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Leuconostoc

Refractory celiac

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Hello,

I was diagnosed with celiac disease almost 2 decades ago. I normally do not eat out and have been very careful with my diet and cross contamination.

Had been very ill over the past ~2 years for unknown reasons. After an out-of-state trip to specialists, pill cam, GI scopes, biopsies, spinal tap, several blood tests and stool tests, and other invasive and non-invasive tests, it was determined I had refractory sprue. Symptoms were similar to MS, even though three neurologists confirmed I did not have MS. Large bowel was fine, but small bowel did not look good with both pill cam and scope. Vitamin A and D were also very low and vision in one of my eyes is now permanently impaired/uncorrectable. 

I don't know what initially caused the refractory sprue but it was under control by February of this year with strict dietary modification, vitamin supplements, and 3+ months of high dose prednisone. I got off the prednisone in late Feb.

I attended an awards ceremony for several educational awards and recognitions I received during the semester this past week (I am a college student). They were made aware of my dietary restrictions weeks in advance when I RSVPed. I was assured by staff and waiters both before and after receiving my meal that the meal accommodated my dietary restrictions.

I started eating and felt something was off, so asked to speak with the chef. They even had a list of my dietary restrictions. But the meal contained barley. 

Aside from feeling ill, I am concerned that the refractory sprue is going to return. I am already having recrudescence of several symptoms from last year. I am especially concerned that if it affects my good eye, I may not be able to read. I have been instructed to go back on the high dose prednisone ASAP by my doctor. I don't know how long I have to be on this now and I am concerned additionally for bone health and other side effects from prednisone. I already have osteopenia.

Is there anyone who's dealt with refractory sprue and can give me any advice? I don't know if there's anything else I can do. Thanks.

Edited by Leuconostoc
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Hi!  

I know your doctors have told you that you have refractory celiac disease, but maybe you do not.  Some researchers have found that many celiacs have been improperly diagnosed with refractory celiac disease.  Refractory celiac disease is rare.    The researchers discovered that trace contamination was occurring with many celiac patients.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

Perhaps consider the diet recommended in the study (whole non-processed gluten-free foods).  I think it is worth a shot as about  82% of the participants saw improvement on the diet. 

 

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Hi Leuconostoc

Cyclinglady is correct in that refractory celiac disease is rare - affecting 1-2 percent of Celiacs. Type One is usually controlled by a short stint of immunosuppressants to calm the body down and a strict diet. Type Two is not so easy to treat. It sounds like you had been diagnosed with Type One and had it under control. Hopefully you had enough time to heal enough before the mishap at the awards ceremony that this is just a short reaction. You mentioned taking supplements and named Vitamin A & D. Have you monitored your calcium and magnesium levels also?

Three years ago I was diagnosed with Type Two Refractory Celiac Disease - 11 years after being diagnosed with Celiac. I was put on Budesonide. I traveled to Mayo Clinic to see Dr. Murray and participate in the Humanized Mik-Beta-1 Monoclonal Antibody study. I started to develop antibodies to the treatment so I had to drop from the study. The treatment I did get seemed to work and reversed the clonal t-cells and intestinal damage. I was then weaned off the Budesonide. Then one year later, it all returned. For the last year I have been on Prednisone and Budesonide and having to take large doses of calcium, magnesium, & potassium to keep from being hospitalized. Last fall, I went to Dr. Green at Columbia University and was one of 22 people in 5 countries who qualified to partake in the AMG 714 study. I have asked both doctors about what they thought causes refractory celiac disease and they both have said that they are not sure of the specific triggers but that the general thought for Type One was long time ingesting small hidden sources of gluten. That is why to qualify for any of the RCD studies, there are so many tests, medical history questions, and examination of your diet to rule out gluten.  

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@cylcinglady & crazymurdock

March and April I felt OK without taking prednisone but not to 100%.

Magnesium and calcium intake is adequate with supplements.  I am also taking fish oil DHA/omega 3, thiamin, vitamin C and chelated iron. All vitamins are gluten-free per manufacturer. No NSAIDs or antacids. Dietary protein intake is based on multiplier of 1.2g/kg a day. B12 is normal (I eat a lot of eggs and meat).

I have ulcerative enteritis (affecting both jejunum and ileum) and villous atrophy, with increased IELs throughout small bowel biopsies. Biopsy was consistent across two labs. I saw a total of 3 gastroenterologists at different hospitals in two states for 2nd and 3rd opinion/confirmation. Took a while to rule out other causes e.g. Crohn’s, microscopic colitis, infectious causes, etc. I initially was put on a 3-week course of 60mg/day prednisone but symptoms relapsed after I stopped, so it had to go longer. The biggest concern was loss of vision in my eye. I also had a flare of DH during this time (which I am having again after the awards ceremony dinner), which has to be treated with Dapsone.

I was told I had Type 1 RS.

I am not getting gluten contamination from my regular diet or household products. Have already evaluated carefully for this. I went through a bad experience with cross contamination ~10 years ago so will not make that mistake again. Nearly everything I eat is homemade unprocessed with few exceptions that are on-label gluten free. I am also on a relatively “low” carbohydrate diet with no grains (<125 g carbohydrates/day) as it helps to control neurological symptoms. I eat out 1-2x a year or less only on exceptional occasions and restaurants have always been able to accommodate. No dairy (allergy) and very little sugar or fruit (dietary fructose intolerance) in my diet.

Doctor never mentioned Budesonide. I’ll bring up Entocort at next appointment, thanks. I can't go out of state to a specialty hospital again for the time being.

Edited by Leuconostoc
corrected mg to g

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Budesonide is a little more specialized and does not effect the whole body like Prednisone does. When digested, it stays and effects mainly the intestines. The only thing is that it is a lot more expensive. Luckily my insurance covers most of it other wise it would be out of the question. The docs have told me that I will need to be on it the rest of my life and that it was probably a mistake to have taken me off of it the first time. I am slowly weaning off of the Prednisone now. A year ago April, I was hospitalized for 4 days and giving iv calcium, magnesium, and potassium along with iv prednisone. Once out of the hospital, I was on 80 mg of prednisone for a while and I am now down to alternating between 10mg and 7.5mg. Like you, I already have osteopenia and there are concerns with bone health among other things. Have you or the docs looked at the meds you take and how they may interact or could hinder each other? The iron blocks the ability to absorb calcium so they have me taking them hours apart. The same with taking Omeprazole and magnesium. How is your albumin level? I was asked to drink 2 protein shakes a day to try to build it up. Like you I eat a lot of eggs and plain baked meats.

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5 hours ago, Leuconostoc said:

@cylcinglady & crazymurdock

March and April I felt OK without taking prednisone but not to 100%.

Magnesium and calcium intake is adequate with supplements.  I am also taking fish oil DHA/omega 3, thiamin, vitamin C and chelated iron. All vitamins are gluten-free per manufacturer. No NSAIDs or antacids. Dietary protein intake is based on multiplier of 1.2g/kg a day. B12 is normal (I eat a lot of eggs and meat).

I have ulcerative enteritis (affecting both jejunum and ileum) and villous atrophy, with increased IELs throughout small bowel biopsies. Biopsy was consistent across two labs. I saw a total of 3 gastroenterologists at different hospitals in two states for 2nd and 3rd opinion/confirmation. Took a while to rule out other causes e.g. Crohn’s, microscopic colitis, infectious causes, etc. I initially was put on a 3-week course of 60mg/day prednisone but symptoms relapsed after I stopped, so it had to go longer. The biggest concern was loss of vision in my eye. I also had a flare of DH during this time (which I am having again after the awards ceremony dinner), which has to be treated with Dapsone.

I was told I had Type 1 RS.

I am not getting gluten contamination from my regular diet or household products. Have already evaluated carefully for this. I went through a bad experience with cross contamination ~10 years ago so will not make that mistake again. Nearly everything I eat is homemade unprocessed with few exceptions that are on-label gluten free. I am also on a relatively “low” carbohydrate diet with no grains (<125 g carbohydrates/day) as it helps to control neurological symptoms. I eat out 1-2x a year or less only on exceptional occasions and restaurants have always been able to accommodate. No dairy (allergy) and very little sugar or fruit (dietary fructose intolerance) in my diet.

Doctor never mentioned Budesonide. I’ll bring up Entocort at next appointment, thanks. I can't go out of state to a specialty hospital again for the time being.

While not a refractory celiac that I know of, I am a hyper sensitive one, reacting to inhaled contamination at stores, and very slight CC from flour that might have touched something it seems. I also have UC and can not eat carbs/sugars, in large amounts or risk flares ups so I eat a ketogenic/paleo diet. Other issues prevent many other foods from being consumed and am on a good supplement regime. Allergic to corn, whey, peanuts, a whole list of intolerance like dairy, soy, olives, animal fats etc.

Anyway to the point here, I noticed that I have a celiac like reaction to trace amounts of even gluten-free Oats (took me years of denial before I gave into this truth), and some other grains can cause slight reactions in others. Have you tried removing ALL grains and grain based ingredients? In addition I have heard of others reacting to corn, soy, and some other odd things. Just a few thoughts.

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It appears that you are doing everything right!  ?We have a member who was diagnosed with Type 1 RS, but later found a hidden source of gluten.  I was hoping this might apply to you as well.  

 As a mother of a very high achiever, I would encourage you to get plenty of rest.  I am the sleep police at home!  I hope this sleep advice will carry her through college.  

Take care and when you need some internet hugs and advice....we are here for you!  

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@crazymurdock

Only meds I am on right now are nasal sprays in the AM, prednisone and topical Dapsone. I am also taking prescription VSL#3. I don’t take calcium or magnesium at the same time as meds, vitamins or iron. Magnesium can interfere with medication efficacy and calcium interferes with iron absorption (calcium uptake is prioritized). Albumin was fine at last test (4.6 g/dL) about 3 months ago. Going to get another blood test this week. But have never had a problem with albumin as far as I know.

@Ennis_TX

All grains and pseudo-grains are gone from my diet, except cornstarch, which is an ingredient in some medications. I am not allergic or intolerant to corn or soy. I had eliminated all soy from my diet a few years ago but re-added high protein unsweetened soy milk and occasional tofu a few months ago as I noticed no difference after removing or re-adding soy (I don't have thyroid problems). 

@cyclinglady

I was also hoping it was a cross-contamination issue, which is why the first thing I did ~2 years ago was to go over everything in my diet and household. It was unfortunately not. It's been a long two years, however I didn't let it stop me from going to school. And thank you for the concern, I do get 7-8 hours sleep normally.  :)

 

Edited by Leuconostoc
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I have no experience or expertise to offer, only best wishes. I hope you get some relief!

I did a little reading out of interest and found this which may be of interest given crazymurdoch's post above:

http://pubs.sciepub.com/ijcd/3/1/3/

I also found this useful as an overview, it's probably ground you've already covered but I'll include it in case anyone else interested:

http://www.mayoclinic.org/medical-professionals/clinical-updates/digestive-diseases/gluten-may-not-be-culprit-in-nonresponsive-celiac-disease

Best of luck to you!

 

 

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There was a member some years ago called glutenwrangler who had refractory celiac.  He was using enteral feeding for a while.  He hasn't been around the forum  for years though.

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@crazymurdock

Some blood work from yesterday is back and so far looks normal. Albumin is 4.0 g/dL which is normal low end of the range. 

@jmg

Thanks for the peer-reviewed case study. Printed it and will give to my doctor.

@GFinDC

Enteric feeding is something I’d like to avoid if possible. Right now I’m just eating beef, avocados, coffee + high protein unsweetened soy milk in the AM, plus regular supplements and meds. Couldn’t really tolerate any food at all until Sunday evening.

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Hi Leuconostoc,

I agree, enteral feeding not an appealing solution.  your diet sounds good,except for the soy milk.  Almond milk would be a better choice IMHO.  Soy has a lot of negative info about how it affects the body.

 

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Hope the rest of your labs are just as good as the albumin. Last April a year ago my albumin was at 1.6, now it is 3.65. Just like you, I am trying to avoid the enteral feeding.

Below is a link to a page I found awhile ago while researching RCD that is one of the better ones as far as explaining the science even though it was 4 years ago.

https://www.hindawi.com/journals/grp/2013/518483/

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Today was the first day I was able to eat full meals. Feeling better. Hope this keeps up. Doctor wants me off prednisone soon. 

@GFinDC

Thanks for the suggestion. I'm still sticking with soy milk. :)

I cut soy out for a few years and it made no difference. My diet is high protein and soy milk is higher in protein than other non-dairy milks.  I don't have a problem with soy, no thyroid issues, and effect of phytoestrogens on thyroid are often related to inadequate dietary iodine intake.

@crazymurdok

Thanks for the article.

 

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2 hours ago, Leuconostoc said:

Today was the first day I was able to eat full meals. Feeling better. Hope this keeps up. Doctor wants me off prednisone soon. 

@GFinDC

Thanks for the suggestion. I'm still sticking with soy milk. :)

I cut soy out for a few years and it made no difference. My diet is high protein and soy milk is higher in protein than other non-dairy milks.  I don't have a problem with soy, no thyroid issues, and effect of phytoestrogens on thyroid are often related to inadequate dietary iodine intake.

@crazymurdok

Thanks for the article.

 

Few companies make a enriched almond milk with 4x the protein. Good Karma makes a flax milk with pea protein in it.  Soy can really mess with your hormones, in the long run, same with dairy.  Just a thought. Also I always mix in a scoop of vegan protein powder with my almond milk much more effective with a complete amino acid complex.

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