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Hi, I was diagnosed coeliac at the end of July last year and have been on a strict gluten free diet ever since. I was diagnosed coeliac by both the blood test and an endoscopy. It has been 7 months since the endoscopy and I don't see a single sign of improvement, and I am still having bright red blood in my stool. I am booked in for a colonoscopy on 8th March to hopefully see why the diarrhea isn't improving and why there is still blood in the stool. I've also continued to lose weight despite being strictly gluten free. Any ideas what might be causing this would be greatly appreciated? 

Thanks, 

Liam

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Have you had more blood test since then? Need to see if you numbers are down, you might have it sneaking it somewhere or in something you do not expect, like a soap, seasoning, or having something in the kitchen contaminated like a pot, knife, spatula, blender, etc.  I personally have had blood in my stool despite all the issues myself (actually having a colonoscopy tomorrow to check this out) . Numbers for me are down and I struggle to keep up weight. But the diarrhea you mention has me thinking you might have something else.

On keeping up weight I found making smoothies/shakes of nut milks, coconut yogurts, protein powders, and almond butters and sipping on it through out the day helps. I also found taking protein before bed and having BCAAs during the night can help prevent muscle break down. Pumpkin Seed protein seems to be great for the nighttime recovery due to high content of certain amino acids, zinc, and magnesium.

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1 hour ago, LiamAndrewson said:

Hi, I was diagnosed coeliac at the end of July last year and have been on a strict gluten free diet ever since. I was diagnosed coeliac by both the blood test and an endoscopy. It has been 7 months since the endoscopy and I don't see a single sign of improvement, and I am still having bright red blood in my stool. I am booked in for a colonoscopy on 8th March to hopefully see why the diarrhea isn't improving and why there is still blood in the stool. I've also continued to lose weight despite being strictly gluten free. Any ideas what might be causing this would be greatly appreciated? 

Thanks, 

Liam

For me I suffered on, and on after being on a gluten free diet as well. Just recently stopped drinking coffee. oh my how things got better each day

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1 hour ago, LiamAndrewson said:

and I am still having bright red blood in my stool. I am booked in for a colonoscopy on 8th March to hopefully see why the diarrhea isn't improving and why there is still blood in the stool. I've also continued to lose weight despite being strictly gluten free. Any ideas what might be causing this would be greatly appreciated? 

 

Hi Liam

Well done for sticking with the diet.   You must be feeling very frustrated though.

One thing that does come to mind is that before I even knew I was a coeliac my GP put me on some pretty hefty iron supplementation as I was very anemic. This gave me diarrhea and it was so bad I had a lot of bleeding (bright red blood) and I was very sore. She did an examination and found that I was suffering from fissures.  I was then put onto a much lower dosage of iron and the pain and bleeding stopped.  In fact, I think I might have gone onto a product called Floradix initially - it was a while back, all a bit of a blur.

Weird thing is since I've been gluten free iron is affecting me in a different way - constipation and generalised pain in my abdomen. Now I'm supposed to be taking one tablet of ferrous glucanate every day but I don't take it sometimes to give my system a break.

I wish you well with your tests.

 

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14 hours ago, LiamAndrewson said:

I've also continued to lose weight despite being strictly gluten free.

Hello and welcome :)

There's such a thing as refractory coeliac, but it's quite rare. 

A little more info could help people here to advise you. Other than eliminating gluten how would you describe your diet? Do you eat a lot of gluten-free processed foods? Many find that in the period after diagnosis they have a lot of damage to repair and they do better on a simple whole food diet. Similarly many find they have to give up dairy, although some can add this back later.

I guess another question would be if you're absolutely sure that no gluten is sneaking into your diet. Whether from using old scratched saucepans, sharing cutting boards, sieves or colanders, or crumbs in a shared jar of jam etc. Another common theme is that once you eliminate gluten your body becomes far more sensitive to it and it only takes a tiny amount to derail the healing process. I don't know if you've seen it but there's some useful info in this thread also around the gluten-free diet: 

 

all the best with the new tests

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