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Gluten challenge to do or not to do. Please help.

Em_Lou profile image
11 Replies

I'm due to have an endoscopy to test for coleaics in four weeks and have been instructed by my gastro to reintroduce gluten after being gluten free and grain free for almost two years. I really struggling as to whether I should as I have several auto immune diseases including hashimotos where it's advised to remove gluten plus I know the symptoms (anxiety, bloating, iratic bowel movements, exhaustion, emotional)  that face me just as my body feels as though it is finally healing. 

Has anyone had experience of reintroducing for a test and what was the outcome? Or advice on what I should do? I have a loaf of bread here but can't bear myself to eat a slice.

ETA: I have rescheduled one test so feel I need to make a decision rather than prolong the situation

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Em_Lou profile image
Em_Lou
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11 Replies
Jazzw profile image
Jazzw

Personally? I wouldn't. Not if you paid me. Accidental glutening leaves me feeling terrible for over a week. Doing that deliberately for several weeks? No way!

And what if, I did all that, made myself really poorly, and the test came back negative - as they often do? Then what?

Why does your gastro feel the need to do this to you? What difference will it make to you? What difference will it make to your treatment?

Just my personal thoughts. 🙂 I probably came on a bit strong there...

Edited to add: Although...

... Take a look at the post below this one.

healthunlocked.com/glutenfr...

Why make yourself ill deliberately? What are you trying to prove? Good luck. 

Marz profile image
Marz

patient.info/forums/discuss...

Maybe there are some helpful comments in the above link.  I would agree with others and say it is not a good idea to re-introduce gluten for testing .....

I have Hashimotos and it has taken 3 years of being gluten free to reduce anti-bodies from a very high level.  Everything takes time it seems ....

I wouldn't,  your body is healing and it has taken two years to get where you are now.   Is having an endoscopy to prove or disprove Coeliac worth it?  You could be NCGS like a lot of us.  It's your decision of course.  I would ask is it worth it?

liver-bird profile image
liver-bird

Hello Em Lou

I am in the same position as you and undecided what to do.  I have been gluten free for a few months and feel so much better but a blood test shows I have Coeliac antibodies and my gp has referred me to a gastroenterologist for a diagnosis.

  I have written to the Consultant asking if there is any alternative way to get to a diagnosis but have not received a reply as yet and I think she will say I must go back on the gluten to get the diagnosis. 

I too have other autoimmune problems like underactive thyroid and primary biliary cirrhosis so it seems likely that this is another.

I think the advantages of a medical diagnosis is that you get follow up appointments with cd and they keep an eye on you.  Also you can get the expensive gluten free foods on prescription.

As my appointment is 9 June, I can leave it no longer and tomorrow I am going to have some of the bread I used to love so much .  However, if I start feeling really ill again, I don`t think I will be able to tolerate it.

Good luck.  Keep in touch.  Diane

tepee profile image
tepee

If you have been  eating gluten free for so long your villi will have healed to a large extent.  You need to eat the gluten so the docs can see the irritation that it causes when they perform a colonoscopy,  If you don't eat the gluten they won't find any damage.  Well worth the inconvenience and suffering.

Jazzw profile image
Jazzw in reply to tepee

How is making yourself ill again and setting your recovery back years well worth it??

Honestly, not meaning to be funny though it probably sounds that way, sorry - just genuinely curious as to why anyone would think that was a good idea! What benefit is there to having an official diagnosis (other than prescriptions for GF stuff)?

liver-bird profile image
liver-bird

If you are diagnosed with cd you get regular checks and follow up by a Consultant, if you don`t do the gluten challenge you get no follow up.  I am not sure what they look for in the follow ups, but I don`t think they would do it unless it has a clinical purpose.

Jazzw profile image
Jazzw in reply to liver-bird

Fair enough. I suppose if being gluten free removes symptoms though there's nothing much to follow up on.  And if it doesn't, the chances are you'll keep going back to the doctor anyway!

Jacks profile image
Jacks

Four weeks is probably not enough time if you've been properly gluten free for 2 years. 

Are you having the test because you are ill now?  In which case has being gluten free helped your symptoms?   Doesn't sound like it.

Yes, I did the gluten challenge.  I was diagnosed with DH (skin condition associated with coeliac disease).  The clinic put me on a gf diet and I felt brilliant within weeks, but the doctor wanted me back on gluten for an endoscopy.  I did but I was very ill and ended up with lactose intolerance that hasn't abated.   Endoscopy proved positive.  This is a story that will be the same for hundreds on this site. 

It depends upon what you want from the diagnosis.  Prescription staples are likely to disappear in the next few years, some areas have already had drastic reductions, so I wouldn't count on that. 

Only you can decide.  

AliceMitchell profile image
AliceMitchell

The thing is that unless you eat gluten prior to the endoscopy, they will not be able to diagnose coeliac disease as you will not be producing the antibodies that show you have coeliac disease

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