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On My Third Month Of gluten-free Diet And Getting Worse?
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Hey guys! I'm kind of looking for some help, support, and advice here. Starting in October of last year, I woke up one morning feeling like I had a rock in my stomach for no reason and I knew something was different. I had a hard time initially describing my symptoms except I felt "full" and didn't know what else to say about it. My symptoms got steadily worse. I got to a point where I could feel hardness when I lay on my back just left of my belly button and when I REALLY pressed down while standing up. I can also feel a very strong pulse there. I had to sleep on my side though I have always been a belly-sleeper because it was uncomfortable to sleep on the lump. After seeing several doctors and having to wait a lot for test results, I was finally diagnosed after a biopsy/endoscopy in early April and have been (trying to be) gluten free ever since. I feel relieved finally knowing what is wrong with me, but I feel like I'm getting even sicker so I'm paranoid that something else could be wrong with me.

 

I can no longer sleep on my sides because I've been experiencing weird stiffness sensations in my sides, extending from my waist down to my hip. My left hip especially feels like it has a rock sitting against it. Sometimes I get weird pressure sensations across my back and back pain. When I try to lie down on my stomach, it no longer feels like specific swelling in my low stomach but like a generalized tenderness from ribs to hips. It also causes my back to break out in a tingling feeling and these weird prickly sensations will last a full day afterwards. I feel like I'm allergic to literally everything I eat. I get D every time I eat vegetables. I get gassy, squishy intestinal feelings whenever I eat cheese. AND THE BLOATING, HARD, FULL FEELING STILL REFUSES TO GO AWAY. I've experienced some headaches and fatigue recently (though I can't really tell if that's just humidity/stress). 

 

I am due for a checkup with my GI and gyno recently so maybe I can get a lot of these questions answered but I am really at the end of my rope. All I want is to feel normal again and I have to wonder why the heck I'm on this diet anyways if it isn't helping me. I'm a very anxious person and the fact that I'm getting worse just leads me to thinking the worst, like cancer and MS. Anyone who has had similar feelings or equally as rough a recovery would be really helpful. I'm just looking for comfort and any sort of advice you could possibly have.

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I was diagnosed in December and have just stopped getting sick in the past few weeks. It took a while to figure out where the gluten was hiding and what was making me sick. I'm also dairy and carb intolerant. Too many carbs feels just like getting glutened. Gluten free doesn't mean gluten free. I was still getting very sick from gluten free foods, then my nutritionist put me on only certified gluten free foods or those made in a dedicated gluten free facility. That made a huge difference but I was still feeling like I was getting it somewhere. I changed to gluten free makeup, hair and skincare products and finally started to feel "normal". Maybe you are still getting trace amounts somewhere like I was?

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Hi There,

It took me 5 1/2 months of being gluten free before my stomach pain let up. I am still recovering from other symptoms, but life is much improved without the constant stomach pain. It can take up to 2 years for the small intestine to heal and it seems to take a while for some of us to start to feel better. If you can eliminate dairy and eating out for a couple of months it should help. That is what I did and I saw great improvement. Keep in touch with your doctors about any troubling symptoms you have too. Good luck!

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It is a terrible thing that so many of us get so sick before we get diagnosed.  It takes awhile to learn the diet and it takes awhile to heal.  Some of that anxiousness might go away gluten free.  Try to be patient.  This will take time.  I was very sick and it took me a long time and effort to get better.  It was well worth it.

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This sounds a lot like how I felt, especially the constant D with veggies, and the feeling of fullness. It ended up being lymphocytic colitis, and your GI might not be aware that it's more common in those with celiac disease than the rest of the population. He/she might not consider testing you for it, because it's "rare". Unfortunately it takes a colonoscopy and biopsy to confirm, but I can attest that Entocort can alleviate the symptoms almost immediately. Don't give up! Keep fighting for answers! You don't need to feel this way!

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    • Hi.  I have been reading your post and thinking about how my pain was around diagnosis.  It was above the belly button, I think where you are describing.  At the time I assumed I had a stomach ulcer.   I had been taking Neurofen for an ear problem and assumed it was the NSAID that had caused my stomach ulcer (which I actually didn't have, when I had an endoscopy a few weeks later my stomach was looking great! My small intestine was not!).   Going back to the pain, it was a burning feeling.   My doctor prescribed Omeprazole but it didn't touch it.   In fact I ended up with bad D. which eventually lead to me having all the tests for Celiac Disease.   I still get that pain if I eat oats (pure oats) that are supposed to be OK for most Celiacs.     I get various pains in different places in my digestive tract from time to time, but that burning pain is something I won't forget. The other thing I had that you mention was that pain between the shoulder blades.  I had that - I felt almost like someone was pushing my shoulders down.  So odd. I get palpitations when I am anemic.    I hope you get some answers soon.  It is pretty tough having to keep going from one doctor to another, but sometimes it is the only way.   
    • I sit in an ice bath after a long training (running or riding).  It speeds my recovery, I swear!  
    • Oh, one last thing..... ICE PACKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! You'll feel better. Hey, you have a tub? Want to join the polar bear club in the privacy of your own home? Fill that thing with cold water & dump a 5 or 10 lb bag of ice in there. I'm serious.
    • I don't care what she specializes in, you MAKE her do a dh biopsy. I'm not being mean. Please understand that. It's just that I've heard this a thousand times before - no, a thousand one hundred!  Here's another thing ~~~ get her to order a eTG aka TG3 serum (blood test). That is specific for dh.  Oh gosh! Don't you just hate the ones in your ears???!!!!! Nah, we hate ALL of them! I swear though, when those suckers get going in & on your ears it just drives you stark raving mad!!!!! You've convinced me there is more than ample reason to strongly suspect it's dh.  Here's a tip..... the patterning the lab will be looking for is very easily destroyed by scratching so pick you out some prime places that are new & maybe, just maybe you haven't scratched them to smithereens thus far, and make some super thick gauze bandages & place them over those places so even if you reach to scratch (& we know you will! right?) the gauze will remind you & hopefully help to protect it. The biopsy needs to be taken from a clear area adjacent to a fresh lesion. No steroid creams okay? Not till after the biopsy. BTW, if she wants to put you on steroids after the biopsy be warned, 99% of the time there is such a backlash of the rash the moment you go off the steroid that you will wish you were never born. A dx of dh IS a dx of celiac disease & no further testing is needed. Please come back & update us after you see her tomorrow. In the meantime you have my heartfelt sympathy. Take those cold showers & grit your teeth. Hopefully you will soon be able to go gluten free & start getting some relief.   
    • Extremely itchy and keeps me up at night to the point I was taking cold showers at 3am.   Currently my ears, scalp, feet, and chin just will not stop itching, my elbows have the rash and look purple. Eventually the rash will heal and leaves scars that seem to be purplish in color. I have not tried gluten free diet yet.  Waiting for all the testing to stop.  The new allergist i am seeing tomorrow specializes in skin disorders.
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