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Coeliac

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allie64648
allie64648

Hi after 40 years of Type 1 diabetes I am starting to wonder whether I have also got this - both of my cousins (identical twins have been coeliac for years)

I have very upset stomach, diarrhea, wind tummy ache etc on and off since November (can it come on quick?)

My problem is that my normal diet is low in gluten anyway - breakfast and lunch have been fruit for last 10yrs and often for evening meal I will have a rice or chickpea based meal (I am also vegetarian) so blood test they did recently at my diabetic clinic came back neg .

I have experimented over last 2 weeks by being entirely gluten free and my innards have reverted to normal. I had 1 pasta meal and symptoms have come back for 2 days.

Will I massively have to change my diet to get an accurate test result? My GP says it came back neg, so why am I worrying??

2 likes, 3 replies

3 Replies

  • natcann
    natcann allie64648

    Posted

    I can't answer your question obviously but I have been diagnosed since 1998. I didn't have your symptoms but I know lots of other coeliacs did. My Grandson ( aged 14)however did have a lot of your symptoms and also was anaemic. His body couldn't store iron althought he was on a high iron diet and took iron tablets. He had 2 blood tests for CD both negative. Then they did a blood test to see if he carried the CD gene which he did. Fairly new test I think.He then had the biopsy which confirmed CD. The specialist said I had passed the gene down the line and now all my grandchildren are having the test. 

    My grandson's GP was not aware of the gene test and it was lucky he was under a paediatrician because of his not being able to absorb iron .He has now recommended to his parents that all have the gene test. If you don't carry the gene you cannot get CD but you can have the gene and yet not develop CD. All very complicated! Not sure how all this helps you except that tests for CD do have a high amount of  false negatives. Good luck

    • allie64648
      allie64648 natcann

      Posted

      Thanks for that natcann , not sure what blood test I have had. The gene one sounds interesting.

      I am tested for various things quite often, as I am diabetic, iron & vit D ok last time I was tested ( there was more but I can't remember what)

  • aveline
    aveline allie64648

    Posted

    Hi, Allie! Your case seems to highlight the odd relationship between gluten and resuts. You may have enough to trigger reactions (autoimmune/Coeliac or allergic or sentitivity) but not enough to cause the extent of damage needed to show on test resuts. Some of the Coeliac research being done is actually for better testing so that patients just like you can get real answers.

    I do think genetic testing is a good place to start.  Very rare to get CD with no genes for it, if not impossible. If you happen to get the rash known as DH (dermatitis herpetiforis) then that can be biopsied from your skin and solidifies a CD diagnosis with no further testing.  In your case, you may have results that show up from endoscopy and biopsy. Did your GP test your levels of Vitamins like D & B12, plus Iron, Calcium, etc.??  If you have some malabsorption on a good diet, that points to CD.

    You're worrying because you have a family history, plus symptoms and have noticed a reaction to more/less gluten in your diet. You should take that seriously even beyond a negative blood test. It's true that it's not always accurate . 

    As a vegetarian, you're likely low in B12 and that alone can bring on your intestinal symptoms. You can check the Pernicious Anaemia/B12 deficiency forums here for more information. So, that's another issue to check with your Dr. about...

    Good Luck! 

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