Seeking advice for potential celiac

[Brian John]

Hi everyone, I have not been diagnosed as a celiac yet but waiting for doctor to call but I was sign posted here because of symptoms that matched. 

I have had foamy urine for years and kidney stones, lethargy and a dull aching in my back for many years and have been fighting for a diagnosis for over 30 years, I've had also foggy head and depression to go with it but my sudden pointer that brought me to my direction in me being a celiac is that I googled sandy gritty bowel movements and not only that strange colour changes and variable consistencies during the same day, that with saggy dehydrated skin and wounds not healing quickly more recently. 

I am awaiting my doctor to call me so I can explain this all to him but I've heard that I have to start eating gluten again to get this tested and although I've been a week without eating gluten (I think as it's a very complicated realm to navigate so I've just seen) I don't really want to start eating gluten again to get the test done. It's there any good reason I should get tested or should I just decide that I am a celiac /maybe only gluten intolerant?? 

Can anyone give me any direction they think I should go here because I am starting to have a few symptoms already change and I feel slightly better just after one week. 

Thanks in advance 

Brian

[trents]

Some of the symptoms you describe could be associated with celiac disease, particularly the bowel movement textures and the brain fog/lethargy. The recommendation of the Mayo Clinic for the pretest gluten challenge is the daily consumption of an amount of gluten equivalent to two slices of wheat bread for 6-8 weeks prior to the antibody blood test and the same amount for 2 weeks prior to the endoscopy/biopsy. If you can get an appointment scheduled soon for the blood draw I would go back on gluten immediately. Being off of it for only one week may allow or a valid test but I would still shoot for three weeks or a month back on gluten before testing if possible.

[knitty kitty]

12 hours ago, Brian John said:

Hi everyone, I have not been diagnosed as a celiac yet but waiting for doctor to call but I was sign posted here because of symptoms that matched. 

I have had foamy urine for years and kidney stones, lethargy and a dull aching in my back for many years and have been fighting for a diagnosis for over 30 years, I've had also foggy head and depression to go with it but my sudden pointer that brought me to my direction in me being a celiac is that I googled sandy gritty bowel movements and not only that strange colour changes and variable consistencies during the same day, that with saggy dehydrated skin and wounds not healing quickly more recently. 

I am awaiting my doctor to call me so I can explain this all to him but I've heard that I have to start eating gluten again to get this tested and although I've been a week without eating gluten (I think as it's a very complicated realm to navigate so I've just seen) I don't really want to start eating gluten again to get the test done. It's there any good reason I should get tested or should I just decide that I am a celiac /maybe only gluten intolerant?? 

Can anyone give me any direction they think I should go here because I am starting to have a few symptoms already change and I feel slightly better just after one week. 

Thanks in advance 

Brian

Welcome to the forum!

The symptoms you've mentioned seem to be consistent with a problem with oxalates.  

Thiamine (Vitamin B1) deficiency and pyridoxine (vitamin B6) deficiency are connected to problems with oxalates. Thiamine and pyridoxine are involved in making enzymes that help break down and flush the oxalates out so they don't cause kidney stones and sandy poop.  Thiamine and some other vitamins are needed for wound healing and skin maintenance.  

Celiac Disease damages the small intestine where vitamins are usually absorbed causing vitamin deficiencies.  It's possible that the deficiencies caused by Celiac malabsorption have precipitated these further health problems.  

It would be easier to continue eating gluten now in order to get tested than trying to reintroduce gluten several months down the road.  Reactions to the reintroduction of gluten tend to be worse after having been gluten free for a while.  Since you have had digestive problems for a while, having an endoscopy would be valuable in assessing the current damage and using that as a baseline to compare to a future endoscopy to check for healing.  Getting tested for common Celiac genes with a DNA test may be an option.  Some doctors will diagnose Celiac by genetic testing and improvement on the gluten free diet.  It's something you need to discuss with your physician.  

 

Here's some articles on oxalates....

"Low Oxalate Diet: Overview, Food Lists, and How It Works"

https://www.healthline.com/nutrition/low-oxalate-diet

And...

"Marginally Insufficient Thiamine Intake and Oxalates"

https://www.hormonesmatter.com/marginally-insufficient-thiamine-intake-oxalates/

Hope this helps! 

 

[Brian John]

40 minutes ago, knitty kitty said:

Welcome to the forum!

The symptoms you've mentioned seem to be consistent with a problem with oxalates.  

Thiamine (Vitamin B1) deficiency and pyridoxine (vitamin B6) deficiency are connected to problems with oxalates. Thiamine and pyridoxine are involved in making enzymes that help break down and flush the oxalates out so they don't cause kidney stones and sandy poop.  Thiamine and some other vitamins are needed for wound healing and skin maintenance.  

Celiac Disease damages the small intestine where vitamins are usually absorbed causing vitamin deficiencies.  It's possible that the deficiencies caused by Celiac malabsorption have precipitated these further health problems.  

It would be easier to continue eating gluten now in order to get tested than trying to reintroduce gluten several months down the road.  Reactions to the reintroduction of gluten tend to be worse after having been gluten free for a while.  Since you have had digestive problems for a while, having an endoscopy would be valuable in assessing the current damage and using that as a baseline to compare to a future endoscopy to check for healing.  Getting tested for common Celiac genes with a DNA test may be an option.  Some doctors will diagnose Celiac by genetic testing and improvement on the gluten free diet.  It's something you need to discuss with your physician.  

 

Here's some articles on oxalates....

"Low Oxalate Diet: Overview, Food Lists, and How It Works"

https://www.healthline.com/nutrition/low-oxalate-diet

And...

"Marginally Insufficient Thiamine Intake and Oxalates"

https://www.hormonesmatter.com/marginally-insufficient-thiamine-intake-oxalates/

Hope this helps! 

 

Wow thank you, this is a breath of fresh air to think I could be in to something that could potentially change my life after such a long battle and no advice from professionals. 

Can't figure out why it's not been noticed or diagnosed earlier. 

Thanks for this advice though

Brian

[Scott Adams]

It’s up to you whether you need a formal diagnosis or not, some people need one to stay on a gluten-free diet, and some don’t, but I agree that it would likely be easier to get tested before going gluten-free than it would be to try a gluten challenge after months on the diet.

It’s also possible that your results could be negative for celiac disease, and you could still have non-celiac gluten sensitivity (there currently isn’t a way to screen for it), and would still need to be gluten-free.