How Do Y'all Cope With Getting Glutened?

[jasonD2]

Basically I spend so much time avoiding gluten and changing my life around & doing whatever is necessary, but obviously its inevitable...there is no way to live 100% gluten free unless you shut yourself off from the world and eat/prepare your own food all the time.

All I want to do now is heal my gut so the other food sensitivities go away & fix my IBS (if thats even possible) and whenever i eat gluten by accident I see it as a huge step backwards and starting from scratch again. This dynamic is emotionally draining for me. For example I had plans to go out Saturday night with friends and I think i accidentally got some gluten from gum ive been chewing. I spent the entire night obsessing over what was in the gum, did i get glutened, i just spent 2 months strict as all hell and now I reversed all that progress & have top start all over again, im never gonna get better and am gonna get colon cancer..etc, etc.

My god its so exhausting and it puts me in a funk and all i wanna do is stay home, not go out and be by myself

[Welda Johnson]

Hi Jason,

I'm so sorry that you're feeling so lousy! I'm 64 and have had celiac since age 8, so I've had a lot of time to live with this condition. It WILL get easier and life will get better. I can't remember the last time I got glutened. It sounds as though you have adhered to the diet 100% and it is ironic that a piece of gum can send us into such a tailspin, but that is the nature of this disease.

Please keep in mind that you may have intolerances to foods other than all grains as well. Milk & dairy, egg whites, yeast, casein, whey (milk derivatives often used in soy products), msg and a few other additives also bother me. It took a long time to figure out just which foods were causing the problems, but now that I know I avoid them like the plague. I sleep well, have lots of energy, stay happy, and weigh in at a normal weight, rather than carrying around 20-30 extra pounds on my petite frame.

You are right that celiac does change your lifestyle. I've become more of a homebody, but that is working for me because I'm studying for a Real Estate Broker's License. When I go out with friends now I ALWAYS tell them to pick their favorite place, because I've learned that the food in most restaurants doesn't taste as good to me as the food I cook myself. What a change. I used to love to eat out. I have overcome the stigma of carrying food with me, and barely care what others say or think, because only I know the foods I can tolerate. They are, simply, meats, fruits and vegetables. A basic diet. Not so hard really, if you think about it.

What can I do to help? Please keep coming back here, because those of us who have struggled so hard feel good about sharing what we've learned with others. It makes all the suffering worthwhile. As a mom and grandma I can tell you that it feels good to help family members who are just beginning to wake up to the fact that they, too, have celiac. welda@att.net

[jststric]

I am not a diagnosed Celiac, but am very gluten-intolerant. About the same time this happened, alot of other food groups became "intolerant" for me also. It CAN be exhausting. I believe I had the "leaky gut" to begin with and with time and acidophilus supplements, I felt like I had my gut healed. But that certainly didn't take away my other intolerances. It's an on-going battle, but one that you get used to living with. The healed gut did let me digest the things I CAN have better. Hang in there. I think we can only do the best we can do. As you said, unless you lock yourself away from the outside world, we are bound to be cross-contaminated, at the very least, from time to time. I think it's important for us to play our 20 Questions in the restuarants and help educate them...the chefs, as well as the servers, there are many, many of us out here who's health is really in their hands. Unless we help them know, it will never become more Celiac friendly. You can't freak out about all the "what if's" everytime you have a problem. We can only do the best we can do. Be vigilant, be educated and relax. We only get to live this life once.

[oceangirl]

Jason,

I hope you feel better soon. Believe me, I understand, working on 5 years in and VERY strict, I still get sick sometimes (like right now-ggrrrr.....) BUT! it does get easier and better and when I feel well it is worth the strictness. That said, I will tell you that my reaction is so intense and uncomfortable and painful that I am afraid of gluten.

You don't have to lock yourself up, but you may have to concede to only eating what you make.

Feel better,

lisa

[Ahorsesoul]

The only question is why were you chewing gum that you had not checked to see if it was gluten free? Just look it up on the company website--or email them.

[jasonD2]

It was a mistake..ever make one? ;-)

I never suspected the gum had gluten based on the ingredients and it just slipped my mind. I'm also not 100% positive i got a reaction from it since I dont really get symptoms when I eat gluten. Sometimes i get tingling in my legs but i dont know if thats a gluten reaction or something else..havent figured that out yet

I sent the company an email so we shall see

[StacyA]

I've read archived and recent posts here and a book that talked about saunas and pineapple and exercise and drinking a lot of water to 'flush' the gluten out. To the seasoned people: do those things work?

[Ahorsesoul]

I've read archived and recent posts here and a book that talked about saunas and pineapple and exercise and drinking a lot of water to 'flush' the gluten out. To the seasoned people: do those things work?

I do enough 'flushing' when I've been glutenized, no help needed for me.

[summerteeth]

One thing I do is write every symptom down that I get during the 5 miserable days - I do this because (1) I like to track stuff like that and (2) I think my sister and my mom have undiagnosed Celiac disease and this info may help them someday (or someone else who is newly diagnosed - who knows?). I also eat very simply - lay off the corn, soy, and milk products (I try to not eat too much of any of these as it is, but after a glutening I find that these make me SUPER bloated... among other things ). And drink a lot of water and bring Advil and Pepcid with me everywhere because the biggest symptoms for me are migraines and stomach pain and back pain.

Oh, and I warn my fiance and my family - they actually appreciate that.

[OptimisticMom42]

Hey JasonD2,

I've been glutened a lot. The smallest amounts will get me. I react to Bob's Red Mill gluten free oats, dog food dust, the jelly that got doubled dipped by a bread eater, tomatoes carried in a used plastic grocery bag......... it's an on going learning experience. I agree with you that the occasional glutening is probably just going to be part of my life. I do everything I can to avoid it and when that fails I do this......

liquid dye free children's benedryl (for itchy skin)

drink a tonic (huge glass of hot water, cherry or lemon juice, pure maple syrup) with Miralax if needed (to flush system, cherry juice reduces inflamation, maple syrup has magnesium)

double my magnesium to 1000mg before bed (to prevent cramps and to increase motility)

take acidolpholus (for better digestion of anything sitting in my intestines)

The last couple of glutenings only lasted about three days.

Hope this helps,

RA

[gf-soph]

Hi Jason

I can totally understand where you are coming from. It can be really hard adjusting to the diet, and easy to make mistakes along the way. I also know how emotive it can be - I live in a house with 3 non-celiacs and it would make me furious when they didn't do the right thing in the kitchen. It got so bad that I would look at the kitchen covered in crumbs and just decide not to cook that day as it would require an hour of cleaning before I could consider any of it safe. Almost a year after going gluten-free I have made quite a bit of improvement, and a lot of the diet is second nature now.

The best advice I can give is to let people close to you know what you are going through. When I started going gluten-free in October 08 I was still really sick and as a vegetarian my options while eating out were virtually nil. This led to me hardly going out and feeling very isolated. I was too proud to tell my friends how much I was struggling, and they had no idea how bad the symptoms were. Over time I got better at coping and they learnt a lot more about what I am going through. While I still don't do everything I would like to do I have supportive friends who are happy to plan things around where I can eat, and who are very understanding when I have a bad day and need to bail.

It's true that you have to change an incredible amount on the gluten-free diet. On bad days I do feel like I will never be 'normal', and this is really upsetting. But most days I am happy that I found an explanation for my pain and symptoms, and am glad that it is something that can be controlled by diet instead of medications. I also think about how much better things are for gluten-free people in the last decade or two, and how many more places offer and understand gluten-free eating even in the year I have been doing it. It gives me hope that it will get easier for us in the future.

Also, try not to freak out too much if you make a mistake. You haven't totally undone any progress you have made - you have learnt more about the diet and won't make that mistake again. It can be really useful to keep a food and symptom diary, particularly if you have other food sensitivities/IBS. It can be very helpful for you or a dietician to pinpoint any other foods that might cause you problems.

Good luck!

Sophie

[ang1e0251]

I don't know about gluten in gum. I haven't heard of that. But what I have heard of is people reacting to the artificial flavorings and/or MSG in gum. That could be a factor for you since you are battling other intolerances.