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High bilirubin and b12 deficiency anaemia in celiac disease?


Clemmie

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Clemmie Newbie

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


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cristiana Veteran
(edited)

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 by cristiana
Scott Adams Grand Master

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 Grand Master
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 Grand Master

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 Veteran

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 Grand Master

Weed should have been “wheat”. 😁


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trents Grand Master
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 Newbie
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 Newbie
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 Grand Master

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 Grand Master
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 Grand Master
4 minutes ago, Scott Adams said:

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

Touche'!

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    • trents
      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
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      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
    • trents
      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
    • Mynx
      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation process, after the distillation process, the vinegar is still cross contaminated. Please don't dismiss or disregard the small group of people who are 100^ gluten intolerant by saying things are conjecture. Just because you haven't done thr research or aren't as sensitive to gluten doesn't mean that everyone is like you. 
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