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Apparently You Guys Were Right, It's All In My Head!


Renegade

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Renegade Contributor

Drop the oats. Many of us react to even gluten free oats. Drop them for a month or so and see if things improve.

I had dropped oat for 1 month and a half, I reintroduced them lately because they don't cause a reaction as much as other stuff, At this point I'll want to get an official celiac diagnostic, I am sick of aiming blindly to see what is making me sick, could be a bacteria for all I know, so if it's gluten then I wanna be 100% sure so that go on a gluten-free diet for months or even years without knowing if that was officially my problem. Gonna have to eat gluten though I guess but at least I'll know, will see what the doctors recommend. I been really careful about cross-contamination so I know I should not be getting gluten from it, but I been using the utensil from work that are always in contact with gluten PRIOR to being washed, they get washed in a dishwasher machine and someone from here told me it should be fine.


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Tbolt47 Newbie

Renegade,

 

What type of work do you do ? Are you in an environment that  may exposes you to chemicals or other toxins ?

Renegade Contributor

Renegade,

 

What type of work do you do ? Are you in an environment that  may exposes you to chemicals or other toxins ?

I work in an office at IT support, mostly over the phone but I only been doing this for a month and a half, I been getting those issues for 4 months now and I was unemployment before working there, I also had part time job in a gym for another month an a half as well, before the job I'm doing now.

Tbolt47 Newbie

I work in an office at IT support, mostly over the phone but I only been doing this for a month and a half, I been getting those issues for 4 months now and I was unemployment before working there, I also had part time job in a gym for another month an a half as well, before the job I'm doing now.

 There are a number of Auto Immune diseases that share the same constellation of symptoms presented with  Celiac( Histamine Intolerance also share's a similar profile of symptoms). Some of these are known to be triggered by exposure to certain chemicals.  Not that you necessarily have to be exposed at work.

deals88 Rookie

I dont think your being extreme enough i literally would eat like rice for a whole week if it didnt make me sick and then see how i feel, if your fine then add one thing and go on, all this arrangement of food youve tried and droped could be endless. I dont even know your symptoms do u mind listing them quick?

Renegade Contributor

I dont think your being extreme enough i literally would eat like rice for a whole week if it didnt make me sick and then see how i feel, if your fine then add one thing and go on, all this arrangement of food youve tried and droped could be endless. I dont even know your symptoms do u mind listing them quick?

I'll give this a shot, I'll try to eat the same thing day and night, since I got to vitamin deficiency apparently well this shouldn't be a problem, next week is when I get off work so doing this will be much easier, I'll go on a fasting as right now there is no way I can know what I react to because ANY yes anything I eat gives me pain sometime instantly sometime after hours, it always get worse as the day goes since of course it reach my gut and I eat throughout the day.

Symptoms include:

 

Inconsistent neck pain, some day I couldn't even keep my face straight.

Inconsistent eye burn, some days my eyes would burn so bad I would have to close them for as long as possible, just to make it through a normal day then go sleep for 12hours just to rest my eyes.

Shortness of breathe, it seems something is pressure my lung and prevent me from breathing deeply which makes me run out of stamina by just breathing.

Feeling of inflammation in my skull,neck,throat like some pressure all over these area,

Here is a long list of gastro symptoms:

Pain while digesting, sometime it feels like a pressure in my stomach or liver or colon or intestines.

Digestive issue, food won't fully digest or cause bloating when I eat

Intestinal cramps, those are the worst, I get uncontrollable spasm in my gut area.

Constipation.

Extreme tiredness, just climbing the stair takes a lot of energy, this come from someone who been doing exercise 3 times a week for the past 2 years, which btw I had to quit a 5 weeks ago because I am too drained now.

And bunch of other stuff like constant drive to pee at night to numbness in my fingers, arms, bone pain in my right leg when I walk and I am sparing some more.

deals88 Rookie

Yes do it, pick just a couple of items and eat them for a whole week nothing else, if one of the items causes pain drop it straight away and replace it. Mnn some of your symptoms i havnt experience with but a good few i dont.

 

Neck pain i dont understand, eye burn can be from acid reflux drying thier eyes and other glands. I still get this.

Shortness of breathe sounds like the doctor should be really focusing on you.

 

All digestion issues i think most people get sounds like your  body has had it so much now evrerything piece of food is hurting though every peice of food is not causing the problem. What has the doctor said to you? These sound like way 2 many to be ingored


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dilettantesteph Collaborator

I agree with deals.  It can take a week to really know if I react to something or not.  Also, in my case, I show the reaction mainly the next day.  At that point it can be anything I ate the day before.  I also needed to eat hardly anything for awhile in order to figure out what I could eat.  You don't want a limited diet like that for a long time, but a few weeks to figure things out worked fine for me.  I worked on getting all the food groups covered.

Renegade Contributor

Yes do it, pick just a couple of items and eat them for a whole week nothing else, if one of the items causes pain drop it straight away and replace it. Mnn some of your symptoms i havnt experience with but a good few i dont.

 

Neck pain i dont understand, eye burn can be from acid reflux drying thier eyes and other glands. I still get this.

Shortness of breathe sounds like the doctor should be really focusing on you.

 

All digestion issues i think most people get sounds like your  body has had it so much now everything piece of food is hurting though every pace of food is not causing the problem. What has the doctor said to you? These sound like way 2 many to be ignored

Had 2 doctors, the 1st one gave me a piece of paper sent me me home saying it could be gluten intolerance, never mentioned the word celiac.

 

2 months later I saw another one at a clinic and she got me tested for all the things you see on the other page and I got 2 more test coming, colon/intestine and stomach test next month, She said if that doesn't work then I should go see a GI but I really want to get my breathing looked into as well.

Chrisz1000 Newbie

Hi Renegade.

 

I'm of a similar age, occupation and background and can relate to what you just said (being previously fit, now fatigued, similar mindset in tackling this problem).

 

Most of your symptoms I had leading up to the start of my gluten free life. A lot of your symptoms I developed after starting the gluten free life. Almost all of the symptoms have now gone, 5 months after starting the gluten free life.

 

Its worth reminding you that you are in the early stages of recovery. The first 2 months gluten free were ridiculous for me - constantly changing symptoms with no pattern or root cause. After 2.5 to 3 months things plateau'd, the list of symptoms got smaller, and then 3.5 to 5 months everything settled and looked much better. I consider myself to be recovering quickly.

 

My advice, whether you choose to accept it is your choice - keep gluten-free and be patient. You MAY have mild depression, stress and underlying anxiety through gluten intolerance/celiac/gluten allergy/whatever. I didn't realise I had depression nor anxiety until it went away after sticking to the gluten free lifestyle. Lots of nasty little behaviours suddenly disappeared.

 

In relation to the lactose thing - I love lacto-free milk too. Its amazing. I do still have symptoms with other products that milk is in - like bread and pizza and pasta (all gluten-free of course). These contain full milk with lactose. If you ARE lactose intolerant those products will cause you issues. If you have a milk ALLERGY then you will have issues for sure, but you're OK with lacto-free so you can't have milk allergy.

 

Hope this helps.

 

Oh, and I'd drop the weed too. Causes all kinds of mental weirdness which might explain some of your rants at folks. Play nice :)

Renegade Contributor

Hi Renegade.

 

I'm of a similar age, occupation and background and can relate to what you just said (being previously fit, now fatigued, similar mindset in tackling this problem).

 

Most of your symptoms I had leading up to the start of my gluten free life. A lot of your symptoms I developed after starting the gluten free life. Almost all of the symptoms have now gone, 5 months after starting the gluten free life.

 

Its worth reminding you that you are in the early stages of recovery. The first 2 months gluten free were ridiculous for me - constantly changing symptoms with no pattern or root cause. After 2.5 to 3 months things plateau'd, the list of symptoms got smaller, and then 3.5 to 5 months everything settled and looked much better. I consider myself to be recovering quickly.

 

My advice, whether you choose to accept it is your choice - keep gluten-free and be patient. You MAY have mild depression, stress and underlying anxiety through gluten intolerance/celiac/gluten allergy/whatever. I didn't realise I had depression nor anxiety until it went away after sticking to the gluten free lifestyle. Lots of nasty little behaviours suddenly disappeared.

 

In relation to the lactose thing - I love lacto-free milk too. Its amazing. I do still have symptoms with other products that milk is in - like bread and pizza and pasta (all gluten-free of course). These contain full milk with lactose. If you ARE lactose intolerant those products will cause you issues. If you have a milk ALLERGY then you will have issues for sure, but you're OK with lacto-free so you can't have milk allergy.

 

Hope this helps.

 

Oh, and I'd drop the weed too. Causes all kinds of mental weirdness which might explain some of your rants at folks. Play nice :)

I'll give up all the foods I like before I drop weed, in fact if i have to drop weed then might as well eat gluten to my death, i lost workout, peanut butter, probably going to have to drop caffeine too, and many other things that I could do when i was healthy but I will not drop weed, if it makes me sick I'll find an alternative, weed is what I love the most so dropping it just make it meaningless for me to even recover. Weed prevents me from going insane not the other way around.

 

I didn't know about the milk in the gluten free bread and pasta, I have rice pasta when i eat them, I just looked at my cereal and they don't mention milk but they mention possibly in contact with soy and nuts, knowing how I have a nut reaction I wonder how bad this can be, it's pretty confusing because I get a reaction from water too it seems so yea, cut water too? lol

Chrisz1000 Newbie

Ha fair enough. Man's got his priorities!

 

Yep. Its scary how many things contain milk. Don't go insane, like a bag of crisps (or chips over the pond, right?) may contain milk in the flavouring but that'll be a relatively small amount. Items such as bread, pasta, pizza may contain milk or milk protein, depending on the manufacturer. Caffeine... I found it beneficial to cut it down to 1 cup a day rather than the 4 I was having to stay awake 'cos of the fatigue. As time goes on the fatigue improves and 1 cup is do-able.

 

It will feel like you can't eat anything yes, but things get better. I realised this at the start of month 4. Still got a way to go.

 

I started excercise again 3 weeks ago (so 4month 1 week into diet) with 3 sessions a week now. I am weak as hell, no muscle nor stamina and thats pretty depressing. 3 weeks in though, and I am improving. I have a 'symptom' diary which helps, I can look back and see how I reacted to 10mins excercise and look now at how the same reaction now comes with 30mins excercise. Same for food symptoms - a diary can help you see how you are improving with time, I recommend it if you haven't got one already.

w8in4dave Community Regular

My daughter sent me to this sight. It is very interesting and may help you out.

 

 

Open Original Shared Link

w8in4dave Community Regular

Sorry wrong link this is the one I ment to post.

 

 

Open Original Shared Link

kareng Grand Master

Sorry wrong link this is the one I ment to post.

 

 

Open Original Shared Link

 

 

This is not scientific evidence - this is just a person's blog.

 

 

Open Original Shared Link

What’s with all the talk about certain types of food causing “cross-reactivity?”

There is not yet reliable data about cross-reactivity. As for the alleged possibility that many gluten-free foods or drinks (such as coffee, milk, orange juice, etc.) would trigger symptoms in celiac individuals due to hidden antigens mimicking gluten or cross-reacting with anti-gluten antibodies, it must be clearly stated that this is all false information, devoid of any scientific basis, and must be rejected as untrue.

Renegade Contributor

Ha fair enough. Man's got his priorities!

 

Yep. Its scary how many things contain milk. Don't go insane, like a bag of crisps (or chips over the pond, right?) may contain milk in the flavouring but that'll be a relatively small amount. Items such as bread, pasta, pizza may contain milk or milk protein, depending on the manufacturer. Caffeine... I found it beneficial to cut it down to 1 cup a day rather than the 4 I was having to stay awake 'cos of the fatigue. As time goes on the fatigue improves and 1 cup is do-able.

 

It will feel like you can't eat anything yes, but things get better. I realised this at the start of month 4. Still got a way to go.

 

I started excercise again 3 weeks ago (so 4month 1 week into diet) with 3 sessions a week now. I am weak as hell, no muscle nor stamina and thats pretty depressing. 3 weeks in though, and I am improving. I have a 'symptom' diary which helps, I can look back and see how I reacted to 10mins excercise and look now at how the same reaction now comes with 30mins excercise. Same for food symptoms - a diary can help you see how you are improving with time, I recommend it if you haven't got one already.

This is very encouraging, when I go fasting I plan to eat just eggs for a few days then try to add fruits one type at a time, like starting with mango as trying mixed berries would not be specific enough, I could always react to strawberries and not blueberries and thus get a reaction. it's pretty much impossible to do now as starving while working is too hard but when I am off work for an undermined time then i can spend all this energy healing and fasting. I actually decided to workout 30mins yesterday, just forearm and I did good. I'm looking forward to reintroduce more workout sessions when i do that as well as i won't need bare survival energy to work. Reason i been ingesting caffeine,stopping exercise and not fasting yet is because i need as much energy as I can to work.

 

Thanks for that link w8in4dave, I do feel EXACTLY the same as when i was ingesting gluten food from certain food, sometime even worse, again it is just so hard to know because sometime I react instantly then sometime I react 3 hours later, and being so hungry at all time I try to eat every 3 so when i feel bad instantly it could be from a past food, I would need to get a doctor to prescribe me for a food allergy test but I'll need to go on a fasting in the mean time, it's pretty much the only way I will be able to tell I guess.

 

I would wanna start on eating just eats as they are filling and full of good nutriments but seeing as it's on that list I don't know, they don't seem to make me feel bad but maybe they only do many hours later, how to know anymore...

 

Edit: yep, just had an apple and it feels my gut is gonna explode, *sigh* allergic to food is really what it is, I feel that way out of ANY food.

dilettantesteph Collaborator

Envelopes are gluten free, but licking them gives me glutening symptoms.  I am sensitive to very low levels and lots of gluten-free things give me glutening symptoms.  Are you using rolling papers?  Can you switch to a pipe?

w8in4dave Community Regular

This is very encouraging, when I go fasting I plan to eat just eggs for a few days then try to add fruits one type at a time, like starting with mango as trying mixed berries would not be specific enough, I could always react to strawberries and not blueberries and thus get a reaction. it's pretty much impossible to do now as starving while working is too hard but when I am off work for an undermined time then i can spend all this energy healing and fasting. I actually decided to workout 30mins yesterday, just forearm and I did good. I'm looking forward to reintroduce more workout sessions when i do that as well as i won't need bare survival energy to work. Reason i been ingesting caffeine,stopping exercise and not fasting yet is because i need as much energy as I can to work.

 

Thanks for that link w8in4dave, I do feel EXACTLY the same as when i was ingesting gluten food from certain food, sometime even worse, again it is just so hard to know because sometime I react instantly then sometime I react 3 hours later, and being so hungry at all time I try to eat every 3 so when i feel bad instantly it could be from a past food, I would need to get a doctor to prescribe me for a food allergy test but I'll need to go on a fasting in the mean time, it's pretty much the only way I will be able to tell I guess.

 

I would wanna start on eating just eats as they are filling and full of good nutriments but seeing as it's on that list I don't know, they don't seem to make me feel bad but maybe they only do many hours later, how to know anymore...

 

Edit: yep, just had an apple and it feels my gut is gonna explode, *sigh* allergic to food is really what it is, I feel that way out of ANY food.

Your welcome,

you kinda remind me of my daughter and some of her problems, she sent me to that site and when I was going thru this thread I thought "I need to find that site" I hope you find your answers! It is hard and frustrating!! And sometimes you do think your going crazy and it is all in your head. But just keep trying!! Don't let it get ya down!! You know your body!! You know there is something wrong!! Just keep at it!! One day I am sure you will figure it out and the light will come on!! You will be saying "Well no wonder" I felt this way and that way!! And really someone said on this site "we tend to blame everything on Celiac" You may have to search eles where to find your answers. Hope you find them soon. 

w8in4dave Community Regular

This is not scientific evidence - this is just a person's blog.

 

 

Open Original Shared Link

What’s with all the talk about certain types of food causing “cross-reactivity?”

There is not yet reliable data about cross-reactivity. As for the alleged possibility that many gluten-free foods or drinks (such as coffee, milk, orange juice, etc.) would trigger symptoms in celiac individuals due to hidden antigens mimicking gluten or cross-reacting with anti-gluten antibodies, it must be clearly stated that this is all false information, devoid of any scientific basis, and must be rejected as untrue.

I realize what your saying, no scientific proof, but it sure helped my daughter. Sometimes just because there is no Scientific info doesn't make it untrue. Just means there is no scientific info. 

kareng Grand Master

I realize what your saying, no scientific proof, but it sure helped my daughter. Sometimes just because there is no Scientific info doesn't make it untrue. Just means there is no scientific info. 

 

As you have been around long enough to see , this forum likes info based on legitimate sources.  We don't like to spread internet rumors and misinformation.

Renegade Contributor

Envelopes are gluten free, but licking them gives me glutening symptoms.  I am sensitive to very low levels and lots of gluten-free things give me glutening symptoms.  Are you using rolling papers?  Can you switch to a pipe?

I use a pipe, I used to have paper but been using a pipe for a while, initially I though weed made me feel bad, I don't think it does, I am actually smoking hash not weed, which imo is better, it's mostly THC and not all the other chemical in weed.

I think it just makes me more aware of what is already there, I don't get pain when i smoke weed, the pain is already here, I can just be in touch with my crappy broken self more. It sure as hell doesn't make my breathing easier, I'll give you that, but when I work I go a full day without smoking and it's just as bad so I smoke it anyway as I am just used to not breathing much at this point, and it didn't kill me right? So being short on breathing for hours is manageable, doesn't kill me...

answerseeker Enthusiast

I am sensitive to very low levels and lots of gluten-free things give me glutening symptoms.

Same here. I can't eat the gluten free commercial products. All my symptoms came back when I introduced these products to my diet. Now I'm all messed up again after doing so well for a month. Whole foods is the best option. Cooked not raw

deals88 Rookie

I cant believe your eating cereal that may contain nuts soy wheat what ever that needs to be removed. I used to drink 4-5 nights a week among other things and now i dont do any of that if i go out on a social occasion i have water. Your body is telling you it cant be treated the same way and you still have to live life but s$#& must change, be resilient and very stubborn with your self.

 

With the weed like whatever you think its doing you good but doctors are SO much more likly to take your symptoms less seriously why would they when you have all s$#& in your system. Harsh but fair i think.

 

 

Renegade Contributor

I cant believe your eating cereal that may contain nuts soy wheat what ever that needs to be removed. I used to drink 4-5 nights a week among other things and now i dont do any of that if i go out on a social occasion i have water. Your body is telling you it cant be treated the same way and you still have to live life but s$#& must change, be resilient and very stubborn with your self.

 

With the weed like whatever you think its doing you good but doctors are SO much more likly to take your symptoms less seriously why would they when you have all s$#& in your system. Harsh but fair i think.

Those are the cereal I eat, Open Original Shared Link

 

They are not supposed to contain nut,soy or wheat, it's certified gluten free, it say it MAY contain nuts and soy, please read my posts carefully, I never said it may contain wheat.

deals88 Rookie

Those are the cereal I eat, Open Original Shared Link

 

They are not supposed to contain nut,soy or wheat, it's certified gluten free, it say it MAY contain nuts and soy, please read my posts carefully, I never said it may contain wheat.

 

If it says may then dont have it like!! Your just going to continue down this road forever like. I know you did not say wheat, i meant nut soy wheat oats gluten barely or whatever just dont have it. Were the same age mate so ive basically been where you are but really your attitude doesnt help like. So good luck to you i wouldnt wish anyone to be sick but your not helping yourself at all.

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      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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