Pre-endoscopy Gluten Consumption

[thepotatolives]

Hi all,

I visited my doctor in mid-November regarding some on-off abdominal pain and, to rule things out, a blood test was ordered.  This included a celiac test, which came back positive.  I've been referred for a follow-up endoscopy, which takes place in a few weeks.

My concern is...there doesn't seem to be any consistent advice on how much gluten to eat in the run-up to an endoscopy (I know that it's necessary to eat some amount, to ensure that some damage appears in the intestines).  So far, I've encountered four suggestions:
1) a "normal diet" containing gluten (this was the advice given by my doctor...but no indication of what they consider to be "normal");
2) "half a cracker" per day;
3) 6 slices of bread per day;
4) some gluten in at least 2 meals per day (specified by NICE here in the UK).

At the moment I'm trying to compromise by eating:
- 1.5 portions of All Bran for breakfast;
- 130g (dry weight) pasta for lunch.

So I'm aiming for something that meets suggestions 1 and 4 that seems reasonable (and doesn't prompt weight gain).

I'm just wondering...has anyone encountered any more concrete advice on how much to eat pre-endoscopy?

Thanks!

[kareng]

HAve  you been eating gluten free?

Open Original Shared Link

 

For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

• Prior to blood testing we recommend 12 weeks of eating gluten.
• Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.

[cyclinglady]

Can not argue with a reputable celiac center — the University of Chicago.

 Me?  I did not really have GI symptoms, so I ate gluten like crazy.  I bid a fond farewell to my old gluten favorites.  It backfired on me.  By the end of seven weeks, I knew for sure that I had celiac disease.  Made it easy for me to give up gluten for life!  ?. That and positive biopsies!  

[thepotatolives]

1 hour ago, kareng said:

HAve  you been eating gluten free?

Open Original Shared Link

 

For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

• Prior to blood testing we recommend 12 weeks of eating gluten.
• Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.

Yep, thats' one of the links I'd seen.

I've never eaten gluten free, so I'm not really on a gluten challenge.

The concern only arose because, prior to the blood test, I'd been eating too much bread (I mean excessive amounts), and consequently gaining weight.  It was totally unsustainable, and I deliberately cut it back (down from something glutinous with every meal to the current regime of having some with with 2 meals each day) in order to stop my weight from ballooning.  (Although, I must admit I still enjoy bread at the weekend, and will certainly be having a fair amount on the Sat/Sun before the endoscopy!)

It was just that the advice varied so much from place to place, and I'm slightly worried (probably unduly) that the original blood test was skewed to positive by the additional bread I was eating.  But if cureceliacdisease.org is considered reputable (I must admit I'd not noticed it was part of a university), and they're recommending half a slice of bread or a cracker each day, then I needn't be concerned.

That said, I might try sneaking in a few pieces of toast here and there...not sure if I'll be able to eat them again!

19 minutes ago, cyclinglady said:

Can not argue with a reputable celiac center — the University of Chicago.

 Me?  I did not really have GI symptoms, so I ate gluten like crazy.  I bid a fond farewell to my old gluten favorites.  It backfired on me.  By the end of seven weeks, I knew for sure that I had celiac disease.  Made it easy for me to give up gluten for life!  ?. That and positive biopsies!  

I hear you!  I try to be pretty strict with my diet, unfortunately (hence cutting back on the amount of bread), so I can't let myself go to town on croissants, but I do put aside one day each month to go wild.  Needless to say, this month's day falls before the endoscopy...potentially my last opportunity to enjoy some really good scones!

[kareng]

1 minute ago, thepotatolives said:

Yep, thats' one of the links I'd seen.

I've never eaten gluten free, so I'm not really on a gluten challenge.

The concern only arose because, prior to the blood test, I'd been eating too much bread (I mean excessive amounts), and consequently gaining weight.  It was totally unsustainable, and I deliberately cut it back (down from something glutinous with every meal to the current regime of having some with with 2 meals each day) in order to stop my weight from ballooning.  (Although, I must admit I still enjoy bread at the weekend, and will certainly be having a fair amount on the Sat/Sun before the endoscopy!)

It was just that the advice varied so much from place to place, and I'm slightly worried (probably unduly) that the original blood test was skewed to positive by the additional bread I was eating.  But if cureceliacdisease.org is considered reputable (I must admit I'd not noticed it was part of a university), and they're recommending half a slice of bread or a cracker each day, then I needn't be concerned.

That said, I might try sneaking in a few pieces of toast here and there...not sure if I'll be able to eat them again!

I hear you!  I try to be pretty strict with my diet, unfortunately (hence cutting back on the amount of bread), so I can't let myself go to town on croissants, but I do put aside one day each month to go wild.  Needless to say, this month's day falls before the endoscopy...potentially my last opportunity to enjoy some really good scones!

A person who does not have Celiac disease will not test positive for it on an antibody test - no matter how much gluten they eat!  The blood test isn't testing for gluten in your blood, it is testing for the antibodies a Celiac makes in response to gluten.  A non-Celiac can eat a 2 loaves of bread a day and it won't make those tests positive!

[cyclinglady]

I make killer gluten-free scones.  So no worries about finding replacements,  I do not eat bread.  I have yet to make or find a good gluten-free sourdough.  For the most part, I am grain free because I have diabetes too. Bread or any grain really spikes my blood sugar.  I save carbs for nutritionally dense foods like sweet potatoes.  I do bake for my gluten-free hubby and kid.  

You might find that you actually lose weight because your body can be starving for nutrients but can not process them well.  If your biopsies are negative, you could be just starting  celiac disease or are Non-celiac gluten sensitivity.  It might be doing the diet to improve your symptoms.  Keep eating gluten until all testing is done and published!  

[thepotatolives]

1 minute ago, kareng said:

A person who does not have Celiac disease will not test positive for it on an antibody test - no matter how much gluten they eat!  The blood test isn't testing for gluten in your blood, it is testing for the antibodies a Celiac makes in response to gluten.  A non-Celiac can eat a 2 loaves of bread a day and it won't make those tests positive!

I feel silly typing this, but part of me had imagined that it was on a gradient...as if a coeliac could eat gluten up to a point without testing positive, and then there'd be a point when they'd tip over.  This makes no sense, of course...but I must've picked it up somewhere.

I'm kinda assuming a positive biopsy at this point - but will continue to eat gluten until the procedure, of course - and it'll be interesting navigating the gluten-free-free world & wrangling with potential cross-contamination issues.

[kareng]

Just now, thepotatolives said:

I feel silly typing this, but part of me had imagined that it was on a gradient...as if a coeliac could eat gluten up to a point without testing positive, and then there'd be a point when they'd tip over.  This makes no sense, of course...but I must've picked it up somewhere.

I'm kinda assuming a positive biopsy at this point - but will continue to eat gluten until the procedure, of course - and it'll be interesting navigating the gluten-free-free world & wrangling with potential cross-contamination issues.

I guess that is sort of correct. - It can take a while for a Celiac body to make enough antibodies that they can make it from the small intestine to the blood in large enough quantities to register in a blood test.  That is why the amount of time for a gluten challenge is longer for a blood test - for someone who has been gluten-free for a while.

 

If your blood tests were pretty highly positive - you have Celiac.  Hopefully your doctor will take enough biopsies to find the damage.  Celia disease is usually a bit spotty in the small intestine - you might have some good places and some bad places.  It isn't an overall  and even damage.  

[thepotatolives]

1 minute ago, cyclinglady said:

I make killer gluten-free scones.  So no worries about finding replacements,  I do not eat bread.  I have yet to make or find a good gluten-free sourdough.  For the most part, I am grain free because I have diabetes too. Bread or any grain really spikes my blood sugar.  I save carbs for nutritionally dense foods like sweet potatoes.  I do bake for my gluten-free hubby and kid.  

You might find that you actually lose weight because your body can be starving for nutrients but can not process them well.  If your biopsies are negative, you could be just starting  celiac disease or are Non-celiac gluten sensitivity.  It might be doing the diet to improve your symptoms.  Keep eating gluten until all testing is done and published!  

I assume this happens to lots of people on the "diagnosis treadmill" for coeliacs, but I've certainly started connecting some dots after reading about the implications.  I'd always assumed that I was gassy after eating large amounts of carbs (invariably containing gluten) because of the makeup of my gut flora - but those symptoms would line up with the gastrointestinal effects I've read about.

I've also been diagnosed with a vitamin deficiency twice (treated with topup injections) and, on reflection, that made no sense given my diet - but would be explained by having coeliacs.

It's just a shame that the endoscopy is a necessary evil (although understandable) for diagnosing it.  I've read that some NHS trusts here in the UK will employ a second blood test and skip the endoscopy if that comes back positive...which sounds far more convenient!

[thepotatolives]

1 minute ago, kareng said:

I guess that is sort of correct. - It can take a while for a Celiac body to make enough antibodies that they can make it from the small intestine to the blood in large enough quantities to register in a blood test.  That is why the amount of time for a gluten challenge is longer for a blood test - for someone who has been gluten-free for a while.

 

If your blood tests were pretty highly positive - you have Celiac.  Hopefully your doctor will take enough biopsies to find the damage.  Celia disease is usually a bit spotty in the small intestine - you might have some good places and some bad places.  It isn't an overall  and even damage.  

Ah, that's very interesting, thanks! 

I'd wondered why the recommended challenge period was so much longer for the blood test, but that makes sense.

[kareng]

Just now, thepotatolives said:

I assume this happens to lots of people on the "diagnosis treadmill" for coeliacs, but I've certainly started connecting some dots after reading about the implications.  I'd always assumed that I was gassy after eating large amounts of carbs (invariably containing gluten) because of the makeup of my gut flora - but those symptoms would line up with the gastrointestinal effects I've read about.

I've also been diagnosed with a vitamin deficiency twice (treated with topup injections) and, on reflection, that made no sense given my diet - but would be explained by having coeliacs.

It's just a shame that the endoscopy is a necessary evil (although understandable) for diagnosing it.  I've read that some NHS trusts here in the UK will employ a second blood test and skip the endoscopy if that comes back positive...which sounds far more convenient!

I liked the idea of the biopsy because I figured they would get a good look around.  If there was any other issues, they would see them

[kareng]

I have to get going. Nice talking with you.   Welcome to the club.  Your info on the secret handshake and decoder ring will be coming soon.  lol  

[Cheerymarie]

What I wish I heard when I was you : It seems surreal now, you’re imagining how shitty it might be and yes it can be shitty. The first month was probably the hardest of my life but it does get better, you do realize how much there truly is for you. You just have to figure out where to go. Some grocery stores suck for gluten-free stuff just the traditional one Section. Others are super friendly and have stickers on individual items throughout the store to let you know. I bought the NIMA (gluten sensor) and it’s helped a lot with going to out eat or eating at family’s house. Turns out also there’s a lab that pays $1000 for blood sample if you’ve been diagnosed within the last week (bc your blood contains the antibodies they can use to make tests) found that out at post diagnosis by two weeks

and you will start feeling better. Definitely check out this sites newbie posts. Also I personally didn’t have dermatitis herpetiformis (skin rash from gluten exposure some celiac have) so I didn’t see the need to switch beauty products but have since realized how much shampoo gets on your lips (and inside mouth) while washing and have switched. Best of luck to you, I hope you feel better soon. ❤️

[Bagpuss]

On 1/6/2018 at 8:15 PM, kareng said:

HAve  you been eating gluten free?

Open Original Shared Link

 

For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

• Prior to blood testing we recommend 12 weeks of eating gluten.
• Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.

Thanks - this was my question, also very confused by conflicting advice. Think I may reschedule blood test, at present in 10 days, as although not gluten free, have eaten very little; two casserole mixes in 4 weeks, Trying to lose weight. Will have an endoscopy for Barretts oesophagus in April so makes sense to get the timing right. Think its unlikely to be positive but in a way hope it is! Ill for about a year now and the only bad blood result is folic acid, very deficient in spite of a very healthy diet, duodenum was inflamed at last endoscopy 3 years ago.

I see two doctors as both are part time. First blood test was in Feb , second in Nov by which folate level had improved but still low. Both doctors have now mentioned celiac disease. Take Levothyroxine 150 mcg and TSH normal. Symptoms are more like anemia but no megoblastic anemia or iron deficient showed up. ECG normal Doc is also doing a thyroid panel, hopefully with T3 but haven't been thyroid tired; definitely more like anemia Was fine on Levothyroxine for 4 years.

Apologies for rambling!