasthesias when typing or driving. How about malnutrition that caused vision problems, weakness, fatigue, anoxia, constant migraines? How would these things affect your judgement and efficiency at work. Consider how an unpredicitable second autoimmune disease would affect your ability to perform your job. Would you need to take time off for doctor's appts or just to try to recover? Would you need to take medications that might affect your judgement? What would cancer do for your career? Would you even be able to work while you went through treatments?

Your high stakes career seems to be a motivator for you, and as such, I think you should seriously consider if current or continued use of gluten could affect your performance and time at work. You and I both know this isn't something you can rationalize away. Since you find yourself trying to do this, I think it would be a good investment of your time to work with a dietitian or psychologist who can help you incorporate your short and long term health needs into your career and personal goals.

[dilettantesteph]

I saw a talk by Dr. Fasano, the leader of the celiac group in Maryland. He said something like before the cause of celiac was found, 30% of celiacs died. That means that 70% of celiacs didn't die. Maybe if you aren't experiencing bad symptoms eating gluten, it wouldn't be so bad to go ahead and eat it. Of course, you are still taking that 30% chance.

[Fiddle-Faddle]

I saw a talk by Dr. Fasano, the leader of the celiac group in Maryland. He said something like before the cause of celiac was found, 30% of celiacs died. That means that 70% of celiacs didn't die. Maybe if you aren't experiencing bad symptoms eating gluten, it wouldn't be so bad to go ahead and eat it. Of course, you are still taking that 30% chance.

Sure, if you think it would be a good quality of life. But did you read sgwhiskers' post?

Take two steps back, and imagine the impact to your career if you were to develop neurologic symptoms from Celiac such as mental confusion, ataxia, parasthesias when typing or driving. How about malnutrition that caused vision problems, weakness, fatigue, anoxia, constant migraines? How would these things affect your judgement and efficiency at work. Consider how an unpredicitable second autoimmune disease would affect your ability to perform your job. Would you need to take time off for doctor's appts or just to try to recover? Would you need to take medications that might affect your judgement? What would cancer do for your career? Would you even be able to work while you went through treatments?

Don't forget that the internal damage that causes these conditions is for most people, largely symptom-free for many years. Once symptoms are noticed, severe damage is already present--and possibly not curable.

[TrillumHunter]

. That means that 70% of celiacs didn't die.

Maybe I wouldn't have died. But I think I would have wound up divorced and alienated from my kids and all the people who care about me. I think I would have wound up unable to drive, walk for any distance or control my anger. I think I would have continued to wish I were dead--every stinking day.

So a baked potato and plain salad is my go to meal in restaurants? My trade off is I hiked into a gorgeous canyon with my kids for five hours. I can support and care for my husband through his own medical issues despite the difficulty of it all. I am glad to be alive. The people I love are glad I'm alive, too.

[darlindeb25]

Am I missing something? It sounds like you are making excuses to eat gluten.

I was thinking the same thing, and none of us are going to tell you it's ok to eat gluten. It's never ok for a celiac/gluten intolerant to eat gluten. You are poisoning yourself!

Sinenox, you are looking at this the wrong way. Many of us who have been gluten free for years, sometimes do not have as severe a reaction when glutened, or we have a very different reaction than we used to. The first few years I was gluten free, any amount of gluten gave me diarrhea for hours and hours, left me feeling like I had lived through a horrible bout of the flu. I rarely ever get diarrhea, yet if I am glutened now, I have severe neurological symptoms. It seems to hit me all at once, a severe headache, dizziness, nausea, blood pressure shoots up, and then the brain fog hits. The last time I was glutened, I was sick for 3 months (was a medication that contained gluten, even though they said it didn't).

I was sick for well over 20 yrs before I knew what gluten was. I developed neuropathy, which I will always have.

Stay gluten free, please.

[Sinenox]

Thanks for all of the replies, guys.

It's not an issue of making excuses or of wanting to eat gluten - I can assure you that I learned quite viscerally how bad the gluten was for me, long ago. I am eager to get back to my completely gluten-free lifestyle. I even got an ulcer over all of this stress about eating the gluten again. I desperately want to be gluten free and I completely agree that the long-term complications of celiac would be far worse for my career.

Here's the problem:

I was forced back into a diet that contained gluten (went through all of my reserves, went to every shop and restaurant in the little town, spoke to everyone I could, couldn't afford to pay for a cab-ride out even once a day). I became less sensitive to gluten overall. When I moved to this new area for grad school, I got glutened a LOT (as is somewhat inevitable in every situation when you move to a new place and you're expected to eat out with professors and peers and visiting scholars and you haven't felt out the lay of the land, etc...some times things claim to be gluten free and just aren't and you learn that the very hardest way, as per the recent ChicagoTrib article). When I started to lose that "tolerance" or numbness I guess...I was horribly ill for long periods of time and literally couldn't get up off of the floor. This was considered completely inappropriate by my program that doesn't have a feel for what the Celiac Disease entails or why it should make me miss anything. People there get upset if I haven't checked my e-mail in a few hours. Explanations look like excuses. I'm stressed both about being on the gluten and about the prospect of missing even one more class or meeting due to a slip-up beyond my control. The last glutening was worse (if that's even possible) for the fact that I was laying there thinking about all of the obligations I was falling through on. My advisers and peers really have changed their opinions of me since that time and they made it clear to me that sickness really isn't an option. So what can I do? By all means I don't want to seem helpless - that is how I feel, however.

Again I very much appreciate your input.

[Fiddle-Faddle]

You appear to be contradicting yourself.

Your post is titled, "A Crisis of Will," implying that it is about willpower?

After I had been back a few months I realized that I was not-entirely-consciously maintaining that tolerance. Who could blame me?

It's not an issue of making excuses or of wanting to eat gluten

I was forced back into a diet that contained gluten

Nobody can force you into a situation where you have to eat anything to which you are allergic or sensitive.

[CMCM]

I really empathize with you in many ways. I have struggled with compliance since Nov. 2005. Briefly, I have a mom with celiac disease (diagnosed 40+ years ago), but since my own various symptoms weren't like hers, I didn't think I had the same problem. I thought for most of my life I had issues with dairy more than anything else. Now I know that my dairy problems were real, but most likely connected with/exacerbated by eating gluten. I've lived with digestive issues forever, but there was no rhyme or reason to it. Sometimes certain things made me sick, other times not. I've read that the body struggles to "tolerate" gluten, sometimes with more success than others. This makes sense to me, and explains why I don't get obviously sick every single time I eat it. However, I do realize now that eating a lot of gluten day after day really weakens my body, and eventually I don't seem to tolerate much of anything at all!

From 1995 to when I figured things out in 2005, it was getting progressively worse. Although I never got an "official" diagnosis, what led me to Enterolab was too many times being sick after eating, headaches, and finally, a very frightening episode of vertigo. That's when I started looking into this and found all the connections to celiac disease, connections which I hadn't known about previously. I read pretty much all the books available on the subject, found this site, and learned about Enterolab testing.

My Enterolab tests revealed antibodies to gluten and casein, and the gene test revealed I had my mom's celiac gene. The wrirting was pretty much on the wall. Starting in 2006 I was gluten and dairy free for about 6 months and I really did feel better. Digestive upsets gone, no more vertigo, no headaches. Then I added in a small bit of dairy here and there and seemed to tolerate it. But from late 2006 until about 8 weeks ago, it was a matter of being on the gluten wagon and then off the gluten wagon. Sometimes when I'd eat it I got no discernible reaction. Sometimes I'd think I was probably having a reaction but I couldn't be sure. In summer 2007 I had been eating enough gluten pretty much on a daily basis that a new reaction starting occurring: arthritic symptoms on my hands/fingers. It occurred literally overnight and the connection was undeniable because this happened after a major gluten binge that had been going on for several weeks. This really scared me, and I could barely grasp a glass of water it hurt so much. Getting rid of the arthritis wasn't so quick: it took several months gluten free to accomplish that. Then I'd start eating gluten again and it would always get out of hand, and the various symptoms including arthritis would come and go.

In September I just decided I'd had it playing this game, I did not want to have any sort of arthritis, and I quit gluten entirely and I've been scrupulously careful to avoid it ever since. Of course I now feel SO much better, but interestingly, I've finally achieved the mindset I needed to never eat it again. I'm not even tempted. I think the more you get away from it, the hold gluten has over you lessens.

I don't know what to tell you to get to the point of acceptance, but I do recommend working hard to reach that point. It's an emotional hurdle, so you just have to work on it from that standpoint. Gluten has a very addictive quality to it, and if you can get away from it for a few weeks (or even less) that particular craving really can go away. After that, it's the mind wanting the gluten you have to work on. I think for myself, I just gave up because it was a matter of trading health for the blasted gluten foods. I found the foods really weren't so important, and now I am able to view my favorite gluten foods with a lot of detachment and lack of cravings.

[mysecretcurse]

I'm really confused. I don't get how you got a "tolerance" from EATING gluten. Shouldn't it be the other way around.

I also don't get how you couldn't remain gluten free in Italy. They didn't have any meat there? Or fruit? Or salad minus the dressing? Or cheeses? I mean there should be a lot of things you could eat. I understand accidental glutenings but having NOTHING that was naturally gluten free around, like grapes or something? Wha? I'm confused.

[SandyStPeteFL]

I am newly diagnosed...about two months now. I am not "feeling better" or "used to it" or liking it at all. But I have a strong mindset that says I CAN and WILL do this. I do not feeling like I did before my diagnosis. I had an upper GI followed by the blood tests and was given the wonderful diagnosis of being a celiac. I went to a nutrionist and we have had several discussions since.

I also quit smoking about 5 months ago and I figure if I can do that, I can do this!

I thought for a long time I was lactose intolerant. I have suffered migraine headaches since I cracked my head open when I was nine. I had been diagnosed with IBS about two years ago. I have had all the gastrointestinal issues that come with Celiac disease. My major problems started up about 7 to 8 months ago. My doctor sent me in for gall bladder tests. Those tests showed that I had a bad gall bladder. She sent me to a surgeon to have it removed. The surgeon was perplexed by my pain that was on my left side (gall bladder is on the right). He decided to run a couple of more tests...a CT with contrast and an upper GI. The CT showed my gall bladder working at only about 10% capacity but with no stones. The upper GI was done and showed my stomach looked fine with just a bit of inflammation by the gall bladder area. The biopsies were taken, tested and came back with the diagnosis of Celiac Disease. Then came the blood work. All blood tests showed positive for Celiac Disease.

After three days of being on a gluten free diet....Mind you, JUST 3 days.....most of the problems I had been having seemed to vanish. Like spending half my day in the bathroom.....gone!!! The bloating, the gas, the pain associated with that.....gone!!!! I was amazed. And in love with my surgeon who cancelled the gall bladder surgery because I really did not need it yet.

I hate....I repeat....HATE being gluten free. But I really hated being sick all the time. I am learning to find good foods, good bread, and changing my expectations. I found a really good cheese bread in the freezer at the health food store. Yummy!!! I will work within the diet, learn to live with it, and be happy.

I was the kind of person who lived on pizza twice a week....I baked constantly, pies, cakes, cookies, muffins, rolls, breands, all those goodies. And from scratch. Now I will learn a new way to bake. I hated to cook for dinners, we always ate out. Now I will learn to love to cook. My husband is diabetic and I am celiac. So what a challenge.

Eating gluten again is not worth the destruction of your body. Work around it. My nutrionist told me that it will be hard to being with, but with time, you can find a way to live with it. She also told me that if a major move should come into my life, it will be just like starting all over again.

Sorry to have rattled on.....just my opinion.

[CMCM]

I'm really confused. I don't get how you got a "tolerance" from EATING gluten. Shouldn't it be the other way around.

I don't have the source for the "tolerance" explanation at this very moment, but I'll try to find it and get back to you. Basically, the essence of it was that the body struggles to handle things it perceives as "invaders", in this case, gluten proteins. If you are eating gluten, perhaps eating it lightly, the body is often able to overcome the body's initial heightened response to the invader gluten. However, if you are eating gluten a lot, daily, day after day, over time the body just can't handle it any more. I think this is something like getting exposed to a particular bacteria: two people are exposed, and perhaps one of them is able to fight off the response and doesn't get sick, whereas the other person isn't. The person who didn't get sick had at that moment a strong defense system, whereas the person who got sick did not for whatever reason (perhaps this person had been fighting off other bacteria etc. at that point and was in a more weakened state).

When I read this explanation, it made sense to me and explained why sometimes I would get sick from gluten foods and other times not. I realized that I handled gluten foods if I was eating very very "gluten light", not having gluten every day, but when I really went to town with gluten and was having a lot of gluten foods on a daily basis and multiple times per day, I went downhill in my ability to handle it.

[April in KC]

I think I understand what you're saying. I have never intentionally glutened myself, but you are confirming something that I have suspected - that the same way that the seriousness of reactions can increase when you're completely gluten free, it can also eventually decrease when you get glutened frequently. However, you're finding it hard to control the frequency and severity of your glutenings.

Do you think you might be having trouble returning to a "strict" lifestyle - perhaps because the small amounts of gluten you're getting now is affecting your judgment somewhat? There have been a number of posts here from people who mention that they engage in riskier eating after they get glutened. I know I have at times. In my case, I still don't eat outright gluten, but I eat other gluten-free things in my house that I have little tolerance for, that other family members tolerate.

This sounds a little like a behavioral reaction + an addiction - and I believe gluten has that property for some of us. Something about the peptides...

When I first stopped gluten, the first 48 hours were the hardest. Same thing for milk. Eventually, though, the hold breaks and it's EASY to maintain control. For various reasons, I have been back on milk....after several months, I am interested in trying to stop again...the very fact that I can't seem to go 24 hours without consuming some milk product is a strong signal that I probably have a problem with it, KWIM?

Straight up - I think you need to give up on the idea of "tolerance" to CC and go back to being very pure in what you eat. Commit to going 48-72 hours following an extremely strict diet. Shop before you start. Make sure you have everything you need - bake if necessary. Treat yourself to a reliable gluten-free meal out so you don't feel deprived. I'll bet once you're really gluten-free for 2-3 days, you will find new resolve to stay that way.

Let us know how it goes. I feel for you - I'm not judging. I just think you KNOW what you should do. You are putting your health (and it sounds like perhaps your career) at risk for something that will only make you sick and incapacitated. Make a plan for how to eat better - shop ahead - think through your snacks, etc. - and stick to it. GL!

[April in KC]

Sinecox - I just read your second post - I wanted to add a bit to my reply.

It sounds like meals out, especially lunch, are high risk times/environments for you. I think you need to have a frank conversation with your supervisor about what you are going to do to make sure you're not glutened as frequently at lunch.

I have a career where I need to dine out. The people I travel with know about my condition - they have watched me go from fumbling about it, to confidently and discreetly ordering what I need. No sauces. Simple grilled meats and steamed veggies - salads - baked potatoes, fruit, etc. My typical line when I place an order - I quietly get the waiter or waitress's attention and point to something on the menu. I quietly say, "I have a medical need to eat gluten free. I think this (pointing) ought to be gluten-free, but can you ask the chef/cook? If it isn't, just have them recommend something that is, and I'll have that instead." It works GREAT, and it gets them to talk to the cook/chef without making me seem like a diva. While the wait staff doesn't always know gluten-free, the chef/cook almost always does.

Other options...keep some shelf-stable snacks in your bag or car so that you can eat before meals out with scholars, etc. Get a triumph dining card so you can discreetly hand it to the wait staff to give to the chef.

Playing weekdays and lunch safe doesn't mean you can't still take a chance and explore a new meal or food...just do it on Friday nights or whenever you have time to deal with the possible consequences.

HTH!

[Sinenox]

You appear to be contradicting yourself.

Your post is titled, "A Crisis of Will," implying that it is about willpower?

Nobody can force you into a situation where you have to eat anything to which you are allergic or sensitive.

I can see how that would be confusing. So I was sent to Italy for my career and I was in this one area for a month. I was "forced" to eat gluten because I could not avoid it in the food I ate there. There was not gluten free food available. Even the salads I would order had cross contamination issues like crazy. Them's the facts. That part had nothing to do with will. Since I've gotten back, my diet has been somewhat within my own control. "Somewhat" I say because having moved to a new area things that by all rights and diligent research should be gluten free and would be where I used to live are not. The point where willpower comes in relates to risky behavior (which is nonetheless hard to get around) related to what I eat and how likely it is to be cross-contaminated.

And yes - I know Italy is made to sound like heaven, but the fact is that where I was it was much harder than it would have been in other parts of Europe or in the U.S. to get a gluten free meal. The salad dressings, stocks, cheeses, sorbet of all things...not once gluten free. Don't even bother with risotto - what a nightmare. And they put bread in and on everything (I'd love it if I could eat it, mind you). Fruit and steak. That's what I ate successfully most of the time. Even the few gluten free packaged items I did find made me sick.

I think I understand what you're saying. I have never intentionally glutened myself, but you are confirming something that I have suspected - that the same way that the seriousness of reactions can increase when you're completely gluten free, it can also eventually decrease when you get glutened frequently. However, you're finding it hard to control the frequency and severity of your glutenings.

Do you think you might be having trouble returning to a "strict" lifestyle - perhaps because the small amounts of gluten you're getting now is affecting your judgment somewhat? There have been a number of posts here from people who mention that they engage in riskier eating after they get glutened. I know I have at times. In my case, I still don't eat outright gluten, but I eat other gluten-free things in my house that I have little tolerance for, that other family members tolerate.

This sounds a little like a behavioral reaction + an addiction - and I believe gluten has that property for some of us. Something about the peptides...

Yes, exactly. I think you understand what I meant by "tolerance" - I should have given a definition. The part that I think I'm still having a hard time getting across is that I absolutely want to be gluten free. This problem is purely logical. It doesn't arise from a place of emotion or addiction (though cloudy thinking is a good point). It comes out of the recognition that having another glutening of some severity could cost me my current career track. When I have my career on one hand and my long-term health on the other (and my body screaming not to be in that much pain or stress again soon in between) it's hard to convince myself that being more careful is worthwhile right now, though I know in the long term it's incredibly important. It's a little bit like trying to convince yourself to stick your hand in a trap. I feel as though I can tell myself what I should be doing, but I have a very physical reaction to the prospect of having another incident like the last one while in school. I also have to travel a lot to collect samples and as I mentioned I don't really do the "safe" touristy stuff. The prospect of being incapacitated while isolated and alone in the field of a foreign country has weighed into this decision as well, I suspect.

[ang1e0251]

I remember seeing a news story about reporters who went into a war zone. They were stationed in a hotel but of course traveled a lot and the hotel was only semisafe anyway. I think you need to think of yourself as being in a celiac "warzone". These reporters packed an entire suitase with canned meats like tuna, beef and chicken that they could eat when food became unavailable or when they were confined to their rooms. You are going to need to do the same. If you really are committed to your profession, now's the time to get serious...period. Give yourself a hard mental shake and tell yourself to shape up, you've worked too hard for too many years to give this up for a bread crumb!!

Come on, your future depends on this. You can do it. You are a very smart person. Pack a bag of fruit and canned foods you can tolerate and hit the road, or the lab, or the classroom. Wherever you need to be. We are counting on you to succeed to show the world that celiacs can do anything!

I'm going to be thinking of you and sending out a prayer for your mental clarity and success. I know you can overcome this bump in your road. Show your stuff!!