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Seriously, That Doesn't Make Sense
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33 posts in this topic

I was fine my whole life, I didn't go throw any misdiagnostic except for some constipation that faded off but I wasn't bloated, I wasn't unable to walk, I had no reason to seek a doctor, then 3months ago I started job hunting as I was under unemployment and it is when it all came to crap. I was doing good, I could smoke weed, I could drink coffee, I could exercise, for Christ shake I could BREATHE AND WALK, I was getting smarter, I had desires, goals, I could enjoy a freaking quiet time by myself and I would feel great, I could digest anything.

 

Then 1 month passed, in May, bloating,cramps, fatigue but nothing unbearable to this point, I could still enjoy all I was doing, notice I am not giving the slightest crap about giving up wheat or bread, I find the gluten-free alternatives better.

 

Then goes second month July, Everything mentioned but worsen and with nausea and incredible hunger, I would be extremely hungry and extremely bloated at the same time, so my doctor suggested I try cutting Gluten.

 

Third month,now I have been 1 month gluten-free and I can't digest anything without feeling bloated, there are just some stuff that are tolerable and pass easier but I get bloated C, I never get D. Which I'm terribly bloated with cramps right now like if I had been glutened, I DID NOT, or maybe it was the clean spoon I used in my own apartment that got me this bad, you know cross-contamination that can't even been seen by your eye.

 

How the hell can some of you still be alive at 50r old going undiagnosed for YEARS?! Shouldn't gluten have made you unable to function and give you bleeding all over your digestive track and permanent physical damage?

 

I am 23, I was fine all my life and in 2 MONTHS , 1 GLUTEN FREE, I am at the worst I ever felt, I feel like I am 80, I am not getting better, I thought I was, yeah because 2 weeks ago I slept 14hours and was beyond exhausted got glutened on that even same day and I felt like crap,

Then 5 days later I had a burst of energy and felt I could be my normal self again,nope, got worse, got better, worse and better and now that's just shit.

 

All I ever did was take care of my HEALTH, I can't imagine how worse this would be had I neglect it, I just don't even wanna think about how worse this could be.

 

All I am good for is sit there and feel bloated now, I take probiotics,vitamins I'll get enzymes when I can afford the cash. I couldn't careless if I can't go to a restaurant, eat out, and get excluded to every events from being gluten intolerance, my health is my only concern.

 

I was thinking, surely if 3 months ago I could do everything I wanted, then 3 months gluten free and I should get SOMEWHAT okay? Well 1 month gluten-free and it just get worse is this how nature intended healing to be? How the hell would it ever be possible to heal without supplements,probiotics,enzymes in a world where you can't even use your body. Surely nature would kill you.

 

My question is, how in the matter of 2 MONTHS did I screw my entire life up? I cannot do anything but be a zombie, 2 MONTHS and you guys go like this undiagnosed for 30years? I am so getting pissed with this.

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You learn to adapt. I had issues for about... 9 or so years. If it means knowing where all the bathrooms are in a building, so be it.

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Maybe Celiac isn't the issue? Maybe you contracted a parasite? Or some other intestinal issue?

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Maybe Celiac isn't the issue? Maybe you contracted a parasite? Or some other intestinal issue?

But I have all the symptoms of celiac, I feel bad when eating gluten product and I get some other intolerance but they dont affect me as incredible as gluten, I also felt all that better feeling rush from cutting gluten and now its up and down. I've cut all grains and it got worse from there, when I was eating rice, rice noodle , honey, corn bread, corn cereal, going all out on nightshade, i was WAY better, mind you, I was crappy as hell, but comparing it to now...crappy is not enough of a meaningful word.

 

I had no reaction to those food NONE AT ALL but I cut them because everyone told me how fad my diet was so I added a ton of veggies, BOOM bloated,fatigue, can't digest crap and breathing got worse. I could do coffee fine on my gluten-free corn,bread,rice no veggie diet.

 

I was happy when I learned It could be gluten, because back when I learned it, I could do everything I mentioned so I thought it would only improve fast, everything went downhill after I cut Gluten.

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My Mom wasn't diagnosed until she was in her 50's and I believe she had it since birth. She DID have permanent damage. Her villi were not just flattened, they were essentialy GONE. They grew back somewhat, but not to normal levels. She had to have vitamin injections monthly because she couldn't absorb enough from her food.

 

All my life I thought Mom was a hypochondriac. She was ALWAYS complaining she didn't feel good. Yet she sewed our clothes, cooked our food (and all of it from scratch because my Dad had such bad allergies he couldn't handle preservatives and artificial colorings and flavorings), canned and froze all of the veggies that my Dad grew in his GIGANTIC garden, nursed us when we were sick, made, decorated, and sold beautiful wedding cakes, crocheted sweaters and afgans and the like and gave them as gifts and sold the rest, listened to all of our troubles, and through it all she felt TERRIBLE!  

 

After she was diagnosed and went gluten-free and soy-free, as long as she got her shots, she felt GOOD. But it didn't happen overnight. That's why this has seemed relatively easy for me. I saw what SHE went through. I think I was only celiac for about 12 years before figuring it out. I'M still not all the way back, but I'm so much better than I was and I know it's just going to keep getting better.

 

Patience. :)

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Hon, I never ate many veggies before either. When I started eating a lot of them I had terrible trouble. They are hard to digest compared to the burgers and fries I used to live on. So I just added a few, and I only ate them in small amounts at first.

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Hon, I never ate many veggies before either. When I started eating a lot of them I had terrible trouble. They are hard to digest compared to the burgers and fries I used to live on. So I just added a few, and I only ate them in small amounts at first.

How are they hard to digest? They are the truest nature form, how could it be harder then the bad stuff.

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Removed -- answer sounded like I was looking for sympathy...I'm not.

 

 

 

Here is a better answer.

 

Eat whole foods, talk to your doctor and be patient.

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How are they hard to digest? They are the truest nature form, how could it be harder then the bad stuff.

 

Any food can be difficult to digest -- especially if you do have Celiac Disease -- any food -- healthful or not.

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Why would your body get sicker when "healing" leaving you unable to do any physical work, again that make no sense in a evolution kind of way. I could do and tolerate much better before going gluten-free.

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Vegetables, especially raw veggies like salad greens, have so much fiber they are hard to digest. You know how corn usually shows up the next morning in the bowl? Salads used to be the same way for me - I wasn't digesting them at all - not the lettuce, nor the carrots, nor...well, you get the idea.

 

And the reason your body gets "sicker" while you are healing is that all of its energy is going INTO that healing, leaving you with nothing left for day to day life activities.

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Vegetables, especially raw veggies like salad greens, have so much fiber they are hard to digest. You know how corn usually shows up the next morning in the bowl? Salads used to be the same way for me - I wasn't digesting them at all - not the lettuce, nor the carrots, nor...well, you get the idea.

 

And the reason your body gets "sicker" while you are healing is that all of its energy is going INTO that healing, leaving you with nothing left for day to day life activities.

Yea I feel if I could just rest and eat all day long the healing would be a joke, it's so bad I didn't get to do that when I was unemployed, the problem is I NEED energy, I can't even focus at work properly and I must, my body should allow me some energy left to survive and function instead its forcing me to rest which I can't.

 

You should have seen how hard I used to push my body, taking some time 600mg of caffeine a day, coffee, peanut butter and bread, oatmeal and exercise. You could think that's too much but I could really just push myself so easily, I just can't grasp how it went downhill so fast, I mean it's not like i could feel worse as years went by, I was feeling awesome and then I looked for a jobs and got really stressed out and the whole process took 2 months and boom I was done for, can't do anymore.

 

I'm saying there was no transition, I just felt like shit out of no where. It's like I went from a totally fine person to a 60yr old celiac.

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Celiac symptoms are also symptoms for many other illnesses. Because this came on so suddenly and it is getting worse on a gluten-free diet, I would not limit my search to just Celiac ( if it were me). Yes, I know that won't be a popular stance.

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Celiac symptoms are also symptoms for many other illnesses. Because this came on so suddenly and it is getting worse on a gluten-free diet, I would not limit my search to just Celiac ( if it were me). Yes, I know that won't be a popular stance.

 

I second.

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Celiac symptoms are also symptoms for many other illnesses. Because this came on so suddenly and it is getting worse on a gluten-free diet, I would not limit my search to just Celiac ( if it were me). Yes, I know that won't be a popular stance.

I agree as well.
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Wow! It was more popular than I thought!

Seriously, it sounds like something is going on and it might not be Celiac. Please explore all your options and keep an open mind.

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But I have all the symptoms of celiac, I feel bad when eating gluten product and I get some other intolerance but they dont affect me as incredible as gluten, I also felt all that better feeling rush from cutting gluten and now its up and down. I've cut all grains and it got worse from there, when I was eating rice, rice noodle , honey, corn bread, corn cereal, going all out on nightshade, i was WAY better, mind you, I was crappy as hell, but comparing it to now...crappy is not enough of a meaningful word.

 

I had no reaction to those food NONE AT ALL but I cut them because everyone told me how fad my diet was so I added a ton of veggies, BOOM bloated,fatigue, can't digest crap and breathing got worse. I could do coffee fine on my gluten-free corn,bread,rice no veggie diet.

 

I was happy when I learned It could be gluten, because back when I learned it, I could do everything I mentioned so I thought it would only improve fast, everything went downhill after I cut Gluten.

Veggies make me bloat like crazy.  I learned that I can't eat them raw at all.  Baking my veggies usually helps with the bloating and washing them down with some juice.  Like you, I also changed my diet because people told me how unhealthy it was and then started to feel worse.  Try "drinking" your veggies instead.  It's easier on the system.

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Wow! It was more popular than I thought!

Seriously, it sounds like something is going on and it might not be Celiac. Please explore all your options and keep an open mind.

 

 

I  will "4th"  this suggestion

Sometimes going gluten free is not the answer--especially if SOMETHING else is going on.

Time to go back to the doc who suggested giving up gluten and tell him/her what you have told us.

You should not be feeling worse--not  for this long, IMHO.

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I agree with the above too. 1 month gluten free for me and my pain is gone, still having digestive issues as others have said but no more pain and I'm healing. I think if your not improving on the diet you might want to go back to your dr.

As far as how I lived with it so long.....I literally thought it was the norm. I contributed it to not enough fiber in my diet, or wow my asthma is making me so fatigued and sick today, gosh my joints ache must be our mattress etc etc

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I agree as well.

 

My major symptoms stopped within days. It took a while for the lesser symptoms to go away.

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Feeling worse for some time is normal. Having trouble digesting foods that weren't previously part of your every day diet is also normal. But I have to agree that this seems to be taking longer than the usual withdrawal issues to resolve. See your doctor. I'm not sure if my memory is serving me correctly here or not, but you were not ever actually tested for celiac were you? I think you should be at this point, this is why it is so important to test in the beginning. You don't know now if you're shooting in the dark or doing the right thing.

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Did your doctor do any testing for celiac or do stool testing to make sure you didn't pick something up? If your doctor didn't at least run a celiac panel before telling you to try the gluten-free diet IMHO you need a new doctor. Celiac can come on suddenly when under severe stress, like looking for work, but I think most times it kind of sneaks up on us masquerading as other on and off issues.

If a lack of insurance and low income are an issue for testing check with clinics as many have sliding fee scales. Your local hospital may also have sliding fee programs for testing like labs, X-rays etc. 

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30 years undiagnosed:  How?

Timing.  The bloating seemed like maybe I was gaining weight as I came out of my teens.  Normal.

 

Pain:.  My only "Pain" was brain fog and fatigue.  Symptoms belonging often to working hard and many other things.

 

Bloating is not a big problem when you wear dresses.

 

Numbness:  I didn't hurt when I bloat.

 

I kept finding ways to help that would make me feel better for a while.

 

I stayed away from things I knew I had become sensitive to.

 

 

Is it celiac?

Does it respond to gluten free diet?

Yes, but I felt worse for some time before I got better.  It is possible this is like you.

 

Yours may be celiac and may not.  Keep your mind alert and also find someone to help.

 

Get Well***

 

D

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Did your doctor do any testing for celiac or do stool testing to make sure you didn't pick something up? If your doctor didn't at least run a celiac panel before telling you to try the gluten-free diet IMHO you need a new doctor. Celiac can come on suddenly when under severe stress, like looking for work, but I think most times it kind of sneaks up on us masquerading as other on and off issues.

If a lack of insurance and low income are an issue for testing check with clinics as many have sliding fee scales. Your local hospital may also have sliding fee programs for testing like labs, X-rays etc. 

He did indeed advise me to stop gluten without testing for celiac, now this is very overwhelming because I do react heavy to gluten food, very bad cramps and need to rest so if he ask me to do a gluten challenge, I can only see myself not being able to overcome it. He's not a great doctor imo but it's Canada, i got no insurance, don't know where to go. Initially I paid 65$ bucks to go see my chiropractor who also is a naturopah and nutritionist, and when i went I told her it was for cramps and constipation and bloating, so she though it was a mechanic issue and stretched my colon, I ended up feeling worse.

She did fix my constipation issue when I had them 2 years before using a naturopath remedy but I had no cramps back then, it wasn't hurting and I also had change my nutrition heavily so she though it was because my liver had a hard time handling the change.

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You are right.  It doesn't make sense.  I am sensitive to very low levels of gluten and I had to go on a very strict diet to get complete symptom relief.  Nonetheless, I improved greatly with the elimination of just Cheerios and bread.  If you are feeling worse gluten free it is likely something else.  And that something else is getting worse because it is not being treated.  You need a doctor who has gone to medical school.  

 

You say that you are in Canada and that you have no insurance.  Isn't it pretty easy to get insurance in Canada?  Don't they have national health care there?  When I lived there for 30 years, it wasn't an issue.  Here in the U.S. health insurance can be very expensive if you can't get it through work.  You need to see a doctor with medical training.  Chiropractors and naturopaths might not have adequate training to know what is wrong with you.

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