Finally, Some Answers!

[darkangel]

My gastro finally consented to run a full celiac blood panel along with some other blood tests. I'm trying not to get my hopes up, but it sure would be nice to know something definitive about my diagnosis... ulcerative colitis, Crohn's or celiac. I go back in two weeks.

[Guest j_mommy]

Great that you are heading in the direction of answers!!! Let us knwo what you find out and ask for copies of the results for your records!

[ravenwoodglass]

I hope you can finally get some answers, but one note of caution about the results, as stated get them in your hands and look at them even if the doc says they are negative. Many times a low positive will be stated to be negative, even if it is only one point into the positive it is positive. Also be sure to try the diet even if testing is negative. Relying on blood testing cost me years off my life so be sure to give the diet a good strict try no matter what the result.

[darkangel]

Well, I eat pretty much 95 percent gluten and dairy free already... hence my concern about the blood tests giving a false negative. My doc said something about the different types of antibodies and talked like one of them would show accurate results even though I haven't been regularly consuming gluten.

I was diagnosed with IBS in the early 80s and "upgraded" to ulcerative colitis in '99. I'm able to pretty much maintain remission through diet, fish oils, etc. But this latest episode is atypical for UC. The pain came on suddenly, was very localized to the right and down slightly from my navel - not in the colon area, and seemed to be precipitated by a restaurant meal that included several things I know I shouldn't eat: gluten, dairy, chocolate and sugar.

My GP thought I had appendicitis, but a CT showed the appendix was normal, but the ascending colon was abnormal with thickening of the walls. Past UC-type inflammation was always on the opposite side and, from my understanding, it's very unusual to have the right side affected in isolation. So, all these oddities finally made my doc feel he could order the full gamut of blood tests and be able to defend them to the insurance company.

[darkangel]

Only two more days to go. I'm half excited and half dreading it. I fear the news will be something worse than celiac disease... or there'll be no definitive answer at all.

[Joni63]

Good luck with your results.

I know the waiting is the hardest part, but at least you should have a better idea of what's going on. Hopefully you will get some answers or maybe he would agree to further testing if everything's negative.

Let us know how you make out!

[darkangel]

Well, this figures. Just got back from my gastro doc's office. All celiac panel results were normal. Some other test they ran came up positive for inflammatory bowel disease, indicative of ulcerative colitis. (Which was the diagnosis I was given in '99 when I first got extremely ill.) Everything else is normal... iron and hemoglobin levels, proteins, thyroid... even my bone density scan shows I am now back in the "normal" ranges and evidently am no longer qualified as having osteopenia.

Results of my endoscope show no bacteria in the stomach. Biopsy of upper small intestine shows no indication of celiac disease. Flex sig showed no signs of ulcerative colitis in the descending colon. All I have is a CT from my ER visit that showed a "thickening" of the colon walls in the area of the turn between the ascending and transverse sections of the colon. My GI doesn't even want to do a colonscopy because he says we'll be looking at the "inside of the tube" and won't be able to see any thickening as shown on the CT. Having trouble in this area with no inflammation in the rectum or descending colon is not typical for ulcerative colitis, so I guess we don't know what's going on.

So. I guess I'm back to just eating carefully and mostly gluten free, keeping a food journal and trial and error. This is very frustrating. It's nice to know all those blood tests were normal, but I still don't have answers for why I have digestive problems, food reactions or why I look perpetually pregnant. Maybe it's just a combination of being gluten/dairy intolerant and having candida issues. *sigh*

[melmak5]

darkangel - I am so sorry that this round of tests didn't offer you more information.

Just a thought here... have you ever been 100% gluten free for a significant amount of time and did you notice any improvements? If you are sensitive to it and you are still consuming a small amount maybe its keeping you irritated enough to keep the distended belly going.

Is it possible to get a second opinion or do you have "next step" with this doc?

[gfpaperdoll]

yes, not being 100% is enough to keep you having problems, you are probably very sensitive.

But, I know a couple of celiacs that eat like that, just enough to keep them from being bedridden...

It will be interesting to see if the 90% people get any other autoimmune illnesses.

Have you thought about testing at Enterolab.com for the gene test?

[darkangel]

  melmak5 said:

darkangel - I am so sorry that this round of tests didn't offer you more information.

Just a thought here... have you ever been 100% gluten free for a significant amount of time and did you notice any improvements? If you are sensitive to it and you are still consuming a small amount maybe its keeping you irritated enough to keep the distended belly going.

Is it possible to get a second opinion or do you have "next step" with this doc?

Yes, I have been completely gluten free. Actually, I was on the Specific Carbohydrate Diet for over a year, which is not only gluten free but grain free. I did well, but I was REALLY sick when I started the diet, so although it helped me recover, there was no sense of suddenly feeling healthy and normal. I'm trying to get up the gumption to get back on it, but I dread it. It's so restrictive and labor-intensive.

No, there's no "next step." He was kinda like, "Congratulations. These test results are great. Off you go. Just call us if you start to have problems." I've seen six different GIs over the course of my illness, along with other doctors. Even consulted with a brilliant doctor out of San Francisco by phone. They all seemed to be stumped by me. My wonderful general practitioner - who practices complementary medicine - tells me I now know more about digestive diseases than he does because of the research and reading I've done over the years.

[darkangel]

  gfpaperdoll said:

Have you thought about testing at Enterolab.com for the gene test?

I've thought about it, but have been reluctant to spend the money as I'm sure insurance won't cover it. There's no history of celiac in my family, so I tend to think I don't have the genes, but I do obviously respond well to a gluten-free diet. I think my situation is complicated by other things. It's not just a gluten issue for me... it's a host of other things - candida overgrowth, food reactions, lactose/casein sensitivity... who knows what all. I guess I'm looking for an easy, tidy answer and there's not one.

[newlyfree]

Hey darkangel - sorry to hear you have no answers. That' s so frustrating.

Question -what test exactly did your doc think would show accurate results without gluten ingestion? I'm asking 'cuz I've never heard of one

Also - did the doc test you for Crohn's? The area of your pain sounds like where most Crohn's patients hurt - and I've heard many Crohns sufferers think they have appendicitis at first. (I'm still waiting on the last of my test results for Crohn's so I've been reading up on it... colonoscopy in 2 weeks is last step).

[darkangel]

  newlyfree said:

Question -what test exactly did your doc think would show accurate results without gluten ingestion? I'm asking 'cuz I've never heard of one

Also - did the doc test you for Crohn's? The area of your pain sounds like where most Crohn's patients hurt - and I've heard many Crohns sufferers think they have appendicitis at first. (I'm still waiting on the last of my test results for Crohn's so I've been reading up on it... colonoscopy in 2 weeks is last step).

I guess he thought since I haven't been 100% gluten free and he was running the entire celiac panel as well as taking biopsies, something would show up if gluten was a problem.

When I was originally diagnosed with ulcerative colitis in '99, a colonoscopy revealed bleeding and inflammation in the descending colon that was in line with UC. Since that time, there's been some debate about it being Crohn's instead and this latest episode is definitely not typical of UC. (And a flex sig showed the descending colon is now normal and healthy.) But, as I said, he ran some type of inflammatory bowel blood test and it came back "positive" and "indicative of ulcerative colitis," although he didn't explain how the test worked or what the numbers/levels were.

I do know that I have recurrent struggles with candida, so now I'm looking at that angle again, as I know that's at least played a part - if not the total cause - of my digestive difficulties dating back to my college days when I was diagnosed with IBS. My plan is to experiment with a gluten-free, dairy-free, anti-candida diet while taking natural anti-candida supplements and Nystatin and see how it goes. I may just be one of those people that never gets a firm diagnosis.

[newlyfree]

Ouch - I'm sorry you've had to go through all that.

Yeah, I got a similar blood test result - 1 of 10 tests they ran came back 'positive, possibly indicative of Crohn's' though i don't have any of the typical symptoms as far as I can tell. So weeks of stress until my colonoscopy (which I'm sure is doing it's share of badness for my intestinal healing).

Sigh - one day doctors will be able to figure this stuff out. But until then, I prefer to try to heal myself. 10 years of mis- or no-diagnosis has kinda soured me on all of them.

[darkangel]

  newlyfree said:

Sigh - one day doctors will be able to figure this stuff out. But until then, I prefer to try to heal myself. 10 years of mis- or no-diagnosis has kinda soured me on all of them.

Yeah, I feel that way, too. Not to mention the destructive rounds of prednisone and immunosuppresants. I'd think you'd have a better selection to choose from in California, though. I wish I lived in CA or NY where the more progressive docs seem to be clustered.