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alephknot

Glutened-how Do You All Function?

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hello everyone,

i have so many questions, so ill do my best to articulate what im getting at....and im pretty much brand new to this whole gluten free lifestyle. i was diagnosed by enterolab 4 months ago. and since then, my life has changed in ways i couldnt have possibly fathomed before hand. i do feel alittle back story is needed in order to propose my question. if you get bored, just skip to the end with the question..... :)

my life since the age of 14 has been fillled with psychiatrists, hospitals, meds, bull-poop diagnoses (first depression, anorexia,than bi-polar, adhd , substance abuse...etc.) all in all, i have spent a huge portion of my life being told and believing to some degree, that i have a mental illness, that is biological, or so deep rooted that i will never be able to reverse it, so therefor i must take medications to 'function normally' ..... well, its been ten long years, and im still clueless as to how one functions? and up until 2 years ago,it was mostly emotional/mental problems. but, 2 years ago my best friend died of an overdose.... directly after that event i started having severe stomach problems (which the doctors diagnosed many different things, including "its all in your head") amongst the stomach, it was hard to tell what was causing what...?? my fatigue, aching muscles and joints, dry skin, brain fog, memory, hair..etc was what i thought to be the damage i had done to my body from drugs, anorexia, and a relentless attitude of "mind over matter" catching up with me.

only since ive been gluten free have i felt "ok" or "alive by choice". like i might just be able to have a life in which i have choices, in which i have energy and confidence to pursue my goals, a life in which i actually want to get out of bed, and not at 3pm. a life which includes and loves my body (or is trying), a new perception of food, and what it means to be healthy, and a want to be healthy (which all of this is so new for me). and in my new life, i will do everything i can to help other people who have, by no choice of their own, become trapped in the vicious cycle of mainstream western psychiatric and medical practices. (i would also like to state that there are always exceptions, and i am by no means condemning all doctors and psychiatrists)

with that said, (sorry for the length of all this, i swear i have a question i am getting to) basically it comes down to this:

now that i know im ok, ive had the experience of feeling basically good..... and now know that a large part of my mental/emotional/physical state was due to eating gluten...... how do i "function" after being glutened???

its happened several times so far.... and honest to god, it feels like withdrawing from heroine. im back where i was 6 months ago, anxious, depressed, fatigued, restless, headaches, breakouts, bloated, an overall feeling of disgust. and im back to being the one who cant show up at work because im a total mess, the one that cant follow through with anything because of "personal crisis". and oh how much i hate feeling like "that person". and right when things are coming together.... got the job i want, getting gigs playing music, etc... things i need to be RELIABLE for. thats the word i was looking for, RELIABLE. how does one do this after being glutened???

and if you have made it this far in the post, thank you thank you thank you for taking time to read this. and any input or advice would be very much appreciated.

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Congratulations and welcome on making it to your post gluten poisioning life! I am no expert on getting through a glutening. It all depends on how it affects you as an individual. I have made several mistakes myself in the last month or two, and have tried to figure out a better approach to avoiding accidental glutenings. What bothers me most is when I don't know what caused the glutening incident. So I am making a personal policy of not adding more than 1 new thing to my diet at a time. That way I know if I get glutened that the one thing I added that day is the problem. This is pretty important to me so I want to be careful. It affects me pretty lousily too. Anyhow, I check on the gluten-free status of anything I add that may be a problem. If I am not sure I check the web by doing a search in google of the food name and gluten. For instance, "crackers gluten". Ok, bad example but you get the idea. I also check the CSA gluten-free product listing. I think the best wasy to survive a glutening is to avoid it. Takes a little work though.

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Everyone has different reactions mine happens to be vomiting,d, body aching, shaking and excessive sweating. I let it run its course. The best advice I have for you is to try 100% on making the right decisions on food. Remember that you are a celiac and you most likely will be glutened again, so just try not to think about the not so great parts and focus on the good things.

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Honestly- you just do the best you can. I usually only have one week of bad symptoms, and a second week of feeling kind of blah. I try as hard as I can to get exercise- and by that, I mean walking 5-6 blocks, since I'm so fatigued. Every little bit helps. Then again, it's ok to just take two sick days and sleep the whole time. I've learned not to beat myself up about it.

I try not to drive after a glutening, but when I have to I take a ritalin. This won't help everyone, but it's an issue for me, since one of the biggest changes after going gluten free was getting off prozac and ritalin after several years.

I can totally relate to being "that person" at work. Part of it is that I don't like to play corporate politics, but I'm not as upbeat as people think I should be. Granted, that's part of my personality, but a lot of times it's because health problems are weighing me down. It's the biggest reason why I choose to be a contractor working at home. I do have to pay more for health insurance, but I found that it's easier for me to maintain my health and have fewer bills in the first place than to have paid benefits but run myself ragged at an office, get glutened when I have to send for take-out because I only have half an hour at lunch, etc.

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I always have aloe vera juice in the house as I think it soothes my guts. I have acidophillus tablets also in the fridge and drink lots of water. I would say always be prepared as we all make mistakes from time to time.

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alephknot, I hate being that person, too! If you can get a dx in writing, I'm sure that would go a long way. If not, talk to your boss and explain the situation. As he or she sees you doing your job well the rest of the time, hopefully he or she will be sympathetic and understanding about the glutenings.

One thing to remember when you're in the throes of a reaction is that it will end. Try to track your reactions so that you can look forward to feeling better.

I'm happy to hear that you've improved so drastically going gluten-free. Good for you!

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Hi--Have you had any blood tests recently to see what you are short on nutritionally? After years of malfunctioning intestines you are probably missing some key ingredients, and improving them would help you recover faster. Celiacs tend to especially be short of calcium, magnesium, B complex (especially B12 but they are better taken together) and D3. D3 would be particularly good for you because you, like me, have trouble with depression. 6 months of a vitamin D supplement (5000 IU a day, and it should be checked with blood tests occasionally) did as much for my anxiety as 3 years of counseling.

I agree about the acidophilus. It would help your intestines recover if you took it daily. At least take it for a while after being glutened. Carry Immodium with you at all times.

Otherwise be really fanatic about watching what you eat. If in doubt don't eat it. Carry some sort of safe snack with you to eat instead. When I have a big event coming up that I just can't miss I have a short list of my absolutely safe foods and just eat those. When I was travelling last summer I pretty much lived on bananas and fried eggs. I was sick of them after two weeks but I didn't miss any parts of the trip!

You can also google within this website--just put in the food or brand name and often there is information here about it--hot discussions on baked beans and candy corn right now.

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I agree that you have to become a strict advocate for your own health. Carry your own safe food & don't let anyone sway you. I was slightly glutened at a wedding this weekend. I forgot how much I hate that person I used to be. THe sublingual methyl type B12 helps me through a lot. Eating what I needed, extra food, and rest kicked the rest of the reaction. Each person is different so you may need your own combination of tricks to get through it. Keeping a food and attitude journal could be road map to help you find your way. You already know no doctor has the key, the key lies within you. We care and will help all we can.

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i feel like poop , sore body i dont sleep for like 3 or 4 days , im irratable, i vomit for a good 5 -10 days, crave sugar and bloat up,headaches, and being young i have to try to explain to my friends that this is all a process of gluten attack. Which just ends up with me becoming introverted and giving up on a lot of my relationships as its just easier than to have justify to people why i cant get outta bed etc. But i do agree with ange1 that u have to find what works for you. Its been 5 years for me and im struggling worse then ever with this disease and am still trying to find what works for me. The only thing i have found is to take a s$#&load of xanex or valium to stop the body aches, i only wish it put me to sleep. What does anybody else do as when i have an attack i feel like im coming off drugs and eat all the sugar i can find.

alephknot, i know what u mean about being that person at work, i missed out on a year of school becuase of this, and since then the longest ive held down a job is about 3 months and this year ive been at work for maybe 2 months. ive found that staying with friends who understand and push you to do things is the way to go. obviously your gonna feel sick but ive learnt that usually your not that sick after a few days its just the mental part of it thats holding u back from continuing your life.

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Wow, noucha, why are you still reacting so strongly after this period of time? Are you eating hidden gluten or maybe you have some other food sensitivities? I can't have milk either. There are plenty of people posting to the forum with multiple food issues. Do you know what you're reacting to? I really feel for you. I'm so sorry you have to go through this. Keep posting, there is sure to be someone who can help with your particular problems.

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What gets me is all the products that say that they are gluten free that still make me sick. I check everything I eat on line first to see if anyone else has reported problems. I only add one thing at a time, try only a little bit the first time. Stay alert to symptoms and quit the new food right away if I notice anything. Sometimes I really want to be able to eat the new thing and I wait too long like I just did. I almost didn't make it to the bathroom, and now I don't dare leave the house. At least I am not lying in bed wishing I were dead...yet.

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Wow, noucha, why are you still reacting so strongly after this period of time? Are you eating hidden gluten or maybe you have some other food sensitivities? I can't have milk either. There are plenty of people posting to the forum with multiple food issues. Do you know what you're reacting to? I really feel for you. I'm so sorry you have to go through this. Keep posting, there is sure to be someone who can help with your particular problems.

yeah i am intolerant to dairy,fructose and soy and others which i am trying to figure out, but i keep these at bay asweel as gluten. But i seem to be accidently ingesting gluten all the time lately. Either by eating a product that has been fine for the last few years and suddenly they change the ingredients on me , or accidently skimming an ingredient when i am reading the label. I was very curious... the less attacks you have, the lesser the symptoms are when you accidently eat gluten?becuase even when i have gone 6 months without having gluten i seemed to have gotten the sickest i have ever been ,as i stayed off it for so long and was so healthy. I am just curious what happens to other people?

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For me, smaller & smaller amounts make me react. Also my reactions sometimes have variations that I can't figure out. I seem to always have D, but sometimes tremors, brain fog, achy joints, unqenchable hunger, lethargy, rashes...these can be in any combination. I recently stopped all sup[lements but B12 and am feeling great. I need to research each one. I'm reacting to something there.

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now that i know im ok, ive had the experience of feeling basically good..... and now know that a large part of my mental/emotional/physical state was due to eating gluten...... how do i "function" after being glutened???

its happened several times so far.... and honest to god, it feels like withdrawing from heroine. im back where i was 6 months ago, anxious, depressed, fatigued, restless, headaches, breakouts, bloated, an overall feeling of disgust. and im back to being the one who cant show up at work because im a total mess, the one that cant follow through with anything because of "personal crisis". and oh how much i hate feeling like "that person". and right when things are coming together.... got the job i want, getting gigs playing music, etc... things i need to be RELIABLE for. thats the word i was looking for, RELIABLE. how does one do this after being glutened???

Geez you sound like me. I'm 26 yrs old and I have had a long history of migraines and heart palpitations and eczema. I was diagnosed but with no medications prescribed and no follow-through. I had 3 MRI's only for them to tell me they don't know why I have migraines. Wore a heart monitor for 3 weeks for them to say, "oh you're fine...no worries" . Ive been plagued with gut problems...gas, diarrhea, indigestion. I've had mouth ulcers and when I turned 24 I started having what I thought was acne. Not to mention the states of depression I had been going through since highschool. I've always thought myself to be really strong and so I'd never go get meds for being "sad" when everyone is just telling me I need to "get over it". I have been involved in sports for a greater amount of my life, swimming, xcountry, volleyball, softball...etc. But when I got out of highschool I started bodybuilding. I could never seem to lose the body fat unless I was on an extreme diet...which consisted of plain chicken and fresh veggies or rice...4 x a day PLUS 3 or 4 protein shakes. The diet, which I had no clue at the time was wheat and gluten free which could account for my rapid weight loss (duh!). Two years ago i thought I was experiencing acne. I tried everything and nothing helped. My menstrual cycles were HORRIBLE and my mood swings were not of this world. Of course bad relationships just make EVERYthing worse. I lost two jobs because I just couldn't focus and thought it all because I was going nuts...in a literal sense. Then a year ago I found out through my mother that I may be intolerant to wheat and gluten.

:blink:

Since then I've eliminated the migraines, mood swings, mouth ulcers, breakouts (which was the DH-dermatitis herpetiformis), hair loss, dry/itchy skin (which was diagnosed as eczema when I was younger), the stomache issues with gas, diarrhea, constipation AND the bloating and water weight. Now all this goes out the window when I've been "glutened" as you call it. Also was diagnosed at 22 with ectopic heart beats which later I found I actually have heart palpitations. Well, that ALSO is caused from being "glutened." The instances where I feel it happening have been reduced from several times a week to a few times a month. All the symptom with the exception of the migraines and heart palpitations I thought were just normal, haha. I couldn't be more wrong.

For the longest time I was "that" person like you, who couldn't seem to get a handle on anything :wacko: I think it's all because of what we're eating.

I eat as a I go finding out little by little the things that I can't eat. I find comfort in knowing that my mother is the same way and any info she finds she passes along.

Another comfort I find is in knowing that Hersheys is wheat and gluten free :wub: Not the snack sized ones...so I indulge every now and again on reeces cups or hershey's kisses. Breyers vanilla with hersheys chocolate syrup is a good pick-me-upper too :)

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Wow.. just wow.

To the OP.. thank you. Thank you for sharing your story. Reading your post WAS like reading about my life, similar history, similar health/mental health problems in childhood, etc. I'm actually near tears right now because I came on here searching for support and I can relate to this so much..

I've been on the gluten free *attempting to be* diet since early 08.. I was off and on before that during the stage of "testing" foods which eventually led to my diagnosis.

I'm so depressed and emotional right now because after doing well for a fairly long period of time, I glutened myself yesterday.

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Hi-

I also went thru all the eating disorders and treatment that relied on eating more and more, mostly gluten food. It was so horrible that I thought it was normal to feel like crap all the time.

I have been gluten and dairy free for a while. I slipped up once because I had no food and thought burning cereal would alter the gluten. WRONG. It takes time, but be patient. I also do aloe and acidphilus and calcium because I eat no dairy.

I am glad you are here and have learned about gluten. I feel sad for the girls with eating disorders that are NOT pscyholgocially based, but are due to gluten intolerance. I was also dxed with a form of autism which also has high rates of celiac.

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Hello,

I am 31 and i have recently been diagnosed with gluten allergy. For more than half of my life, i used to see psychologists and psychiatrists due to my depression, anxiety, mood swings, crying spells and overwhelming fatigue and diffuse pains (which were, according to ppl around me, only "in my head"), problems with focusing and problems with sleep. I also used to be very pale and i had problems with puffy eyes. I have been diagnosed with quite a few disorders (majore depressive disorder, some personality disorder, depression/anxiety, etc.) and i became persuaded, that i will stay like this for the rest of my life. In summer 2008 i got a stomach flu, which lasted for 6 weeks. at the end, when i was really, i decided to start a gluten-free diet. it helped and i can tell that never before that i felt so full of energy and really alive. However, in November, i decided to start eating everything. Within two weeks, i was a wreck. my eyes became really swollen, i felt terribly down and i was so tired, that i again lost interest in almost everything. In december, i decided to see an allergologist/immunologist. I have been diagnosed with dust/mite, pollen and gluten allergy. Since then, i immediately went cold turkey on gluten. It has been a few weeks since i ate someting with gluten and i have to say, that i am already improving a lot, both physically and mentally. The difference between being on and off gluten is so big, that nothing can make me go off the diet.

I have also started informing my family and friends about gluten as a main cause of many disorders and i started promoting gluten-free alternatives.

Wish you all good luck and a nice day

Andrea from Europe

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i feel like poop , sore body i dont sleep for like 3 or 4 days , im irratable, i vomit for a good 5 -10 days, crave sugar and bloat up,headaches, and being young i have to try to explain to my friends that this is all a process of gluten attack. Which just ends up with me becoming introverted and giving up on a lot of my relationships as its just easier than to have justify to people why i cant get outta bed etc. But i do agree with ange1 that u have to find what works for you. Its been 5 years for me and im struggling worse then ever with this disease and am still trying to find what works for me. The only thing i have found is to take a s$#&load of xanex or valium to stop the body aches, i only wish it put me to sleep. What does anybody else do as when i have an attack i feel like im coming off drugs and eat all the sugar i can find.

alephknot, i know what u mean about being that person at work, i missed out on a year of school becuase of this, and since then the longest ive held down a job is about 3 months and this year ive been at work for maybe 2 months. ive found that staying with friends who understand and push you to do things is the way to go. obviously your gonna feel sick but ive learnt that usually your not that sick after a few days its just the mental part of it thats holding u back from continuing your life.

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Sounds like yeast overgrowth...acts just like gluten in my system. Ask your doctor to test your urine for yeast...seriously. Sugar feeds yeast (the cravngs for sugar) so avoid all sweeteners, but beware, killing off yeast takes time and you may get sicker before you get better. Don't give up....I've been fighting yeast for almost 2 years, but the migraines and cravings are gone and making progress every day.

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