Refractrory Celiac

[Ross C]

Hi to all. My name is Ross

This is my first post even though I have lurked for a while.

I have been diagnosed as coeliac ( we spell it this way in Australia) for nearly 3 half years now.

I have just turned 60 and about 3 months ago it was determined that I was refractory.

I have been put on azathioprine on a low dose 25mg for a week but now up to 75mg with a target dose of 120mg.

My liver tests over the last few weeks have been a problem. Today my Specialist rang and said stop taking the azathioprine immediately.

I do not see him now for 3 weeks. He said it will take that long for my liver to recover.

My question is this. If I do not treat the refractory coeliac with drugs what will happen?

Before being diagnosed I had no real symptoms of the traditional coeliac. It was only picked up during a small bowel biopsy looking for damage caused by anti inflammatory steroids.

My villi was flattened, it still is flattened. I miss out on my bread etc. so why not just go back to how I was before being diagnosed.

Maybe somebody has been there before and can give me a bit of advice. I am so confused.

Ross C

[darlindeb25]

Well Ross, to begin with...NO, do not go back to gluten! That would be the worst mistake you could make. This is what I found:

Open Original Shared Link

What if patients fail to respond to gluten free diet?

Failure to respond to a gluten free diet can be due to several reasons:

Patients are not following a strict gluten free diet and are still eating small amounts of gluten.

Patients are unknowingly ingesting unsuspected sources of gluten such as starch, binders and fillers in medications or vitamins.

Patients may have another co-existing condition such as irritable bowel syndrome, bacterial overgrowth of the small bowel, microscopic colitis, or pancreatic insufficiency that are causing the symptoms.

Patients may have refractory disease, or complications of celiac disease.

What is refractory celiac disease?

Refractory celiac disease is a rare condition in which the symptoms of celiac disease (and the loss of villi) do not improve despite many months of a strict gluten free diet. Before making a diagnosis of refractory celiac disease it is important to exclude complications of celiac disease and other co-existing conditions that can produce similar symptoms. It is believed by many knowledgeable physicians that refractory celiac disease is a malignant condition, that is, it is a cancer.

What is the treatment for refractory celiac disease?

The treatment of refractory celiac disease is first to make sure that all gluten is eliminated from the diet. If there still is no improvement, medications are used. Corticosteroids such as prednisone have been used successfully in treating some patients with refractory celiac disease. Immuno-suppressive drugs (medications that suppress a person's immune system) such as azathioprine and cyclosporine also have been used. (These drugs also are used in treating some types of cancer.) Corticosteroids and immunosuppressive drugs are potent medications with potentially serious side effects. Many patients with refractory celiac disease are malnourished and have weakened immune systems, and corticosteroids and immunosuppressive agents can further increase their risk of serious infections. Thus doctors experienced with treating celiac disease should monitor treatment of refractory celiac disease.

Unfortunately in some patients with refractory celiac disease, malabsorption and malnutrition progress despite drugs. In these patients the intravenous route is the only way to deliver nutrition. Total parenteral nutrition (TPN) is a way of delivering calories, carbohydrates, amino acids, and fat in liquid solutions via a catheter that has been inserted and secured into a vein.

Are you postive you are totally gluten free? Medicines, soaps, shampoos, lotions...everything. Maybe it's time for a new doctor.

I am not sure, but please do not go back to gluten.

[Ross C]

Well Ross, to begin with...NO, do not go back to gluten! That would be the worst mistake you could make. This is what I found:

Open Original Shared Link

Are you positive you are totally gluten free? Medicines, soaps, shampoos, lotions...everything. Maybe it's time for a new doctor.

I am not sure, but please do not go back to gluten.

My Wife and I have been through everything. I have even excluded foods/etc that I even Suspect MAY have a chance of gluten.

The amount of time I have been gluten free is long enough now for the villi to show improvements. There has been a no improvement at all. The last small bowel biopsy was consistent with one taken 24 months ago.

As Refractory Coeliac Disease is so rare it is very hard to find a Specialist that knows the ropes.

Azathioprine/Cyclosporin is the accepted treatment world wide. I am just unlucky enough to have a body that instead of attacking the gluten decides to use the drugs to attack my liver.

I am pleased though to be off the Azathioprine. The side effects from the drug is terrible.

I just have to keep looking for answers I guess.

Thanks for your care.

Ross C

[April in KC]

Ross - I am very sorry that you are not seeing any improvement after a long time on a gluten-free diet. How are you feeling? Is it affecting your general health?

I hope you don't mind me asking, is your wife gluten-free along with you? (If not, it would be a good time to try a completely gluten-free lifestyle for both of you, including a new toaster, pans, strainers, etc.) Refractory celiac disease seems to be a very serious condition, not just a small thing.

In your case, it would also make sense to try to find another recovered celiac who is very sensitive to gluten. They could be your "king's royal food taster" and try the foods in your diet to make sure they do not provoke a reaction. If you were not in Australia, I would volunteer to do this for you...I get rashy and nauseous from cross contamination. Since your villi are constantly flattened, I think it would be impossible to tell whether you have a reaction to a particular food or not. Does that make sense? Do you have a Celiac support group or society in your area?

Have you been told whether you have RCD-I or RCD-II? Also, are you being monitored for EATL (enteropathy associated T-cell lymphoma)?

If these are not familiar terms, you might want to do some research on Pubmed.com (if you are comfortable reading factual abstracts about studies, prognosis, etc.)

Best wishes - all Celiacs feel like family and I wish you well.

April

[Ross C]

Ross - I am very sorry that you are not seeing any improvement after a long time on a gluten-free diet. How are you feeling? Is it affecting your general health?

I hope you don't mind me asking, is your wife gluten-free along with you? (If not, it would be a good time to try a completely gluten-free lifestyle for both of you, including a new toaster, pans, strainers, etc.) Refractory celiac disease seems to be a very serious condition, not just a small thing.

In your case, it would also make sense to try to find another recovered celiac who is very sensitive to gluten. They could be your "king's royal food taster" and try the foods in your diet to make sure they do not provoke a reaction. If you were not in Australia, I would volunteer to do this for you...I get rashy and nauseous from cross contamination. Since your villi are constantly flattened, I think it would be impossible to tell whether you have a reaction to a particular food or not. Does that make sense? Do you have a Celiac support group or society in your area?

Have you been told whether you have RCD-I or RCD-II? Also, are you being monitored for EATL (enteropathy associated T-cell lymphoma)?

If these are not familiar terms, you might want to do some research on Pubmed.com (if you are comfortable reading factual abstracts about studies, prognosis, etc.)

Best wishes - all Celiacs feel like family and I wish you well.

April

Hi April

My wife non coeliac has joined me on gluten free.

However I do have my own toaster, butter etc, I am positive I am gluten free.

I am RCD-1 Thank God Type 2 is not real good from what I read.

How do I feel. Rather good apart from the after affects of the Azathioprine. I have decided I am not going to have any more of these drugs. I feel the cure may be worse than the disease.

Yes I do have a great support group, however RCD is one that is not common amongst the group. So I am on My own.

Ross c

[April in KC]

Again, best wishes. It sounds like you are doing all you can. RCD sounds just awful! You might ask your GI / team if there are nutritional supplements that are easy to digest for someone with damaged villi....I'm not talking about Ensure. My oldest son has a chronic GI condition called eosinophilic gastroenteritis in addition to his Celiac Disease...it's diagnosed by taking a biopsy and counting the number of eosinophils per high powered field. He tends to have "D" a lot, and he is thin, has pain, and has trouble putting on weight...he'll go up a couple of pounds, and then down. We have recently discovered a line of nutritional supplements that do not contain any whole food proteins...all the proteins are broken down to amino acids...that keeps the immune system from reacting to food proteins. The supplements taste different...not so great at first, but after a week, he said he likes them - and he actually asks for them (and he's honest).

The supplements are made by Nutricia, and you can order them online. He drinks the orange-pineapple flavored drink boxes called EO28. Some insurance companies will cover them - others only cover them if you take the formula through a feeding tube. I don't know if they are more easily absorbed for someone with damaged villi - you might be able to e-mail someone at the company and find out.

In my earlier post, I was just thinking about how rotten it would be if it were not RCD, but just missed gluten. I suppose you get that a lot when you talk to Celiacs. RCD sounds just awful. I think you should just do what makes you feel the most healthy. I hope you're feeling better.