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Undiagnosed and next step


Lindsaygalaxy

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Lindsaygalaxy Newbie

Hi. I have given up gluten for nearly 4 weeks due to bloating, yellow, fatty stools (sometimes diarrhoea) every morning and over time the feeling of needing to go to the toilet after most meals. 
Since giving up gluten the bloating has massively improved, I’m no longer so tired, stools back mostly to normal.

I contacted my doctor and he said he would do a blood test but it wouldn’t probably show anything now and to just not eat gluten. Where do I go next with this as it doesn’t fee like anything is being checked or confirmed? Thank you. 


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knitty kitty Grand Master

Welcome to the forum!

You have several choices....

1. Get a new doctor... although he is correct in that having been gluten free for a month may have reduced the antibodies tested for in complete Celiac panel blood tests and results now may be ambiguous.

2.  Go back on gluten for eight weeks and then do a complete Celiac panel and endoscopy.  Be advised that going back on gluten could aggravate symptoms worse than before as the body launches its antibody attack with redoubled efforts.  

3.  Get a genetic test (DNA test) to see if you have any of the genetic markers associated with Celiac Disease.  Some doctors will make a positive Celiac diagnosis if there are genetic markers and improvement is seen on a gluten free diet.  

Also, get checked for vitamin and mineral deficiencies which occur with Celiac Disease.  Discuss with your doctor the benefits of supplementing with vitamins and minerals while healing.  

Hope this helps!

Lindsaygalaxy Newbie
23 minutes ago, knitty kitty said:

Welcome to the forum!

You have several choices....

1. Get a new doctor... although he is correct in that having been gluten free for a month may have reduced the antibodies tested for in complete Celiac panel blood tests and results now may be ambiguous.

2.  Go back on gluten for eight weeks and then do a complete Celiac panel and endoscopy.  Be advised that going back on gluten could aggravate symptoms worse than before as the body launches its antibody attack with redoubled efforts.  

3.  Get a genetic test (DNA test) to see if you have any of the genetic markers associated with Celiac Disease.  Some doctors will make a positive Celiac diagnosis if there are genetic markers and improvement is seen on a gluten free diet.  

Also, get checked for vitamin and mineral deficiencies which occur with Celiac Disease.  Discuss with your doctor the benefits of supplementing with vitamins and minerals while healing.  

Hope this helps!

Thank you. I had blood tests done about 9 months ago and had folate deficiency (tablets to take) and low iron l. 

knitty kitty Grand Master

How is that being corrected?

Are you taking any medications?

Scott Adams Grand Master

I would only add that you've already basically self assessed that you have non-celiac gluten sensitivity, and whether or not you go the route of getting a formal celiac disease diagnosis is up to you--you know that gluten causes your symptoms, and removing it makes them better. A formal diagnosis may give you access to more follow up care, but you may also end up negative for celiac disease and will probably still need to go gluten-free anyway. Unfortunately there isn't yet a test for NCGS.

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