Celiac Disease To Refractory Sprue

[Gemini]

Character assassination does not help your argument. It only serves to make you look bad.

I think everyone knows how dangerous refractory sprue can be. I'm sure USF1970's doctors are taking it seriously.

Character assassination? Let's not make mountains out of molehills.....

[Lisa]

It doesn't usually occur if someone has been long term gluten-free and very compliant.

Refractory Sprue is diagnosed when strict compliance to the diet, over an extended period of time, indicates continued villious atrophy.

It is non-responsive to the gluten free diet.

[psawyer]

Character assassination? Let's not make mountains out of molehills.....

Let us see if we can get back to helping the original poster, USF1970. No point in attacking each other.

[IrishHeart]

Refractory Sprue is diagnosed when strict compliance to the diet, over an extended period of time, indicates continued villious atrophy.

It is non-responsive to the gluten free diet.

Yes, and this is exactly what most of us have been saying to the OP (gemini, psawyer, and now, you). She has been very compliant, but here she is, with villous atrophy that has returned after many years.

The OP really needs to follow up with the doctor as this villous atrophy is NEW and there has to be a reason.

If she has been dietary compliant, then something OTHER than gluten is causing the problem. We outlined the differential diagnoses above.

This fact seems to be getting lost in the discussion somewhere.

Hopefully, the OP has a doctor who will test her appropriately.

[IrishHeart]

I never meant to imply that you were not compliant with the diet....quite the contrary, I stated that this was not the case. I think you misunderstood my meaning. Refractory usually occurs when one doesn't know they have Celiac and keeps eating gluten or is not compliant to the diet after diagnosis. It doesn't usually occur if someone has been long term gluten-free and very compliant. The reason is usually an underlying condition. Now that you mention colitis, that could very well be the problem, although doesn't colitis happen in the large intestine only? I know a few Celiacs who also suffer with this and they take Immodium daily to prevent problems. Not an optimum treatment but necessary for them.

I do not think the OP misunderstood you, hon. I think she was just telling us --once again ---that she has been very compliant, so it CAN'T be gluten-related.

Right, OP?

[USF1970]

That's right 'Warrior Princess' - absolutely no offense taken by various replies. Just restating my frustrations, just venting, that's all. The irony here is I feel perfectly fine other than the occasional slight indigestion previously stated. I can't tell all of you all how helpful your support is b/c NO ONE, not even my daughter, totally understands. I ran into an acquaintance yesterday, who, after remarking about how much weight I have lost, stated that she wished she had celiac disease. I assured her she didn't really mean that but it fell on deaf ears - all she could see was my weight loss!!! Again, thanks for your thoughtful and helpful replies. Y'all are a GREAT support and I'll keep you posted. Have a great weekend.

[IrishHeart]

I ran into an acquaintance yesterday, who, after remarking about how much weight I have lost, stated that she wished she had celiac disease.

Just goes to show you how truly ignorant folks are about this disease. If she had seen what happened to me? to others on here? --she would never had made such a naive statement.

I hope you get answers and I hope you'll come back and tell us what you learned.

Best wishes!

[dilettantesteph]

The irony here is I feel perfectly fine other than the occasional slight indigestion previously stated.

I think it is great that you keep such a positive attitude. I hate being so symptomatic sometimes, but I can see how it can be helpful too. I hope your next doctors visit shows improvement.

[lucky28]

I just wanted to put in my 2 cents~Just last month I read about a recent case study on a medical site where the woman in question was having a similar problem as yours. What they discovered is that it was her lotion/cosmetics causing a low but constant level of gluten. in addition to the other suggestions here I might double check your personal products~make sure ingredients are (still) safe.

i'm on my (crappy) cell tonight, but if you want msg me and I'll send a link to the article next time I'm on the computer.

[USF1970]

Thanks Lucky 28 for the suggestion but I've just gone down that road. Just an FYI, Physician's Formula is the only cosmetic line I can find that states flatly that all their products are gluten free. Others mealy-mouth around stating that if gluten is present, it would be so stated. Something is really bothering my eyes (the product states it's gluten-free) but I just think the skin around my eyes are super-sensitive and the product I was using was too strong. I'm home today b/c my eyes are so irritated and the only thing I can think to use is vasoline to calm down the skin. Can't wear Vasoline and eye make up at the same time And I sure wouldn't consider going to work w/no make-up. I truly below the problem w/the skin around my eyes has not been caused by gluten. I see my doc late next week and I hope that I've gained a bit of weight by avoiding Udi, BRM and Glutino products. Those seem to be the only gluten-free products that bother me so I'm hoping its just a matter of becoming super-sensitive to some gluten products and also oats cc. Thanks for all the good wishes; I'll let you know what the doc says.

Linda in Savannah, GA

[USF1970]

Sometimes I wish I were more symptomatic to traces to gluten. Before gluten-free, I didn't realize I was symptomatic - the only symptoms I had was indigestion (extreme to the point of nausea only infrequently)and constipation. Now, after being gluten-free for over 12 years, I am very symptomatic if I accidentally (realizing after the fact) that I've ingested gluten (and that's only happened once and once was enough) - but traces of gluten, not so much. Best of luck to you.......feel better.

[mushroom]

I see my doc again in two weeks. What blood tests would you recommend I have? I'm at a loss here but you've seen me say this before and I mean it - I'll eat gravel before I take cyclosporin. Many, many thanks for all of your helpful comments.

Linda in Savannah, GA

I have been reading through your posts since refractory sprue first came up and I see you were recently scheduled for a doctor's visit. How did that go and what suggestions did he have as to how to proceed? What were the results of your genetic testing?

The thought came to mind as to what other verification of your endoscopic findings have been done? Has he run any of the celiac blood tests again? If there were sufficient gluten to cause total villous atrophy there must be some antibodies circulating in your bloodstream, perhaps? Has he run the DGP (deamidated gliadin peptide) which is very specific for celiac disease? (Not the tTG which is unfortunately rather nonspecific and can be caused by other things).

A quick google produced the following:

https://www.celiac.com/articles/710/1/Refractory-Sprue-by-Michelle-Melin-Rogovin-University-of-Chicago-Celiac-Disease-Program/Page1.html

How is refractory sprue diagnosed and treated?

It must be established through a thorough diet history and antibody testing that the individual is adhering to a strict gluten-free diet. Then, all other gastrointestinal diseases have to be ruled out before a diagnosis of refractory sprue is made. Conditions to be ruled out include pancreatic insufficiency, lactose malabsorption, parasite infestation, intolerance to other food proteins, coexisting inflammatory bowel disease, and autoimmune enteropathy, among others.

Diagnosis should include a test called an enteroscopy, which is a procedure that explores more of the small intestine, and often finds ulcerative jejunitis, a marker of damage in refractory sprue. In addition, because the abnormal IELs can proliferate throughout the gut, a colonoscopy is recommended to determine if lymphocytic colitis is present.

Now, I cannot say I have read every word of every post and you may have mentioned some of these things, but it would be interesting to know if they have been considered.

I hope your doctor's visit went well and that you got some answers.