Guidance needed please!

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glutenfreeforme
New Member


Date Joined Apr 2014
Total Posts : 2
   Posted 4/2/2014 8:40 AM (GMT -6)   
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!

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8382
   Posted 4/2/2014 9:34 AM (GMT -6)   
sorry you are struggling with this.

A few things come to mind. You can be gluten-intolerant and not have celiac disease. So you might feel better avoiding gluten and still not have celiac disease. I would guess based on your history and current health status that you do not have celiac disease, but the endoscopy will tell the story better. You should continue eating gluten until you have the scope.

You are 30 years old, right? This is young for a colonoscopy but given your descriptions of gastric troubles it seems like a reasonable step. Your DR is right, IBS is a diagnosis of elimination, and a colonscopy would answer most any question about possible issues related to inflammation in the colon and terminal ileum. It doesn't completely eliminate the possibility of an inflammatory disorder because you can't see the small bowel with this scope.
 
Just to be clear, IBS = irritable bowel syndrome. People with IBS do not have inflammation.

Your GI should have ordered blood tests and stool tests to look for inflammatory markers in the blood and pathogens in the stool. There is also a test to look for inflammatory markers in stool (fecal calprotectin) which is an excellent test but unusual in the US for stupid reasons. I would talk again to the GI and make sure all the preliminary screening tests are being done before you agree to a colonoscopy.
*******************
50 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)generic Colazal (96 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), psyllium (1/2T daily), mesalamine enema as needed. Gluten free as of 5/30/11. Colonoscopy found no evidence of inflammation on 8/16/1

glutenfreeforme
New Member


Date Joined Apr 2014
Total Posts : 2
   Posted 4/3/2014 5:58 PM (GMT -6)   
Thank you so much for taking the time to respond. I know this may sound silly but aside from the testing itself, i am actually afraid people ( husband) will think i am a hypochondriac and that it is all in my head if they come back showing nothing, yet i of course know my symptoms are not in my head even my mom says i have had a sensitive tummy since i was a kid and i certainly dont want to be ill! I get a lot of flack if i even talk about gluten around my dad lol he calls it "mystical dark matter" or something like that bc it is everywhere...he does not seem to understand how much it can really harm some people

guyfeelsgood
Regular Member


Date Joined Apr 2014
Total Posts : 161
   Posted 4/11/2014 1:29 PM (GMT -6)   
glutenfreeforme

I have experience in this test...... you will not find one GI who has heard of it or understands it.
please post in here what came back. If you were willing to go the PAID route , you may want to seek other testing as well. I have experience here as well and can tell you alot

First --enterolab helped me a great deal... from my research you can be reactive to FOODS in the BLOOD
or GUT
I used this test along with other advanced tests MY GI and GP did not under stand in the end I got better and explained them all to them. But from my experience you cant use just one to get answers
PLEASE post what your results where ,FOOD and HLA DQ results
enterolab is good but not the place to go for genetic testing: there Gluten Sensitivity Gene Test (Molecular HLA-DQB1 analysis) ONLY does the B side to get more answers you need to do a real full one
If you have a gene---- you can be intolerant
page 3 is the full test labcorp offers ---
https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=3&ved=0CDkQFjAC&url=https%3A%2F%2Fwww.labcorp.com%2F.EdosPortlet%2FTestMenuLibrary%3FlibName%3DFile%2BLibrary%26compName%3DL9889&ei=0T9IU4C2CLKu0AGfnYEg&usg=AFQjCNF6Ww02ymOMTfe4UpdIYJc8vmu6rA&sig2=lK0s0hl4-M0f6C14dvCjKw&cad=rja

Look here and look over the HLA link http://en.wikipedia.org/wiki/HLA-DQ
a long read but to ever get CELIAC you need genes from Both A and B if not you can be gluten intolerant

the other testing at enterolab is of better use..
from here .. if you havent dont any panels your GI should do and there all listed on the labcorp link i posted

kazbern -- has excellent advice you need to get checked by a GI to run tests..
If you dont get answers and your still IBS

then you can go to GREATPLAINS LAB far better testing for BACTERIA, YEAST and PARASITES your GI is is going to run. the problem INSURANCE doest pay much of it.. He would have to sign off to get it ran or your GP this is by far the best lab for testing these there areas.
NOT gluten thou. Your local lab even lab corp is limited and will only test for a handful of (BACTERIA, YEAST and PARASITES) this lab looks at 92 types of bacteria, 48 yeasts, 22 parasites
you local lab may look for 5 parasites, A handful of bacteria and ZERO yeast.. there are two tests here that should be run YOUR GI WILL NOT UNDERSTAND alot of it as well.. The lab can explain your markers
alot you can understand your self. look over the sample reports
one is OAT test
http://www.greatplainslaboratory.com/home/eng/full_oat.asp
the other is COMP stool test
http://www.greatplainslaboratory.com/home/eng/stool.asp

This is a great test and a good place to peek into whats going on in your GUT / urine

THE GI thou will be the one to do all the GLUTEN testing...he will follow many of the tests on the labcorp links
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