how much gluten and for how long?

[angelias]

Hi there! I wonder if there's anyone who could answer my queries.

I am back on a "normal" diet in preparation for an endoscopy. I was told that I should eat gluten for at least six weeks prior to examination. Everything seems quite clear and straightforward...however, I have started to have maybe-unjustified doubts:

- is six weeks really sufficient or should I continue eating gluten a little longer...just in case... (I have read

elsewhere on the internet that it should actually be six to eight weeks or even three months!)

- how much gluten do I have to eat? Apparently it should be three slices of bread a day (but then

someone says four)...am so confused!! And also: what if, one day, I don't want to eat that much

bread...how much pasta is equivalent to a slice of bread? To how much bread is a pizza equivalent? I

guess it's not so easy to answer these questions, so I'd better keep eating those (3 or 4?) slices of

bread...

- one day I did not feel well at all and I think I only ate two slices of bread and nothing else containing

gluten...can this have a significant impact on the results of the biopsy?

- finally: would the same "guidelines" apply to "preparation" for the blood test done to check level of

antibodies to gliadin (I'm sure everyone knows what blood test I'm talking about despite my probably

incorrect definition...)

I actually have more questions, but will leave that for another post ....don't want to be bombarding you with too many queries!!

Hope someone can help with the above for now! Many thanks in advance.

[Poshpenny]

Hi I'm in week 6 now of a gluten challenge, my endoscopy will be on 4 November. I think if you aim to eat some gluten at every meal that should cover it. I'm planning my meals around eating gluten at every meal at the moment. The more the better is my gut feeling. The hospital told me to eat gluten for five weeks prior, I decided to go a bit longer. Apart from horrible reflux the first night after spag Bol with garlic bread bloating has been my worst symptom to live with. I can honestly say it's been nowhere near as bad as I thought it might be. I did feel rough for the first two weeks but it doesn't seem to bother me too much now. I will be going back to GF though regardless of the result. I can only put this not feeling too bad thing down to being GF for two years, so the cumulative damage has healed, and it would take a lot longer than 7 1/2 weeks eating gluten to feel that bad again. I take hypothyroid medication and am supplementing vits and mins now, I think it all helps.

[angelias in reply to Poshpenny]

Well done Poshpenny. Good to hear you are doing well and that your endoscopy is due soon. Many thanks for your reply. Wish you the best 😊

[Jacks]

How much/how long - it would depend upon how long you had abstained from gluten. Did you previously write you have only been GF for 2 weeks? If that's the case you'll probably still show signs of damage even though cell turnover in the gut is rapid.

Because in essence you're asking how long does it take for to turnover and shed epithelial cells?

In early studies of mice, damage to the duodenum and small intestine epithelial cells arise in the crypts and migrate up the villi to the tips, taking from 1 - 2½ days depending on the length of the villi.

So what is the current recommendation to get a true and accurate reading? NICE states one piece of gluten at every meal for 6 weeks. US studies used to say 10g for 8 wks. Recent research published in "Gut" found a histological and serological change in adult coeliacs on a 14 day gluten challenge with just over 3g of gluten/day.

One piece = a small slice of bread or something made with STRONG plain flour, and for some reason egg pasta has more gluten than ordinary.

And yes, you need to eat the stuff throughout blood tests and biopsy by upper endoscopy.

It's not ideal, but if you want/need a diagnosis it is a necessisty.

nice.org.uk/guidance/ng20/r...

"Gut doi:10.1136/gutjnl-2012-302196"

[angelias in reply to Jacks]

Dear Jacks, I wasn't even dreaming about receiving such a detailed answer to my questions. Thank you very much indeed 😉👍

[Curiosity7]

Hello Angelias,

There is no simple answer to your questions because our bodies are all different and will react in different ways. Those periods you state are a "best guess" by the "experts" and are only stated for some sort of common clinical guidance.

Speaking from personal experience and having been gluten free for over 17 years now, and one who had to wait over 15 years for a diagnosis by these "experts" (and nearly died in the process!), my advice is this:

1. Don't get too hung up about a medical diagnosis.

2. Do whatever is asked of you to the best of your ability & knowledge.

3. Keep notes of what you are doing for reference.

4. Remember that your body is an "electro-mechanical-biological" device that is far more sensitive that any man-made machine or tests currently available.

With these points in mind; if ultimately you do not get a definitive diagnosis of CD and you have no other nasty conditions identified (e.g. cancers, organ failures, etc) by the experts, then based on my own experiences you should just go on the GF diet anyway especially if you get noticeable health improvements.

As I say, your multifaceted body is the ultimate test and if it tells you by the lack of reactions that it is feeling better, then take heed and stay GF. Don't get too diverted by the definitive CD diagnosis, it is only a pedantic rule invented by the medical community for their categorisation purposes.

I had to wait 15 years for it and believe me it was complete hell! Don't put yourself through this mental & physical torture, just go GF and feel better. In fact after a few years you will feel like a new person!

Best wishes.

[angelias in reply to Curiosity7]

Hi Curiosity7,

I totally agree with you...but I think it is important to have the response of the biopsy and a consequent medical diagnosis... somehow I hope that the diagnosis will be CD. At the same time I am aware that science and doctors can be wrong...no doubt about it!