Endoscopy and eating gluten

[Crispy chick]

Hi. Apologies for my endless posts!!! I was told by gi to go gluten-free as my endoscopy would take 9 months on NHS. So I have done 13 days. Bad withdrawl and just felt I was coming out the other end yesterday when I got a phone call offering endoscopy in 2 weeks. 

I am well aware of the need to be eating gluten before the biopsy. So my only question is, will 13 days off gluten be enough to heal some evidence???? Should I be looking for an appointment in 6 weeks? I gave started gluten today ?

[RMJ]

It is recommended to eat gluten for at least two weeks before an endoscopy.  Plus it would be amazing to heal completely in 13 days.  However, if the endoscopy did not show celiac, you would always wonder if you had eaten gluten for long enough.  Tough decision. I’d probably want to get it over with and would be eating all my favorite gluten-containing foods for two weeks!

[Crispy chick]

Thank you. I have spoken to my GP they recommend caution and eating it for 6 weeks. So have an appointment in 5 1/2 weeks. Back on gluten today - I swear I feel exhausted already after 2 meals. Then gluten-free again with a further 2 week withdrawl. What a busy few months to look forward to. ?

[cyclinglady]

Two weeks is enough time for a gluten challenge to obtain intestinal biopsies via endoscopy.   

https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

Perhaps, your GP is basing a six week challenge on blood tests requirements which range from 6 to 12 weeks depending on the celiac disease research center.   Maybe they want to repeat those blood tests on the day of your endoscopy.  

13 days off?  I would not worry.  Take this time to enjoy gluten.  Skip the cheap bread and crackers and focus on artisan bread.  I literally consumed a loaf of sourdough a day!  Then I hit my favorite restaurants for special exotic desserts to go.  I bought old favorite processed cookies and cakes and sampled them and gave away the opened packages to my friends and neighbors.    Those processed cookies were not all that great.   ?. I was pretty sick by the time I had my endoscopy, but it sure made it easier to give up gluten for life!  There was NO DOUBT that gluten made me ill.  

I should clarify that when I had the blood panel, I was really only suffering from anemia.  My hubby had been gluten free for 12 years, so I was a bit gluten light.  I had to wait seven weeks for my endoscopy due to work constraints, so I really ramped up my gluten intake because I knew what being gluten free was actually like.  They say that you become one in marriage, but who would have thought we would both have to be gluten free?  

Edited April 18, 2019 by cyclinglady

[Ranchers Wife]

Oh, you poor thing!

If it were at all possible, you could have the endoscopy in two weeks, and if it was negative repeat the endoscopy in 5 1/2 months.

But since your GI doc is dubious about a celiac diagnosis given your negative blood test for Celiac antibodies, the more conservative approach would indeed be a return to eating gluten and then the endoscopy 5 1/2 weeks from now.

At least that's better than waiting 9 months for the endoscopy.

Is the GI do willing to run the other Celiac antibody tests at the endoscopy appointment? Or are there any private-paid options for you in the UK? I don't know about the UK, just that in the US I could pay about $300 of my own money and have all of those tests run. There are traditional blood draw options at a regular lab, and finger prick home test kits here.

Anyway, you now seem to have another box ticked in the potential Celiac diagnosis list... you did respond to a gluten free diet.

[Crispy chick]

Thank you folks. I am going to eat gluten and have the endoscopy in 5 1/2 weeks. As you say Ranchers Wife, my GI is dubious about me having celiac so I guess I need to be in the best place for the test. I've lived with these dire symptoms for 18 months, what's a further 5 1/2 weeks. I'll then go gluten-free immediately and hopefully see improvement. Whether I am celiac or not. 

My husband thinks I'm nuts and should continue gluten-free as he thought it was helping. But I have two kids and I want to know for them too. 

No one has mentioned the panel testing to me. I guess I could look into paying for it, but is it still worth if if I have a negative biopsy??? A negative biopsy in UK and I will be labelled non celiac. ?