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Sjogren's + false negatives

Eclara

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Eclara Explorer
Eclara
Posted

So what's the verdict on false negatives? Because I had my biopsy four years ago and it was negative, my IGA was ignored because it was always 10-20 points below the normal range- but my stomach has never completely recovered from the hellish 8 week pre-biopsy gluten trial I did in 2012 and I have been progressively more sick each year in new and exciting ways. Now I've been diagnosed with Sjogren's at 24.

I plan to go back to actually watching for gluten cc instead of just eating whatever claims gluten-free status without certification either way but I admit I still wonder about Celiac each time a new digestive or autoimmune symptom pops up.

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cyclinglady Grand Master
cyclinglady
Posted

What celiac antibodies tests were given?  The full panel or just the screening?  Knowing that information could be very telling.   An out-of-range IgA deficiency result does not always impact the Celiac antibodies test.  Plus, the small intestine is vast.  So easy to miss patchy damaged areas during  an endoscopy.   

Do you still have Rosacea?  (SIBO and Rosacea are linked).  

I am sorry that you are still struggling!  

Eclara Explorer
Eclara
Posted
  • Author

Looks like I had (negative) TTG-IGA and IGG done in 2012, but not until I had already been gluten free (without avoiding cc) for nearly 2 years.

My rosacea is better than it was and I don't really expect it to improve more than this- it is less bumps and residual redness at this point and more hypersensitivity, flushing and extreme dryness. It does get worse with stomach flares but it also seems to be linked to the Sjogren's, whether it started out that way or not. I have no doubt at this point that it is autoimmune in nature for me.

As for the SIBO, I have been through 5 courses of rifaximin in the last 2 years, one of which I just finished 2 weeks ago and was the wrong decision as it was very exacerbating for my stomach. I improved on the first courses in 2014, after which I was on a strict Paleo for about 8 months and doing much better. I got too low on carbs and my hormone levels went haywire so I got off Paleo and added in packaged gluten-free bread and cereal and did fine for a few months, then kind of got lazy and played it loose and wild and started getting into whatever didn't overtly claim it contained wheat or gluten. I got sick pretty fast and have stayed that way all year. I have been eating mostly bland things for a month and half- oats, kefir, bananas, eggs- but I'm not healing as fast as I had hoped.

I know it could still be SIBO that needs a different antibiotic, or gastritis from trying out junk food, or a side effect of Sjogren's, or just plain IBS. Maybe I'm being ridiculous but I just had to ask because the question of whether or not I had Celiac never felt fully resolved to me.

squirmingitch Veteran
squirmingitch
Posted

Try ditching the oats. Something like 8% of us can't tolerate oats even purity protocol grown oats. Also I will echo what cyclinglady said about whole foods. Eat strictly whole foods for a good 3 months & see how you feel.

GFinDC Veteran
GFinDC
Posted
4 hours ago, Eclara said:

Looks like I had (negative) TTG-IGA and IGG done in 2012, but not until I had already been gluten free (without avoiding cc) for nearly 2 years.

.......

 Maybe I'm being ridiculous but I just had to ask because the question of whether or not I had Celiac never felt fully resolved to me.

......

The University of Chicago recommends a 12 week week gluten challenge before doing the blood antibody tests. I may have to report you!  Just kidding! :)

Your tests should have been negative if you were gluten-free before them for a couple of years.

You may fall into the vast pool of undiagnosed celiacs out there who will never know if they really have celiac disease.  Probably most will never even suspect they might have it!  Celiac disease is severely under-diagnosed in the USA.  The vast majority of celiacs die never knowing they had the condition.  A pretty miserable state of affairs.  At least you have a strong suspicion now!

You can push through for official gold star testing and diagnosis if that's your preference.  Or just accept the idea that you may never get the doctor's seal of approval.  The upside of getting the official diagnosis is kind of slim at the moment.  It's... OK, I am still thinking...

But you don't need a gold star diagnosis to eat gluten-free.  There is no advantage to it either way IMHO.  Lots of people seem to be eating gluten-free because it is "popular" these days, or because a celebrity is doing gluten-free.  You don't need any better excuse or reason to go gluten-free than they do.  You can just say you are gluten-free because it's the "right" thing to do. :)

It's not ridiculous to want to improve your health.

 

 

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