Lots of Questions

[Vic89]

Hello

I have know for a long time that gluten doesn't agree with me.  In fact I had a blood test about 20 years ago, but I don't think I was eating gluten at the time and wasn't told that I needed to!

Anyways I am going to take my list of symptoms and history to the GP to get another blood test but I was just wondering how much gluten do I need to eat and for how long before the test?  There seems to be a wide range of views online anywhere between 1 piece of bread a day to 0.3 g per kg in bodyweight which would be about 20g...surely not!?  Also what if it is impossible to do due to feeling so ill?  I tried to do a gluten challenge over summer hols and bought a shop bought kit....realised I didn't eat enough gluten, but now suffering consequences 4 weeks after stopping gluten as felt so ill. (Acid reflux, vomiting from acid reflux, constipation/diarrhoea, allergic sinusitis, bloating).

 

Also is it worth getting a gene test online?  Found one for £115 are there any cheaper or is it not worth it.  I would be good if it came back negative and I could rule out celiac disease and just accept it is a gluten sensitivity. 

Thanks in advance

 

[cyclinglady]

A gluten challenge can be very difficult.  I guess that is the reason, celiac experts call it a challenge!  Challenges should be under a doctor’s care.  

A slice of bread or two a day for a period of six to 12 weeks is recommended.  Why?  Everyone builds antibodies at a different pace, so being conservative is the best approach.  The challenge is only two weeks if you are going directly to endoscopy.  

Your celiac test 20 years ago is invalid.  celiac disease can develop at any time in your life.  

The gene test can not diagnose you.  That is because some 30% of the population carries the genes but only a few actually develop celiac disease. It is used to rule out celiac disease.  If you do not have the genes, you will not develop celiac disease ever!  

Why the interest in a diagnosis after all these years?  I ask because my husband had been gluten free 12 years prior to my diagnosis (he went gluten-free per two medical doctors).  He has never been formally diagnosed, but eating a gluten-free diet has worked for him.  He will never do a challenge as we know gluten makes him sick.  

[Vic89]

A couple of reasons...

 

I currently have cycles of being gluten free for about 8 months / a year...then I'll be on hol and somehow gluten will creep back into my diet...i seem to tolerate it for a bit then get v Ill then go gluten free for another year and the cycle repeats.  When I'm well I forget how ill it makes me. 

I was also very ill at Christmas after eating gluten...had chronic fatigue syndrome...

I basically want to know if I'm sensitive and can have gluten once or twice a year (b'day Xmas) or if I need to avoid like plague as it could be doing long term damage.

Also each time go back to gluten symptoms seem worse. Just want to know really.

[cyclinglady]

It certainly sounds like gluten is an issue for you.  While some celiacs do cheat, they risk not just triggering celiac disease but potentially developing an another autoimmune issues.  This is so not worth it.  

Maybe make a video and record when you are really ill. 

I hope you figure out what is best for you!  Take care.