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Hi all---

 

I know this is long but I'm really grateful for any response even if you just skip to the end...

 

This question is about my colonoscopy results and upcoming endoscopy but here is a bit of background on why I am being tested.

 

I am a 21 year old currently in the process of testing for celiac disease. I exercise almost every day, drink plenty of water, and eat plenty of fiber. I have had serious constipation since December of last year (only going if I took a laxative and often not even then, so maybe once a week). Between March of last year and this past December, I had occasional constipation every few months and before March of last year never had constipation and actually frequently had the opposite problem, which my regular doctor thought was because of Lactose intolerance or anxiety (I first went to the doctor for stomach discomfort in 6th grade). That same March I also began having horrible panic attacks that became frighteningly frequent last December at the same time that the constipation really kicked up. My period also became irregular that March despite the fact that I am on the pill. Changing pills did not help. I followed a dairy-free diet for about 9 years before the constipation began, though I was never tested for lactose intolerance. 

At the suggestion of a friend who has celiac disease, I tried going gluten free in February of this year and began to have BMs without any laxatives within four days of starting the diet. Within a few weeks my panic attacks had also stopped, and I seemed to be able to eat way more food than I ever had before and was even losing weight. I had always thought I had a really slow metabolism. What a great time that was for at least a little while.

During this one-year period from March of 2014 to March of 2015 I also saw my doctor several times, but was always told that the digestive problems were the result of a panic disorder, not the cause and that I needed to relax. I saw a therapist and was prescribed Ativan---- which medication, btw, doctors then loved to say was the cause of my constipation even though the constipation came first.

Anyways, the gluten free diet seemed to be fixing the constipation as well (not perfectly) until a few months ago (April). I then suggested to my doctor again that I might be celiac, but she looked at my arm and said that she wouldn't test me because I didn't have a rash. She told me for yet again to relax and eat fiber. Getting no help from her, I then started taking magnesium which really really helped for about a month (even though the poop was liquid and pretty much undigested) until a couple of months ago (May), when I got backed up again. I then cut out my daily packet of "gluten-free" oats. After that it felt like months of piled up BMs were pouring out of me every day for about a week. My panic attacks after cutting out oats have completely gone away, and as long as I take the magnesium (less now so it's not liquid) and eat gluten and lactose free I have a relatively normal BM every day. 

 

Testing

By now you have probably realized the issue with only being tested now, months after going gluten free. I went to a gastroenterologist about three weeks ago. She found blood in my stool and what she called a "pocket" in my rectum from straining. I got blood tests for all sorts of deficiencies and for celiac as well as a stool sample taken for parasites. No surprise on a gluten free diet, these all came back normal. About a week later I had an anorectal manometry (to test my pushing ability). The day after that I had a colonoscopy. Both were normal.

 

Here is my first question: About a week after the colonoscopy I was told that the biopsy they had taken was positive for celiac, and that I would need to come in for an endoscopy in two weeks. Is this possible? I have heard that sometimes doctors are able to reach the end of the small intestine (which my report said that they had) during a colonoscopy and to take a biopsy from there. I have also heard that only an endoscopic biopsy can diagnose celiac disease.

 

Here is my second question:  My gastro doctor knows that I have not been eating gluten for a long time and has never mentioned to me that I need to eat gluten before any of these tests. My endoscopy is in exactly one week. After my blood work came back negative, I tried eating gluten, thinking f*** it. I got a really bad headache and what felt like the worst sort of menstrual cramps, as well as a lot of gas. The small BM I had the next day was very painful, and I had only had a few whole wheat crackers. Either way I wanted to test what would happen if I went back to eating as much gluten as I used to and I drunkenly ate three pieces of white bread one night. The next day my voice was gone and I could hardly move. It felt like I had appendicitis-- I'm sure the alcohol was a contributing factor though I definitely did not have enough for it to cause this much pain, as I rarely ever have lasting hangovers. My hands were shaking like they used to after a panic attack and I thought I might be about to have one.

After that little experiment, I decided I would eat gluten free even if the test results were negative. Two days of gluten-free eating went by and I was beginning to feel human again when I got the call about the colonoscopy and scheduled the endoscopy. Again, no mention of needing to eat gluten before the test. Should I eat gluten before the test? For obvious reasons I'm a little nervous about the idea. A few hours ago I ate about two pieces of bread just in case when I call tomorrow they say that I need to. Within two hours I was very gassy and began to get a headache (Can a reaction even happen that fast or is this all in my head?). Also, is it too late to eat gluten before the test? I did technically start last Thursday though it was only a few crackers a day until the drunk bread eating debacle on Saturday night, after which I had a two day break.

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Celiac.com Sponsor (A8):

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I think you need to some more research before you have the endoscopy. The standard rule is that you must be consuming gluten at least 2 to 4 weeks prior to an endoscopy (8 to 12 weeks befor the blood tests).

http://gut.bmj.com/content/early/2014/06/10/gutjnl-2013-306578.long#T2

http://www.cureceliacdisease.org/archives/faq/what-is-a-gluten-challenge

Maybe your doctor thinks that because he found damage (biopsy obtained during a colonoscopy) he can find it with the endoscopy if he acts fast.

I think more discussion is needed with your doctor.


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