prediagnosis High bilirubin and b12 deficiency anaemia in celiac disease?

[Clemmie]

Hello everyone, 

I’ve been on and off gluten free diet for about a year now because of my digestive issues (all of the nasties).

I had some basic blood work done and it turns out I have some abnormalities; high bilirubin, high MCV, high MCH, a very high count of leukocytes and eosinophils. Doc suggested a b12 deficiency anaemia. No bacteria or parasites. The thing is all I eat is fruit, vegetables, meat and some grains, mostly gluten free like oats, so plenty of b12 from food. I also have ringing and whistles in my ears. I used to swim 8km a day and now I can barely swim 1km! I’m starting to think this is celiac and that’s why I’m not absorbing nutrients. Has anyone had similar symptoms/results? 

I definitely feel better on a low gluten diet and my symptoms almost disappeared when I tried paleo diet for 4 months last year. Now I’m on low gluten and I’m considering going paleo again but I’ve seen people saying here that this can mess up the results of a blood test and I want to get tested. I’m wondering whether eating gluten for 2-4 weeks is enough to get a valid result? 

Thank you

[cristiana]

Hi Clemmie and welcome!

About six weeks of two slices of normal bread per day is roughly the standard amount of gluten recommended before a blood test in the UK, which is where I live.

When you say low gluten, would it be as much as that, or somewhat less?

Cristiana

Edited August 6, 2021 by cristiana

[Scott Adams]

I also just wanted to mention that oats can be cross contaminated with wheat unless you buy certified gluten-free oats. and some celiacs react to oats in a similar way as they do gluten. I believe it’s some thing around 9% of celiac’s have an out intolerance.

[trents]

3 hours ago, Scott Adams said:

I also just wanted to mention that oats can be cross contaminated with weed unless you buy certified gluten-free oats. and some celiacs react to oats in a similar way as they do gluten. I believe it’s some thing around 9% of celiac’s have an out intolerance.

Are they growing oats in the same fields as marijana these days? If that gets out, there will be a run on oatmeal. 

[trents]

Yeah, you need to be eating regular amounts of gluten (equivalent of 2 slices of wheat bread) daily before the blood antibody test for 6-8 weeks and for at least 2 weeks before an endoscopy/biopsy for the tests to be valid. Really does sound like you need to either go on a gluten challenge and get tested or assume your have either celiac disease or non celiac gluten sensitivity and commit to eating completely gluten free. Right now you are on the fence.

[cristiana]

Hi Clemmie

I second what Scott says about oats - you will have to eat what is known as "pure oats" to be sure they are gluten free.  And even then, you may be one of the celiac community (I am one of them) who reacts to even pure oats.   

Reason being, there may be weeds from glutinous crops in amongst the oat crop, or the oats can get contaminated at the processing plants where glutinous crops are processed on shared facilities.

I have not eaten oats ( pure ones) properly for years until this spring where I found my stomach could tolerate them again - finally.  However, I seem to be getting symptoms again so I have had to give them up - reluctantly, as I love porridge and flapjack...

And the whistling in your ears - yes, I do get that.  And a sort of tinny sound in my ears, like being on board a ferry.  That started after I went gluten free though and I went to see an ENT.  I had a barrage of tests and nothing was found to be amiss.  I don't know what causes my tinnitus but it is extremely common, so may or may not have anything to do with being a celiac in my case.  It tends to wax and wane so I wonder sometimes if it has something to do with deficiencies, or glutening, or even stress?

Cristiana

5 hours ago, trents said:

Are they growing oats in the same fields as marijana these days? If that gets out, there will be a run on oatmeal. 

When I read this I wondered if we'd been hacked!

[Scott Adams]

Weed should have been “wheat”. 😁

[trents]

17 hours ago, cristiana said:

Hi Clemmie

I second what Scott says about oats - you will have to eat what is known as "pure oats" to be sure they are gluten free.  And even then, you may be one of the celiac community (I am one of them) who reacts to even pure oats.   

Reason being, there may be weeds from glutinous crops in amongst the oat crop, or the oats can get contaminated at the processing plants where glutinous crops are processed on shared facilities.

I have not eaten oats ( pure ones) properly for years until this spring where I found my stomach could tolerate them again - finally.  However, I seem to be getting symptoms again so I have had to give them up - reluctantly, as I love porridge and flapjack...

And the whistling in your ears - yes, I do get that.  And a sort of tinny sound in my ears, like being on board a ferry.  That started after I went gluten free though and I went to see an ENT.  I had a barrage of tests and nothing was found to be amiss.  I don't know what causes my tinnitus but it is extremely common, so may or may not have anything to do with being a celiac in my case.  It tends to wax and wane so I wonder sometimes if it has something to do with deficiencies, or glutening, or even stress?

Cristiana

When I read this I wondered if we'd been hacked!

No, I was just having a little fun with you, Scott!

[Clemmie]

On 8/7/2021 at 4:27 AM, trents said:

Yeah, you need to be eating regular amounts of gluten (equivalent of 2 slices of wheat bread) daily before the blood antibody test for 6-8 weeks and for at least 2 weeks before an endoscopy/biopsy for the tests to be valid. Really does sound like you need to either go on a gluten challenge and get tested or assume your have either celiac disease or non celiac gluten sensitivity and commit to eating completely gluten free. Right now you are on the fence.

Hi, thanks so much for the tip. 6-8 weeks sounds like a lot! Whenever I start eating gluten “full-time” my tinnitus gets so bad it makes me nauseous but I might have to try the challenge to give myself a chance of getting diagnosed... as the doctors are not so keen on testing for celiac. 

[Clemmie]

On 8/7/2021 at 1:17 AM, Scott Adams said:

I also just wanted to mention that oats can be cross contaminated with wheat unless you buy certified gluten-free oats. and some celiacs react to oats in a similar way as they do gluten. I believe it’s some thing around 9% of celiac’s have an out intolerance.

Yes, thanks a lot! I usually buy gluten free oats but still I might be reactive to the protein. It looks like finding what’s really a problem will be a dozen of blood tests looking for allergies. I just got my results back and I’m allergic to diary too. 

[trents]

Don't take allergy testing too seriously. If you google it you will discover it can be pretty unreliable for several reasons. There is often poor correlation between what the tests show and the symptoms you experience in real life. A better option may be to start keeping a food diary and after a few weeks you may start to see patterns between your bad allergy days and what you have recently eaten. And remember, celiac disease is an autoimmune disorder, not an allergy.

[Scott Adams]

19 hours ago, trents said:

No, I was just having a little fun with you, Scott!

We’ll, I am currently in Humboldt County, CA, so it could have been a Freudian slip! 🙂

[trents]

4 minutes ago, Scott Adams said:

We’ll, I am currently in Humboldt County, CA, so it could have been a Freudian slip! 🙂

Touche'!