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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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    • trents
      Autoimmune Reaction to SO many foods

      By trents · Posted

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    • Maura Gissen
      Autoimmune Reaction to SO many foods

      By Maura Gissen · Posted

      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related.  I do check all of my food products and supplements and I am very careful about them being gluten free and trying to stay away from corn starch etc. However, I am eating gluten free breads that sometimes have rice flour, yeast, etc. - I seem to do fine with these breads/bread products some days, but then am sick other days.  I have never really had any GI symptoms outside of bloating. My symptoms are dizziness, brain fog, and a general feeling of unwellness or malaise, sort of like when you're going to get the flu.  I have had a lot of bloodwork done over the last three years, but I don't recall doing the CBC, CMP, or a celiac-specific test recently. That's helpful so that could at least provide some insight to see if I'm still being exposed.  Do you see most individual with celiacs having to take a period of time away from even gluten free breads and other cross-reactive foods to let their guts heal? I'm not sure how restrictive to get with my diet again since it's so challenging. 
    • trents
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      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
      Autoimmune Reaction to SO many foods

      By Maura Gissen · Posted

      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
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      Autoimmune Reaction to SO many foods

      By trents · Posted

      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
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