So Sick And I Keep Making Mistakes

[snugglykindness]

i'm new here and i wanted to post a intro message earlier but i feel so horrible i can barely do anything.

 

so here's the scoop; i'v been super sick with lots of digestive problems and fatigue for a few months now and they got increasingly worse. i didn't know what was wrong with me and as usual i spent for ever trying to figure whats wrong with me on my own with the internet. the last thing i would ever suspect was gluten but get this in the past few months i'v been eating more and more bread to where it became more then half of my food consumption.

 

finally went and saw my doctor and he suggested it might be a gluten allergy but he didn't stress it (or maybe i wasn't paying strong enough attention). when i asked him about the gluten allergy i asked how "could it be? i have no signs of an allergy" what i didn't realize is that allergies don't have to nessasarily have outward manifestations such as a rash, runny nose or sneezing which when he said "sometimes a gluten allergy doesn't have any symptoms" i think i didn't grasp that correctly cause he must of meant outward physical symptoms.

 

i never thought that an allergy could cause digestive problems or a stuffy head filled with packing foam. he put me down for a gluten blood test amongst other things and after about an hour or so with him i left.

 

then a few days later i remembered that my brother stopped eating gluten so i gave him a ring and what he said just blew my mind. his symptoms were 100% identical to mine and when he stopped eating gluten he said they went away and things got better almost immediately.

 

this was enough for me to try giving up gluten so i did and the last time i ate it was on a wensday and on the following Saturday i felt like super man and the beginning of Sunday as well. that is till i bought a dark chocolate bar at the super market, a few bites and 20 min later boom right back in hell all over again (it also contained soy lecithin which as i write below i suspect i might be allergic to as well).

 

i saw what was possible on that saturday and early sunday i felt like my old self again it was amazing but since that sunday which was a week ago now i have not been able to get out of this nightmare again.

 

i keep making mistakes my head is so clouded i can't concentrate on anything and so i eat things with out thinking enough if they could possibly be cross contaminated. i ate some soy lecithin which set me off (could also be a soy allergy). then again at midnight i ate some raw tahini paste and even worse then the crap i already felt.

 

i can't think straight, i can't stop thinking my mind goes in circles with questions, solutions and despair; "am i allergic to a lot of things? maybe it i stop eating this or only eating that? what if this what if that?" and on and on and on my mind just won't stop and cause its so full of dust-balls right now it goes in loops like an acid trip.

 

then i get really depressed feeling like it will never end and feeling suicidal (i stress feeling i have no intent). i'm so distressed and despondent i just feel like i can't get this done on my own like i need somebody here at my house to think for me and keep me safe from the things i eat.

 

i haven't cleaned out my toaster or toaster oven i'm in such a fog, so weak with so much pressure in my head and fatigue i can't seem to do much more then lay in bed all day or at most sit at the computer for a bit and maybe watch some TV. certainly cleaning is out of the question in this state and this place is a mess.

 

i want to read the newbie 101 but sitting at the computer and reading for so long is so hard i just want this to be over. that saturday when i was free i saw parts of me i thought were dead long ago; my thinking was so clear and sharp. i had so much energy and concentration i studied for hours on end and i want it back. i really want the old me back i miss it so much and i thought it was dead but its not its just drowning in food allergies. 

 

i should also mention its not just my brother who had this problem i also spoke to my cousin and he had it to. he was so bad he looked like he was in a Nazi concentration camp, so thin and skeleton like then he stopped eating wheat and all gluten products and boom now he's a healthy looking guy.

 

i haven't gotten tested for celiac or even a blood test i don't c the point i know what happened after i stopped eating it and i know what happened within my immediate family with 2 people on my mothers side. also my mom stopped eating it and she's feeling a lot better already but she had not gotten to the point of either my brother or cousin by the time she stopped about a week ago.

 

anyway i don't even know where i'm going with this i'm just so sick of being sick and i want out of this hell. i want these setbacks to stop i just feel awful.

 

so now its no more prepackaged foods in jars or anything unless it says gluten free which is also a problem cause i don't read the local language well enough to find what and where on the package this info would be.

 

i'v got to be so careful and i guess just accept that my mind is going to be going in torturous circles till i come back up for air again after the allergy subsides.

 

i guess i'm just trying to say this sux and if anybody has anything to respond with that would be great.

 

this sux

[Juliebove]

If it is gluten...  Don't bother cleaning out the toaster.  Toss it or give it away and buy a new one.  There is now way to clean it well enough.

 

What kind of Dr. did you see?  Did he/she say IgG or IgE allergy?  IgE is the life threatening kind.  IgG is also known a intolernance or sensetivity.  My daughter had IgG to wheat, gluten and other things.  She would get sick to her stomach and couldn't think or concentrate.  Sounds like what you have.

 

For the time being you'd be best to stick to simply, whole foods.  Plain rice, fruits and vegetables, plain, easy to digest meats like chicken which you have cooked at home.

[kareng]

Celiac disease isn't an allergy to gluten. There really isn't an allergy to gluten. You can be allergic to wheat but your symptoms don't really seem like an allergy.

Why not get tested for Celiac before you completely stop eating gluten? Then you will know where you stand. You will have a diagnosis so you don't doubt yourself. You will have a diagnosis to use for things like school, getting your own kids tested, if you are every hospitalized, etc.

Read the newbie thread in the Coping section for some basics.

https://www.celiac.com/forums/topic/91878-newbie-info-101/#entry896943

[snugglykindness]

yea sorry allergy just was a word i misused i meant intolerance. the reason i don't care to get tested is both my brother and cousin tested negative for celiac and negative for gluten anti-bodies. yet they both stopped eating gluten and got completely better from there awful symptoms which were so much like mine. 

 

in order to get tested i understand u have to keep eating gluten which i don't want to do. i saw what happened after a few days and then it hit me again after i ate something with traces of gluten but for certain had soy lecithin. so i'm doing guess work but thats what my relatives did (and they were in terrible shape) and it worked for them hopefully it will work for me.

 

either way i want to stop eating gluten after reading and learning about it it just seems like bad news for every one. what ever it is it has to do with food and i'v noticed it happened every time after i ate bread once it was brought to my attention and when i stopped eating it things got better.

 

now i'm finding that soy lecithin also seems to be a problem so i probably have an intolerance to that. either way a test is not going to change those things one way or the other they happened and imminently after eating certain things (gluten and soy lecithin).

[dilettantesteph]

I can really relate to feeling terribly sick and not having a clear mind to be able to deal with it all.  Things are so much better now.   Try to make good decisions and feel confident that things will improve.  Find some good doctors to help.  It will be a challenge that you can handle.

[livinthelife]

Oh man I'm so sorry you feel this bad. Been there. You need to eat whole foods with simple seasonings. Nothing processed. Not one thing. Maybe even no dairy at first.

 

It may seem insurmountable at first, but I promise it's not. Sautéed chicken in a little olive oil and your favorite veggie. Make enough in your new pan for plenty of leftovers for the week! I love Larabars for a snack. Find what you love and that is good for you and embrace it. You can do it. It's totally worth it. 

 

It's not always easy not to "grab and go" at a gas station or a fast food restaurant but the thought of foggy head and several days in the bathroom keeps me very honest. Admittedly, the no fast food takes some planning ahead but you'll get used to it! 

 

Can you call your doc and BEG for at least the bloodwork as soon as possible? Sometimes you don't even need to see your doctor for that. I had one doctor tell me that if he didn't know better he'd think I had celiac. He didn't test me for it. I found another doctor who tested me inside and out. Lo and behold! After the shock wore off, my life is so much better.

 

I hope you feel better quickly. Let us know how you are.

[cahill]

Yeap this sux

 

Take a very deep breath and know that we do understand   Give your self a break , you are not going to be perfect . It takes time and even then we make mistakes.

 

When you are ready to go gluten free ( after all your testing is done ) try to stick to whole foods. Ask many questions .

 

 Oh and .... Soy is evil , EVIL I say My reaction to soy is as intense as my reaction to  gluten .

[w8in4dave]

Right now I am on a "No Processed food diet" It is hard at first. Don't run out and buy a bunch of Gluten Free stuff. Really I think some of it is as bad for you as Gluten it self... Not really but yea! There are some very knowledgeable people here so try and take the advise of the ones who have been doing this for years! There is a dinner thread thats wonderful and will give you some great ideas. Good luck! And let us know how your doing. 

[snugglykindness]

hey guys thanks for all ur responses they really r great. i want to respond but i'm just so toast i had no sleep last night and have been super messed up but i'v been reading them and taking in all the information. i'l be back with more when i'm feeling at least a little better then this which is one of the worst days ever.

[anti-soprano]

What country are you living in? What language is spoken?

[GFinDC]

Hi SK,

 

Welcome to the forum!

 

If you call your doctor and ask for a blood test right away, you may get an answer without having to go back on eating gluten.  It's simple thing to have the blood drawn, only takes a few minutes.  Otherwise if you decide to get tested later you will have to eat gluten for up to 3 months before getting tested.  Remember it's lifetime diet so it may be worth getting tested now.

 

It's really helpful when starting the gluten-free diet to stick with whole foods cooked at home.  Just skip all the processed foods to start off.  You'll  end up eating a lot of meat, veggies, nuts, fruit, and maybe some dairy.  Although many people have problems with dairy at the beginning.    Think about eating a very simple. basic diet for a while.

 

Going gluten-free doesn't automatically heal us though.  The antibodies in the body will slowly decline over time.  While you may feel better early on, it is not unusual for people to have ongoing digestive symptoms for weeks or months after going gluten-free.  Some people even have withdrawal like symptoms for a few weeks.

 

It's not a diet that most people get right in jsu ta few weeks.  It can take some time to learn the ropes and really get all the gluten out of your diet, plus all the possible cross-contamination (cc).  Plus people often report symptoms/reactions getting stronger not long after being gluten-free.  So even a little bit of gluten may cause a reaction, and often does.  A little bit as in, you can't even see it.  Half a crumb or less.  The immune system is very sensitive and reacts strongly.  If it didn't we would all die of colds etc very quickly.

 

Anyhow, stick around and read here as there are lots of helpful people around who live with celiac disease every day.

[snugglykindness]

hey people, so i'm doing much better now and gonna try and reply to some of the things written here. its been great reading all ur responses thanx so much. 

 

anyway i started taking more digestive enzymes and betaine HCL. around 4-5 enzymes and 5 grams of Betaine HCL and its really made a huge difference. i'm back on my feet and getting well.

 

anyway i'm done with the gluten thing and commiting to a gluten free diet. i'm learned to much about gluten that i don't care if i have celiac or not i'm done with it. just check out this video and tell me who would not be convinced gluten is bad for everybody:

 

i had a blood test very recently and it was pretty messed up. i wasn't tested for gluten but i'm not going to start eating it again in order to be tested i'm fine with out it. i try not to let my life revolve so much around food so canceling out a lot of things even though bread is the tastiest food in the world i'v given up much harder things in my life already that this is pretty insignificant compared to the others.

 

i don't eat junk food and have not eaten fast food in more years then i can remember and i'm not going to start eating all the gluten free junk food (ie the phoney breads and all the snack/candies).

 

really they remind me of when i became a vegetarian for 17 years (which gladly ended a few years ago). i went and bought all the fake meats and ate all junk and it certainly wasn't any healthier then eating meat. but it was gimicky and i fell into it and i'm not interested in ever repeating that again so im just going to eat even healthier then i had already been just minus the bread and anything with gluten in it.

 

the language spoken in the country i live in is Hebrew and i'm not very proficient with it.

 

thanx again for all ur suggestions, advice and support i'l be checking out more stuff on this forum it seems pretty good.

 

 

 

Oh man I'm so sorry you feel this bad. Been there. You need to eat whole foods with simple seasonings. Nothing processed. Not one thing. Maybe even no dairy at first.

 

It may seem insurmountable at first, but I promise it's not. Sautéed chicken in a little olive oil and your favorite veggie. Make enough in your new pan for plenty of leftovers for the week! I love Larabars for a snack. Find what you love and that is good for you and embrace it. You can do it. It's totally worth it. 

 

It's not always easy not to "grab and go" at a gas station or a fast food restaurant but the thought of foggy head and several days in the bathroom keeps me very honest. Admittedly, the no fast food takes some planning ahead but you'll get used to it! 

 

Can you call your doc and BEG for at least the bloodwork as soon as possible? Sometimes you don't even need to see your doctor for that. I had one doctor tell me that if he didn't know better he'd think I had celiac. He didn't test me for it. I found another doctor who tested me inside and out. Lo and behold! After the shock wore off, my life is so much better.

 

I hope you feel better quickly. Let us know how you are.

 

 

Yeap this sux

 

Take a very deep breath and know that we do understand   Give your self a break , you are not going to be perfect . It takes time and even then we make mistakes.

 

When you are ready to go gluten free ( after all your testing is done ) try to stick to whole foods. Ask many questions .

 

 Oh and .... Soy is evil , EVIL I say My reaction to soy is as intense as my reaction to  gluten .

 

 

Right now I am on a "No Processed food diet" It is hard at first. Don't run out and buy a bunch of Gluten Free stuff. Really I think some of it is as bad for you as Gluten it self... Not really but yea! There are some very knowledgeable people here so try and take the advise of the ones who have been doing this for years! There is a dinner thread thats wonderful and will give you some great ideas. Good luck! And let us know how your doing. 

 

 

What country are you living in? What language is spoken?

[anti-soprano]

Here are some things I found.  Sorry if you've already done a similar search and this is therefore redundant.  I'm also not sure if you're in Isreal or Palestine, but maybe they're helpful nonetheless.

 

Open Original Shared Link

Includes a dining card in Hebrew to give to chefs (not sure how interested you are in eating out...It's probably best to lie low for a bit before venturing out)

Open Original Shared Link

This one has info on gluten free food items for sale in grocery stores as well as what "gluten free" and "contains gluten" look like in Hebrew.  Yikes.  Good luck with that!

 

Open Original Shared Link

[West Coast Canuck]

Glad you're doing better.

About 6 weeks ago an antibody blood test pretty much confirmed that I have celiac disease.

That would explain the bloating, fatigue, stomach pulsing, and palpitations I experienced starting early last year.

Don't get discouraged if you have ups and downs as you recover. I'm having plenty of them myself, as the intestines have been under attack for quite a while apparently, and they won't recover in just a few weeks. Still, I am noticing gradual improvement. Hang in there, and good luck.