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SteelerGal

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SteelerGal Newbie
SteelerGal
Posted

In the past 4 months, I have gone through lots of blood and stool tests, endoscopes, colonscopies and an MRI. Still waiting for the MRI results, but the only thing we can come up with is malabsorbtion. My doctor has advised not to eat gluten. I am feeling a little better, but still nauseous, bloated and extremely tired. I started taking Vitamin B complex to help, but I just want some relief! 

 

Seems like most cut out dairy as well? Maybe I have not successfully cut out gluten? (maybe it's hiding in things I didn't think about).

 

What are you favorite resources to help you feel better?

 

Thank you!

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kareng Grand Master
kareng
Posted

Were you diagnosed with anything?  Celiac?  Because, if its not Celiac, then cutting out gluten might not be of any help.

SteelerGal Newbie
SteelerGal
Posted
  • Author

Were you diagnosed with anything?  Celiac?  Because, if its not Celiac, then cutting out gluten might not be of any help.

Only thing I've been diagnosed with is malabsorbtion. Everything else (including MRI now) have been normal. SO frustrating!!!! 

 

Cutting out gluten has helped some, but I still have my symptoms. i am not sure what else to cut out of my diet (if that's even going to help).

GottaSki Mentor
GottaSki
Posted

Only thing I've been diagnosed with is malabsorbtion. Everything else (including MRI now) have been normal. SO frustrating!!!! 

 

Cutting out gluten has helped some, but I still have my symptoms. i am not sure what else to cut out of my diet (if that's even going to help).

 

Welcome!

 

Did that doctor by chance -- run a full celiac antibody panel BEFORE telling you to remove gluten from your diet?  I hope so. 

 

You need to be actively consuming gluten for celiac antibody tests to be accurate.

 

Hang in there....and keep looking for answers :)

Adalaide Mentor
Adalaide
Posted

I also wonder if they actually did an appropriate biopsy. Just because they did an endoscopy, does not mean they did a biopsy for celiac, or if they did that they did it correctly. Some morons... I mean doctors... go in, don't see anything wrong and so don't bother with the biopsy. Or don't take enough samples.

GottaSki Mentor
GottaSki
Posted

PS...forgot to answer your original question.

 

The best resource for all questions with regard to Celiac is the University of Chicago's Celiac Center -- they are pretty good at providing info for those with Non-Celiac Gluten Sensitivity as well.

 

The center's FAQs are a fantastic resource:

 

Open Original Shared Link

 

If you are looking to tighten up your gluten-free diet -- this thread is a must read:

 

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

Harpgirl Explorer
Harpgirl
Posted

I also wonder if they actually did an appropriate biopsy. Just because they did an endoscopy, does not mean they did a biopsy for celiac, or if they did that they did it correctly. Some morons... I mean doctors... go in, don't see anything wrong and so don't bother with the biopsy. Or don't take enough samples.

 

I'm one of these unfortunates that had this kind of moron doctor. By the time I figured out that it could be celiac, we'd already done an endoscopy. Furthermore, I had to be the one to bring up celiac at all! So much for being a "specialist." Grr.

 

Anyway, some people also do a paleo diet for a while then slowly reintroduce allergens to see if they have a reaction. You may try that. 

 

Personally, the things that I find that help are heating pad on my belly for pain, peppermint tea and/or apple cider vinegar water for nausea, and a small glass of wine for cramps (though I'm told you need to wait for your body to heal initially before consuming alcohol). I don't get the big D, Just the big C, so I also take a prescription laxative.

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      Because you have already had the "gold standard" test done, and because you have some experiential evidence that removing gluten from your diet causes you to feel better, it would make sense to begin the gluten-free diet as you wait for biopsy results.
    • growlinhard1
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      By growlinhard1 · Posted

      I wasn't given any blood tests. I think I should try the gluten free diet because when I cut it out a few weeks ago for just a couple of days, I know I started feeling better. The difference was actually pretty dramatic. When I learned gluten free eating may cause false negative biopsy results, I went back to gluten full force and feel like you know what × 10. Do you feel it would be okay since the gold standard for diagnosis is behind me or should I wait for biopsy results? In your opinion, of course. I know you can't offer me medical advice.
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