Test Results - Need Help

[jay21]

Hi I tried to figure this out by reading previous posts but I'm still confused. 

 

Quick background on me.  47 year old male, with 10 years of serious chronic diarrhea.  After several tests, was diagnosed with IBS.  Had 2 colonoscopies, both normal, except most recent one a couple years ago did mention that I had some inflammation in the duodenum, which could have been sign of early celiac disease.

 

My doctor said my celiac blood test was negative.  However, when I looked at it myself I noticed something curious.  Everything was negative except for one which was a weak positive:

 

TTG IgA was 4.4 (where weak positive is between 4.0-10.0).  There was an "H" next to it, so guessing that means "high".

 

Also earlier, for what it's worth, on one of those food intolerance tests, I did get relatively high reactions to both gluten and wheat (it says they use IgE and IgG4 antibodies for that one.)

 

So I'm wondering what you all think.  Is the celiac / gluten intolerance path worth pursuing as a possible help to my chronic diarrhea or is the evidence not strong enough?

 

Thanks for any help!

[mushroom]

Yes, celiac damage tends to start with inflammation in the upper intestinal tract so it certainly could have been an early manifestation.  After a couple of years I think it is probably time to revisit the celiac blood work and see if anything has changed since then.  Doctors tend to overlook "mild" positives, but we liken it to pregnancy -- you can't be mildly pregnant.  Give the testing another shot.

 

Welcome to the board and let us know how we can help.

[jay21]

Yes, celiac damage tends to start with inflammation in the upper intestinal tract so it certainly could have been an early manifestation.  After a couple of years I think it is probably time to revisit the celiac blood work and see if anything has changed since then.  Doctors tend to overlook "mild" positives, but we liken it to pregnancy -- you can't be mildly pregnant.  Give the testing another shot.

 

Welcome to the board and let us know how we can help.

 

Thanks for the response.  Yeah the blood test was pretty recent actually.  I've been tested for celiac before, and was always negative, but this time that ttg IgA coming up as weak positive got me curious, as I've read that it's pretty specific as an indicator for celiac/gluten intolerance. 

 

I'd be interested if anyone else on this board had similar results and found the gluten-free diet to be helpful, and if so how long it took for any improvement in symptoms to occur?

[mushroom]

Oh, I see.  Your post was a little confusing as to the times of testing. 

 

There can be other reasons for an elevated tTG, but it is more often celiac.  Did they also run the DGP that was negative?  This is the newest and most specific test for celiac and will often pick it up earlier than the other tests.  I gather the doctor did not feel that another scope was warranted.

 

Even if you are not celiac you can still see benefit from a gluten free diet if you are gluten intolerant.  There is no test for this -- the only way to find out is to trial the diet.

[nvsmom]

Welcome to the board. 

 

Ditto everything Neroli said. 

 

You could have non-celiac gluten intolerance (NCGI) which has the exact same symptoms as celiac disease minus the damage to the intestinal villii, plus it is much much more common.

 

You could also be in the earlier stages of celiac - you basically have both a blood test and a scope showing that. Celiac disease does not progress at the same rate in everyone - in some it's like hitting a wall and they are suddenly incredibly sick, and with others, it just slowly creeps up on you over many years...

 

Either way, I think you should commit to the gluten-free diet once you are certain your testing is done.  Be patient with the diet as some symptoms take months to sort out (like pain) where as other will just take days to a few weeks (like migraines)... at least it was so for me. 

 

Good luck!

[jay21]

Thanks much Neroli and Nicole.  You're both very kind to try and help a confused soul such as me. 

 

For whatever reason the doc didn't give me the "DGP" test, but like both of you indicate, I probably have enough evidence to at least give the gluten-free diet a try.  I already started actually, a few days ago, as best as I can manage. 

 

I was wondering, if I have the gluten intolerance rather than "true" celiac, do I have to be as strict?  I know with celiac you have to absolutely avoid even tiny amounts of gluten .. but with intolerance is it the same way, or is it more like a "low gluten" diet?

 

thanks again,

 

Jay

[mushroom]

No, I'm afraid gluten intolerance is not 'celiac lite'    Symptoms can be every bit as bad and debilitating as celiac, and you may be just as susceptible to small amounts of gluten as a celiac.  This is why we say that the treatment is the same no matter the diagnosis (or lack thereof ) -- a totally gluten free diet.  Non-celiac gluten intolerance has only just been acknowledged by the medical community and not much is known about it at the moment but research is under way.