Everytime I Get Gluten Free For 6 Days Or More I Get Gluten Again

[UnhappyCoeliac]

Im so close to giving up the time and money this bad disease costs me to get a bit of it sprinkled on a chip and i get doggone sick

the microwave wasn't clean

lollies have fkn wheat in them?

the chips were thought to be gluten free but weren't

5-6 days were I felt like poop but been strictly gluten free

Of course these turn of events always happen when I am on a run for far since being diagnosed a year I have not got over 10 days without accidental glutening putiong me back to square one and wasting all previous efforts and I am sick oif it. Alot of people here seem somewhat privileged financially secure buy new pans new food etc etc but for college student this is impossible I am lucky to have food sometimes let alone specially made and cooked with my own utensils

Being gluten free has done f all for me. All it has achieved has cost me time money and enjoyment. I am going for blood test sometime this week and if there is not improvement in my blood results from my constant effort i am ditching these gluten free business and ignoring the disease.

I know it doesn't seem like anyone is following this path and being irrationally but I know at least 4 whop refuse to be tested for celiac or ignore it completely

If the blood tests are not better I be so mad i break my computer

[Jestgar]

It's your body and your life.

[quietmorning01]

I'm glad you're in a place where you can vent. . .sounds like you need a good yell and scream moment!! I'm frustrated today too. . .actually - there's a lot of mixed emotions - I'm thankful they finally have some idea what's going on. . .but I keep getting myself gluted. . .yick.

Being in college has to be tough with this thing. . . I can't say I know what it's like, but I can certainly empathise. . .do you have much support in your friends at all?

I would encourage you not to give up, as the alternative is even worse, from what I read, but it IS your life, and you can be and are the only one who can really decide for you what you can deal with.

I can see that you learned a lot about what is going wrong - and being hyper aware of everything that goes in your mouth is exhausting, I bet the results are exhausting, too. How far are you along in school? Do you have much further to go? Sometimes the answer isn't a full quit or a full gung ho . .. but somewhere in between to maintain until you can change something with your environment - maybe your doc will have some suggestions too.

I hope you get to a place where you feel at least that you're not at it's mercy. It's so difficult to be powerless in a situation. (been there done that tooooo many times!!)

[dilettantesteph]

I've been where you are. Hope things get better.

[YoloGx]

So sorry you are going through this. Making the transition can be very hard.

However, I have discovered that the glutening in itself often makes me angry too. So its kind of its own perpetuating cycle. The thing is to get off of it. It messes with you mind and moods. It gets in the way of understanding and learning things well--and thus school. Not to mention being the root of constant colds and flu etc. plus all its attendant auto immune dangers...

It does not have to be so expensive. If you eat a simple cave man diet of no or few whole grains, with an emphasis on vegetables, fruits, sprouted nuts or seeds, with some soured milk and some untreated meats it can be really cheap as well as very good for you. You could do all this using a small refrigerator and one electric burner with a couple of pots. Invest in a satchel you can keep a cold pack in so you can take your cooked food with you.

Good luck!

Bea

[ang1e0251]

Sorry it's been so hard for you. College has to be a royal pain to be celiac in.

It is maddening to keep getting glutened. I'm not in college and it keeps happening to me. I also am really short on money but I just eat simple foods since that's what I can afford. Even being careful isn't enough to keep me safe at times.

Just make your life decisions the way you would want your closest friend or relative to. If your mom or sister was in your situation, what would you want them to do? Remember there are those that love you and our decisions affect them too.

Hope your feeling better today.

[WW340]

I am sorry you are having a tough time. I can understand how this would be harder while in school. The main issue with eating gluten free is that it requires better planning.

I don't subject myself to risk by having my food planned all the time. I have gluten free chips that I keep in the pantry, and keep a small baggie of them in my car. I always have some sort of gluten free bar, fruit etc. in my purse so that I don't have to take a risk when I am out and about. I keep things like small peanut butter packets and tuna packets with me or in locations I frequent - like home, work, car etc.

There are lots of cheap gluten free items. I don't know what your other sensitivities are, but I eat a lot of eggs, cheese, potatoes, veggies and fruit. I will boil eggs to take with me if I have to go out. I have a small thermal lunch box with a small blue ice bag.

I use very few specialty gluten free items. I do have several of the food tek microwaveable items on hand just in case I start to crave something, but I rarely use them.

[Takala]

So put a bloody paper towel down in the microwave first before you use it. They have paper towels down under, don't they ?

Chips.

Take a raw potato.

Put paper towel in microwave.

Poke the potato and cook it. It cooks fast in a microwave.

Put a piece of tin foil in your pan. Cut the potato up and put it on the foil. Salt the potato with PLAIN SALT. Sprinkle the potato with pepper. If you want herbs, like sage, put that on it. Make up your own herbal gluten-free mix if you want. Sprinkle extra virgin olive oil on the potato. Put the oil in a cruett sprinkler bottle or a chef's sprinkler bottle or a ketchup dispenser so you can sprinkle it fast. Put the pan with the oiled and salted potato under the broiler, and watch it until the potato browns quickly.

Take it out and eat it. Or take it out and take it with you. Pack it in a lunch box.

They have lunch boxes down under, don't they ? Take a roll of paper towels and heat your lunch.

If you do not have a broiler, put the potato in a pan and cook it until it browns. Or you can bake the oiled potato for a while until it browns and crisps.

This is how celiacs eat chips. It is cheaper, better, healthier, safer, and tastes great.

You will be sick and disabled if you try to depend on others to provide food for you.

[SGWhiskers]

I've had days where I feel just like you. 16 days was my record up until this month(7). I also remember being financially strapped in college and having celiac would have made buying groceries all the more difficult. I CAN'T eat anything someone else cooks. It is ALWAYS poisoned no matter how safe it seems. There are some threads around about eating on the cheap. If you are eating anything cooked by a non-celiac, consider that meal your source of gluten. If you have been only cooking for yourself, then consider airborne gluten as a source.

If I had known about my celiac in grad school, I think I would have had an easier time with surviving the demands of my program. I'm fairly certain the disease had been active at least 3 years and wish I had been gluten free then. Seriously consider the risks you will be taking by going back on gluten, but with that said, I could understand going gluten light until you graduate and then immediately going gluten free with the earning of your first paycheck. Then again, I had to quit work and stay home because I was too tired to stay awake more than 3 hours at a time. The risks are very real and you don't know what your body has instore for you if you give up the diet.

Best wishes and I hope you find a way to incorporate your medical needs into your financial status.

[UnhappyCoeliac]

Hello people updating this rant:

Yes today has been fair sh*t.

I have hungry jacks *made without bun, fries and drink are clean.

I have specifally gluten free pizza rolls gluten-free on the box

I have apples broc and carrot

AND i have loose stool I mean seriously wtf. There is no way I could have got gluten today

I am fairly sure I have been clean since the 14th even then it was a tiny amount. I mean I dont get it. But i WILL i hope.

I am going to the doctor fri arvo its maybe been 9mths since diagnosis might ask for another blood test need to know whats going on, have no idea whether i am doing good or bad I strongly suspect bad though, although not quite as bad as a friend of a friend who apprently orders pizzas all the time non gluten-free ha.

The only good thing was I completed 50 mins of weight training with heavy weights for me 60-70 pnds and not pins and needles.

I am going to the doctor fri he is not ignorant but not hugely knowledagble I am gonna push for the blood test and one of two things I feell likely to happen A give up B get encouraged

I just wanna know but I dont know whats going on... i cant tell by 'how i feel'

[ang1e0251]

Yes today has been fair sh*t.I have hungry jacks *made without bun, fries and drink are clean.I have specifally gluten free pizza rolls gluten-free on the box

AND i have loose stool I mean seriously wtf. There is no way I could have got gluten today

Yes, you could have had gluten. Did you make you own food? Sounds like your hungry jacks were at a restaurant. When you eat out there is always a big chance for CC. Like McDonalds fries are controversial for gluten. If fries aren't made in a dedicated fryer they can be CC'd.

Next, the pizza rolls..boxes that say gluten-free doesn't excuse you from checking the label. Some are just erroneously labeled but a lot of them still have gluten but it is the "legally allowable" amount. I believe in Europe that is 20 PPM. Anyone know if this is correct? Anyway, lots of people cannot tolerate that even small amount.

Also if you are having a loose stool, then you obviously do have a way to tell if you are glutened.

I know you are angry. You're probably the angriest poster I've seen for so long. Stop comparing yourself to other people. Your body is telling you with symptoms what it needs for you to do. Stop letting a little bit of flour rule you. Kick the gluten out and start being prepared no matter where you go or what you do. It's like going into a war zone where you don't know where your next meal might come from. Take your backpack of food with you and leave the pity party at home.

[quietmorning01]

Good evening UnhappyC -

I've been meaning to ask you, does your university/college have a department that helps students with disabilities? My husband works for the university where I live and has mentioned many times about the department solely designed for students with disabilites to integrate into their school schedules/life easily and effectively. Celiac disease would be considered as such since it effects so many different things on so many different levels.

Maybe go to your counslor (if there is one available) at your school and ask to see? On the off side chance that they have someone who can be of assistance and support, that might at least take some off your shoulders. . . maybe they can facilitate some changes there at your school to make things easier for you.

Please let us know what your doc says. We're rooting for ya.

[GFinDC]

Hi Unhappy,

Can you cook your own foods at school? That is one way to get rid of the gluten in your diet. If you make all your own foods you can learn what bothers you faster ingredients wise. You may be reacting to more than just gluten after all.

I am not really sure what hungry jacks are to tell the truth. We have flapjacks / pancakes in the states but they are made with flour and aren't gluten free, usually. Unless you buy a gluten-free mix and make them at home. There are a few brands of gluten-free pre-made waffles here, like Van's but I don't know if they sell in Australia or not.

It seems to me the first 3 months are probably the hardest to adjust to the celiac condition. There are plenty of chances of making mistakes and getting glutened by things that don't seem like they would have gluten in them. It takes a while to learn how to avoid it. Mistakes are unavoidable I think. But after you have healed up you might find you recover a little faster from mistakes also.

I am getting over a glutenening myself now. It was one of 2 things in my case, either some shredded coconut with no gluten ingredients listed on the package, or some dried cranberries from the bulk food section at the health store. Neither one should have gluten, but one of them did a number on me. Labels and out to be's don't always work out for us.

[River*]

I don't know if you are male or female but, your make up or kissing rubbing against someone with gluten containing make up would do it. Your toothbrush perhaps? If you are often glutened then you should be changing your toothbrush just as often...well I would. lip balm, lotions, shampoo conditioners, soaps, dish soap? I think our digestive tracts are more sensitive......how many years damage vs how much healing time..the villi have to grow back. Maybe gluten-free flours may be a culprit. You may have a soy intolerance...similar symptoms..theres traces of soy in alot of gluten-free flours. Rather irritating but whatever. I'd rather feel good than bad...even if I'm hungry. hmm...nailpolish. hair spray, gels..

Keep posting..