Gluten Free For 2.5 Years, Yet No Change

[mtnjen]

I am looking for some advice.

I had a weak-positive Tissue transglutaminase IgA test (27.6) in the summer of 2006. My IgG test was negative. I had endoscopy and colonoscopy biopsies done at that time which were negative for celiac, but positive for Ulcerative Colitis. I didn't get a clear-cut answer from my doctor on whether or not to go gluten free, but decided for myself to eliminate all gluten from my diet because of the positive blood test.

I have now been on a strict gluten free diet for 2.5 years, yet I feel no better. I know I am not getting cross contamination. I am well-versed in the gluten free diet and read every label, know the sources of hidden gluten, watch my prescriptions, toiletries, postage stamps etc., eat virtually no processed foods, do most of my cooking from scratch and haven't eaten out in a really, really long time. Not only do I feel no difference on the gluten free diet, but my Ulcerative Colitis continues to get worse.

I am ready to forget this diet. It is such a pain and seems to do me no good. Is possible that I got a positive IgA test but don't actually have gluten intolerance?

I am going in for yet another colonoscopy tomorrow to have my worsening Ulcerative Colitis evaluated, and I am going to try to get my doctor to give me an opinion as to whether or not I really need to be on a gluten free diet. I would love to get some of your thoughts as well. Has anyone else had a similar experience?

Thanks for the help.

[April in KC]

Some might kill me for asking this, but have you ever done an intentional gluten challenge? My suspicion is that you would find out pretty quickly whether you have gluten sensitivity or not. Maybe not in a day or two, but probably within a few weeks.

[psawyer]

Some might kill me for asking this, but have you ever done an intentional gluten challenge? My suspicion is that you would find out pretty quickly whether you have gluten sensitivity or not. Maybe not in a day or two, but probably within a few weeks.

I won't. It is a good question.

[mtnjen]

To answer psawyer and April's posts-- Yes, I did do a bit of a gluten challenge at one point. 6 months after going gluten free, I ate some regular food at a conference. I felt a little bloated a couple of weeks later, but other than that, didn't notice much of a difference. I have no idea if this had to do with gluten since this is a major symptom of my Ulcerative Colitis anyway, and I often get this same bloaty, crampy feeling even when I am on a strict gluten-free diet. I have also tried to eliminate dairy and notice no change with that either.

[rinne]

Hi and welcome.

That is a long time not to see any improvement. I can relate.

Have you ever considered the Specific Carbohydrate Diet?

[ravenwoodglass]

Have you tried an elimination diet? Have you replaced gluten with soy in many of your foods? Many of us are also reactive to soy, it took me a few years to figure that one out. What about casien or milk protein, that is a problem also for many. Do you regularly consume oats? For some of us they are safe but for many they are not. You should have seen some resolution of your symptoms much sooner than 2 years and I hope your doctor is able to figure this out.

[dilettantesteph]

You could try another blood test after your gluten challenge. 27 isn't that high. Apparently there are other reasons than gluten intolerance or celiac for a positive blood test, but they would come and go. Something like that according to my GI doc. If your test was negative after a gluten challenge you could be pretty sure that you don't have celiac.

[sbj]

What treatment have you tried for your Ulcerative Colitis? I took a quick look at a Wikepedia page:

Open Original Shared Link

And there are just so many things there to try:

Drug therapy: lots of different drugs to try (Mesalazine, mesalamine (Asacol, Pentasa, Salofalk, Lialda, Ipocol and Mezavant), Sulfasalazine, Balsalazide, Olsalazine, Cortisone, Prednisone, Hydrocortisone, Methylprednisolone, Budesonide, Mercaptopurine, Azathioprine, Methotrexate, Infliximab

Dietary modification: fiber, Lactose intolerance, avoid fresh fruit, caffeine, carbonated drinks, high fructose corn syrup and sorbitol-containing foods.

Fats and oils: Eicosapentaenoic acid (EPA), derived from fish oil. 15-18 capsules a day.

Short chain fatty acid (butyrate) enema

Antioxidants: Vitamins A, C and E, Coenzyme Q10, Selenium and manganese. Vitamin B6 and iron should not be taken in excess.

Herbals: Vitamin U (methylmethioninesulfonium chloride, MMSC) has been shown to reverse ulcers, Kampo medicine is used in Japan; Oren-gedoku-to is one such traditional herbal medicine being used both in Japan and China

Bacterial recolonization: Probiotics may have benefit.

Fecal bacteriotherapy

Helminthic therapy

You don't make it clear in your post what you have tried yet for your colitis.

As far as the celiac, maybe you don't have it. I did not see where a gluten-free diet in particular has been recommended for treatment for ulcerative colitis. The use of the SCD is controversial but might help.