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covsooze

Refractory Coeliac Disease?

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I had a bit of a shock yesterday. I went for my yearly check up with the gastroenterologist, and he told me he wanted to do further tests to see if my coeliacs is refractory :o

I was diagnosed Jan 06, following ttg blood tests that were way off the scale and endoscopy showing total villous atrophy. I was 33 at the time and believe the condition was active for many years before I finally got the diagnosis.

As my sister was diagnosed before me, I have always known the importance of not cheating, and the possibility of cc via utensils etc I am very strict about my diet - which is largely unprocessed - and about personal care products. I rarely eat out due to being paranoid about being glutened.

Despite all this, my follow up endoscopy at 9 months continued to show damage (although not as severe) and my antibodies continue to be raised (although nowhere near as high). I do have symptoms, but these could be attributable to dairy and the GI is going to test for that.

I am not losing weight, but that's only because I eat ridiculous amounts of food lol :rolleyes: I am borderline underweight despite having an underactive thyroid (which is still symptomatic).

The dr is going to check to see if I have pancreatic insufficiency, which could explain my inability to absorb food properly, but he's worried about my antibodies given that I am strict with being gluten-free. I will be having a further endoscopy to check for refractory sprue.

Now it could be that I'm reacting to minute amounts of gluten by cc from DS (who's 4). But the GI was nevertheless worried about my antibodies.

I've been researching on the web, but what I'm not clear about is this: in refractory cases, do antibodies remain elevated, or is it 'just' the damage that remains?

Thanks to anyone who can shed some light on this :)

Susie


Susie from Coventry, UK

IBS & GERD 2000

Screened for coeliac disease as sister has it - negative blood test

Nov 2005 positive blood tests

January 2006 dx by biopsy

gluten-free and dairy lite since then

I am also neutropenic, anaemic and have hypothyroidism

Feb 08: free protein S deficiency; candida overgrowth; adrenal exhaustion

'My grace is enough; it's all you need. My strength comes into its own in your weakness.' 2 Corinthians 12

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Hi Susie, this is my opinion:

You had severe damage when diagnosed with sky high antibody numbers. After nine months the damage to your villi has lessened, your symptoms are mostly resolved, and your numbers are coming down.

In refractory sprue your antibody numbers go down to normal, while the villi will stay completely flat. Plus, the diarrhea won't let up at all, to the point were often you end up needing to wear diapers because you can't control your bowel movements.

Your damage and numbers are down from what they were. You are healing, slowly but surely. It can take one to five years in adults who had severe damage to completely heal, and in people who were diagnosed later in life, usually some damage remains.

What are your remaining symptoms?

Personally, I think you may need to eliminate other foods besides gluten, especially dairy and soy. Both of those are known to also cause villi damage, and might make it impossible for your intestines to heal. And the symptoms from dairy and soy intolerance are very similar to celiac disease symptoms.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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Hey Susie,

I am sorry that you are having ongoing issues. I like Ursa's response and it very may be the answer. I do wish you a simple solution toward good health.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Susie,

Here is an article posted on celiac.com

https://www.celiac.com/articles/710/1/Refra...gram/Page1.html

You may have already read this, however, there is a paragraph that implies that the antibody count must show compliance to the diet. If your antibody count is still high, I don't think you can make the jump to refractory sprue yet.

The article mentioned a test for determining "slow responding" celiac disease versus refractory celiac disease. It also listed many conditions that must be investigated/eliminated before a diagnosis can be made. . . one of which is an intolerance to additional foods.

I'm sure this is scary. Hugs and Prayers.


Janet

Experience is what you get when you didn't get what you wanted.

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Thanks for your replies - they confirmed what I was thinking :)

Ursa, I agree with what you said about it taking some people a long time to receover, but I shouldn't still have elevated antibodies should I? that does mean I must still be getting gluten some how, doesn't it?

I know I must have problems with other foods. Dairy should be fairly easy to eliminate, but it's when I get onto things like grains and potatoes (all of which I suspect to one degree or other) that I have problems, because when i've tried to do an elimination diet a couple of times previously, despite still eating lots, I lose weight very quickly (which I definitely don't need to do) and get depressed coz I'm not getting the calories I need. I wonder about trying to exclude one food group at a time? I know it's not ideal, but maybe more constructive. I'd appreciate your thoughts Ursa, as I know you've struggled a lot with various foods.

Thanks :)

Susie


Susie from Coventry, UK

IBS & GERD 2000

Screened for coeliac disease as sister has it - negative blood test

Nov 2005 positive blood tests

January 2006 dx by biopsy

gluten-free and dairy lite since then

I am also neutropenic, anaemic and have hypothyroidism

Feb 08: free protein S deficiency; candida overgrowth; adrenal exhaustion

'My grace is enough; it's all you need. My strength comes into its own in your weakness.' 2 Corinthians 12

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