On My Third Month Of gluten-free Diet And Getting Worse?

[Raconteuranomaly]

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.

[SoLacey]

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?

[notme]

read this

 

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

 

it will help i think, if you've not already read it.  do you take probiotics and digestive enzymes?  i have had great luck with these and have been able to add back in many veggies and foods that i was not digesting well.  

[HavaneseMom]

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!

[dilettantesteph]

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.

[C-Girl]

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!