Celiac Disease To Refractory Sprue

[USF1970]

Hey all,

I've been gluten free since 1998 (endoscope biopsy) and my doc calls me his most 'compliant' celiac disease patient - I don't screw around w/it. Imagine my surprise when, after my last endoscope in Dec., 2011, my celiac disease has returned with a vengeance. In the past year I've lost 40 lbs, have severe diarrhea and a sudden onset of severe osteoporosis. My villi showed blunting and flattening. I've hated this diet from day 1 (before 1998 I never was very symptomatic except for severe itching) but have been very careful ever since. I can't cheat b/c i get very sick if I do. Now this. I've started a food journal and notice nausea when I eat BRM rice cereal and Udi bread. And recently my eyes have been red-rimmed, blood shot and itchy. I checked w/Almay (NOT the mascara I've been using) because their products are supposed to be hypo-allergenic. Only ONE of their mascara's is gluten free so I'm quite sure the mascara I'm currently using has gluten in it.

Could I be getting 'hidden gluten' in otherwise gluten-free products and my cosmetics (could that little gluten be causing my problems)? Any suggestions will be GREATLY appreciated. Thanks to all of you.

[Newbee]

I'm sorry to hear this. Since you started having symptoms again have you added any new products? If so I would suggest trying to eliminate them. The difficult thing is even if you are using and consuming all of the same stuff as when the diet was working it is possible that one or more of your products may be contaminating you.

[eatmeat4good]

Oh my god, I'm so sorry.

I don't know the answer but I wanted to empathize with your situation.

How awful for you.

I don't know if the cc can be coming from say Udi's or BRM.

I have read that some Celiacs are sensitive to lower than 20 ppm.

After all those years of diligence on your part.

Eliminate all skin care with any gluten and cosmetics too...but then you are doing that already.

It is a huge heads up to those who don't check make-up and skin care or shampoo and soap. I;m so sorry you are having to deal with this. I have trouble detemining which of those chemical names might be gluten words...jeez!

What about eating out? Do you ever eat out?

I decided never to eat out...the risk of cc seems too high even though they offer gluten free. Like a gluten free pizza at a pizza place? How can it not have gluten on it when there is flour in the air?? I have been getting very paranoid about gluten since I get so sick. I think of co-workers who make coffee and I drink it. They touch the scoop...probably after eating a sandwich...and the scoop goes back in the coffee...then I come along and make coffee....picking up the scoop with gluten on it...but I don't know if this kind of thinking is true or necessary. It has made me stop drinking coffee except at home. My co-worker was eating crackers at my desk....I was getting sick...it took me 2 weeks to figure out why I was so tired and achy and moody. Then I saw her do it. So I started thinking about the ink pens we share...she grabs one after lunch....it dawned on me that I use those pens too so they likely have gluten on them.

Please don't think I am trying to educate you here. I'm trying to educate myself....

I'm not sure what all is possible as far as gluten CC is concerned...but your post has got me thinking.

I hope you get some better answers from others. Stay strong and I hope there is relief for you soon.

[Gemini]

Hey all,

I've been gluten free since 1998 (endoscope biopsy) and my doc calls me his most 'compliant' celiac disease patient - I don't screw around w/it. Imagine my surprise when, after my last endoscope in Dec., 2011, my celiac disease has returned with a vengeance. In the past year I've lost 40 lbs, have severe diarrhea and a sudden onset of severe osteoporosis. My villi showed blunting and flattening. I've hated this diet from day 1 (before 1998 I never was very symptomatic except for severe itching) but have been very careful ever since. I can't cheat b/c i get very sick if I do. Now this. I've started a food journal and notice nausea when I eat BRM rice cereal and Udi bread. And recently my eyes have been red-rimmed, blood shot and itchy. I checked w/Almay (NOT the mascara I've been using) because their products are supposed to be hypo-allergenic. Only ONE of their mascara's is gluten free so I'm quite sure the mascara I'm currently using has gluten in it.

Could I be getting 'hidden gluten' in otherwise gluten-free products and my cosmetics (could that little gluten be causing my problems)? Any suggestions will be GREATLY appreciated. Thanks to all of you.

If you are that diligent with your diet, it may not be gluten at all that is causing your blunted villi.

An intolerance of cow's milk or soy protein can also flatten villi. Could it be possible that you have developed another intolerance along the way? That is very common with Celiac. I have also read that certain

intestinal infections can do the same. Have they done other testing along these lines to check?

I am sorry you are sick and hope you feel better soon.

[GottaSki]

I agree...look beyond gluten. I was labeled Refractory Celiac -- think about the definition -- Celiac that is not improved by a complete adherence to a Gluten Free Diet.

Upon Celiac diagnosis one already knows that their digestive system has been impaired. Additional food intolerance can be a factor. No alergy/blood test will determine this problem...this I know from years of testing.

Please, please look to other food intolerance.

The BEST way to do this is an elimination diet -- saved my life. I tried to eliminate one food or another for years, but until I removed ALL possible intolerance I had no improvement.

A year ago I was bedridden - today I have a full life.

Good wishes for improved health to you!

-Lisa

[Bubba's Mom]

Hey all,

I've been gluten free since 1998 (endoscope biopsy) and my doc calls me his most 'compliant' celiac disease patient - I don't screw around w/it. Imagine my surprise when, after my last endoscope in Dec., 2011, my celiac disease has returned with a vengeance. In the past year I've lost 40 lbs, have severe diarrhea and a sudden onset of severe osteoporosis. My villi showed blunting and flattening. I've hated this diet from day 1 (before 1998 I never was very symptomatic except for severe itching) but have been very careful ever since. I can't cheat b/c i get very sick if I do. Now this. I've started a food journal and notice nausea when I eat BRM rice cereal and Udi bread. And recently my eyes have been red-rimmed, blood shot and itchy. I checked w/Almay (NOT the mascara I've been using) because their products are supposed to be hypo-allergenic. Only ONE of their mascara's is gluten free so I'm quite sure the mascara I'm currently using has gluten in it.

Could I be getting 'hidden gluten' in otherwise gluten-free products and my cosmetics (could that little gluten be causing my problems)? Any suggestions will be GREATLY appreciated. Thanks to all of you.

I'm in the same boat as you. I'm fanatic about staying away from CC. I don't eat out.

I've been wracking my brain trying to figure out what's causing my ongoing damage. I've found an intolerance to soy, dairy, and MSG/autolised yeast extract. Could be other things too, that I haven't figured out?

I'm using Maybeline mascara, which I know Sylvia uses, but I have the waterproof version. It's the only thing I'm unsure of. I only put on makup if I'm going to leave the house, which is only a couple of days a week, and I don't notice a reaction.

There's a list of other things that cause flattened villi. I hope your Dr. is testing for those? I asked for testing from my GI here, and at Mayo Clinic. I was told I couldn't have those issues because of my C.

At my urging for a test The Mayo Dr. had me do a stool collection which had to be shipped to the lab and recieved within 24 hours of collection. They found I had a mild parasite, which they gave me meds for.

Insist that they test you for things like SIBO, yeast, and parasites. Keep a food log too, noting any symptoms. You may find there's something that's not agreeing with you?

I hope they can find an answer for you. I know how it feels to be doing everything you can to be gluten-free and yet have scary symptoms.

[dilettantesteph]

I had the same problem. I had symptoms while eating gluten free processed foods. Then my GI doctor told me that some celiacs need to avoid those and eat unprocessed foods. It has since been published that some of us react to the tiny amounts of gluten allowed in gluten free foods (but not always present).

Open Original Shared Link

It would seem like quite a few of us do better without them according to this recent (unscientific) poll.

Open Original Shared Link

You will read that the "vast majority" of celiacs tolerate gluten free foods just fine, and there are other possibilities. Some of them have been mentioned above. That may be the case, or you might not be in that "vast majority".

[IrishHeart]

I am sorry to hear you are having symptoms and feeling poorly after successful remission of your symptoms for so many years.

Refractory celiac disease refers to those who stop responding clinically and histologically to a gluten-free diet. But you have done so well for so long and a "sudden-onset" of symptoms and villous blunting is perplexing.

GEMINI mentions other causes for villous blunting and I wonder if your doctor has considered other causes and done some testing?

Because I was unDXed for so long, the first thing my doctor tested me for (to rule them out )was lymphoma and other Inflammatory bowel diseases.

"Possible causes for refractory celiac disease include the unrecognized intake of gluten, lack of adherence to a gluten-free diet, and the development of lymphoma (3). Patients who have never responded to a gluten-free diet most likely do not have celiac disease (41). The pathologic features of refractory celiac disease are not well defined; possible findings include the development of a thickened subepithelial collagen layer, mucosal thinning and subcryptal mononuclear inflammation, and evidence of lymphoma (19, 42).

DIFFERENTIAL DIAGNOSIS

The combination of clinical, serologic, and histologic findings plus response to a gluten-free diet confirms the diagnosis of celiac disease in most patients. On biopsy, however, some other conditions can mimic aspects of celiac disease. Some of these conditions and useful differential diagnostic points are summarized here:

Autoimmune enteropathy: crypt injury/destruction; anti-enterocyte antibodies in 50% of cases. Onset usually in the first 6 months after birth.

Tropical sprue: lack of antiendomysial antibodies; response to antibiotic and folate therapy.

Common variable immunodeficiency: paucity or absence of plasma cells; marked lymphoid nodular hyperplasia; Giardia infection common.

Infectious (usually viral) enteritis: normal IEL counts.

Food protein intolerance (eggs, cow milk, etc.): increased eosinophils; other allergic manifestation (asthma, atopy); response to elimination diets.

Development of lymphoma: atypical lymphoid infiltrate; high index of suspicion; imaging studies that demonstrate mass lesions."

from: Open Original Shared Link

This is not meant to scare you, of course!!....but to offer thoughts to discuss with your doctor.

Best wishes,

IH

[Gemini]

I am sorry to hear you are having symptoms and feeling poorly after successful remission of your symptoms for so many years.

Refractory celiac disease refers to those who stop responding clinically and histologically to a gluten-free diet. But you have done so well for so long and a "sudden-onset" of symptoms and villous blunting is perplexing.

GEMINI mentions other causes for villous blunting and I wonder if your doctor has considered other causes and done some testing?

Because I was unDXed for so long, the first thing my doctor tested me for (to rule them out )was lymphoma and other Inflammatory bowel diseases.

"Possible causes for refractory celiac disease include the unrecognized intake of gluten, lack of adherence to a gluten-free diet, and the development of lymphoma (3). Patients who have never responded to a gluten-free diet most likely do not have celiac disease (41). The pathologic features of refractory celiac disease are not well defined; possible findings include the development of a thickened subepithelial collagen layer, mucosal thinning and subcryptal mononuclear inflammation, and evidence of lymphoma (19, 42).

DIFFERENTIAL DIAGNOSIS

The combination of clinical, serologic, and histologic findings plus response to a gluten-free diet confirms the diagnosis of celiac disease in most patients. On biopsy, however, some other conditions can mimic aspects of celiac disease. Some of these conditions and useful differential diagnostic points are summarized here:

Autoimmune enteropathy: crypt injury/destruction; anti-enterocyte antibodies in 50% of cases. Onset usually in the first 6 months after birth.

Tropical sprue: lack of antiendomysial antibodies; response to antibiotic and folate therapy.

Common variable immunodeficiency: paucity or absence of plasma cells; marked lymphoid nodular hyperplasia; Giardia infection common.

Infectious (usually viral) enteritis: normal IEL counts.

Food protein intolerance (eggs, cow milk, etc.): increased eosinophils; other allergic manifestation (asthma, atopy); response to elimination diets.

Development of lymphoma: atypical lymphoid infiltrate; high index of suspicion; imaging studies that demonstrate mass lesions."

from: Open Original Shared Link

This is not meant to scare you, of course!!....but to offer thoughts to discuss with your doctor.

Best wishes,

IH

Thank you , IrishHeart, for bringing this up. I was really hesitant to say anything because I am the last person who wants to scare anyone to such a degree but I think it's something that definitley needs looking into. Refractory Sprue generally develops when you never go gluten-free when you should or you are lax with the diet...really lax. Does not sound like this was the case at all.

[dilettantesteph]

I forgot to mention oats in my last post. The gluten in oats, avenin, is similar in structure to wheat gluten. Something like 10% of celiacs react to oat avenin in the same way as they react to wheat gluten. You mention BRM and Udi's. They are both companies who use gluten free oats in their product line. They clean well between products, but if you are someone who is sensitive to very low levels of oat contamination, those products could be a problem for you. You can research gluten free companies who don't use oats, and that might make the difference. You can discuss this with doctor also.

[Skylark]

Thank you , IrishHeart, for bringing this up. I was really hesitant to say anything because I am the last person who wants to scare anyone to such a degree but I think it's something that definitely needs looking into. Refractory Sprue generally develops when you never go gluten-free when you should or you are lax with the diet...really lax. Does not sound like this was the case at all.

I agree a thorough workup is necessary. However, I believe the OP's doctor wanted to put her on a very nasty immuno-suppressive drug. I would personally go to a 100% whole foods, home-cooked, grain-free, casein-free diet and see what happened for a few months.

[dilettantesteph]

I've started a food journal and notice nausea when I eat BRM rice cereal and Udi bread...

Could I be getting 'hidden gluten' in otherwise gluten-free products and my cosmetics (could that little gluten be causing my problems)?

It looks like you already know the answer. You are doing the right thing. Keep going with the food/symptom journal. Eliminate things that make you sick.

The answer to the second part according to my experience is yes. Some of us who are less sensitive don't want to believe it, but my answer is yes.

Since you are noticing symptoms in response to certain foods, I would guess that it is a reaction and not lymphoma. My mother died of that disease so I have unfortunate experience with it's symptoms.

[IrishHeart]

It looks like you already know the answer. You are doing the right thing. Keep going with the food/symptom journal. Eliminate things that make you sick.

The answer to the second part according to my experience is yes. Some of us who are less sensitive don't want to believe it, but my answer is yes.

Since you are noticing symptoms in response to certain foods, I would guess that it is a reaction and not lymphoma. My mother died of that disease so I have unfortunate experience with it's symptoms.

It could very well be that low levels are causing the problems now. However, since other food intolerances (mentioned in the pub med info) can also be causing this villous blunting, this seems to be a very wise path to take: food journaling and elimination. (I only offered the information as explanation for why the villi might be blunted again--as she tells us she is a very compliant patient and has done very well until now.) This seems odd, given her long remission of symptoms.

To the OP: I would still hope that your doctor does follow- up testing to rule out any other causes for this blunting?--to put your mind at rest. My doctor did a barium follow-through study for this very purpose. (Just a suggestion.)

Hope you can figure out what's causing your symptoms. I am having some myself still and doing an elimination diet as well. It can be tricky to figure out, but people tell me it can be done.

Best wishes to you!

[Gemini]

It looks like you already know the answer. You are doing the right thing. Keep going with the food/symptom journal. Eliminate things that make you sick.

The answer to the second part according to my experience is yes. Some of us who are less sensitive don't want to believe it, but my answer is yes.

Since you are noticing symptoms in response to certain foods, I would guess that it is a reaction and not lymphoma. My mother died of that disease so I have unfortunate experience with it's symptoms.

It is a very foolish person who mistakenly believes that symptoms and damage like this after a strict 10 year gluten-free diet could not be something more serious than low levels of gluten....which has not been established by any reputable Celiac group or intensive medical study. Lymphoma can present as Refractory and anyone that becomes this sick needs to seek medical attention with testing to make sure they are not even sicker than they think they are. They should not take any meds until they rule out the serious stuff. I think all of us can recall Bonnie's posts and what she is going through right now. The doctors blew her off and she was correct...she had a serious problem. Your insistence on everything being caused by low levels of gluten could cost someone dearly. Additional food intolerances should definitely be addressed but downplaying a serious relapse like this is not smart.

[Skylark]

It is a very foolish person who mistakenly believes that symptoms and damage like this after a strict 10 year gluten-free diet could not be something more serious than low levels of gluten....

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.

[dilettantesteph]

low levels of gluten....which has not been established by any reputable Celiac group

Have you read the FDA analysis I posted above? Is the FDA not reputable?

I got the impression from the original post that she is getting medical attention, and I didn't mean to discourage that.

I felt sorry for her since it seemed to me that you were telling her that she must have lymphoma. That is very worrisome. I also wonder how you think that you are better qualified to give her a diagnosis than her own doctors.

I thought that it would be reassuring for her to know that others react to the foods which are giving her diarrhea.

I should add for her sake that I have noticed that my son and I seem to be getting sensitive to lower and lower levels as time goes on. That seems relatively common. It recently mentioned here in this thread in pages 2 and 3.

[IrishHeart]

I felt sorry for her since it seemed to me that you were telling her that she must have lymphoma. That is very worrisome. I also wonder how you think that you are better qualified to give her a diagnosis than her own doctors.

I have to interject here now, because I do not think anyone was telling her she "MUST have lymphoma". What WAS said is that refractory sprue can be caused by many things---and the list includes lymphoma--as well as other causes.

No one is trying to diagnose anyone from what I have read here.

Nor should any of us say what we BELIEVE it is CAUSED by either, as none of us KNOWS. We can only offer opinions, based on medical evidence of how refractory sprue develops.

Do we all agree with that? I think so.

Everyone needs to take a deep breath right now.

The OP can weigh all of the thoughts, offered out of genuine concern, and perhaps ask her doctor what she should do from here.

[Jestgar]

I agree a thorough workup is necessary. However, I believe the OP's doctor wanted to put her on a very nasty immuno-suppressive drug. I would personally go to a 100% whole foods, home-cooked, grain-free, casein-free diet and see what happened for a few months.

This sounds like excellent advice. Go with the healthiest, most unprocessed diet you can, keep very careful notes about what you eat and any symptoms. If you can't find a better solution, then consider the steroids or immuno-supressants.

[psawyer]

This is a case which is quite different from others that we have seen here.

We see many cases of people who are trying to follow the diet, but are STILL sick. In those cases, trace gluten is a POSSIBLE cause, among many others.

The OP has been gluten-free longer than I have--at least 13 years. She was fine for most of those years, which suggests that the trace gluten she may--or may not--have been ingesting was not causing problems. Now, she has a significant relapse, with confirmed villous atrophy.

It seems to me that it makes sense to explore ALL possible causes of that, including lymphoma. None of us are in a position to rule any pathological cause in or out.

I have been healthy for a decade on the gluten-free diet. If I redevelop damaged villi, well, hidden trace gluten would be at the bottom of my list, not the top.

USF1970, I wish you well in your quest for answers.

[USF1970]

WOW.....I've not seen any of these posts.....I don't know why. It wasn't until I did a search on MY search term, that I found your replies (I am a librarian after all)!!!! I have been VERY careful w/my diet although I have continued to eat processed food on occasion. I have found that the following products cause me problems and by problems I mean very, very slight indigestion - NOTHING more: BRM hot rice cereal, Udi bread, Glutino bread (sad to say) and Larabars. Yesterday I ate manufactured mashed potatoes (just too tired to cook) that were labeled gluten-free and had very, VERY slight indigestion. Since my symptoms are so insignificant, it's hard to tell what foods are causing my problems. I did splurge and have a frozen mocha frappe from McDonalds (after checking the ingredients online) and had indigestion but was that caused by the two ibuprophen I took for joint pain??? BTW, the diarrhea seems to have subsided somewhat. After I ate the McDonald frappe, I seem to have a very short bout of constipation which was another manifestation of celiac disease before I went gluten-free. I still think my diarrhea is caused by microscopic colitis and not celiac disease b/c prior to being gluten-free I NEVER had a problem w/diarrhea....quite the opposite was true.

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

[IrishHeart]

Have you read the FDA analysis I posted above? Is the FDA not reputable?

You mean the same FDA that has approved dozens of medications and then recalls them after they cause major health hazards and side effects ...??

[USF1970]

WOW.....I've not seen any of these posts.....I don't know why. It wasn't until I did a search on MY search term, that I found your replies (I am a librarian after all)!!!! I have been VERY careful w/my diet although I have continued to eat processed food on occasion. I have found that the following products cause me problems and by problems I mean very, very slight indigestion - NOTHING more: BRM hot rice cereal, Udi bread, Glutino bread (sad to say) and Larabars. Yesterday I ate manufactured mashed potatoes (just too tired to cook) that were labeled gluten-free and had very, VERY slight indigestion. Since my symptoms are so insignificant, it's hard to tell what foods are causing my problems. I did splurge and have a frozen mocha frappe from McDonalds (after checking the ingredients online) and had indigestion but was that caused by the two ibuprophen I took for joint pain??? BTW, the diarrhea seems to have subsided somewhat. After I ate the McDonald frappe, I seem to have a very short bout of constipation which was another manifestation of celiac disease before I went gluten-free. I still think my diarrhea is caused by microscopic colitis and not celiac disease b/c prior to being gluten-free I NEVER had a problem w/diarrhea....quite the opposite was true.

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

ALSO.....I've also checked all of my meds and cosmetics.....no gluten. And so it goes.

[IrishHeart]

I still think my diarrhea is caused by microscopic colitis and not celiac disease b/c prior to being gluten-free I NEVER had a problem w/diarrhea....quite the opposite was true.

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

My friend with celiac also has Microscopic colitis and she often has bouts with the colitis, even though the celiac is in remission. That causes awful D.

They are treating her with steroids and antibiotics, I believe.

She has c. diff, too and that complicates things, but her villi are not damaged.

Your doctor may do a barium follow through study to see what else may be going on in your GI tract.

I have no idea what test he will recommend beyond that, so I will not speculate, but I am sure he has questions as to why this refractory sprue has occurred (if that is what it is) -- given that you are so compliant.

Please keep us posted. Best wishes to you.

[USF1970]

Thank you , IrishHeart, for bringing this up. I was really hesitant to say anything because I am the last person who wants to scare anyone to such a degree but I think it's something that definitley needs looking into. Refractory Sprue generally develops when you never go gluten-free when you should or you are lax with the diet...really lax. Does not sound like this was the case at all.

Just now seeing these posts........don't know why. But as a statement of fact, I have never, EVER been lax on this diet. Savannah's not a huge city but it's not tiny either and my doc (very well respected in our community) calls me his most compliant celiac patient. And now this........and so it goes.

[Gemini]

Just now seeing these posts........don't know why. But as a statement of fact, I have never, EVER been lax on this diet. Savannah's not a huge city but it's not tiny either and my doc (very well respected in our community) calls me his most compliant celiac patient. And now this........and so it goes.

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.