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Coeliac screen - did I eat enough gluten?

whaleroad
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Go to solution Solved by trents,

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whaleroad Newbie
whaleroad
Posted

Hello. I've had a coeliac screen blood test and currently awaiting results.

It never occurred to me for a second that coeliac could be responsible for my symptoms but after the GP ordered the test I started to think about it and it might actually make sense.

However, by the time I finally went to the doctor I wasn't eating much as I was so fed up of diarrhoea and abdominal pain. In the weeks preceding the test I had 2 sourdough crumpets* for breakfast and no other gluten at all. Is this enough for a reliable test result?

I'm not convinced it's coeliac at all, I just want to be assured the test result will be as reliable as possible (I know an endoscopy is needed to be sure, but blood test determines next steps).

*You can probably tell from my spelling I'm in the UK so if you're not familiar with crumpets they are like a small thick pancake, like an English muffin but softer and full of holes.

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trents Grand Master
trents
Posted
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Welcome to the forum, whaleroad!

It's not clear to me if you ate the two crumpets every morning leading up to the blood draw or just once during that time.

The Mayo Clinic guidelines for a pretest "gluten challenge" is the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to the day of the blood draw. So, if your were eating two crumpets every morning it may have been sufficient to give accurate testing except . . .

Interestingly enough, we have had a number of reports on this forum over the years (and there is some research to back this I think) to the effect that some celiacs do not experience reactions when consuming sourdough bread. Most of these reports seem to have come from people traveling and eating out in some continental European countries where perhaps a different variety of wheat was used than what is typically used here in the US.

So, yes, you may have sabotaged the test results but maybe not.

whaleroad Newbie
whaleroad
Posted
  • Author
53 minutes ago, trents said:

It's not clear to me if you ate the two crumpets every morning leading up to the blood draw or just once during that time.

Hi. Thanks. Sorry I wasn't clear - I mean for breakfast every morning!

I just checked the ingredients and they seem to contain yeast so I don't think they are true sourdough and are probably full of gluten with just a bit of sourdough added for flavour. 

patty-maguire Contributor
patty-maguire
Posted

Hi Whaleroad. Welcome to the community!

Trents answered your question about having eaten enough gluten, however, I wanted to address your comment about not believing you have celiac disease.

I was there too!  So many people have trouble getting their gp to test them for celiac.  I was the opposite.  After years of mysterious symptoms I was sent for an endoscopy for a different purpose, and the surgeon noticed "inflammation consistent with celiac disease".  When he ordered the celiac blood test I pushed back.  "I don't feel particularly bad when I eat bread or pasta" I said.   I almost didn't go for the test.  

Well, I did go and I'm here on this forum so you can guess where that led. 

I happy you're being tested.  Two crumpets per day is probably enough gluten.  If it's negative and you're not confident of the result, another approach is genetic testing.  Celiac disease is a hereditary autoimmune disease and companies like 23andMe test for the related genes.  These tests don't diagnose celiac disease as about 30% of the population have the gene and only about 3% actually develop the condition, but you can use the test to rule out celiac.  I.e. if you don't have the gene you likely don't have celiac. 

All the best. 

cristiana Veteran
cristiana
Posted

Hello @whaleroad - I'm from the UK, and a fellow crumpet-eater!  (You will be glad to know if you do ever have to go gluten free, Warburtons make some delicious gluten free crumpets, and I actually prefer them to the normal ones!)

I think you need to see what your results are.  It could be that despite your gluten avoidance your results are still positive, and the reason I say this is my TTG test (one of the tests you would have had in the UK for coeliac) was still at a high levels years after I had stopped eating gluten.  This is unusual, but it happens, and if you have had high levels they might take a while to come down, too.

Perhaps when you get your results you might wish to post them here.  We've got some really knowledgeable people on this forum who might be able to advise re: your next steps if you need further help.

Cristiana

whaleroad Newbie
whaleroad
Posted
  • Author
3 minutes ago, patty-maguire said:

Celiac disease is a hereditary autoimmune disease and companies like 23andMe test for the related genes. 

Hi. This is all really interesting information, thank you. I have axial spondyloarthritis and psoriatic arthritis so I'm already in the autoimmune disease camp. My sister has Hashimoto's. My first thought was IBD, e.g. Crohn's disease, as it's strongly linked to the type of arthritis I have, but it just doesn't quite fit. My usual IBS remedies aren't working (I was diagnosed with IBS 25+ years ago but these symptoms are new/different). My biggest fear honestly is that they can't find the cause! 

whaleroad Newbie
whaleroad
Posted
  • Author
4 minutes ago, cristiana said:

Hello @whaleroad - I'm from the UK, and a fellow crumpet-eater!  (You will be glad to know if you do ever have to go gluten free, Warburtons make some delicious gluten free crumpets, and I actually prefer them to the normal ones!)

Thank you, I will do. I actually tried Warburtons gluten-free crumpets several years ago - I had just been diagnosed with inflammatory arthritis and tried a gluten-free diet for a while out of desperation for anything that might help. I can't really remember the outcome, I just found it too difficult to stick to a gluten-free diet so it didn't last long 😐. As you probably know, NHS lab results can take weeks to come back at the moment. I wish I could just switch off and not think about it but that's not in my nature!

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patty-maguire Contributor
patty-maguire
Posted
(edited)
37 minutes ago, whaleroad said:

I'm already in the autoimmune disease camp. My sister has Hashimoto's.

Autoimmune diseases tend to travel together as you may already know.  The fact that you and your sister already have autoimmune conditions may increase the likelihood that you have celiac.  There is documented correlation between celiac and Hashimoto's.  Anecdotally I've heard quite a few people with celiac say they also have rheumatoid arthritis though I've not heard specifically of spondyloarthritis and psoriatic arthritis correlating with celiac.  A quick google search brought this up: https://www.medicalnewstoday.com/articles/323156

Edited by patty-maguire
whaleroad Newbie
whaleroad
Posted
  • Author
38 minutes ago, patty-maguire said:

Autoimmune diseases tend to travel together as you may already know.  The fact that you and your sister already have autoimmune conditions may increase the likelihood that you have celiac.  There is documented correlation between celiac and Hashimoto's.  Anecdotally I've heard quite a few people with celiac say they also have rheumatoid arthritis though I've not heard specifically of spondyloarthritis and psoriatic arthritis correlating with celiac.  A quick google search brought this up: https://www.medicalnewstoday.com/articles/323156

Oh that's very interesting, thank you!

whaleroad Newbie
whaleroad
Posted
  • Author

Just to update anyone who is curious, my coeliac screen blood test was negative. I've been trying to eliminate certain things and although it's too early to say, I definitely think gluten is at least one of the culprits. The pain after eating continues, the diarrhoea has settled down, I've now also got nausea/sickness as a new symptom. I'm going to just go gluten-free and see what happens. Thanks for all your help while I was awaiting my results. 

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