Diagnosed As Refractory Celiac Disease-Failed Steroid Treatment

[krose710]

I was diagnosed in August as having an extreme case of celiac disease. After 4 months on a strict gluten free diet, abdominal pain continued as well as other symptoms. A repeat endoscopy showed bluffed villous atrophy and the celiac level within my small intestine was sky high. Among those results of my biopsies, an increased lymphocyte count was also found. I am now on the last 5 days of a 17 day steroid treatment, with no successful days yet. Has anyone been down this road before? Refractory celiac disease is said by my doctor to be a rarity, and the fact that steroids have failed to work, is even more rare, especially at my age. I have a doctors appointment this coming week once I complete my steroid treatment. Any information anyone has regarding this matter would be greatly appreciated.

[Jestgar]

Did you:

Remove gluten products from everything you use? Hair care, lotion, soaps, pet food, etc?

Start with all new cookware, cutting boards, toasters, etc?

Return to all whole foods, no milk, no substitutes (rice bread, soy crackers, eg)?

[krose710]

Did you:

Remove gluten products from everything you use? Hair care, lotion, soaps, pet food, etc?

Start with all new cookware, cutting boards, toasters, etc?

Return to all whole foods, no milk, no substitutes (rice bread, soy crackers, eg)?

Yes. I have done all of the above. I have seen a dietician who reviewed all food choices as well as all products I come into contact with.

[starrytrekchic]

Are you checking everything from a factory for cross-contamination? Are you eating out? Preparing gluten-containing foods for others? Are you using replacement flours? What about checking medication and supplements?

Can you post a list of the foods you eat on a regular basis? Drinks too.

[dilettantesteph]

Return to all whole foods, no milk, no substitutes (rice bread, soy crackers, eg)?

This is important. Are you eating any gluten free bread, gluten free crackers etc. Gluten free products are allowed to have low levels of gluten in them. Some of us are sensitive to these low levels. Have you stopped eating them and are you eating only whole foods.

My GI thinks that refractory sprue diagnoses come when the patient is sensitive to very low levels and hasn't been able to eliminate absolutely all gluten.

Also, when eating gluten free whole grains it is important to sort the grains before eating. I have found gluten grains in just about every grain out there.

[krose710]

I shop only at the whole foods store. I do eat out occasionally but I order items only off the gluten free menu (yes I eat a lot of salad). I do not consume any product that does not say Gluten Free on it unless it is a whole food product such as fruits and vegetables. I do not even consume gluten free bread because I find it close to repulsive. I do not consume any product that contains flour, unless I first find that it is corn, potato, or rice flour. My celiac disease level in my blood was at 11 when I first went in during the summer to my gastroenterologist. Those of you with Celiac disease know that a normal level is within 1-3. In Novemeber, my level had dropped to a 4 which is a slight positive. I know it may seem as though im whining or trying to make it seem like I have done no wrong. We all consume even the slightest amount of gluten in our daily lives no matter how hard we try. But I am growing frustrated, upset, and concerned. The inflammation within my small intestine is doing extreme damage each day that it lasts. When it comes down to it, I know that I am doing my part, by eliminating all gluten, and while it is the first concern, its extremely frustrating for individuals to continuously ask me if im taking in gluten. I appreciate all responses and all ideas.

[sa1937]

Just curious...do they really consider celiac as refractory if you've only been gluten-free four months? Or how do they reach the conclusion that it's refractory?

[jerseyangel]

I don't know what the official word is on that, but I continued to have problems with frequent diarrhea even after eliminating processed gluten-free foods, was dairy free, and had identified and eliminated my food intolerances-- so my GI did an endo with biopsy and a Celiac Blood Panel at 3 years post gluten-free. She was specifically looking for refractory sprue--luckily my biopsies were fine.

[Jestgar]

. I know it may seem as though im whining or trying to make it seem like I have done no wrong.

You aren't whining. We are trying to find every possible source of gluten for you that you may have missed. No one wants to take steroids all their life and if, as DilletanteSteph said, you can heal by removing even the minute-ist traces of gluten, we want to help you be able to do that.

SA also has a valid point. Four months isn't very long.

[sa1937]

I'm almost at the 9-month mark since my EGD/biopsy and still have some issues. My GI has not suggested refractory. I've only eaten out once (not a good experience) and even canceled a much-hoped for vacation as I felt uncomfortable to even think of traveling.

This disease 'tis a puzzle.

[kareng]

I have seen some articles on here saying it can take up to 2 years to heal. Especially if the damage is bad. Maybe you just need a little more time?

[jerseyangel]

I was just checking with my copy of Dr. Green's Celiac Disease-A Hidden Epidemic, and there is an interesting chapter (pages 179-185) on why we can be on the gluten-free diet and still not feel better.

He discusses how unintentionally taking in gluten, lactose intolerance, pancreatic insufficiency, bacterial overgrowth, microscopic colitis, and other factors such as having another condition along with Celiac or other food intolerance should be ruled out first.

He also mentions drugs other than steroids that are used as treatment for Refractory.

Maybe talk it over again with your doctor?

[Pac]

I do not consume any product that contains flour, unless I first find that it is corn, potato, or rice flour.

did you try not eating ANY flour and avoiding eating out for a while? Even corn, potato and rice flour can contain lots of gluten due to cross-contamination. I know it seems frustrating, but some of us need to avoid even the little amounts of gluten found in gluten-free food and the advice to eliminate even that little gluten is the best advice you can get here. Please, give it a try. If you want to heal fast, then clean up kitchen very well, throw away all spices/sugar and anything that might have been contaminated, replace all porous and scratched utensils, eat just plain diet - fresh meat, veggies, fruit. No proccessed stuff, eat only things you can peel or wash very well. Some vegs can be coated in gluten-containing pesticides or fertilizers so watch out for that too. And if that doesn't help, then start worrying about refrectory sprue.

And like SA, I'm also curious about the refractory celiac being diagnosed after only 4 months on the diet. Isn't that a bit too early?

[jerseyangel]

And like SA, I'm also curious about the refractory celiac being diagnosed after only 4 months on the diet. Isn't that a bit too early?

Further reading revealed that Dr. Green mentions 6 months of symptoms and villous atrophy. Of course, I'm sure different doctors have their own criteria--mine obviously did.

Personally, I think 4 months is early. I didn't really feel significantly better for 2 years....although we all heal at our own rates.

[GlutenFreeManna]

I shop only at the whole foods store. I do eat out occasionally but I order items only off the gluten free menu (yes I eat a lot of salad). I do not consume any product that does not say Gluten Free on it unless it is a whole food product such as fruits and vegetables. I do not even consume gluten free bread because I find it close to repulsive. I do not consume any product that contains flour, unless I first find that it is corn, potato, or rice flour. My celiac disease level in my blood was at 11 when I first went in during the summer to my gastroenterologist. Those of you with Celiac disease know that a normal level is within 1-3. In Novemeber, my level had dropped to a 4 which is a slight positive. I know it may seem as though im whining or trying to make it seem like I have done no wrong. We all consume even the slightest amount of gluten in our daily lives no matter how hard we try. But I am growing frustrated, upset, and concerned. The inflammation within my small intestine is doing extreme damage each day that it lasts. When it comes down to it, I know that I am doing my part, by eliminating all gluten, and while it is the first concern, its extremely frustrating for individuals to continuously ask me if im taking in gluten. I appreciate all responses and all ideas.

No one here is trying to frustrate you by asking if you are taking in gluten still. They are trying to help you see something you may have missed. Four months is not very long to learn everything you need to know about what contains gluten and what doesn't. I've been gltuen free for a year and I'm STILL learnign new things. I JUST found out that some type of soda may contain gluten (although it sounds like it's very few types). Did you know that there are no regulations of the term "gluten free" in the US? A product can claim to be "gluten free" and not be gluten free at all. Those asking you if you are eating whole foods are not talking about eating food from the store Whole Foods. They are talking about eating only things you can say for sure are gluten free by looking at them--raw fruit, raw veggies you clean and cook yourself and fresh meat with no additives. If you can, try to take your diet down to just meat, steamed veggies and a little fruit. Then if that helps you feel better introduce new foods one at a time. You may find you have another intolerance or you may find you have been eating something that claims to be gluten free but contains enough trace gluten to still make you sick. I cannot eat Bob's Red Mill's products because even though they are milled in a "gluten free" facility, they also are made on the same equipment as oats and I cannot tolerate even gluen free oats.

[krose710]

Again, I do appreciate all responses. This is a frustrating disease in itself. Yes, 4 months doesnt seem like that long...but, the damage to my small intestine has not stayed the same, nor improved but rather further deteriorated. I also have a list of unsafe foods (including what seems like a billion ingredients) that I carry with me when grocery shopping. I have eliminated nearly ALL flour from my diet and stick mainly to fresh fruits, vegetables, and meat. I drink only 100% juice, water, or tea. Let me add that previously I had been going to a general physician for nearly a year before being referred to a gastroenterologist, who then after nearly just one or two appointments ended up at celiac disease. I began my gluten free diet, BEFORE being diagnosed with celiac disease officially in August. Refractory sprue is assumed when Biopsies continue to show villous atrophy coupled with a high celiac level within the small bowel. As I have said, I am 3 days away from completing a 17 day prednisone steroid treatment. I was put on this treatment to allow my immune response to basically stop firing and let the inflammation of my small intestine begin to heal. I have yet to feel any relief. If anyone of you has been here, you know steroids are no fun as the general small weight gain can feel like much more than a couple pounds. Again, I am very appreciative of all feedback.

Blessings.

[kareng]

Again, I do appreciate all responses. This is a frustrating disease in itself. Yes, 4 months doesnt seem like that long...but, the damage to my small intestine has not stayed the same, nor improved but rather further deteriorated. I also have a list of unsafe foods (including what seems like a billion ingredients) that I carry with me when grocery shopping. I have eliminated nearly ALL flour from my diet and stick mainly to fresh fruits, vegetables, and meat. I drink only 100% juice, water, or tea. Let me add that previously I had been going to a general physician for nearly a year before being referred to a gastroenterologist, who then after nearly just one or two appointments ended up at celiac disease. I began my gluten free diet, BEFORE being diagnosed with celiac disease officially in August. Refractory sprue is assumed when Biopsies continue to show villous atrophy coupled with a high celiac level within the small bowel. As I have said, I am 3 days away from completing a 17 day prednisone steroid treatment. I was put on this treatment to allow my immune response to basically stop firing and let the inflammation of my small intestine begin to heal. I have yet to feel any relief. If anyone of you has been here, you know steroids are no fun as the general small weight gain can feel like much more than a couple pounds. Again, I am very appreciative of all feedback.

Blessings.

Well...I feel awful for you. I know my gut isn't perfect but it's soooo much better. Post progress reports so we can all learn something. Hope you start to feel better.

[Pac]

Just another thought - Did you research anything about candida overgrowth? I knew a lady from our local support group who was on the gluten-free diet for 2 years and still had totaly flatened villi and sky-high antibodies. Then she started a strict "anti-candida" diet - no starch at all (grains, flour, legumes, potatoes, bananas...), no dairy, limited fruit and only then she finaly started getting better. That was over a year ago and as far as I know, she has healed, still on this meat&veg diet. I've read in some articles about possible connection of candida and celiac not through damaged gut flora but that candida might share some epitopes with gluten and serve as a trigger. Maybe it can confuse the immune system and keep the autoimmune response active even after eliminating gluten. Who knows.

Hope you get better.

[jerseyangel]

I just had another thought too--there are folks who have gotten some relief with the SCD Diet.

Open Original Shared Link

[krose710]

Just another thought - Did you research anything about candida overgrowth? I knew a lady from our local support group who was on the gluten-free diet for 2 years and still had totaly flatened villi and sky-high antibodies. Then she started a strict "anti-candida" diet - no starch at all (grains, flour, legumes, potatoes, bananas...), no dairy, limited fruit and only then she finaly started getting better. That was over a year ago and as far as I know, she has healed, still on this meat&veg diet. I've read in some articles about possible connection of candida and celiac not through damaged gut flora but that candida might share some epitopes with gluten and serve as a trigger. Maybe it can confuse the immune system and keep the autoimmune response active even after eliminating gluten. Who knows.

Hope you get better.

Havent tried that yet, I will definitely ask my doctor about it and look into it. At this point, I think it is more fear and anxiety that is overwhelming me more than the pain itself. They did put me on a 2 week antibiotic (the name I do not recall, I believe it began with a Z..) because they thought it may be possible that I had a bacterial infection from all the inflammation. Hopefully things start looking up soon, I am just ready for some sort of answer! I made a call in to my doctor today and left a note with the nurse regarding the lack of relief and they are already compiling a new game plan. Monday cant come soon enough!

[jerseyangel]

Best of luck and keep us posted

[dilettantesteph]

Like others have said. Four months isn't long at all. Healing can take much longer. Those of us who are sensitive to lower levels generally take much longer than that just to figure out where tiny amounts of gluten hide. Gluten free on a label is great for those who are only sensitive to more than 20 ppm. I sincerely believe that I am sensitive to less than 1 ppm. A tiny bite of something with under 20 ppm is enough to give me a reaction. I can't eat almost anything that says gluten free on the label.

I buy my grains whole and sort (to remove gluten grains) and wash them before eating. I even choose, wash and peel my produce carefully to avoid coatings and pesticides. My meat I make sure I get shrink wrapped at the meat distributor to avoid cc from sausage making, breaded meats etc. I only eat fresh organic spices. I grow whatever I can myself.

The low blood levels don't mean that your aren't consuming gluten, just that you don't have detectable antibodies to it in your bloodstream. My blood results were negative after one year and I still had to eliminate tons more gluten cc before I could be symptom free.

I'm not saying that you have to go to the crazy extremes that I have. I am just saying that there is a lot more that you can do with your diet before you settle on a diagnosis of celiac sprue. I am sure that I would have one by now if I wasn't crazy vigilant about gluten cc.

The first step would be to eliminate those gluten free items which contain corn, rice and potato flours. Eat a whole foods diet of produce and meat. You can do it. After you are healthy again you can try to reintroduce some of those processed foods to see which you can tolerate.

Also no eating out till you get healthy!

[krose710]

Like others have said. Four months isn't long at all. Healing can take much longer. Those of us who are sensitive to lower levels generally take much longer than that just to figure out where tiny amounts of gluten hide. Gluten free on a label is great for those who are only sensitive to more than 20 ppm. I sincerely believe that I am sensitive to less than 1 ppm. A tiny bite of something with under 20 ppm is enough to give me a reaction. I can't eat almost anything that says gluten free on the label.

I buy my grains whole and sort (to remove gluten grains) and wash them before eating. I even choose, wash and peel my produce carefully to avoid coatings and pesticides. My meat I make sure I get shrink wrapped at the meat distributor to avoid cc from sausage making, breaded meats etc. I only eat fresh organic spices. I grow whatever I can myself.

The low blood levels don't mean that your aren't consuming gluten, just that you don't have detectable antibodies to it in your bloodstream. My blood results were negative after one year and I still had to eliminate tons more gluten cc before I could be symptom free.

I'm not saying that you have to go to the crazy extremes that I have. I am just saying that there is a lot more that you can do with your diet before you settle on a diagnosis of celiac sprue. I am sure that I would have one by now if I wasn't crazy vigilant about gluten cc.

The first step would be to eliminate those gluten free items which contain corn, rice and potato flours. Eat a whole foods diet of produce and meat. You can do it. After you are healthy again you can try to reintroduce some of those processed foods to see which you can tolerate.

Also no eating out till you get healthy!

Thanks so much. I know some further drastic measures may have to be taken in order to heal. I will discuss all of this with my doctor and a dietician so they can provide me with some information to guide me in the right direction when selecting whole foods. I eat out very rarely but you are right that may be something I have to kiss goodbye for a while! 2 more remaining days of prednisone treatment before my doctors appointment! Very ready for it =)

[frieze]

Thanks so much. I know some further drastic measures may have to be taken in order to heal. I will discuss all of this with my doctor and a dietician so they can provide me with some information to guide me in the right direction when selecting whole foods. I eat out very rarely but you are right that may be something I have to kiss goodbye for a while! 2 more remaining days of prednisone treatment before my doctors appointment! Very ready for it =)

is it possible that your gut is so damaged that the p.o. prednisone is not being absorbed? perhaps you need it IV?

[krose710]

is it possible that your gut is so damaged that the p.o. prednisone is not being absorbed? perhaps you need it IV?

Valid point you have there. IV nutrition is a topic we will be discussing on Monday. I will keep all of you posted. Thank you graciously for getting me through these few days before my appointment! I appreciate all the wisdom and ideas each of you have offered!