Please Help!

[mandm1]

I am fairly new here, so please bare with me.

I've been diagnosed with microscopic colitis 2 years ago and my current

biopsy showed that I have an inflammation in my small intestine. My GI

doctor informed me that that inflamation is almost always associated

with Celiac Disease. My ville, however, was normal. After the biopsy, I

was put on gluten-free diet (very strict-I checked every source that might

potentially contain gluten). My blood results (CeliaPlus) came back

today and it showed HLA DQ2 being positive and everything else being

negative. I've been on gluten-free diet for over 3 months and see no

improvements whatsoever. I am so confused and frustrated. I just want

to feel better and finally know what's wrong.

Is HLA DQ2 a good indicator of celiac disease?

Any help would be appreciated.

[CarlaB]

HLA DQ2 is a gene that predisposes you to celiac disease. It's carried by approximately 30% of the population, yet only 1% of the population has celiac. It is not diagnostic of celiac disease.

With negative tests and no dietary response you may not have celiac. You can have false negatives on testing however, so it's the lack of dietary response that concerns me.

Are you still eating dairy?

What are your symptoms?

[mandm1]

I am experiencing diarrhea, stomach ache (including bloating) and weight loss (although my weight has been stable for over 2 months).

Before I went on gluten-free diet, I tried dairy free diet for about 1 month and saw no improvements. How long does it take for your ville to show damage? As I stated earlier, my ville looked normal during biopsy.

I also have concerns with this blood test, as I was tested while being on gluten-free diet!

I appreciate your help

[CarlaB]

The blood test could be negative from you being gluten-free, but what concerns me is that you've seen no improvement at all. With negative tests and no improvement on the diet, it seems that you may need to keep looking.

Have you been tested for Crohn's?

Are you sure you're 100% gluten-free? Is there any risk of cc?

If you do have celiac, cutting out the dairy could be the key to healing. Since you weren't gluten-free when you were dairy-free, it might not have helped then, but may make a difference now.

The fact that you have stopped losing weight is one improvement.

Hopefully, others will chime in here. Are your only symptoms diarrhea, bloating and weight loss? Or do you have other seemingly unrelated symptoms?

[ravenwoodglass]

I agree with cutting out the dairy also for at least a couple of months. Also try to minimize your chances of CC, be very careful at home and if possible avoid restaurants and processed foods for a bit. Make sure you have checked every med you take, script or OTC. If you are taking generic drugs don't assume because the name brand is safe the generic will be too.

Have you been scoped? A colonoscopy would rule out Chrons and a bunch of other stuff if you have not had that done.

It does take a long time for some of us to heal and the fact that you are no longer losing weight is, I agree a good sign.

I hope you get some relief soon.

[Nantzie]

I would also suggest making sure you're 100% gluten-free; avoiding second-hand gluten (cross contamination) like the plague, no shared cooking tools, new cutting board, make sure your haircare products, makeup, lotions are gluten-free, etc.

So many times we hear about people getting a diagnosis and being told by their doctor "don't eat gluten". Which is not even close to an accurate way to describe what the gluten-free diet really is.

This is a good place to come to learn how to do the gluten-free diet. Plus, as you've already seen, there are a lot of people who have experience with other health issues that may provide answers for you as well.

Welcome to the board. Make yourself at home.

Nancy

[mandm1]

Thank you for your input!

Ive had colonoscopy and it confirmed that I have Lymphocytic Colitis.

I am having a very tough tough with adjusting to gluten-free diet, so eliminating other things will be a big challenge for me. Would lacoste breath test show if I have dairy allergy?

I try to be extremely careful with eating gluten-free and avoiding cc. However, I like to eat out once a week (its only been a local restaurant with gluten-free menu and Outback).

I am also somewhat puzzled as to why my Dr. gave me Celiac Panel blood test while I am on gluten-free diet. After reading up on celiac disease, I am under assumption that blood test will not be accurate if your are on gluten-free diet.

[corinne]

I have collagenous colitis, but I do not have celiac disease. My villi are normal, but there is inflammation. Collagenous and lymphocytic colitis are both types of microscopic colitis. There is a strong correlation between microscopic colitis and celiac disease. Many people with microscopic colitis have a first degree relative with celiac disease and carry the celiac genes. Sometimes those with celiac disease can also develop microscopic colitis.

Often, those with microscopic colitis will improve with a gluten free diet even though they test negative for celiac disease. Similarly they may not be able digest dairy even when a test for lactose intolerance is negative. It may also be worthwhile to try the specific carbohydrate diet (no grains at all, among other things).

Although changes in diet often help or even completely eliminate symptoms of microscopic colitis, they may not be enough. Peptobismol, imodium or lomotil or other antidiarheals are the first line of treatment. If these don't work asacol or failing this steroids (entocort etc.) can bring relief. I would try diet first. I eat a very simple diet - chicken, fish, well-cooked easy to digest veggies ie carrots+green beans, bananas, avocados and I am mostly symptom free. I take imodium or lomotil for the occasional flare.

If you have questions, feel free to PM me. There are also some boards for microscopic colitis.