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Bravie

Venting. Celiac Disease Is Impossible To Manage.

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Ok. So here's what happened. I have been gluten free for like almost a year now. Just this past month, I consumed 0 gluten/casein, I had 0 symptoms. Then a few days ago, I got either glutened or caseined, idk. I'm betting that it was casein that did this to me. Before I went dairy free, my symptoms weren't all that bad. I would have a little gas for half a day and that would be the end of it. I eliminated dairy because I wanted to see if it was giving me problems.

5 days ago, I started to have extremely itchy skin, an awful headache, Acne,

gas, and diarrhea. I can't tell if I got glutened in between all of this or not or if this is still from the other day, because I still have symptoms.

And on another note, i've come to the conclusion that this diet has done more harm than good to my body and my life. My reactions have gotten worst, It's extremely difficult to keep up with this diet. I've replaced my cooking ware, my hand soap, my shampoo, brushes, towels, sponges, everything. I read the labels on every single thing I purchase and I try to avoid processed food as much as possible. I don't eat at restaurants any more, I have no social life. It's going on 6 days that i've been experiencing symptoms, and sometimes, it feels like they're getting worst.

I live with people who eat gluten, I share forks, knives and plates with them. I rewash everything before I use it, and it seems like its not doing me any good. I store all of my dried goods in a separate shelf (just as someone on this forum told me to) and I put all of my refrigerated and frozen goods in ziplock bags and plastic containers (someone else told me to do that in this forum as well). And I still get glutened/caseined somehow.

I feel completely helpless. I'm trying all I can to take care of myself and avoiding gluten and dairy as best as I can, but I still manage to get contaminated once a month. This is serious. I'm basically killing myself, but it isn't on purpose. I feel like giving up. I'm 20 years old and I feel like I have nothing to look forward to. I was supposed to finish college last year but it's been postponed because of my symptoms.

I wish they would just find a cure for this thing already. It's a shame that this disease isn't recognized even by the general population.

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If I am reading your post correctly, it sounds like you were doing well until 5 days ago. Then you ate something that caused a reaction. Now you are having a difficult time getting over that reaction. Sometimes, when it takes time getting over a reaction, we get depressed, I know the feeling. I was glutened by a medication in January and I am still trying to get my tummy back in order. I think sometimes our autoimmune system goes just a little haywire and attacks a little too heavily. Give yourself time to heal.

I always recheck my vitamins and such at a time like this. Sometimes the products we learn to trust may have changed an ingredient that we didn't noticed. Sometimes, once we do get the gluten out of our system, other intolerance's that you also had may surface, such as soy, or corn. Many celiac's also cannot tolerate soy. There can be many reasons.

Going gluten free never harms you. Gluten is not necessary for anyone to eat. To be honest, I think everyone would be much healthier without gluten. We have genitically messed with the original gluten products so much, that our bodies are no longer able to digest it. It's like they say, it's not the gluten our ancestors ate.

Stay gluten free and feel better!


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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And on another note, i've come to the conclusion that this diet has done more harm than good to my body and my life. My reactions have gotten worst, It's extremely difficult to keep up with this diet. I've replaced my cooking ware, my hand soap, my shampoo, brushes, towels, sponges, everything. I read the labels on every single thing I purchase and I try to avoid processed food as much as possible. I don't eat at restaurants any more, I have no social life. It's going on 6 days that i've been experiencing symptoms, and sometimes, it feels like they're getting worst.

The choice to have no social life because of the diet is your choice. It's a valid choice, but it is not the only choice. You can separate eating with socializing (even if others are eating!). You don't have to, but I want to encourage you to realize it's a choice, and to make the choice - either way - fulling aware of the fact that you're making that choice.

Experiencing symptoms for that long isn't uncommon - a number of us have reactions that take a week or two (yes, two weeks) to subside.

I live with people who eat gluten, I share forks, knives and plates with them. I rewash everything before I use it, and it seems like its not doing me any good. I store all of my dried goods in a separate shelf (just as someone on this forum told me to) and I put all of my refrigerated and frozen goods in ziplock bags and plastic containers (someone else told me to do that in this forum as well). And I still get glutened/caseined somehow.

Two things come to mind - shared counter space/prep areas. You may want to see when you can find a place that will let you not share space.

I feel completely helpless. I'm trying all I can to take care of myself and avoiding gluten and dairy as best as I can, but I still manage to get contaminated once a month. This is serious. I'm basically killing myself, but it isn't on purpose. I feel like giving up. I'm 20 years old and I feel like I have nothing to look forward to. I was supposed to finish college last year but it's been postponed because of my symptoms.

If you're getting glutened once a month, then you haven't had no gluten in the past year - it's nearly the same as not being gluten free, from the perspective of the chemistry of your gut. From the perspective of trying, it's totally different, and the efforts you've made really are a VERY GOOD THING! I know it doesn't seem that way, but they are. Talk with the people you're living with, and see if you guys can do anything together that can help improve the situation.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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My family refused to alter their lifestyle for my sake. They don't clean the counters, they get bread crumbs everywhere, they don't even think twice about it. I have to re-clean everything in the house before I use it. No one understands what I go through if I get gluten in my body. They think it's all in my head, and they think i'm obsessed with being gluten free.

My boyfriend is the only person that atleast attempts to be supportive. He's offered to have me stay with him and he also doesn't mind the gluten free diet (He is a diabetic, he is gluten and casein free just like myself.) And ofcourse, my mom doesn't like him and won't let me stay with him, even though that means it would make my life alot easier and i'd be very happy. <_< Some people are so selfish.

How the heck am I supposed to get my family to understand without them thinking i'm completely crazy? My family isn't very close, we all just kind of live together. We aren't that social :/.

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My family refused to alter their lifestyle for my sake. They don't clean the counters, they get bread crumbs everywhere, they don't even think twice about it. I have to re-clean everything in the house before I use it. No one understands what I go through if I get gluten in my body. They think it's all in my head, and they think i'm obsessed with being gluten free.

My boyfriend is the only person that atleast attempts to be supportive. He's offered to have me stay with him and he also doesn't mind the gluten free diet (He is a diabetic, he is gluten and casein free just like myself.) And ofcourse, my mom doesn't like him and won't let me stay with him, even though that means it would make my life alot easier and i'd be very happy. <_< Some people are so selfish.

How the heck am I supposed to get my family to understand without them thinking i'm completely crazy? My family isn't very close, we all just kind of live together. We aren't that social :/.

If they are TRULY self-absorbed, you may not be able to get them to understand. You can try having your doctor write a note to them, and see if that does any good.

Given that you are over 18, however, consider that your mom doesn't actually have the power to say you can or cannot live somewhere. Yes, she can take away financial support for college if you don't do as she wishes, but that's just one of the trade-offs. (I had to deal with the same thing - and I chose to go it alone, and things have turned out quite well.) You *can* live somewhere else (either with your boyfriend, or figure out a way to live on your own - it's possible, though figuring out the how may take some doing), if you chose to do so. (In my situation, I ended up with $50k in debt, to finish college, even with about $50k in grants/scholarships, a strained relationship with my father, and a vastly improved relationship with myself. It was worth every penny and every struggle. I was not gluten-intolerant (to my knowledge at the time) so it was for other reasons I opted to take on the struggle.) I'm not trying to say "this is the answer", merely trying to share that this is *one* option that is open to you.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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If they are TRULY self-absorbed, you may not be able to get them to understand. You can try having your doctor write a note to them, and see if that does any good.

Given that you are over 18, however, consider that your mom doesn't actually have the power to say you can or cannot live somewhere. Yes, she can take away financial support for college if you don't do as she wishes, but that's just one of the trade-offs. (I had to deal with the same thing - and I chose to go it alone, and things have turned out quite well.) You *can* live somewhere else (either with your boyfriend, or figure out a way to live on your own - it's possible, though figuring out the how may take some doing), if you chose to do so. (In my situation, I ended up with $50k in debt, to finish college, even with about $50k in grants/scholarships, a strained relationship with my father, and a vastly improved relationship with myself. It was worth every penny and every struggle. I was not gluten-intolerant (to my knowledge at the time) so it was for other reasons I opted to take on the struggle.) I'm not trying to say "this is the answer", merely trying to share that this is *one* option that is open to you.

I agree, somehow it seems either you get out of that house or find a different place in it to eat. Is it possible to set up a mini refrigerator and hot plate etc. in your bedroom? If not it seems you should move out for medical reasons. You have nothing if you don't have your health. Its kind of a bottom line thing. Its so great you have a simpatico boyfriend and thus other options. You could live with him to start and then perhaps get another place. Meanwhile it seems you should take steps to get and keep yourself healthy. Your family may object, but since they aren't that close anyway don't let it get to you if its at all possible. It seems like its time to move on.

Yolo


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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Hi Bravie,

I have been gluten free for over a year now and my last glutening was at Thanksgiving when I was visiting my parents out of state. I brought all my own food and cleaned everything before I used it to prepare foods -- but my mom's kitchen is not a "safe" place.

It must be hard for you, I don't think I could share a gluten kitchen.

I think Yolo's idea of having a mini kitchen in your room may be a good idea. If your boyfriend doesn't live far, you can always eat at his house.

I always vote for a gluten free kitchen --it's made a huge difference for me. And even after cleaning all the gluten out of my house I think I still got zapped for a long time just from the years of its existence in my house - it's much better now.

I actually prepare everything on a paper towel... just in case a family member dragged something in on their hands and I wasn't watching :o

I have found, and perhaps others will agree, once you get your symptoms under control and are feeling good for long stretches of time, this whole diet doesn't seem so bad. Getting sick is such a set-back in so many ways, it's a reminder of all the negative aspects of this disease.

I hope you get and stay well soon, and good luck with school!


Cindy

Gluten Free since November 2006

Lactose Intolerant since 1980

100% Lactose Free since May 2006

Caffeine Free since August 2007

Hashimoto's Disease

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Ok. So here's what happened. I have been gluten free for like almost a year now. Just this past month, I consumed 0 gluten/casein, I had 0 symptoms. Then a few days ago, I got either glutened or caseined, idk. I'm betting that it was casein that did this to me. Before I went dairy free, my symptoms weren't all that bad. I would have a little gas for half a day and that would be the end of it. I eliminated dairy because I wanted to see if it was giving me problems.

5 days ago, I started to have extremely itchy skin, an awful headache, Acne,

gas, and diarrhea. I can't tell if I got glutened in between all of this or not or if this is still from the other day, because I still have symptoms.

And on another note, i've come to the conclusion that this diet has done more harm than good to my body and my life. My reactions have gotten worst, It's extremely difficult to keep up with this diet. I've replaced my cooking ware, my hand soap, my shampoo, brushes, towels, sponges, everything. I read the labels on every single thing I purchase and I try to avoid processed food as much as possible. I don't eat at restaurants any more, I have no social life. It's going on 6 days that i've been experiencing symptoms, and sometimes, it feels like they're getting worst.

I live with people who eat gluten, I share forks, knives and plates with them. I rewash everything before I use it, and it seems like its not doing me any good. I store all of my dried goods in a separate shelf (just as someone on this forum told me to) and I put all of my refrigerated and frozen goods in ziplock bags and plastic containers (someone else told me to do that in this forum as well). And I still get glutened/caseined somehow.

I feel completely helpless. I'm trying all I can to take care of myself and avoiding gluten and dairy as best as I can, but I still manage to get contaminated once a month. This is serious. I'm basically killing myself, but it isn't on purpose. I feel like giving up. I'm 20 years old and I feel like I have nothing to look forward to. I was supposed to finish college last year but it's been postponed because of my symptoms.

I wish they would just find a cure for this thing already. It's a shame that this disease isn't recognized even by the general population.

Hi,

I know the frustration you are feeling. I am just getting over a flare. The gluten also causes asthma for me. I cannot breathe well when I get the gluten. I have to avoid eggs, dairy, and sugar. My family eats gluten. We built a separate pantry for my food. I cannot buy any food made as far as bread in a specialty bakery because of the other limitations.

Gluten can be hidden and not be listed.I found out a bread I was eating is not gluten free as the label proclaimed. FDA is acting on the company now. I was ticked. I work for a cardiologist and we have drug reps bring in lunches all the time. They had a chicken pasta dish today with a cake called Twinkie cake. It smelled great, but I ate the salad and stayed good. Boy, was thaat hard. You are young and have your whole life ahead of you. Get determined and brush off the grime and stiffen the chin. You can conquer it by reading and asking. I have learned to tell restaurants exactly how to cook my food. Not on a flat grill but on the chargrill after they clean it. Most restaurants will tell you what is in the food. I ask what ingredients is in the seasonings or I take mine with me. I have been on 2 cruises and cruised gluten free. This disease is more recognized now than t was 10 years ago. I ordered food from England, France and Canada. There was not going to a health food store and buying it.

Hang in there and see your physician if the reaction is stil holding on. You may need some supplements to assist your bowel to start healing. Let him know how you are feeling and see a good dietician to assist you. Invest in a membership with Celiac Association and get the food book that they have to help you shop.

Just hang in there and take a day at a time. Remember stress makes things worse.

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I've read your post and some of the responces. The gluten free diet is hard. Your family is not being fair to your health. The way I look at it the diet is a matter of life or death. The fact that they won't even make little changes to help you out. I was lucky I liveed by myself when we found out so I wasn't sharing my kitchen. My sister recently moved in with me and is gluten-free in the house because I can't have it around me. If your over 18 your family really doesn't have the power to tell you what to do. Look at it this way: Only YOU are responable for your choices and no one else can live your life. As far as not having a socil life it is hard but one of the things that got in my way at first was the fear to ask questions. I can go out to eat and not feel bad about asking questions so that I can eat safely. I have a bar I go to to watch a friend play and they have gotten very good at dealing with me and have even started carrying a beer I can drink. You have to learn what's safe and what isn't. Don't let the world scare you just because of your diet. Learn how to work around it.

My advice in a nutshell: if your family isn't respecting you and you have the oppertunity get out! Also figure out small ways to get back into the world. You will feel soooo much better!

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