Celiac?

[danieldcc]

Hello, 

 

After several doctor's and GI doctor's that dismissed my problems I finally got a GI doctor to take me seriously.  I had a gastroscopy last month and even though I haven't seen my GI doctor since, due to her vacation and hard to get appointment here in Canada. 

 

I saw my family doctor who had the report though. The report said something about mucosa and also that  shortened villi and celiac suspected. Apparantly there was no inflammation though. Prior to the test I had been mostly gluten free but couple weeks before test I was eating gluten and ofcourse probably eating the hidden gluten too. 

 

My symptoms are bloated and tightness/pinching in my lower to mid right side. Occasional excessive nose coming from there as well. I also have fairly loose bowel movements. I have gone much more strict gluten free diet after test and I see the stool are more solid but still not too great. They seem flat and unfinished. I have to go wipe usually multiple times or spray water directly on anus or otherwise won't be clean.  Sometimes there seems to be odour coming from there, even though i know i washed.

 

I usually go once a day to washroom but sometimes have nausea during the day.  Today I went my second time after having ice capp from tim hortons and had loose stool, but ice capp supposed to be gluten free.

 

I'm going back to see GI next month and wonder what they will say, but I'm not 100% convinced that this is celiac as I seem to be having symptoms even after going gluten free.

 

My blood test shows elevated Ferritin level, it's about (300). Thought Celiac usually have low iron level too.

 

On side note, I found a spice that I have been using regulary has "May Contain Wheat" on label which could of been causing problems for me aswell.

 

Anyways, what you guys think? Is this celiac or something else?

[nvsmom]

Unfortunately, I know of nothing else that causes villi damage other than celiac disease. If you have damage that was found on a biopsy, it is most likely celiac disease. Doctors like to call the endoscopic biopsy the "gold standard" of celiac diagnosing. Plus, you have some pretty classic celiac disease symptoms... It's all pointing in one direction.  

 

About the elevated ferritin, not all celiacs are low in nutrients (usually D, B12, iron, ferritin, zinc, potassium and calcium). I too was normal in everything and I exceeded the upper levels of the normal B12 by a good 30%. Great nutrient levels are not the norm, but people have a huge variation in how celiac affects them. For example, my cousin's son was just diagnosed and his only symptoms were ADD and some cognitive issues, otherwise he's a perfectly healthy kid.

 

As for having symptoms after going free, unfortunately celiac symptoms can linger a loooong time.  I personally felt worse at first (withdrawal) and then felt well for a month, at two months into the gluten-free diet I had one of the worst arthralgia attacks I'd had in a decade. I quite honestly think it took 9 months or so for most of my symptoms to go. Some symptoms did improve somewhat almost immediately (migraines and bloating) but others took months and months. This makes sense to me because those autoantibodies can linger even if you are not eating gluten. At my one year check of my tTG IgA levels (which helps cause intestinal damage) my results were still above normal - and I had been gluten-free for a year except for a few accidents, the last being over 4 months earlier. For some, it can take years to feel well.... luckily most feel better within about 6 months.

 

Good luck with the gluten-free diet.