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Crohn's Disease Forum » General IBD Discussion » Refractory Coeliacs?


02-06-2013, 06:50 AM   #1
Niks
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Refractory Coeliacs?

Hi all

Not really sure if I am posting this in the right place, any ideas?

After a horrible few weeks, Jaime is back in hospital, gradually getting worse, and not being able to hold food or fluids down at all. Pins and needles really bad (now on B12 jabs), severe abdo pain and nothing moving through her digestive system! (has had enemas now which have helped)

Her GI is not wanting to do more tests as he thinks her Coeliac diagnosis is right. We have been very very careful with her diet.

I am searching for a new GI and want to get her a referral quickly (not easy)

This morning her GI, has suggested that Jaime has Refractory Coeliacs. He has put her back on 30mg of Pred, which in the passed has worked a treat, but as soon as she tapers to 20, she starts to become ill again.

Her diagnosis for Coeliacs was through scope and biopsies, her bloods were negative. The scope showed NOTHING. The biopsies showed 'characteristics of coeliacs disease). Surely if refractory it would be very obvious on scope as she would be very damaged?

I really don't understand. I am sure that there is more going on with her and wondered if anyone had any experience with anything like this??

Thank you
02-06-2013, 10:55 AM   #2
dannysmom
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Sorry about this Niks. I will read about refractory Coeliacs ... never heard of it. It would be great if you could get another GI opinion.

You may want to post this in the General IBD forum too so more people can read it.
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02-06-2013, 01:23 PM   #3
StarGirrrrl
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Hi Niks, i'm so sorry to hear things are no better

I think this will get a better response in General IBD so I am moving it there.
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2006. Tummy issues (more IBD than IBS).
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02-06-2013, 05:01 PM   #4
Beach
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Sorry about the terribly ruff time Jaime is having. I hope some relief in some manner can be discovered soon.

Thought to chime in and say I was diagnosed by my GI as being a coeliac (celiac) despite all tests coming back negative. The blood tests didn't show anything. Biopsy tests were negative too.

This is back in the 90s when this happened, where little was known or mentioned about celiac. I recall at the time being disappointed as I wasn't sure what to eat. There were not many gluten free foods being sold as there are today. Nor were there many writings about how to prepare meals avoiding wheat. That is different today.

At first I ignored my doctors celiac diagnosis for many years. I thought for sure he had to be wrong. Over that time my condition deteriorated. What eventually helped me greatly was going back on a low fiber, gluten free diet. Since then I have not been nearly as ill with my IBD. It hasn't been a cure, but it improved my condition.

I don't know if this will be helpful, but here in the US a top selling book over the last few months is on avoiding wheat and being healthier as a result. Most that follow the diet report loosing a good amount of weight. Many report too of medication conditions improving greatly.

The other day i saw the physician that wrote the book had an article that might be helpful to you.

Good luck!

"Celiac is not a disease"

http://www.wheatbellyblog.com/2013/0...not-a-disease/
02-06-2013, 05:18 PM   #5
Niks
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Just found this about refractory coeliac disease! I really hope she doesn't have it. Not liking the prognosis.

http://www.glutenfreepages.com.au/CM...celiac-disease

Thank you Beach. I do believe she has regular coeliacs and she has been very careful with her food, I just think there is more going on with her as she's been soooo poorly and gluten free isn't helping.
02-06-2013, 05:49 PM   #6
my little penguin
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http://www.gastrojournal.org/article.../scholar?hl=en
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02-06-2013, 05:50 PM   #7
my little penguin
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http://europepmc.org/abstract/MED/17516353

About using a pill cam
02-06-2013, 05:50 PM   #8
Beach
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Oww, that's not good. Sorry to read that. Sounds like a different issue than I was thinking.

That was a problem to an extent I experienced for awhile. When I first began eating gluten free I felt terrible. I wasn't making my own meals much at the time, and about all I could find for prepared gluten free foods was a product called "Amys". It is sold in many stores here. It took me awhile, but eventually figured out it was the high fiber in Amys products that caused all the grief. The fiber apparently was why I stopped the diet for awhile, and didn't care much for the doctor's diagnosis.

I've seen it mentioned that other foods can cause similar celiac symptoms. Doing a google search saw several mentions on soy about that.

Regardless, hope an answer is found soon. Very best of luck.
02-06-2013, 05:51 PM   #9
my little penguin
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http://www.sciencedirect.com/science...16508502547430
02-06-2013, 05:52 PM   #10
my little penguin
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Refractory celiac disease (RCD) occurs when both symptoms and intestinal damage persist or recur despite strict adherence to a gluten-free diet. In RCD, the immunophenotype of intraepithelial lymphocytes may be normal and polyclonal (RCD I) or abnormal and monoclonal (RCD II). The aim is to describe the clinical characteristics, treatment, and long-term outcome in a large single-center cohort of patients with RCD.
From:
http://www.sciencedirect.com/science...16508508018064
02-06-2013, 05:53 PM   #11
my little penguin
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METHODS: Small bowel enteroscopy was performed in a total of 21 consecutive patients for lesions like ulcerations (high risk). Biopsy specimens were taken from such lesions and from examined small bowel at three different levels of scope insertion depth. Tissue specimens were evaluated for the modified Marsh classification and for the presence of EATL.
RESULTS: Twenty-four procedures were successfully performed without complications. EATL was found in five patients (24%, 95% CI 10–45%) as circumferential, discrete, or confluent ulcerations. In three of them, Marsh III was found while in the other two patients with EATL Marsh I was found. Another two patients (9%, 95% CI 2–28%) had ulcerative jejunitis in the absence of EATL and histology was compatible with Marsh III. In the remaining 14 patients (54%, 95% CI 35–73%), no high-risk lesions were found. Double-balloon enteroscopy could exclude the presence of EATL in four patients that was suggested by abdominal computerized tomography.
CONCLUSIONS: Complications of refractory celiac disease like ulcerative jejunitis or EATL could efficiently be detected or excluded by double-balloon enteroscopy. This technique should be reserved for patients with refractory celiac disease or patients with a past history of EATL.
From:
http://www.nature.com/ajg/journal/v1...g2007188a.html
02-06-2013, 05:55 PM   #12
my little penguin
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METHODS: Patients who received budesonide for refractory celiac disease were classified according to whether they were primarily or secondarily unresponsive to the diet, and whether they had a polyclonal (type I) or clonal (type II) expansion of intraepithelial lymphocytes. The response to budesonide was assessed globally and by reduction in bowel movements.
RESULTS: Patients (N = 29, 72% female) received budesonide for a mean of 6.7 8.5 months, 5 patients (18%) had type II disease (clonal T-cell population); 76% responded to the medication, 55% completely. Response occurred when budesonide was used alone or with oral corticosteroids and/or azathioprine. There was an objective improvement in the number of bowel movements in those that responded. Response occurred in those with either primary or secondary refractory disease and in those with type II disease, irrespective of the presence of microscopic colitis (N = 7). There was no improvement in the duodenal biopsy over the study period and there were no side effects of budesonide.
CONCLUSIONS: Budesonide may be of value in the management of refractory celiac disease.
From:
http://www.nature.com/ajg/journal/v1...g2007438a.html
02-06-2013, 05:56 PM   #13
my little penguin
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METHODS: We studied 15 celiac patients (five men, 10 women, mean age 36.5 yr, range 24–59 yr) who continued to experience GI symptoms after at least 6–8 months of GFD (even if of less severity). Antigliadin antibody (AGA) test, antiendomysial antibody (EMA) test, and sorbitol H2-breath test (H2-BT), as well as esophagogastroduodenoscopy (EGD) with histological evaluation, were performed before starting GFD. Bioptic samples were obtained from the second duodenal portion during EGD, and histopathology was expressed according to the Marsh classification. To investigate the causes of persistence of GI symptoms in these patients, we performed AGA and EMA tests, stool examination, EGD with histological examination of small bowel mucosa, and sorbitol-, lactose-, and lactulose H2-breath tests.
RESULTS: Histology improved in all patients after 6–8 months of GFD; therefore, refractory celiac disease could be excluded. One patient with Marsh II lesions was fully compliant to his diet but had mistakenly taken an antibiotic containing gluten. Two patients showed lactose malabsorption, one patient showed Giardia lamblia and one patient Ascaris lumbricoides infestation, and 10 patients showed small intestinal bacterial overgrowth (SIBO) by lactulose H2-BT. We prescribed a diet without milk or fresh milk–derived foods to the patient with lactose malabsorption; we treated the patients with parasite infestation with mebendazole 500 mg/day for 3 days for 2 consecutive wk; and we treated the patients with SIBO with rifaximin 800 mg/day for 1 wk. The patients were re-evaluated 1 month after the end of drug treatment (or after starting lactose-free diet); at this visit all patients were symptom-free.
CONCLUSIONS: This study showed that SIBO affects most celiacs with persistence of GI symptoms after gluten withdrawal.
From:
http://www.nature.com/ajg/journal/v9...g2003199a.html
02-06-2013, 05:58 PM   #14
my little penguin
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Abstract
Celiac disease is a gluten-dependent small intestinal mucosal disorder that causes malabsorption, often with diarrhea and weight loss. Diagnosis is based on detection of typical biopsy changes in the proximal small bowel, followed by evidence for an unequivocal response to a gluten-free diet. Refractoriness in celiac disease may be due to poor diet compliance, sometimes intentional, or consumption of ubiquitous sources of gluten. Alternatively, the original diagnosis may not be correct (eg., duodenal Crohn’s disease), or a second cause for symptoms may be present (eg., collagenous colitis, functional bowel disorder). In some with recurrent symptoms, a complication may be present (eg., collagenous sprue, small bowel carcinoma, lymphoma). In some, a response to a gluten-free diet can not be unequivocally defined, and more precise historical terms have been used including “sprue-like intestinal disease” or “unclassified sprue”. Although a “wastebasket diagnosis”, these likely represent a heterogeneous group, and some, but not all, may develop lymphoma. Precise definition will be critical in the future as an array of new treatments, including biological agents, may emerge.
From:
http://www.ncbi.nlm.nih.gov/pmc/articles/pmc2687049/
02-06-2013, 05:58 PM   #15
Niks
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Thanks MLP, I really want her to have a Pillcam test..

She hasn't had her small bowel looked at..

Thank you for all your research. Have been looking through too, it's a web of info, just need to sift through.
02-06-2013, 06:00 PM   #16
my little penguin
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Background & Aims: Patients with celiac disease (CD) who do not improve or exhibit villous atrophy on a gluten-free diet may have type 1 refractory CD (RCD) with a polyclonal mucosal T-cell infiltrate, or type 2 RCD with a monoclonal infiltrate, also termed cryptic T-cell lymphoma. Both conditions are difficult to treat. Here we describe the effects of a nonimmunogenic elemental diet on clinical symptoms and mucosal immunopathology in type 1 RCD. Methods: Ten CD patients on a strict gluten-free diet were diagnosed with type 1 RCD after extensive clinical evaluation in a tertiary referral hospital. A 4-week amino-acid–based liquid elemental diet regimen was given with no other treatment, except in 1 patient who also received methotrexate. Duodenal biopsy specimens were obtained before and after treatment for histologic assessment, immunophenotyping of intraepithelial lymphocytes, T-cell receptor clonality, mucosal interleukin (IL)-15 expression, flow-cytometric analysis of interferon (IFN)-γ–secreting T cells, and whole biopsy specimen IFN-γ messenger RNA determination. Results: Nine patients completed the treatment; however, 1 patient did not tolerate the diet. Histologic improvement and reduced epithelial IL-15 were seen in 8 patients, whereas IFN-γ–secreting mucosal T cells and IFN-γ messenger RNA levels decreased in 4 and 7 patients, respectively. Clinical improvement was noted in 6 patients, with 1 patient showing normalization of hypoalbuminemia. Three patients could discontinue their total parenteral nutrition. Conclusions: Persistent mucosal IFN-γ and IL-15 production often occurs in type 1 RCD despite conventional treatment. Elemental diet is a therapeutic option that can provide long-term immunopathologic and clinical improvement of this difficult condition
From:
http://www.sciencedirect.com/science...42356505002958
02-06-2013, 06:01 PM   #17
my little penguin
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This last one suggest EEN ...
E028 splash
Hmmmm....
02-07-2013, 03:21 PM   #18
Niks
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Jaime is home!

I have just e-mailed a local private hospital enquiring about the pillcam procedure and how much it would cost if we went and had it done privately. Once I sent it I looked through their gastro team and it is only the SAME Doctor that she has now!

We are going together to her GP in the morning to see if he will refer her to another hospital
02-07-2013, 03:45 PM   #19
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I am so sorry to hear your daughter is having such a hard time.

The only odd thing about your daughters diagnosis of refractory Celicas disease is that usually most all people with it have bad diarreha. From what you are saying, your daughter cannot go, she has bad constipation.

I still think she may have a motility issue in her intestines going on that is making things worse. I think it is a good idea to get a second opinion with a new GI doc if you can. I am so sorry and I hope she gets some help soon..

Oh also I did some googling on the refractory ceilacs and they say that most people do not respond to steroids with this disease. You daughter felt some better when taking the steroids right? I do think you should be very very careful before deciding on doing the pill cam since your daughter seems to have an issue with things moving through her intestines. You dont want that pill to get stuck. There is a test called a small bowel manometry test. I had this done a few years back. It can tell the doctor if her small bowel is working as it should( it checks the peristalisis of the intestines). Usually a motility specialist would know a lot about this test. It is just something you can bring up to the New GI when you see him/her.
02-07-2013, 03:48 PM   #20
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Niks, if there is a concern about the pillcam pill then you can do the patency pill test first. This is a pill the same size as the pillcam but dissolves.
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02-07-2013, 04:07 PM   #21
Niks
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Ihurt, he 'suspects' refractory coeliacs. I think he's wrong! She really has trouble with motility. Even the barium meal test didn't move through. So you maybe right.

I really need to get a second opinion as get GI really doesn't seem to be testing for the right things!

Yes she gets much better with steroids and funnily enough was even great eating pizza and pasta, before diagnosis of coeliacs!!! Even her dietician said this did not make sense.
02-07-2013, 04:33 PM   #22
StarGirrrrl
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I looked into getting a Pill Cam done privately and got a quote of £2000, must also have had a recent colonoscopy and upper endoscopy.
02-07-2013, 06:31 PM   #23
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Yeah, I would definitely try and get a second opinion. From what all you have explained, it does sound like she has a motility issue going on. Have they ever tried her on any meds like reglan or domperidone?? These are suppose to help move the intestines. Also the antibitoic erythromycin has been used to help improve motility of the gut. I am really suprised her GI has not mentioned or tested her for motility issues yet( especially with the severe constipation). Sorry she is going through all this. I hope you can find a GI who is willing to help her, preferably one who specializes in motility issues of the gut. I am certain you will get some answers to what is wrong with your daugther then and hopefully some help.....






Ihurt, he 'suspects' refractory coeliacs. I think he's wrong! She really has trouble with motility. Even the barium meal test didn't move through. So you maybe right.

I really need to get a second opinion as get GI really doesn't seem to be testing for the right things!

Yes she gets much better with steroids and funnily enough was even great eating pizza and pasta, before diagnosis of coeliacs!!! Even her dietician said this did not make sense.
02-08-2013, 07:16 AM   #24
Niks
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She has had some domperidone, but never as a medication that she takes regularly. No antibiotics though!

Have just got back from GP who thinks that she really does need a second opinion! He is researching the refractory coeliacs, but thinks the same that this should show on the camera scopes, not just biopsies. We also discussed her motility problems, which he agreed with and getting tests to see inside her small bowel.

Am so relieved that he didn't think I was a paranoid mother!

He is sending an urgent letter, fingers crossed

I just want her to get a proper diagnosis, and get treated for it!! She should not have to live her life constantly this poorly..
02-08-2013, 10:37 AM   #25
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That is great news!! I hope that the second opinion happens quickly for her and you can get to the source of her problems.
02-08-2013, 04:14 PM   #26
Ihurt
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Good deal. I really hope you can get some answers and she can get some help so she can feel better!!






She has had some domperidone, but never as a medication that she takes regularly. No antibiotics though!

Have just got back from GP who thinks that she really does need a second opinion! He is researching the refractory coeliacs, but thinks the same that this should show on the camera scopes, not just biopsies. We also discussed her motility problems, which he agreed with and getting tests to see inside her small bowel.

Am so relieved that he didn't think I was a paranoid mother!

He is sending an urgent letter, fingers crossed

I just want her to get a proper diagnosis, and get treated for it!! She should not have to live her life constantly this poorly..
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