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C-Girl

Ttg Iga Down! But Still Having Issues...

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After much waiting, my third (3rd time a charm?) gastroenterologist finally got back to me with my labs from my last visit two weeks ago.

 

Abdominal ultrasound, normal. C-reactive protein, normal. Pancreatic enzymes, normal. Good news? tTG which was >100 in October is now down to 5! That's a huge, huge drop, so why am I still having these issues? I'm clearly sticking to the diet.

 

I'd been having big D - 10 trips or more a day - and feeling lousy. I know it wasn't gluten. I've been having sporadic episodes of D plus stomach pain and esophageal spasms over the past 5 months, since diagnosis with celiac. The last one included what felt like gallbladder pain (sharp, stabbing down from the right shoulder blade to the center of the sternum).

 

A week of barely eating at all, followed by a week of eating absolutely nothing except rice, eggs and fish, and I'm down to maybe 1 trip/day of D that follows one or two normal BMs. I'm also down to 114 lbs from 120. The only change I've made in the last few days is adding the Culturelle probiotic to my day. I'd been using a different one and I just don't think it agreed with me. In fact, it may have been making things worse.

 

Now the doctor wants to do both an endoscopy and colonoscopy to "rule out microscopic colitis" and see the level of inflammation in my stomach. It seems like a lot of pain and expense to go through to rule something out.

 

I'm fairly convinced that all of the issues stem from my trip to Italy - I got traveler's D, which persisted, and led to my celiac diagnosis after being symptom free for eons. I'm fairly confident that whatever bug I had is still there, and if I give it the right fuel it grows back and I get the symptoms again. I need to starve the little fookers out and bombard my guts with the right kinds of bacteria until it all goes back to normal!

 

I guess my question is: should I go through the misery of these procedures? Last time I had an endoscopy I was in abject agony for days with esophageal spasms.  I'm terrified to go through it again, terrified of being put under again, terrified of someone shoving things up my rear. I'll do it if the doctor can make me better, but I can't imagine what she's going to find. It'd be nice to see if my villi were growing back (total atrophy in November), but ... I don't need to know that badly. The 5 on the IgG's tells me I'm on my way.

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Congrats on getting the blood work down so well!

Have they done a stool test to look for parasites? You could just try the simple plain diet you are on for a few weeks and see if that helps. Maybe add cooked sweet potato? Give it a couple of weeks before you decide.

Edit- I just looked at your post again. It's just been since Nov? That really is fabulous on the blood work! I would say that it took my system about 1 1/2 years to get working like a normal person's. Even now, if I eat a bit differently for more than a couple of days, it will get out of whack.

Edited by kareng

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Congrats on getting the blood work down so well!

Have they done a stool test to look for parasites? You could just try the simple plain diet you are on for a few weeks and see if that helps. Maybe add cooked sweet potato? Give it a couple of weeks before you decide.

Edit- I just looked at your post again. It's just been since Nov? That really is fabulous on the blood work! I would say that it took my system about 1 1/2 years to get working like a normal person's. Even now, if I eat a bit differently for more than a couple of days, it will get out of whack.

They did a stool test in October, found no cysts or ova. No salmonella, shigella, campy, yersinia or E. coli 0157. But there are other bacteria that can cause travelers D. Who knows, maybe if that's it I'll get immune eventually. My immune system ought to be looking for things to destroy now that it's not working on my small intestine....

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Now the doctor wants to do both an endoscopy and colonoscopy to "rule out microscopic colitis" and see the level of inflammation in my stomach. It seems like a lot of pain and expense to go through to rule something out.

 

 

 

I'd do it. My friend with celiac also had microscopic colitis and c.diff  it made her life hell. It is easily treatable.

Why not get to the root of the problem and resolve it so you can feel better?

You're doing a great job being gluten-free and reducing the TTG, but if something is still wrong, don;t you want to find out what it is?

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I agree. You might as well go for it and hopefully get more answers.  It could still be celiac disease causing it (my C did not improve until almost 10 months gluten-free) but the only way to determine if it is celiac disease is wait... and wait and wait. You might as well check out that avenue in the meantime.

 

I hope it goes better for you this time since you are regaining your health. Congrats on that 5!  Awesome!  :)

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