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Update on testing

Jctb

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Jctb Explorer
Jctb
Posted

I've posted a few different topics, so I thought I would just update in one post. I am seeing my GP later today, but apparently my biopsy results were negative. I have no further information on this. What I do know, is that I have been feeling much worse since giving up gluten after my gluten challenge. Half the days I have barely left the couch. I am so confused and upset. They had warned me this may not give me answers...I'm barely eating anything, I feel so sick. I feel like I felt better eating bread, so maybe that's how I'm supposed to be eating? At this point I just need to eat more than a banana, which is all I can stomach today.

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plumbago Experienced
plumbago
Posted
32 minutes ago, Jctb said:

I've posted a few different topics, so I thought I would just update in one post. I am seeing my GP later today, but apparently my biopsy results were negative. I have no further information on this. What I do know, is that I have been feeling much worse since giving up gluten after my gluten challenge. Half the days I have barely left the couch. I am so confused and upset. They had warned me this may not give me answers...I'm barely eating anything, I feel so sick. I feel like I felt better eating bread, so maybe that's how I'm supposed to be eating? At this point I just need to eat more than a banana, which is all I can stomach today.

I looked at your past posts, but I’m not sure i know what you were eating then and what you’ve stopped eating now. Also what sort of medical workups you’ve had and what were the results. I understand your biopsy was negative - but I also saw on one post that you were worried they only took one biopsy. Do you have the analyst’s result report there with you? Does it say how many were taken? It’s hard for me to hazard any kind of a guess without a little bit more information, including any medications you are taking. I’m sorry you are feeling so awful. What symptoms are you having?

Plumbago

cyclinglady Grand Master
cyclinglady
Posted

I am confused too.  I appears that your blood panel was indeterminate, but that your NP had you on a grain free diet for five weeks prior.  You went back on gluten for two weeks (recommendation is 2 to 4) for the endoscopy.  Maybe it was not enough time for your antibodies to build up and start attacking your small intestine.   Doctors can not say for sure that two weeks is enough.  Probably for most, but maybe not all.  I say this because I never even test positively on the TTG and EMA EVER (but my biopsies proved otherwise and my anemia resolved forever on the gluten free diet).  The number of biopsies taken (6 or more recommended) and the location should be determined.  I would ask for all medical and lab reports.  

 I think a second GI consult might be prudent.  

Your symptoms?  If you have celiac disease it can take a few MONTHS to feel better.  Why?  Most often mistakes are made in the diet.  It happens.  There is a steep learning curve.  It flat out just takes time to heal.  I think most members will tell you that healing does not happen that fast even though science tells us that villi regenerates in just a few days.   There is usually a lot of collateral damage.

Finally, something is wrong.  Maybe it is NOT celiac disease.  I though for sure my niece had it, but Crohn's was found instead on a pill camera.  She had consulted with four GIs!!!!  Maybe it is NCGI which is determined after celiac disease has been ruled out.  Then a gluten-free diet is in order to resolve the NCGI (Non celiac gluten intolerance or whatever they are calling it now.  

So, keep advocating for your health.

Jctb Explorer
Jctb
Posted
  • Author

Thanks to both of you. Ok, so I was feeling not great and went grain free for 5 weeks. Then slowly started to introduce grains. All seemed ok, then I had an issue after 3 weeks, with blood in my stool. Celiac wasn't on my radar. In fact, rice and oats are what seem to bother me most. But the Dr added on the celiac test and it was indeterminate. So I was sent for endoscopy and colonoscopy. I consumed gluten for just over two weeks, then went back to my grain free, dairy free diet.

I saw my Dr this am and she said my bowels were healthy, that the Dr had taken 'several' samples and that all is well on both ends.  (No celiac, but also not H Pylori, crohn's, etc). She is running all kinds of other bloodwork, because I am still feeling terrible, and obviously the assumption I had made was that it was celiac. I'm going to stay off gluten for now, in hopes that I'll start to feel better. My GI symptoms are worse this week than they have been in ages...so something is up, but apparently I'm healthy??!

I am pretty sure my Dr. would not refer me to another GI. She's not the best, but it's very hard to find another Dr. here, especially if you already have a Dr. (Canada) I am going to ask her for a copy of the report though, as well as the rest of the bloodwork she's sending me for. 

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