Refractory Coeliac Disease or Maybe.

Hi all.

As an introduction my name is Ross and I live in Australia. I am a post polio person who at the tender age of 55 was diagnosed as being coeliac.

Due to no change and being classed as being Non Responsive CD after 5 years, and after further biopsies it was discovered that I had villous atrophy with crypt hyperplasia which simply meant I was refractory CD type 1. No amount of being strict gluten free worked for me.

I was sent to a few dieticians to see if I was getting gluten by error etc. but I knew that I was stricty gluten free to the extreme. After more biopsies no change.

I was placed on all sorts of medication that caused all my liver functions to go haywire for a while. Given Vitamin D, Vitamin B12, Calcium and infusions of Zolendranic Acid for a period of a year.

Finally After 7 years and 2 months my latest biopsies have shown that my villi has improved out of sight and I am now showing real signs of progress.

Putting on a bit of wieght ( I still only weight 60 kg ) and strarting to finally feel well. My specialist believes the fact that I was a coeliac for so long meant that my villi had been very damaged and took all this time to repair.

I am so pleased this has occoured as you can imagine as being Refactory Coeliac is not a great condition.

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Hi Roscoe, at least your villi is on the mend. And what a long slog but your persistance has paid off, so good for you.

What interests me is do you have to avoid wheat derivatives. Because wheat is used for making additives there that are corn derived in the US. All these subtle diferences affect the coeliac much more than non coeliac so like you I am interested in what happens in other countries/ continents.

Jerry (UK)

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Hi Jerry

I try to avoid all things derived from wheat, oats and al l the other nasties. I am not at all concerned with things like glucose or glucose syrup, Caramel and Dextrose derived from wheat as they are so highly refined or processed.

I have noted though that there are some schools of thought emerging about corn. It would be a shame if it was found to be a problem.

However i do try to avoid anything at all related to traces of gluten just to be safe.

Roscoe (Australia)

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Hi Roscoe, I think you have the right attitude to gluten and mine's the same.

I asked because refractory coeliac have to avoid wheat deriv's so was curious as you'd said about being thought a refractroy coeliac, so I wondered whether they affected you.

To me additives that are eaten in tiny quataties that are a sugar refined from a grain are very diferent from eating the grain. And I'm not sure what the problem with corn is.

Jerry

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Hi Jerry

An article in crossed grains a few issues ago mentioned that the experts ( doubt this ) we looking at corn to see if it was safe. Instantly sent shivers down spine. Heard nothing since.

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Hi Roscoe, I saw this:

glutenfreesociety.org/glute...

I know that dextrose is sometimes confused with fructose by our boides and that causes a reaction.

And corn is not one of the triticali grass family which's the edible glutunous grains

I wouldnt worry as your villi is recovering and you are feeling better. I don't eat a lot of corn but have microscopic colitis so I will have to vigilant. So thanks for bringing it to my attention.

Jerry

[FionaGFG Administrator]

Roscoe,

Thanks for sharing your story! I am sure just as you've given me hope (many years post CD and still with niggly health problems) that you've inspired others. The sad fact that most of us aren't told at diagnosis is that the longer we've had Coeliac Disease the longer it takes to heal the villi and begin the road back to good health.

Your story illustrates that perseverance, regular health checks and follow up endos are well worth it to get confirmation that things are heading in the right direction. We're very pleased you're getting well as we agree refractory Coeliac disease is always a worry for Coeliacs that don't appear to improve on a GF diet and is of concern.

Congrats!

[malachy30]

hi

That is great news. This week I am seeing a specialist for a second opinion about my RCD Type I status. I am also strictly GF but my Lymphocite levels are still too high. It is encouraging to hear it took you so long to heal. I have been GF for three years. I really do not want to go on steroids or immuno suppresants which seems standard treatment for RCD I here in the UK