Puttin In Work

[Junot]

Well I`ve decided to go gluten free as its my last resort to get my life back, I`m not bringing my doctor into this or telling him anything even though im supposed tobe seeing him once every two weeks. I`m 21 years old, I`ve had chronic stomach pain for 7 years.

I also get nauseas as hell and generally feel like poop all day which didn`t make sense since I ate well and play soccer religiously (6+ hours a day of training)I`ve been in and out of the emergency practically every month with stomach pains above my belly button. The pain was so severe I could not walk I could not move, I just sweat and shook like a leaf.Last time I was in the Emergency after waiting 7 hours I finally got my first shot of morphine, 7 shots later and 1 pill the intense stabbing pain would not stop, I was awake for a couple days and after felt tottaly out of it for weeks after, this would happen all the time. My stomach always felt weak, uncomfortable. Sleeping is hell and still is, I always wake up every couple of hours. My asthma gets worse no matter what I do.

I keep going to doctors and have had 3 CT scans, barium tests colonsocopy`s and other stupid tests that all came back with no information. My first doctors told my family I was lying about everything and my second doctor is telling me that its all in my head, last appointment he tried giving me Cipralex (for depression or anxiety)I tried my hardest to explain that I wasn`t depressed, the only reason i`m ever sad is because I cant have a job or a life because I feel like poop ALL THE TIME or i`m in absolutely crazy amounts of pain and cant do ANYTHING. Since that appointment, I havnt gone back since that appointment, I`ve been spending whole entire days on the internet looking for SOMETHING and i`ve landed on this.

I`m not saying im ceoliac or even proven gluten-sensitive all i`m saying is that im gonna try this diet out and with my fourth full day coming up, I havnt had stomach pain ONCE and wake up with what I call `Strong stomach`` where I just wake up and my stomach doesnt feel like play-doh, im s$#&ting more regularly and more pleasantly. Now get this, I work at a Bakery and where I worked was bags and bags and bags of wheat flour, I would have it all over me by the end of the day and I would ALWAYS get sick at work, seems like working there is out of the question now hahah. Anyways i`ll keep bringing updates to see if this cure has worked or not.

[zimmer]

Have you suggested celiac to your doc? It is an easy thing to get a blood test and some information from the results before you quit eating gluten completely. Once you do that it's really hard to get any testing that is accurate.

It would help you to understand what is going on inside you now, and also because at some point you will probably want to know more about your specific case. Also you will have something to compare to if you do repeat tests in the future to see if you are making progress.

My daughter who is 17 has had bad stomachaches forever, and hers stopped too once she quit eating gluten.

good luck and glad you are feeling better!

[Junot]

Have you suggested celiac to your doc? It is an easy thing to get a blood test and some information from the results before you quit eating gluten completely. Once you do that it's really hard to get any testing that is accurate.

It would help you to understand what is going on inside you now, and also because at some point you will probably want to know more about your specific case. Also you will have something to compare to if you do repeat tests in the future to see if you are making progress.

My daughter who is 17 has had bad stomachaches forever, and hers stopped too once she quit eating gluten.

good luck and glad you are feeling better!

I would, but anytime these days I even try talking to my doctor he just gets mad at me and tells me its in my head. Everytime i`ve brought up a food ``allergy`` to any doctor I get the same respons

[ravenwoodglass]

I think im by myself in this one, nothing has worked yet and 4 days in im feeling good, if this ends up working i`ll never need a diagnosis cause i`ll never stop being gluten-free whatever he sees or says, i`ve wasted enough of my life bed ridden.

Your not by yourself in this. You have us and it sounds like your Mom is on board also. Read as much as you can here and it might help to clue your Mom in on the site if she does a lot of cooking for you. Ask any questions you need to and don't get disheartened if you have some ups and downs at first. It takes a bit of time to heal. It sounds like the diet is helping but as was mentioned if you do decide later that you want to be tested you will have to do a lengthy gluten challenge. Many of us suffer for years so your not alone in that either. With the fairly high rate of false negatives in testing some of us have gone through a very large part of our lives dealing with doctors like yours who either won't test, call low positives negatives, or don't even tell us what celiac is or mention the need to try the diet even if tests are negative. Hopefully you have found what is causing your problems and you will continue to feel better.

You are going to have problems with working in a bakery with all the flour flying through the air. You breathe it in and your glutened.

[Junot]

Thanks for the reply, I guess im definitely not alone, I never even would`ve tried gluten-free without finding this forum and after having stomach pain yesterday I had to figure out why it was. My guess was the soy or soy lecithin in the ``non-gluten`` cookies that I purchased it was a weird pain, huuuge stabbing pain for 10 minutes than went away (usually when the pain comes it wont leave THAT QUICK) so I was stoked about how short the pain was for and now today i`ve eaten everything the same as yesterday EXCEPT the cookies and feel good, no more pain or uncomfortableness right now.

I`ve been going around this site and seeing people who weren`t diagnosed for 10 or even 20+ years, its heart breaking to know if someone just actually listened to them for 1 minute everything would`ve been better. I wont be working at the bakey ever again, gotta find another job I guess but I cant work til im healed up anyways.

by the way, rice bread is goooooooooooooood

[ravenwoodglass]

Thanks for the reply, I guess im definitely not alone, I never even would`ve tried gluten-free without finding this forum and after having stomach pain yesterday I had to figure out why it was. My guess was the soy or soy lecithin in the ``non-gluten`` cookies that I purchased it was a weird pain, huuuge stabbing pain for 10 minutes than went away (usually when the pain comes it wont leave THAT QUICK) so I was stoked about how short the pain was for and now today i`ve eaten everything the same as yesterday EXCEPT the cookies and feel good, no more pain or uncomfortableness right now.

I`ve been going around this site and seeing people who weren`t diagnosed for 10 or even 20+ years, its heart breaking to know if someone just actually listened to them for 1 minute everything would`ve been better. I wont be working at the bakey ever again, gotta find another job I guess but I cant work til im healed up anyways.

by the way, rice bread is goooooooooooooood

Great to hear that you found a rice bread you like. If you do have soy sneak in again I have found liquid Pepto Bismal helps a lot with the pain quickly and usually with just one dose. Good for you figuring that out so quickly, it took me a couple years to realize I couldn't do soy.

It is so great that we are having more and more people that are being diagnosed earlier in the condition. I went undiagnosed from childhood through my 40's and life sure would have been so much different it I had been diagnosed when my symptoms first started. It is a big change but so worth it in terms of not just length of life but also quality of life.

I hope you heal quickly and that you find a different job that you really enjoy.

[Junot]

The last five days have been awwwweful, Saturday night I did a soy test to make sure it was the soy that got me, it definitely was but this time the pain was worse, struggled through all of sunday and didnt eat anything until waay late at night (bad idea) barely slept, woke up in crazy pain again, couple hours later finally got out of bed, super hungry but theirs no food, dont eat til late at night again, fall asleep fine, wake up in super amounts of pain (its always a bit delayed, i`ll wake up not feeling right than the super pain wil come through 15-30 minutes later, pain lasts for HOURS and I cant get out of my bed. Finally had an alright day yesterday (just made it to soccer, did NOT feel good there) Finally got enough food in me for one day, fell asleep feeling fine but woke up this morning feeling AWEFUL more pain, i`ve been in bed for hours again and am writing from the bed. My mom has no money and gets mad at me everytime I ask for food or try to tell her about my problem and how serious it is (shes my only connection to money or food but lives at her boyfriends) I go days without eating and I cant stand it, my body keeps crying for food, especially since i`ve started this gluten free diet, I`ve been in and out of jobs for years because of this and am even currently employed at a bakey (but I cant work there) Even my own doctor has told me not to work but I have no money. Anytime I have a good day it just gets ruined because I dont have food to keep the consistency going or money to even buy my own pans or some poop, i`m getting tired of this, theres a way out, I could be ok and get my life back but I have no doggone resources. I seriously dont know what to do. noone in my family knows what im doing because they dont care, i feel like every second im gonna pass out because im so hungry, my stomach just turns and turns and grumbles and I get so light headed and it`ll just make my stomach pain worse. I keep getting hope that somethings gonna change and i`ll be able to take charge of my life but its NEVER possible, I straight up have no resources to do anything, I dont even have change to catch a doggone bus. I`ve told all of this to my doctor, he doesnt give a poop, im confused and feel like quitting life, not because im depressed but because I see no other choice???? theres no way I can work cause im so malnutritioned and keep having these pains everyday because I cant buy what I need to keep my gluten-free soy-free milk-free diet going BUT if I eat gluten or soy (cheaper foods) I get intense stomach pains and end up in the ER so I cant even work anyways, poop THIS

[ravenwoodglass]

The last five days have been awwwweful, Saturday night I did a soy test to make sure it was the soy that got me, it definitely was but this time the pain was worse, struggled through all of sunday and didnt eat anything until waay late at night (bad idea) barely slept, woke up in crazy pain again, couple hours later finally got out of bed, super hungry but theirs no food, dont eat til late at night again, fall asleep fine, wake up in super amounts of pain (its always a bit delayed, i`ll wake up not feeling right than the super pain wil come through 15-30 minutes later, pain lasts for HOURS and I cant get out of my bed. Finally had an alright day yesterday (just made it to soccer, did NOT feel good there) Finally got enough food in me for one day, fell asleep feeling fine but woke up this morning feeling AWEFUL more pain, i`ve been in bed for hours again and am writing from the bed. My mom has no money and gets mad at me everytime I ask for food or try to tell her about my problem and how serious it is (shes my only connection to money or food but lives at her boyfriends) I go days without eating and I cant stand it, my body keeps crying for food, especially since i`ve started this gluten free diet, I`ve been in and out of jobs for years because of this and am even currently employed at a bakey (but I cant work there) Even my own doctor has told me not to work but I have no money. Anytime I have a good day it just gets ruined because I dont have food to keep the consistency going or money to even buy my own pans or some poop, i`m getting tired of this, theres a way out, I could be ok and get my life back but I have no doggone resources. I seriously dont know what to do. noone in my family knows what im doing because they dont care, i feel like every second im gonna pass out because im so hungry, my stomach just turns and turns and grumbles and I get so light headed and it`ll just make my stomach pain worse. I keep getting hope that somethings gonna change and i`ll be able to take charge of my life but its NEVER possible, I straight up have no resources to do anything, I dont even have change to catch a doggone bus. I`ve told all of this to my doctor, he doesnt give a poop, im confused and feel like quitting life, not because im depressed but because I see no other choice???? theres no way I can work cause im so malnutritioned and keep having these pains everyday because I cant buy what I need to keep my gluten-free soy-free milk-free diet going BUT if I eat gluten or soy (cheaper foods) I get intense stomach pains and end up in the ER so I cant even work anyways, poop THIS

You need to do two things, get in touch with Social Services explain your situation and see if you qualify for food stamps. They will likely want you to apply for temporary disability and you should do so. Your doctor has told you that you can't work in your present job and should be able to give you a note to that effect. Social Services may be also able to link you up with programs that can retrain you in a safe occupation. There may even be a possiblity of your finding an apartment that you can afford with the aid of Section 8 housing or some other recourse. A lot depends on the state you live in as some states will only help folks with children but since you have a serious health issue even in those you may be able to get some help. I am assuming you are over 18, if you are not than what is going on is neglect.

[GFinDC]

Hey,

Sounds like you are on the right track with the gluten-free diet. Many people have a period of adjustment to the gluten-free diet where things are kind of back and forth from good to bad. Sometimes for no apparent reason. Some of that back and forth could be due to:

1 not really understanding the food ingredients to avoid,

2 adjustment of the gut bacteria flora to a new balance,

3 healing of the intestinal villi, wounds are kind of sore right?

4 other unidentified food intolerances

5 just plain having a raw, irritated, unphappy gut that needs some time to recover.

So, possible things that can help:

A Eat a very simple diet.

B Eat a limited diet. Not lots and lots of different foods every day. That's confusing.

C Avoid all processed foods for a few months.

D Cook all your own food s from scratch using whole ingredients.

E Avoid foods that are commonly problems for other celiacs, nightshades, dairy, soy, the top 8 food allergens.

F Avoid cross contamination via cooking utensils, work (you figured this one out), shared condiments, pet food, smooching.

G Try a pro-biotic and a digestive enzyme once or twice a week.

H Keep reading this forum.

You don't need a doctor's permission to do the gluten-free diet. And doctors have no cures for celiac disease anyway. So, this is a do it yourself disease really and we help each other out, cause otherwise there wouldn't be much help. So welcome and good health to you!

[Junot]

I live in canada, sorry I should of mentioned that. If I cant get my doctor to write a note for the government I wont be able to get money, he still thinks im lying about everything and that its all in my head. I`m 21 years old,I try to work every single possible day I can and pay for everything myself. I couldnt finish high school, or keep a job or stay in soccer or do ANYTHING with my life because of this, I feel like im being thrown away like a piece of garbage. its messed up, I know alot of people who get government assistance and spend it all on weed, bongs, trips and new golf clubs (not a joke, I know 3 people who lives off government assistance for no reason) and I`ve been telling my doctor(since I was 15) that I have no food. I dont even have glasses or contacts so im pretty much blind and cant work even If I didnt have stomach pains ( my doctor knows this too but didnt say anything). I`ve also asked 5 DIFFERENT doctors wether or not my stomach problems and nausea etc could be due to a food allergy, they always said NO and NEVER mentaioned gluten-free or ANY food allergies (even though he knew I worked in a bakery Too)

I have no money to get new pans ( I live with 3 other people ) so everything I cook with has to be used for them too, basically what i`m saying is I NEED to go gluten-free but I cant, because you need resources, im darned, thats all. I dont get stomach pains if I just dont eat, but when I just dont eat I feel like im gonna die.

[Salax]

I am thinking you need a new doctor.

Any chance of that? I am not sure how that stuff works in Canada.

[sandrad]

Your story of your symptoms sound so much like mine! Im also from Canada.

When i first started having symptoms i was working in a bakery in edmonton...got so sick i had to move back to regina with my parents(we now live near ottawa).

I had dr after dr in regina tell me it was in my head...the only dr that believed me was my family dr(i find having a female dr is better because they seem to understand more).

In jan 2010 is when i really started to get sick...ended up in the er cuz i thought i was havibg a heart attack. Got sent home with what they thought was just acid reflux. I then ended up there again that night. Turned out i had a bad infection but they didnt know what the source was. Spent the weekend in the hospital on iv antibiotics(very strong ones) and morphine. Was sent home with a weeks worth of both antibiotics. Once those were done i was having pain and was sick again...back to the er...i was in the er several times for tgis pain/sickness...

We thought it was the gallbladder but nothing showed on the ultrasound so was sent for a hida scan that came back 35% function but the surgeon said it wasnt bad enough to take out so i continued to suffer till jan this year. I saw a surgeon here and he told me i needed my gallbladder out. Got it out jan 10th but i still have pain.

I wake up every morning with burning pain above my bellybutton that wraps around my torso that goes away when i eat. But sometimes i get the same pain after eating.

I started the gluten free diet 3 weeks ago...also gave up dairy. Since i gave it up ive had diarrhea several times a day but some of my symptoms are starting to go away. I have neuropathy in my hands and feet that ive noticed this last week have lessoned up quite a bit...im just tired of being sick.

Where r u from in canada? As you can see ive lived all over the place.

I really hope your situation gets better. I find the diet tough cuz my dad doesnt understand that he cant slice his bread then mine right after and ive also been craving foods this last week...pastries being put right in front of my face...its tough to say no.

[Junot]

I`m trying to get in touch with a social worker but I need my SIN number to do that, and I need money to get my SIN card. Hmmmmm.

I`m on day 21, I`ve had two bad stomach pains since than and alot of nausea and just feeling like absolute poop. I have no way to tell if anything is getting cross contaminated cause I dont really have anything thats my own that I can use, I also still have no food, in a dire position right now. Feeling atleast better than my stomach feeling like poop 100% of the time I can actually get some good days in right now, just need consistency and resources. Not gonna stop the diet though the pains is worse than the hunger. gotta keep troopin.

Also tried a NON-GMO soy chocolate cookie, I didnt get pains, I was bewildered. anyone else tried it???

Im from B.C my friend, Victoria. The doctors seem to wanna do anything BUT listen to their patients, I can only guess how many people have these problems but are now drugged up on anti-depressants and A.D.D pills instead only because they couldnt find out about food allergies.

My doctors still a dink, I`ve decided to go Rambo style next time I see him, Go big or go home. I`m gonna get my point across and demand what I want, if he doesnt like it than theres n point in seeing him again. Im tired of being nice and passive to the doctors when I need something done NOW instead of 6-12 months from now. He`s put me on drugs that i`d never wanna touch and I fully regret ever taking now cause they had nothing to do with my problem.

I got a fever and a blasting headache, I havn`t been feeling good lately but the stomach pain is down so im stoked about that, I know it just has to do with getting what my body needs.

[GFinDC]

Food allergies are different than food intolerances. Allergies are an IgE antibodie reaction. Food intolerances are IgA and IgG reactions, maybe some others too. So asking for food allergy tests won't detect food intolerances. There is no harm in getting both done though. There aren't many food intolerance tests available though. Enterolab does some, and lactose intolerance testing is available also. Celiac causes antibodies to form that can be tested for in the blood also.

[Junot]

Been sick for a week and a half now, pain wont go away. everything im eating is driving my body to death, im puking for no other reason but because the pain is so much. went to the ER last night, they made e wait 6 hours I said screw it and left. Do they reallyy want me to wait in this loud ass waiting room with bright ass lights family guy on full blast and i cant even stay in the washroom cause other people need it. Meanwhile they make me wait 5-6 hours for morphine when I told them it could be down by then. I had to leave, i couldnt deal with the same s$#& again, cry for someone to listen to me so i leave the next day and nothing gets done, they let me go but they dont now the pain happens the nextday and the next day. I feel so screwed, i puked out the only thing i ate for 5 days and im getting no sleep, i have an insanely loud ringing in my ear that wont stop, i hate doctors. They give me nothing for pain when im at home an get pissy at me when i go to the ER.