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Confused Newbie W/ Negative Diagnosis

bklynceliac

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bklynceliac Apprentice
bklynceliac
Posted

Hey all, new to posting, but have been reading the site for a few months. Let me start off by saying thanks to all you who have indirectly been giving me a lot of great advice on how to feel better. This board is really amazing. But, that's not why I called....

here's the rundown. I'm in my late 20's, and in early March began experiencing serious gastro symptoms. All D, all the time pretty much. It came on all of a sudden and didn't seem particularly tied to any food intake. After about 6 hilarious weeks of that my PCP prescribed flagyl, thinking it would either kill a mysterious virus or help with an undetected bowel disease. The flagyl helped the D, but brought on very bad abdominal pains. Those lasted for a few months and bathroom flair-ups continued about once a week. With that I've also had very bad exhaustion, and sporadic dizziness. A nutriotionist advised me to attempt a gluten-free, lactose-free diet, which i did, and seemed to help. I have since elliminated lactose as a possible culprit, as ice cream has become a good friend. I recently went to a GI and had a colonoscopy/endoscopy. I told her I wanted to check for celiac and announced that I knew I would have to go back on gluten for it to work (she wasn't going to suggest that - good thing I read this board). So I started in with the bagels and pasta etc (I had been off gluten for about 3-4 wks), and noticed extreme dizziness, exhaustion, and brain fog after eating them. The gastro symptoms didn't come back however. Anyway, I just heard from my doctor and she said all biopsies came back negative. So now I don't really know what to do. I've resumed a gluten-free diet, and the exhaustion and foggy-ness have subsided a bit, but abdominal pain and D are still frequent visitors. Not really sure what to try next. Any ideas or advice would be much appreciated....

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CarlaB Enthusiast
CarlaB
Posted

Welcome!

I had a negative biopsy, but had been off gluten longer than you and the six week challenge was not long enough. I knew gluten was the culprit, but I needed to know I wasn't crazy or imagining it, so I got tested by www.enterolab.com. If you are comrfotable being off gluten without a test saying you need to be, just stay off it. I needed a test to give me the motivation to make this change for life. My test also showed a casein intolerance which I would not have even considered had I not been tested for it.

Your digestive issues may go away if you stay gluten-free, or you may have other intolerances like I did.

AndreaB Contributor
AndreaB
Posted

I would also encourage you to use enterolab if you can scramble together the funds. We got tested (all the tests they offer) and found out we are intolerant to gluten and soy. It may take some time for your body to bounce back also, or it may be other allergies or intolerances. You may also want to consider allergy testing. I had allergy testing done and then had the whole family tested by enterolab. I will pursue allergy testing for the others if it is something we can't figure out though.

Welcome. :D

RunnerNYC Rookie
RunnerNYC
Posted

Hey bklynceliac,

Seems like we're in similar places. I'm in my early 20s living in Brooklyn as well - even though my ID is NYC...

Anyway, I went off gluten with improvement, but now that I'm going back on for the tests, I have some good days and some bad - as opposed to all bad days. Maybe you started to repair after going off gluten and your sensitivity hasn't had a chance to kick in again?

I haven't gone for my tests yet, so if they all come back negative, I guess I'm not sure what my next step will be.

To me, the enterolab tests sound like the next best thing, but I don't understand why we couldn't get get the tests done through another doctor that would be covered.

Anyways, good luck with your diagnosis - just wanted give a shout out to brooklynite!

Rikki Tikki Explorer
Rikki Tikki
Posted

The thing is you can have celiac and have a negative biopsy because the damage has not been extensive, at least I have read many people write that.

Did you have the blood test for celiac? If you feel better gluten free don't worry about having an acutal diagnosis, just do it.

It took me about 3 years to really feel better after diagnosis and going gluten-free

bklynceliac Apprentice
bklynceliac
Posted
  • Author

I did have blood test, it was negative too. Going on the diet anyway makes some sense, but i'm not sure i have the patience/fortitude to stick something out for three years without concrete results or evidence that it's the right thing to do. You know? Enterolab makes a lot of sense. I'll ask my GI what she thinks.

Oh, and thanks for the shoutout 'Runner'. Not sure what part of brooklyn you're in, but if near park slope there's a great health food store called "Back to the Land" that I highly recommend. Good range of gluten-free products.

  • 2 weeks later...
rogue Rookie
rogue
Posted

I tested negative for celiac disease for 8 years before I tested positive. It wasn't until I went on a super gluten-rich diet for 3 months did my blood tests finally go off the charts. I was finally diagnosed with celiac disease, even though I still have a negative biopsy. Keep trying, and if you feel better gluten free- then I would say stay far away from it.

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