Positive Ttg/ Celiac?

[Cthompson638]

Hello,

 

To provide a brief summary of my story, I am a 24 year old male with no previous stomach issues until recently. About 3 months ago after being very sick with a fever and being on antibiotics I came down with a cdiff infection, which I then took several antibiotics to cure. My GI doctor performed both a colonscopy and endoscopy during this time to see what was going on and found no inflammation or any indication of a problem. I started to become very frustrated with this doctor because I still had tons of symptoms I have never experienced before both stomach related (diarrhea, acid reflux, stomach pain) and systematic issues (freezing hands and feet, rashes, body aches, insomnia, depression). He refused to listen to my complaints gave me the all encompassing "IBS" diagnosis and sent me back home with antidepressant pills (which I hate and stopped after 3 weeks).

 

I needed more answers, so I saw a second GI Doctor. This GI Doctor was great and said my problems shouldn't just be dismissed as IBS. She said my symptoms sound alot like Celiac and/or SIBO. Low and behold, I received a series of blood tests and my TTG-antibody was low positive. My hydrogen breathe test was also very high. I showed this doctor my previous endoscopy report with clear biopsy, so she suggested we repeat a biopsy to see whats going on. She also prescribed  RIfaxamin for the SIBO.

 

To fast forward to today, I have been taking the Rifamaxin (now day 5) and really feel no different. I have dabbled in different diets (low Fodmap, low gluten) and supplements (glutamine, digestive enzymes, probiotics) and little as changed. The doctor said I should NOT start a gluten free diet until biopsy report comes back in two weeks. 

 

My question is twofold: What would be the doctors reasoning for not starting gluten free now that i have received blood test and endoscopy? Also, if this biopsy is again not indicative of celiac (my big fear) what is my next step? Can I still be celiac with a low positive TTG, which I have heard is pretty accurate and specific unless I have a different autoimmune issue? I have already been tested negative for almost every autoimmune disease so I dont know what else would cause a positive TTG.

 

Any help/insight would be greatly appreciated. Thank you!

[StephanieL]

Do you have the specifics of your Celiac testing? There are several tests in a full Celiac blood panel that should be drawn.  That said, with a slightly elevated tTG and a negative biopsy, I would next go to the genetic testing if they have done a full panel already.  This will tell you if your genetics line up with Celiac. If that was + I would say it's a pretty good idea to go gluten-free at that point.

I would think all the antibiotics you were on could have been your trigger into Celiac.  Another thing you may want to consider trying in the meantime is a really good probiotic.  Many of the issues you are talking about may be a result of gut imbalance brought on by the antibiotics which destroy both the good and bad gut bacteria.

[Cthompson638]

Do you have the specifics of your Celiac testing? There are several tests in a full Celiac blood panel that should be drawn.  That said, with a slightly elevated tTG and a negative biopsy, I would next go to the genetic testing if they have done a full panel already.  This will tell you if your genetics line up with Celiac. If that was + I would say it's a pretty good idea to go gluten-free at that point.

I would think all the antibiotics you were on could have been your trigger into Celiac.  Another thing you may want to consider trying in the meantime is a really good probiotic.  Many of the issues you are talking about may be a result of gut imbalance brought on by the antibiotics which destroy both the good and bad gut bacteria.

I will definitely ask the GI doctor for the full results during my next appointment. I have tried some probiotics (florastor, ultimate flora) but have held off since starting the antibiotic. I have read that probiotics may not be the best thing for SIBO as you are just adding more bacteria to your intestines. The doctor never mentioned this but I thought I would hold off on probitoics for awhile until I finish the antibiotic.

 

It has been very discouraging, as I feel like I have been to every doctor imaginable and I have only got worse with no diagnoses. The closest thing to date of a diagnoses I have is the positive TTG levels but I am hesitant to jump on to a gluten free diet without being sure this is what has been causing the issues. 

[StephanieL]

I don't know anything about SIBO so I am unsure about the use of probiotics for that specifically. I know with "regular" antibiotics it is suggested to give the pros between the anti's to lessen the issues that are often associated with it.  Again, something to ask about if you are interested in using pros.

 

I am sorry this has been so difficult for you.  It sucks not having answers when you just want to feel well!  Things are getting better but in years past it has taken an AVERAGE of 7 years for many with Celiac disease to be diagnosed so having an elevated tTG and no other autoimmune issues that could be causing it- you may very well be headed in the right direction.

 

Are you scheduled for a second biopsy now? If so, that is exactly why the Dr doesn't want you to be gluten-free yet.  You can not be properly diagnosed without being ON gluten during the testing process.  Also, be sure the Dr. takes enough biopsies because Celiac is a patchy disease and they need to look all around (and even then if it is the early stages, there may not be a ton of damage to find).  

 

Good luck and HTH!

[Cthompson638]

Just an update on this post. I spoke to my GI doctor today after my endoscopy. She mentioned that if the biopsy results show no damage I would not have Celiac disease since my biopsy is negative and my TTG level is only low positive? She said I would be classified as "gluten sensitive".

 

I have done some of my own research and it seems that gluten sensitivity does not raise TTG levels. I also am pretty sure I can eliminate the other diseases that may cause positive TTG as I have had extensive bloodwork, CT scan, x rays completed this month.

 

As I have already had bloodwork and endoscopy done now, I think I might just jump the gun and try gluten free before biopsy result to see if I feel any better. 

[LauraTX]

Just an update on this post. I spoke to my GI doctor today after my endoscopy. She mentioned that if the biopsy results show no damage I would not have Celiac disease since my biopsy is negative and my TTG level is only low positive? She said I would be classified as "gluten sensitive".

 

I have done some of my own research and it seems that gluten sensitivity does not raise TTG levels. I also am pretty sure I can eliminate the other diseases that may cause positive TTG as I have had extensive bloodwork, CT scan, x rays completed this month.

 

As I have already had bloodwork and endoscopy done now, I think I might just jump the gun and try gluten free before biopsy result to see if I feel any better. 

 

If for some reason the biopsies (hopefully many were taken as damage can be patchy) come back normal, which will take a while for a pathology report to come back, do a double check to see if any other bloodwork can be done.  Here is a list of tests that can be done to help a diagnosis.

 

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA 

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

 

If you can, have your total IgG level done to make sure the IgG ttg is fully reliable.  Same thing if they do any IgA tests.  If you feel that any testing still needs to be done, I would hold off the week or two on going gluten-free so they can draw the blood without delay.  

[Cthompson638]

Thanks Laura, I will definitely ask for that panel in my next visit. While on the topic of blood tests, what is interesting is during my vistit to the first GI, he had me do a blood test for IBD. What was interesting is that my ASCA IGA levels were also high, which he said was suggestive of Crohns. This is why I had a colonscopy and endoscopy back in December. When he said he could not see any evidence of Crohns, he labeled me as IBS and never once mentioned the word Celiac. I have now read on several sites that this antibody is also found in many celiac patients. I have also has slightly elevated liver enzymes and fecal fat positive twice in my stool tests. No idea how my first gastro never even considered Celiac disease.