Introducing Myself And Asking A Couple Questions

[Bamboo]

Hello my fellow gluten-freers,

I've been snooping in the shadows here for about 6 months and have decided to become much more active on here. So I look forward to getting to know everyone.

I am currently in the process of seeing (yet another) gastroenterologist and will be getting a endoscopy soon with another run of blood-work. But let me start from the beginning...

I've had gastro issues since I was a small kid (both D and C, underweight, anemic, cramping...). When I was in high school it was determined that I was lactose intolerant which helped but did not clear up all my GI problems. During this time I was noticeably "foggy", fatigued, and had bouts anxiety. It was mostly written off as me being just a quiet and introverted kid even though I was social, energetic when I could be and active.

In college I really experimented with my diet to try to better my condition. I tried dairy free, soy free, meat free but the only time I ever felt noticeably better was when I was working at a specialty health-food store and could eat low/no-carb food very cheaply (yes this was when the Atkins diet was in full swing). I didn't realize at the time but I was living a gluten free lifestyle. I felt amazing. Stopped sleeping so much, had energy, lost the bloat, no gastro issues of any kind. Then I left the health food store and once I was on my old diet again everything came back in a hurry. This kept on till I graduated college and moved for a job. I was working long hours for little money and my diet reflected that. Lots of cheap pasta and boxed meals. Still anemic, still underweight, still dealing with a gastro issue that would flare up and leave me homebound from time to time. Doctors couldn't figure out what was wrong. Not Crohn's or ulcerative colitis and all my testing for food allergies came back negative. Then I got really sick. The doctors thought my appendix was about to burst so I was rushed to the ER with intense pain and a high fever. They were prepping the OR and ran a CT scan to discover that my appendix was not about to self-destruct but I had a swollen, infected, blocked large intestine in my lower right hand quadrant. I was then sent home with antibiotics, vicadin and told to have nothing but liquids for the next 5 to 7 days. I healed from that but now all my issues had gotten so much worse. I suffered from cramping, pain, intense D and C (I had forgotten what a normal BM was like), fatigue, brain fog, chronic sore muscles and back (which nothing could fix) and what I would keep on hearing from doctors was that I was healthy (beyond the anemia) and it's just IBS. It was beyond frustrating to be told you

[chasbari]

I went gluten free at the first realization that I was likely dealing with Celiac. I knew I was not supposed to before the blood tests but I was so desperately ill I felt I had no choice. The thought that the gut could heal that quickly from such severe damage seemed improbable to me and I knew I was in very bad shape. In spite of testing negative with the blood test my anecdotal history and initial response to the gluten free diet was enough to convince my GP to order a scope and biopsy anyway. The diagnosis was a no brainer for my gastro. All he needed was a quick look at the biopsies and he immediately went with the celiac DX. Yes, there is a learning curve as to avoiding glutens and once you have gone gluten-free, accidental glutening seems much worse in many instances. I tried to follow a diet using alternate grains.. corn, rice, quinoa, etc... and found I couldn't tolerate any of them. Once I went paleo I began to improve quite rapidly. I found, though, that I was eating too much fruit and seem to have an issue with fructose malabsorption. A little bit here or there seems to be tolerable but once a day is enough. Good luck with your journey and glad you are here. I learn something new here every day. Wouldn't have made it without this place!

[ravenwoodglass]

So that leads me to my questions:

Does anyone else suffer from very swollen intestines and extreme pain when passing gas/BM when they are swollen?

What does everyone eat when getting back on the horse after being gluted? Nothing sounds remotely good except for Pho soup, juice and plain rice.

Who here has gone gluten-free before getting tested for Celiacs and did you start eating gluten again so you can get the blood test?

Thank you for reading such a long account of my journey. I'm a bit nervous, scared and frustrated and it's nice to have a community of people to pull from.

Bamboo

My intestines also get swollen. On a CT they were able to see the thickening of the intestinal walls. The pain I get from being glutened and pregluten free is indescribeable. The kind of pain where it is so bad you shake, get pale and feel like your going to pass out on the toilet.

I was told by the doctor that did the preliminary diagnosis to never touch gluten again. I am a seronegative celiac so the blood tests were useless for me but my GI demanded I go on a gluten challenge before the endo. The results were not pretty and while I did get diagnosed it took me a long time to recover from that deliberate glutening.

It seems your body has given you the answers. It is up to you how much you want to go through for testing. Even on a full gluten diet up to 30% of us will have a false negative on testing. The truest test is how our body responds to the diet. It seems the diet really helps you a great deal. I would suggest that no matter whether you decide to challenge or not that after you have all the testing you choose to do that you go back to the diet strictly.

[Bamboo]

Thank you for the replies so far. It was interesting to hear that you experience so much pain with the swelling, Ravenwood. It seems like a symptom that I don't hear alot of people talking about. I've actually passed out once on the loo because of the pain. Good thing there was a wall next to me that I fell against or I would have done a header onto the tile floor. Try explaining that bruise to your co-workers...

[GFinDC]

I went gluten-free before testing. I couldn't get an appointment for 3 months and didn't want to wait. My blood test came back negative but I already knew from my symptom resolutions that I was celiac. Plus anytime I got glutened my body reminded me in a hurry, and still does.

I had black stool and red blood sometimes, painful bloating and outer-spacey sounding gurgles and gut groans to accompany them. Plenty of time I couldn't sleep at all because of it. It's not something I miss, that's for sure.

I thought about doing the challenge for purposes of convincing my family members to get tested. But decided with heads as hard as theirs it would be waste of time. I don't think I could have stuck it out anyway though.