Hi, I'm new here and am just looking for a little guidance
I was told by my GP when I was 15 that I had IBS fwd 15 years and I have had a child and since I still had symptoms even after trying "ibs high fiber diets" and knowing the genetic potential for celiac I decided to get properly diagnosed (ie rule out other things before just saying it's IBS) so if it is celiac my daughter does not potentially have to suffer for 30 years like I have. I started eliminating gluten from my diet a year ago and it has helped a bit ( i did not realize how much it helped until i just started adding it back in for the blood test...now I feel horrible all the time again) I don't know if my symptoms really point to celiac or not though: I have constipation mostly occasionally week long (or longer)boughts of diarrhea without other signs of illness, but sometimes ill go months with normal stool (would a celiac EVER have normal stool , especially for long stretches while eating gluten?) , pretty sure there are hemorhoids, i sometimes have heartburn but usually after oats and corn more than anything else, If I eat soft pretzels look out! I can probably produce enough gas to power a small methane powered engine!aand it will last a week ugh, I am probably 20 lbs overweight so not the typicall emaciated look, I almost always have just a general discomfort feeling throughout all of my bowels, nausea after eating just about anything (not severe just annoying), I used to get canker sores in my mouth all the time but have not had one in about 2 years (I have had other symptoms in the past as well that have not surfaced anytime recently)
I am not so ill that I am changing plans all the time or anything, but I have had a few occasions where I had to use the bathroom at someones house (the first time ever being over their house...embarrassing lol) and I have stayed home once in a while b/c of feeling like I may need a bathroom nearby but not often
I feel ill but I don't feel horrible like i need to stay in bed, so I feel like I must not really be sick (does that make any sence ?)
I was terrified of going to GI dr so I went to entero lab first (my thinking was...well if it all comes back negative, I don't have to go!),
results were elevated for gluten (fecal-Iga? i dont have it in front of me right now) and the genetic test said i have one gluten sensitive gene and one celiac gene (do you need 2 celiac genes to have celiac?)
So I reluctantly met with a GI, who has confused me a bit. First of all I knew enterolab results don't hold water with mainstream medicine but I brought the results anyway to see what he thought of them and he said " I can't understand them." what?! he made a big deal out of how the results made no sense, even the genetic test which is a cheek swab which i believe to the red cross from entero not a fecal test done directly through entero. I get if you think they don't count as results for anything but a doctor i would think would be able to interperret what is being said. he also said it was considered holistic medicine and I should not take my treatment into my own hands. So did I get scammed or is this doctor not with it?
He did order both a endoscopy and colonoscopy(along with the blood work) I was not expecting a colonoscopy but he said in order to diagnose ibs properly you need to rule everything out so I should rule out colitis as well. That part makes sense (although I am unfamiliar with what colitis is and will be doing some research on that ;)
However, he said the he can tell just by looking at me that I dont have celiac and nor does he expect anything to come back abnormal from the colonoscopy
So...should I even bother with putting myself through this torture or just carry on with the IBS?
How common is it for people to not have major symptoms and just seem normal but actually have celiac? If it's not so common perhaps he is right and I should just skip the tests?
I am sorry to ramble on I just could really use some advice from some people who have been there. Thank you!