Hi new to this forum and feeling confused...

Been seeing a GI/Hepatologist for 6months with liver problems. Lots of leisions of different kinds.. He did full blood tests of everything... Came back with extremely iron deficient. He felt it was so low there must be a reason behind it (bleeding somewhere) and recommended a colonoscopy and endoscopy.

Due to me already having a 3 day stay in hospital earlier in the year with diverticulitis infection and having already gone down the colonoscopy route with the surgeon I was under with no outstanding problems, just diverticulitis, we just did the endoscopy..

The GI's thoughts were ulcer or celiac.. This is when I thought things started to make sense because I had been having many GI problems for awhile and I do have an uncle and aunty who are celiac. We did the endoscopy five weeks ago and have finally got results as "within normal limits". I had had way enough of all the stomach problems I was having, toilet 4 or 5 times a day, noisy stomach, bloated to the point people on the train offered me seats thinking I was pregnant.. so I stopped eating wheat and trying to avoid gluten.. seen a marked improvement..

The other thing is my Aunt believes I could not be celiac because I am very overweight and my cholestrol is sooo high 8.1.. Any advise please I feel like I'm spinning in circles...

Welcome to the Forum!! You will find lots of support here!!

Sorry to hear about all of your struggles! The tests for Celiac are pretty notorious for being negative. And even with an endoscopy, a biopsy can miss the part of your intestine that has been affected. There's 22 ft (if memory serves me correctly) of small intestine, so that's a possiblity. Have you actually seen the results of your tests? I would suggest you get a copy, if possible.

And there's a large percentage of Celiacs who are actually overweight, not under. It's the whole "starvation" thing. When your body thinks its starving, because it's not absorbing many of the nutrients, then it hangs on to anything that is does get... hence the weight issue. I bet if you remain gluten-free you'll begin to start losing weight.

How long did you go gluten-free and are you still? If you saw marked improvement, stick with it. Dietary response is just as valid as any test. Many of us are self diagnosed (myself included) because of inconclusive tests, but we know that gluten is poison to us. So, I would encourage you to remain gluten-free for longer and just watch things get better!!!

I agree completely with lizard00's comments. So I'll just add my encouragement to stick with the diet, and see how much better you feel. And yes, the extra weight might easily diminish as your recovery progresses.

Welcome to the board!

The diet is the truest test there is. Stick with it and welcome.

I also was not officially diagnosed by the doctor. I had so many tests done becuase of over year straight of diaharria. My endoscopy came back negative as did my blood test. My mom has crohns disease and we thought maybe that but every test they did, and they did a lot, came back negative. He suggested trying a gluten free diet to see how I felt. After about 2 weeks on it I felt great and have been gluten free since Jan 1. I dont have the diaherria anymore and no more crazy bad stomach pain and cramping. My hair stopped falling out and i stopped losing weight. Before I went gluten free I was bairly eating because everything went straight through me (5-10 times a day in the bathroom). I go back to my dr in March to see what he has to say, but I feel so much better on this diet I wouldn't imagine he would have me stop. I finally have energy again also, it is great. I am also hoping this will help me get pregnant as I have been seeing a specialist for about 2 1/2 years for that also.

Thankyou so much for the warm welcome and encouragement...

I have only been following the diet for a couple of weeks but have felt such a marked improvement I have decided to keep going despite the results of the biopsy as I do not want to go back to how I was feeling before.. I have gone from going to the toilet 5-6 times a day to only the once a day, which I cannot remember having been like that for years!!! and my stomach is not as bloated up as it has been and the cramping and noisy stomach has improved. My energy levels are still a struggle but with my iron so low I am prepared it could take some time to get those back up..

I am glad I found this forum which is full of such wonderful information and support...

Glad to hear you are listening to your body. You should think about getting some sublingual B12, that should help a great deal with energy and other issues. So happy to hear you are on your way to recovery!

welcome to the board! I am glad you are staying with the diet. IMO the diet is the best diagnostic tool when other tests are questionable. I am also enjoying the one trip a day to bathroom

kathy