Refractory Sprue And Lymphocytic Colitis?

[RissaRoo]

Well, I went back to the GI doctor yesterday. I have been so much better since going gluten-free, but still have diarrhea. It's not bad...compared to how it used to be anyway. But I still am not "normal". I'm not losing weight and I seem to be OK in the mineral absorption area. However, last year biopsies showed Lymphocytic Colitis, which the GI says often goes with Celiac's. She says that she's certain that what I have is Celiac's and not a bad intolerance, since I have so many other things that like to live with Celiac's (blistering rash, the colitis, etc). Most of the symptoms go away completely unless I'm glutened, but things are still not 'normal' in the digestion department.

Anyway, yesterday's visit has me confused. She said she is not worried about my overall health at this point. However she also said she thinks I may have refractory Sprue since it's not all the way better! Either the colitis or the sprue or both are not clearing up all the way. It seems like it would be kind of a big deal if I have refractory sprue? Or can it be mild like this and just cause irritating diarrhea and not major health issues?

At any rate, she put me on antibiotics because I may have bacterial overgrowth (which is a distinct possibility, since the only time the D cleared up completely was once when I was on antibiotics for something else). She's thinking we may have to do another scope to see if the Celiac's has really cleared up or if the Lymphocytic Colitis is still going on, or both.

Does anyone know about refractory sprue? If I have it, would antibodies still be showing up in my blood? Last time we tested, they were not. Can damage still be going on inside despite normal blood work? I'm confused here. If anyone else has been dealing with similar issues, I'd love to hear about it!

[trents]

I have somewhat the same problem. After 5 years of very conscientious gluten free eating (including attention to pills and oral hygiene products) I recently had a follow-up endoscopy and biopsy. Inflammation and flattening of villi are still present. I was very discouraged. My local doc has thrown his hands up. Refractory sprue is when celiac symptoms and pathology persist after going gluten free. It is most common in people who are older and went many years before being diagnosed. There seems to be some crossover of autoimmune reaction to other food proteins besides gluten that are somewhat similar.

Here is a link: https://www.celiac.com/articles/710/1/Refra...gram/Page1.html

[dilettantesteph]

You could try to go on a really simple diet of vegetables, meats, and fruits and see if that clears up your problems. Then you could add your other foods one at a time to see what is bothering you. I hope you get better soon.

[jerseyangel]

I have the exact same problem. I saw my gastro again last summer/fall at first due to my liver enzymes elevating. After several tests, she concluded that I have miscrocopic colitis (I think it's the same thing....someone correct me if I'm wrong on that) and that gluten (sprue) affects my liver. Liver panels and ultrasound ruled out any liver/gallbladder diseases.

She also suspected refractory sprue at first, but my endoscopic biopsy and celiac panel was normal. (I've been gluten-free for 3 1/2 years) Due to that, she ruled out refractory.

One of the things she mentioned was bacterial overgrowth. I since moved out of state and never got the chance to look into that any further with her. I do plan to take it up with a GI here.

I did an elimination diet 3 years ago at the suggestion of an allergist/immunologist and discovered through that I was sensitive to several other foods besides gluten, but I still get D at times even though I avoid these foods and am extremely careful about gluten (never eat out, use very few processed foods, etc).

[RissaRoo]

Thanks, guys...this is helpful. I have no idea what to think...the abx seem to be working a little, though...so maybe by the end of the week I can figure it was overgrowth and it will be settled. One can always hope, right? ;o)

[bigapplekathleen]

Just wondering if you are better. One thing I have learned from some other LC patients is that LC often responds to Cipro or Levaquin. (the danger of these drugs, though, is that they can cause tendons to rupture.) I ALWAYS get better on those 2 antibiotics.

I have been on Entocort for 19 days now... feeling much better and symptoms are subsiding.

Kat

Celiac - diagnosed August 2003

Lymphocitic Colitis - diagnosed May 2009

Other issues: Epstein Barr Virus, low Vitamin D, Chronic Canker Sores, Ovarian Cyst, Fibrocystic Breast Lumps, Immune deficiency, Elevated C-reactive protein, parasites (2x), fevers, night sweats, Neck injury (whiplash 3x), Thrush/yeast infection recently, food allergies (52) and drug allergies (most).