No Diagnosis

[skichikk18]

Ok so I am a little frustrated and have questions. I have had every test under the sun. They did the genetic testing for Celiac, other blood testing, endoscopy with bioposy, colonoscopy, upper gi with small bowel follow through, ctscan....plus god knows what other blood test. Everything has come back negative, not that that is a horrible thing. So my doctor said just try a gluten free diet. I started January 1st gluten free and have been since. I almost immediatly felt better, going from 5-10 visits per day to the bathroom to about 1-2 with no more of the big D. I went back last week for a follow up and told him how I was doing. I believe I got labeled with IBS. I feel like that is such a catch all of stuff. Am I jsut supposed to be setteled with that diagnosis and continue gluten free or search for an asnwer to the pain and diaharria I was having before. I was to the point that I had lost about 20 lbs because I couldn't keep anything in my stomach and water was even upsetting it. this diet has been life changing so far but I just worry about not having any diagnosis. Another question I have is about how I shoudl feel if I eat gluten. I have had this happen twice and I can't figure out if I ate something bad or not. I get a constant, bad stomach pain that is not relieved by anything and takes a long time to go away. The pain before gluten free used to some what go away with a trip to the bathroom at least for a little while. That does not help at all now, is this what happens if you by mistake eat gluten after going gluten free? I just need some answers.

[healthygirl]

Hi, I know this may sound simplistic, but if you feel better not eating gluten and have noticed such a huge improvement that is probably the best test of all. As you will read on the board here, many have had negative blood and biopsies, but feel so much better on a gluten free diet that they take it out of their diet. I know it can feel frustrating not to have the proof through the testing process, but I think the way to look at is that whether celiac or gluten intolerance, there is still much to be learned and testing doesn't always provide the answer. Be thankful you have discovered the cause of all the pain and issues you have been dealing with as it sounds like you have experienced significant improvement on the diet.

Once going gluten free it sounds like a lot of people have a different experience when getting glutened again (often worse). It was so in my case. I think some of what it is that the body is healing and when exposed to gluten again it is hard on the system. I think a bit of it as well, for me, is that I was used to living with the symptoms for so long and they seemed kind of normal, and when I went gluten free and realized how good I felt, those other symptoms just seem magnified in comparison when I ingest gluten.

By the way, I had a weak positive blood test and after discussion with a gi specialist, decided to forgo the endoscopy....I feel better off gluten and that is good enough for me...without the endoscopy I can't be given the formal diagnosis, but what matters is how I am feeling health wise.

Good luck!!

[rinne]

Hi and welcome.

I agree with Happy Girl.

I appreciate the desire for answers but if the diet works that may be the most important answer. There are many people on this board who spent years getting progressively more ill because their doctors never suggested a gluten free diet, and the tests they did never showed celiac, you are fortunate to have a doctor who has.

As far as testing, the biopsy for celiac is read by as the Marsh Scale and on it there are four levels of deterioration of the villi in the small intestine. The damage is often spotty and a biopsy does not guarantee an accurate diagnosis, especially since the damage is generally seen, as I understand it, only once it is at the third point of destruction of the villi. At the fourth level of deterioration there may be no recovery even with the removal of all gluten from the diet. The Marsh scale is reading damage and once gluten is removed from the diet generally the villi will start to recover and then there is no point to having an edoscopy.

It takes time to adjust, a food journal may be helpful to you in identifying which foods cause you problems.