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Endoscopy and eating gluten

Crispy chick

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Crispy chick Explorer
Crispy chick
Posted

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 ?

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RMJ Mentor
RMJ
Posted

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 Explorer
Crispy chick
Posted
  • Author

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 Grand Master
cyclinglady
Posted

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?  

Ranchers Wife Apprentice
Ranchers Wife
Posted

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 Explorer
Crispy chick
Posted
  • Author

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. ?

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      How long was your gluten challenge? I hope it was longer than a week. If not, your testing was likely invalid. Recently upgraded guidelines call for the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat bread) for at least two weeks prior to either the blood antibody test draw or the endoscopy/biopsy. And...
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      Well, the next step would logically be to commit in a serious way to the gluten-free diet and see if you have significant improvement in your symptoms. You should see improvement very soon with regard to GI issues and within weeks if there are other symptoms if gluten is indeed the issue. If there is significant improvement after going gluten free, that would...
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    • Jason Hi
      Need Advice on Doctors

      By Jason Hi · Posted

      For the upper gastrointestinal endoscopy, they said 7 days of gluten. So I did 8...fast food and Krispy Kreme doughnuts. For the earlier blood test, the younger doctor said I didn't have to. My immune system went down, I was in the bathroom a lot, and as my wife said my brain wasn't braining.
    • ChrisSeth
      Waiting on Blood test results…

      By ChrisSeth · Posted

      Thanks guys. I just got my results but I don’t know what they mean…  celiac disease reflex panel Immunoglobulin A  normal range 66-433  my results are a score of 358. Is this normal? I have no idea what to make of it…
    • trents
      Need Advice on Doctors

      By trents · Posted

      How long was your gluten challenge? I hope it was longer than a week. If not, your testing was likely invalid. Recently upgraded guidelines call for the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat bread) for at least two weeks prior to either the blood antibody test draw or the endoscopy/biopsy. And if you had been gluten free for all those years, you likely had lost any tolerance to gluten you may have had when consuming it regularly. That's probably why it was such a tough sledding experience. Before I was diagnosed, I had very minor GI symptoms. Now, after many years of being gluten free, I get violently ill for hours if I get a good slug of gluten, like when I got my wife's wheat biscuits mixed up with the gluten free ones she made me.
    • Jason Hi
      Need Advice on Doctors

      By Jason Hi · Posted

      "Commit in a serious way to the gluten-free diet"....I've been Gluten-free since 2008. That's why I was so sick and had to take nausea and bloating medications during the gluten challenge week prior to the upper gastrointestinal endoscopy performed by the gastroenterologist. The "younger" doctor (the internal medicine who did the blood test), said the antibodies should remain in your system and you don't have to eat gluten (i.e., blood test last year). Hence my posting on finding a good doctor.
    • trents
      Need Advice on Doctors

      By trents · Posted

      Well, the next step would logically be to commit in a serious way to the gluten-free diet and see if you have significant improvement in your symptoms. You should see improvement very soon with regard to GI issues and within weeks if there are other symptoms if gluten is indeed the issue. If there is significant improvement after going gluten free, that would tell you that you must avoid gluten and given the test results you already have, the logical conclusion is NCGS. As I said, an NCGS diagnosis is arrived at by first ruling out celiac disease, which seems to have been done. Then you could go back to that doctor with the other evidence component (improvement of symptoms with gluten-free eating) and ask if he/she would now be willing to declare an official dx of NCGS and give you a note. Or, you could book an appointment with another doctor who could look at your test results online, together with symptom improvement after going gluten-free, who might be more cooperative. I would seek out a younger practitioner as they are more likely to not be operating on outdated info about gluten disorders. By the way, NCGS is about 10x more common than celiac disease. 
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