Not yet diagnosed, awaiting biopsy results - Help!

[Bellaboo]

Hi everyone : ) I am new here - absolutely wonderful site and wonderful people and wonderful information. If anyone could shed a little bit of light on something on my mind right now, that would be so great.

I could write a massive long message and say so many things here but I will try to just focus on the main question on my mind at the moment. Awaiting biopsy results from a colonoscopy, suspecting MC at the moment, no colitis or chrons shown during the colonscopy. My question - is it likely that if I have MC it will show on the biopsies even if I have been gluten free and about 85% better and well than I was last year when symptoms were at there absolute worst (before I went gluten and wheat free and symptoms improved)? When biopsies were taken, around a month ago now, I was miles and miles better than I was a year ago with horrendous symptoms, but am wondering if MC will show up if I have it, if symptoms are not at there most violent anymore? Does anyone have any thoughts on this?

I have had "IBS" for years but after taking Naproxin (something I have seen on this website is found to aggravate and spur on MC sometimes?) for whiplash in May last year, I turned violently unwell and was struggling for the rest of the year with an endless list of horrible symptoms. I was ploughing through days in work, trying my hardest to carry on as normal, in such a bad way. After I had an endoscopy which showed some flat villi (I think), she took biopsies but they came back negative for coeliac, but before I had recieved the results I had already tried going gluten free just in the hope for a miracle, which it was, and my symptoms drastically diminished as time went on. I was so happy and I am still strictly gluten and wheat free and become very unwell for up to a week if I slip up by mistake or my food gets contaminated somehow.

So after reaching a kind of plateau, a few months later after going GF, I wasn't feeling as well as I was anymore (but was no where near as bad as previously!!), so I figured something else might have been making my body unhappy and not quite right. I now avoid milk and dairy as it seems to make me unwell too, and very very nausea's, but after seeing my Gastro lady during this time after a calprotectin stool sample result came back 'marginally raised' (so only a little bit), she suggested it was worth doing a colonoscopy as there was obviously something not quite right in terms of inflammation etc..... So.... Here I am! Colonoscopy showed no obvious ulcers, colitis, chrons, but biopsies taken to see for anything else like MC. Is anyone in my shoes or have any thoughts? Thanks for any help, thoughts, advice etc, I appreciate it so much.

Lots of love n light

[tex]

When biopsies were taken, around a month ago now, I was miles and miles better than I was a year ago with horrendous symptoms, but am wondering if MC will show up if I have it, if symptoms are not at there most violent anymore? Does anyone have any thoughts on this?

Hi Ella,

Welcome to our Internet family. Your relatively young age complicates the answer to your question. Ordinarily it takes years for the damage to the intestines caused by gluten to heal. But the younger we are, the faster we heal. Therefore if you happened to have minimal infiltration of lymphocytes into the epithelia of your colon to begin with, it's possible that with exceptional healing, the number could have declined to below the minimum threshold that qualifies for an oficial diagnosis of MC.

However, IMO that's not likely because of your observation that you have had "IBS" for years. That suggests that your lymphocyte count may have been relatively high before you started the diet, so I feel that it's very likely that the biopsy results will show evidence of MC.

The reality is that "IBS"only exists in the minds of gastroenterologists. "IBS" is virtually always undiagnosed celiac disease or MC. Doctors are loathe to say, "I don't have the foggiest idea what's wrong with you". It sounds so much more professional to say, "You have IBS", so they created the disease to save face.

Also, if you actually had any flattened villi on small intestinal biopsy examination, you almost surely have celiac disease. The celiac diagnostic criteria are so primitive and unreliable that false negative results seem to be the rule. It's claimed by some authorities that for every patient diagnosed with celiac disease, approximately 20 remain undiagnosed.

Again, welcome aboard, and please feel free to ask anything.

Tex

[JFR]

Hi Ella,

I would like to add that a "correct" diagnosis is not as important as it might seem, especially since you have already figured out that dietary change is the key to your treatment. Getting the right diagnosis is important if figuring out exactly what is wrong leads to getting the treatment exactly right but since you know going in that diet change helps you, getting the diagnosis of MC might help legitimize your symptoms in your doctor's mind or enable you to get a prescription medication if you want to go that route, but in terms of treatment you are already well on your way to figuring out what you need to do. All there is left to do is fine tune what needs to be eliminated and then have the patience to let the dietary changes do their magic.

Jean

[tex]

Tex

[CathyMe.]

Hi Ella,
Welcome and I so agree with Jean!