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Endoscopies and Toasters (and Greetings!)


Baguetteless
trents
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Baguetteless Rookie

Hello, all! I’ve read a fair whack of the posts on this forum, and they are most illuminating and comforting. However, I can’t quite find the answer I need, so possibly someone can help?

I tested positive for Celiac last week through blood tests (and symptoms), but my endoscopy isn’t for another two and a half weeks, and I loathe the idea of continuing gluten that long.

I’ve had terrible brain fog, aches, and gut troubles for about ten years, and upon positive serology results I dropped the gluten with the speed of a thousand gazelles. Within days my symptoms seemed to improve, but apparently the gastroenterologist said I need to return to gluten in order to show a positive endoscopy/gastroscopy result? The receptionist couldn't clarify how much gluten, or for how long, so I am deeply confused.

I have reluctantly returned to gluten, and now I feel sick as the proverbial dog. Is it REALLY necessary to continue up until the endoscopy? Surely after ten years of weathering my villi won’t magically spring back to life in two weeks?  

My blood tests came back positive, almost irrefutably Celiac, as far as I can tell:

Deamidated Gliadin IgA - 30 U/ml - (normal <15)

Deamidated Gliadin IgG - >250 U/ml - (ditto)

Tissue Transglutaminase IgA - 104 U/ml - (ditto)

Tissue Transglutaminase IgG - 28 U/ml - (ditto)

I’m 40, and have been rather unwell for about ten years, with what I assumed, foolishly, was IBS or just general sensitivities. I’m a neurotic, underweight, pallid, fairly highly strung writer who spent their twenties floundering around Europe drinking and smoking too much, so I gathered a certain amount of suffering in my thirties was to be expected.

I’ve had MCS (multiple chemical sensitivities) since my early twenties owing to excessive solvent exposure through oil painting, which I largely ignored in my Bohemian era, but which then blossomed horribly into years of depression, anxiety, headaches, bloating and all that malarkey, in the mere presence of any paint, fragrance, plastics, synthetic fabrics, etc. My blood tests also show I apparently have a mild form of hemochromatosis, but that could be through excess Vit C intake, and also I don’t want to think about that yet. One exciting new disease at a time.

I feel like a colossal idiot, and only hope I can reverse or mitigate some of the damage already done! To my intestines, obviously, but also my immune system and brain (such as it is).

What I want to know is, can I assume myself a Celiac based on blood tests and symptoms, drop the gluten again prior to my endoscopy on the 27th, and given I live in a shared gluten-riddled house, buy myself a shiny new toaster?

My best wishes to you all, and gratitude for any advice,

Baguette-less.

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cristiana Veteran

Bonjour, Baguette-less.

Welcome to the forum, and what a fabulous name!

I am afraid I can't answer the question that you are asking but I know others will be able to.

What I would say however is if you do decide to follow doctors orders on this one as you are so nearly there, try to think of anything that you will really miss when you go gluten free, this is your last chance to eat it.   I don't say this lightly.... the health benefits of being gluten free are amazing, but what I'd give for a Krispy Kreme donut!

Cristiana

 

 

 

 

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plumbago Experienced

It’s important to keep eating gluten before the endoscopy in order to get an accurate reading. At least this is the understanding currently. The endoscopy will give you a good baseline reading, against which to judge healing later on. Others may know more, but from what I've heard, one piece of gluten-containing bread or toast a day should be enough.

There may be exceptions to this rule, but you can also always check with the endoscopy center, your doctor, or other provider. Best of luck.

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Baguetteless Rookie
2 hours ago, cristiana said:

Bonjour, Baguette-less.

Welcome to the forum, and what a fabulous name!

I am afraid I can't answer the question that you are asking but I know others will be able to.

What I would say however is if you do decide to follow doctors orders on this one as you are so nearly there, try to think of anything that you will really miss when you go gluten free, this is your last chance to eat it.   I don't say this lightly.... the health benefits of being gluten free are amazing, but what I'd give for a Krispy Kreme donut!

Cristiana

 

Ah yes! Excellent idea. Croissants and licorice (not together) it is! I suddenly have a terrible fear about Laphroaig, but I HOPE whisky is gluten free....O dear.

Ta for the welcome!

B

 

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Baguetteless Rookie
32 minutes ago, plumbago said:

It’s important to keep eating gluten before the endoscopy in order to get an accurate reading. At least this is the understanding currently. The endoscopy will give you a good baseline reading, against which to judge healing later on. Others may know more, but from what I've heard, one piece of gluten-containing bread or toast a day should be enough.

There may be exceptions to this rule, but you can also always check with the endoscopy center, your doctor, or other provider. Best of luck.

Thank you, this is very helpful! I hadn't considered a baseline reading at all. Our day surgery is quite busy at the moment, as we have the Delta lurgy ripping through the city, so I shall try one piece of bread (as that does seem to be the consensus) or half a croissant a day or somesuch. It's rather frustrating not to know for certain for a few weeks, although, as said, with those numbers it MUST be Celiac, surely.

Cheers for the help, Plumbago.

 

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cristiana Veteran
29 minutes ago, Baguetteless said:

Ah yes! Excellent idea. Croissants and licorice (not together) it is! I suddenly have a terrible fear about Laphroaig, but I HOPE whisky is gluten free....O dear.

Ta for the welcome!

B

 

Yes... gluten-free croissants are available, but to my mind they don't cut the mustard.

I attach a link from Coeliac UK about whisky which will cheer you up.  (Personally I'm with Gussie Fink-Nottle on this one, who I seem to remember in an episode of Jeeves & Wooster referred to whisky as "vitriol", and "utter muck".  I visited a friend in Scotland who tried to convert me but it still tastes like medicine to me! 😆)

https://www.coeliac.org.uk/information-and-support/your-gluten-free-hub/home-of-gluten-free-recipes/healthy-eating/alcohol/

 

Edited by cristiana
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Baguetteless Rookie
4 minutes ago, cristiana said:

Yes... gluten-free croissants are available, but to my mind they don't cut the mustard.

I attach a link from Coeliac UK about whisky which will cheer you up.  (Personally I'm with Gussie Fink-Nottle on this one, who I seem to remember in an episode of Jeeves & Wooster referred to whisky as "vitriol", and "utter muck".  I visited a friend in Scotland who tried to convert me but it still tastes like medicine to me! 😆)

https://www.coeliac.org.uk/information-and-support/your-gluten-free-hub/home-of-gluten-free-recipes/healthy-eating/alcohol/

 

I have added that link VERY SWIFTLY to my Celiac bookmark folder. Mercifully I mainly drink wine, but my mother, who I've prodded into getting tested also, is very worried about her Jameson whisky. Laphroaig is an...interesting...experience. It's vaguely meant to taste like a boot fished out of the sea, thrown in a peat fire, then rubbed vigorously on a horse, from what I can gather. People get quite passionate about it.

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trents Grand Master

The pretest gluten challenge guidelines for obtaining a valid endoscopy/biopsy are the daily consumption of an amount of gluten equivalent to two pieces of wheat bread for at least two weeks. Quite frankly, with your serological numbers, I see no need for you to proceed with the torture just to ensure that the biopsy/endoscopy is valid. There is some merit to what plumbago said about the biopsy giving a baseline gauging healing in the future. But apart from that, I believe the serological numbers speak for themselves. In addition, if you do decide to start eating  gluten free now and start to feel better then what other confirmation do you need? In the UK, many doctors are relying only on the serological evidence to conclude celiac disease when the numbers are high. On the other hand, you are only 2+ weeks out from the biopsy so the torture of eating gluten won't have to be endured much longer.

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Baguetteless Rookie
11 hours ago, trents said:

The pretest gluten challenge guidelines for obtaining a valid endoscopy/biopsy are the daily consumption of an amount of gluten equivalent to two pieces of wheat bread for at least two weeks. Quite frankly, with your serological numbers, I see no need for you to proceed with the torture just to ensure that the biopsy/endoscopy is valid. There is some merit to what plumbago said about the biopsy giving a baseline gauging healing in the future. But apart from that, I believe the serological numbers speak for themselves. In addition, if you do decide to start eating  gluten free now and start to feel better then what other confirmation do you need? In the UK, many doctors are relying only on the serological evidence to conclude celiac disease when the numbers are high. On the other hand, you are only 2+ weeks out from the biopsy so the torture of eating gluten won't have to be endured much longer.

Exactly. It's the fact that it's only two weeks, whereas others here have to wait MONTHS for endoscopies or biopsy results, which makes me feel like I'm being a bit flimsy. I should develop some intestinal fortitude (to deal with my intestinal ineptitude). But the brain fog/anxiety/irritability is horrendous, and I just feel wretched.

My chief concern, I suppose (other than the general fear I'm sure everyone had that the endoscopy will show up something awful), is that the celiac disease has recently kicked up into a higher level of active damage in the last month, if that's a thing that happens, after sort of simmering away in the background for ten, twenty (who knows?) years, and if so, I'd rather not cause any MORE damage, which will take however long to undo.

On the other hand, if celiac disease has indeed only recently become active, then the damage might be minimal, and it might heal in the two weeks before the endoscopy if I cut out gluten now, which would result in negative histology, which would not be helpful diagnostically.

I'm glad (-ish) you think the serology speaks for itself! I quite agree. But obviously I am not a medical personage.

Thank you for your advice! 

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trents Grand Master

How did you get scheduled for a biopsy so quickly? Do you have friends in the right places on the medical community?

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Baguetteless Rookie
33 minutes ago, trents said:

How did you get scheduled for a biopsy so quickly? Do you have friends in the right places on the medical community?

That would be helpful! But no, alas. I'm in the antipodes (Australia, specifically), which has an excellent medicare system, which would have granted me a free endoscopy in about two months time. However, in this instance, with our public hospitals rapidly overflowing, my GP referred me to a private practice which has only minimal waiting. This eases the strain on the hospitals, and obviously also allows me a swifter diagnosis. Medicare still covers half the cost, and all the pathology. The situation is unbelievably grim in other countries, I'm aware, and I'm deeply grateful for the medical care that living on the forgotten side of the world affords me. 

The spiders etc. I could do without.

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Ruu Apprentice

I just saw my gastro and got an endoscopy scheduled in 2 weeks, so I am in the same boat as you. I asked if he could let me know if anyone canceled so I can be seen sooner; he said yes. You can maybe ask to be put on a waitlist, or call every morning to see if anyone canceled for the next day? In the mean time, I'm -trying- to enjoy gluten foods while I can... using "enjoy" pretty loosely here.

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cristiana Veteran
22 minutes ago, Ruu said:

I just saw my gastro and got an endoscopy scheduled in 2 weeks, so I am in the same boat as you. I asked if he could let me know if anyone canceled so I can be seen sooner; he said yes. You can maybe ask to be put on a waitlist, or call every morning to see if anyone canceled for the next day? In the mean time, I'm -trying- to enjoy gluten foods while I can... using "enjoy" pretty loosely here.

Good tip re: cancellations.

Before my endoscopy I ate loads of Weetabix and a type of chocolate biscuit bar called a Penguin which is sold here in the UK and has no gluten free equivalent.  Brought on some awful headaches, but it was worth it!

Edited by cristiana
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Oldturdle Collaborator
14 minutes ago, cristiana said:

Good tip re: cancellations.

Before my endoscopy I ate loads of Weetabix and a type of chocolate biscuit bar called a Penguin which is sold here in the UK and has no gluten free equivalent.  Brought on some awful headaches, but it was worth it!

 

15 minutes ago, cristiana said:

Good tip re: cancellations.

Before my endoscopy I ate loads of Weetabix and a type of chocolate biscuit bar called a Penguin which is sold here in the UK and has no gluten free equivalent.  Brought on some awful headaches, but it was worth it!

Baquetteless,

     First, let me thank you for your  funny. refreshing writing!  Sometimes, even a somber subject needs a little levity to help the rest of us lighten up a little.  You put a smile on my face!

     My situation was opposite from yours.  I had a biopsy, for other reasons, before the blood test.  It came back"with features consistent with celiac sprue."  My G.I. doctor wanted me to have the blood test, "just to be certain," before I went gluten free.  One thing led to another, (covid, moving across country  etc.) And it was almost a year before I had the labs done.  Meanwhile, although I didn't feel all that bad, pictures taken then show I was wasting, and skeletal.  Anyway, my celiac enzymes came back off the charts high, but I waited a couple weeks, until New Years Day to go gluten free.  (Yes.  I now have gained some weight, and feel MUCH better.)  My advise to you, it literally will not kill you to eat gluten for two more weeks, and get your biopsy.  Like others have said, it will be your baseline, for future reference.  Also, eat and enjoy the things you know you will miss.  For me, I regret not having that last raised glazed doughnut!

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cristiana Veteran
18 minutes ago, Oldturdle said:

Also, eat and enjoy the things you know you will miss.  For me, I regret not having that last raised glazed doughnut!

Oh... how I would love a glazed doughnut!  Strange thing is, I even miss things I didn't like much before I gave up gluten, including KFC and McDonalds...  Very odd.

The good thing is, every now and again I walk into the supermarket to find someone has invented yet another gluten-free equivalent of something I thought I'd never eat again.  The Free-From aisle has doubled in size since I was diagnosed.

Edited by cristiana
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Ruu Apprentice
1 hour ago, cristiana said:

Oh... how I would love a glazed doughnut!  Strange thing is, I even miss things I didn't like much before I gave up gluten, including KFC and McDonalds...  Very odd.

The good thing is, every now and again I walk into the supermarket to find someone has invented yet another gluten-free equivalent of something I thought I'd never eat again.  The Free-From aisle has doubled in size since I was diagnosed.

Something good that came out from gluten free trend are all the substitutes! Same with keto, not more people with diabetes have more options.

And now I am adding a glazed doughnut to my "goodbye" list.

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cristiana Veteran
9 hours ago, Ruu said:

And now I am adding a glazed doughnut to my "goodbye" list.

But hopefully it's "au revoir" rather than goodbye forever!

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AlwaysLearning Collaborator

Though I know that many people use endoscopy results as a way to monitor healing after going gluten free, and that you would need to start with your baseline test, I am firmly NOT in the camp that endoscopies are necessary. My cynical side wonders how much of it is simply an opportunity for doctors to make some more money. 

That said, I know that many people need to have the endoscopy done in order to get a solid diagnosis because the results from their blood work was inconclusive. This does not seem to apply to you.

If you only have to wait two weeks for the test, I would probably suck up the pain and discomfort and continue with the gluten for now. Granted, if it were me that would mean spending more time in the bathroom than I would like, but if you're not going to do it right, then I figure you may as well cancel the endoscopy altogether. There are plenty of people in this forum that have had to forgo testing, either endoscopy or blood work, because they can't tolerate the gluten. But after 40 years of eating gluten, two more weeks seems to be a small ask.

But, I would be VERY optimistic for your recovery after going gluten free. Though you may think you know the cause of many of your ailments, because celiac is an autoimmune disease, the effects can be felt in any number of ways. One person might experience mainly digestive issues, another might suffer neurological. The list of symptoms that just magically disappeared for me when I went gluten free was long and included lots of things that I would have never imagined could be caused by gluten. After you get through the first week of being gluten free, during which you might actually feel worse than when you were eating gluten (plan a lot of naps), you can expect to see major improvements pretty quickly. You could be feeling better in days, not weeks!

Though I think there is little need for endoscopies, I am a fan of testing for vitamin deficiencies. If you are good about staying gluten free, you can expect many to improve as you stop suffering from malnourishment. But please only treat deficiencies that you actually have. Though many supplements are supposed to be safe, taking anything can come with risks.

After you've been gluten free for a while and have begun experiencing fewer health problems, I would continue to look for answers for any remaining issues. For instance, do you have chemical sensitivity or is it an overactive thyroid? The body is amazingly resilient and able to heal if it is allowed to, and going gluten free should enable healing that wasn't possible before.

Also, I would not get too hopeful for various types of alcohols being gluten free. While they might undergo a distillation process that "should" render them gluten free, they are still being produced in a facility that is contaminated with gluten so cross contamination is still going to be a risk. And even if they are normally okay for you, every once in a while, there could be a bad batch. Of course, the same can be said for any product that is not being tested for gluten and is simply a manufacturer saying on their website that their product is gluten free. But you'll get better over time at figuring out where the dangers lie.

Best of luck to you. I know you're going to do great!
 

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Baguetteless Rookie
12 hours ago, AlwaysLearning said:

Though I know that many people use endoscopy results as a way to monitor healing after going gluten free, and that you would need to start with your baseline test, I am firmly NOT in the camp that endoscopies are necessary. My cynical side wonders how much of it is simply an opportunity for doctors to make some more money. 

That said, I know that many people need to have the endoscopy done in order to get a solid diagnosis because the results from their blood work was inconclusive. This does not seem to apply to you.

If you only have to wait two weeks for the test, I would probably suck up the pain and discomfort and continue with the gluten for now. Granted, if it were me that would mean spending more time in the bathroom than I would like, but if you're not going to do it right, then I figure you may as well cancel the endoscopy altogether. There are plenty of people in this forum that have had to forgo testing, either endoscopy or blood work, because they can't tolerate the gluten. But after 40 years of eating gluten, two more weeks seems to be a small ask.

But, I would be VERY optimistic for your recovery after going gluten free. Though you may think you know the cause of many of your ailments, because celiac is an autoimmune disease, the effects can be felt in any number of ways. One person might experience mainly digestive issues, another might suffer neurological. The list of symptoms that just magically disappeared for me when I went gluten free was long and included lots of things that I would have never imagined could be caused by gluten. After you get through the first week of being gluten free, during which you might actually feel worse than when you were eating gluten (plan a lot of naps), you can expect to see major improvements pretty quickly. You could be feeling better in days, not weeks!

Though I think there is little need for endoscopies, I am a fan of testing for vitamin deficiencies. If you are good about staying gluten free, you can expect many to improve as you stop suffering from malnourishment. But please only treat deficiencies that you actually have. Though many supplements are supposed to be safe, taking anything can come with risks.

After you've been gluten free for a while and have begun experiencing fewer health problems, I would continue to look for answers for any remaining issues. For instance, do you have chemical sensitivity or is it an overactive thyroid? The body is amazingly resilient and able to heal if it is allowed to, and going gluten free should enable healing that wasn't possible before.

Also, I would not get too hopeful for various types of alcohols being gluten free. While they might undergo a distillation process that "should" render them gluten free, they are still being produced in a facility that is contaminated with gluten so cross contamination is still going to be a risk. And even if they are normally okay for you, every once in a while, there could be a bad batch. Of course, the same can be said for any product that is not being tested for gluten and is simply a manufacturer saying on their website that their product is gluten free. But you'll get better over time at figuring out where the dangers lie.

Best of luck to you. I know you're going to do great!
 

Thank you for this exceedingly helpful and detailed response! I have indeed continued with gluten, and will do up until the wretched endoscopy. As others have suggested, I am romping through a selection of soon-to-be-outlawed food items.

I am VERY interested in the possibility that all my various ailments are Celiac related. The neurological ones being by far the most hobbling, in terms of daily life. I have lived for twenty years in a ghastly dream state, it feels. A borderline being, with a decidedly untethered state of mind. I find it impossible to focus for large sections of the week/day, and either have a dreadful hotness and buzzing in the brain, or a foggy numbness, neither of which are conducive to writing, which is unfortunately my occupation (along with ink-scribbling). I have joint pain, and desert-dry skin, and cold feet and hands, and am looking vaguely cadaverous of late, so it would be, oddly, wonderful to have a diagnosis, which would point the way to recovery.

No supplements have ever worked for the brain fog, other than gingko, a little. B vitamins seem to make the fog worse (although I know the B vitamins are not related to each other, so it's ONE of them in a multi B vitamin which I'm reacting to, probably), and Vit D gives me acute anxiety (which I believe is a result of magnesium deficiency, or so Reddit thinks), so yes, the first thing I'll be doing after the endoscopy is arranging a blood test for micro-nutrient deficiencies, and sorting all that fiddly mess out.

Above all, yes, I am hoping the MCS abates somewhat once the Celiac is under control. Although, from long-term experience of it, and through speaking to fellow MCS folk, it seems the only cure is avoidance of synthetic culprits. My thyroid seems to functioning fine, so I suspect I'm going to end up living in a tin-foil hut.

Although Spanish tiles are also a possibility!

B

 

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AlwaysLearning Collaborator

Hahahaha. Spanish tiles, definitely!

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Baguetteless Rookie
On 9/14/2021 at 5:18 AM, Oldturdle said:

 

Baquetteless,

     First, let me thank you for your  funny. refreshing writing!  Sometimes, even a somber subject needs a little levity to help the rest of us lighten up a little.  You put a smile on my face!

     My situation was opposite from yours.  I had a biopsy, for other reasons, before the blood test.  It came back"with features consistent with celiac sprue."  My G.I. doctor wanted me to have the blood test, "just to be certain," before I went gluten free.  One thing led to another, (covid, moving across country  etc.) And it was almost a year before I had the labs done.  Meanwhile, although I didn't feel all that bad, pictures taken then show I was wasting, and skeletal.  Anyway, my celiac enzymes came back off the charts high, but I waited a couple weeks, until New Years Day to go gluten free.  (Yes.  I now have gained some weight, and feel MUCH better.)  My advise to you, it literally will not kill you to eat gluten for two more weeks, and get your biopsy.  Like others have said, it will be your baseline, for future reference.  Also, eat and enjoy the things you know you will miss.  For me, I regret not having that last raised glazed doughnut!

 

Dear Old Turdle,

First, apologies for delay! Fate saw me griping about a pitiful little two week wait and decided to give me something else to occupy my brain. It gave me shingles. Huzzah!

Mercifully mild, but unexpected, and unwanted, and apparently a side-effect of the Pfizer vaccination, which I had just had. It seems in certain folk the vaccine stirs up lazy, brooding viruses lying dormant, and gives them a run around. In my case I had chicken pox as a child, so as a quasi-adult I got blisters on my snozz. Very glad I managed to get a jab at all, as our country is mishandling the whole affair, but it did mean I spent yesterday having dye squirted into my eyes to make sure the shingles hadn't invisibly encamped there, and then had to wander home from the city with massively dilated pupils in the middle of a rain storm. In retrospect a taxi would have been more sensible.

Anyroad, it's all under control now, and the Sydney Eye Hospital is a beautiful old building with Italianate porticos.

Your feeling fine, but becoming wasting and skeletal I can entirely empathise with. My mother and friends have been saying I've been looking cadaverous this past year, rather than merely the David Bowie/Tilda Swinton general vibe I tend to try for, and peering critically at photos now I see there's a sort of shipwreck-at-low-tide thing going on with bones stretching the skin in places, so YES, I am very glad to hear you're fleshing out a tad! Hopefully soon you'll be sailing in full colours!

Regards, Baguetteless

 

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Baguetteless Rookie
On 9/14/2021 at 7:29 AM, Ruu said:

Something good that came out from gluten free trend are all the substitutes! Same with keto, not more people with diabetes have more options.

And now I am adding a glazed doughnut to my "goodbye" list.

 

On 9/14/2021 at 5:36 AM, cristiana said:

Oh... how I would love a glazed doughnut!  Strange thing is, I even miss things I didn't like much before I gave up gluten, including KFC and McDonalds...  Very odd.

The good thing is, every now and again I walk into the supermarket to find someone has invented yet another gluten-free equivalent of something I thought I'd never eat again.  The Free-From aisle has doubled in size since I was diagnosed.

 

I have never had a glazed doughnut, and now I feel it is something simply necessary to my existence. That is THREE of you mentioning it now!

I think in Australia we're more partial to TimTams and biscuity things, and broiling to death two metres away from the surface of the sun.

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cristiana Veteran
9 minutes ago, Baguetteless said:

 

 

I have never had a glazed doughnut, and now I feel it is something simply necessary to my existence. That is THREE of you mentioning it now!

I think in Australia we're more partial to TimTams and biscuity things, and broiling to death two metres away from the surface of the sun.

Welcome to the Glazed Doughnut Last Chance Saloon. 

You have less than a fortnight to find one.  No pressure...

I remember Tim Tams well - hopefully they do a gluten free version?  I also hope someone senior at McVities in the UK is reading this and will create a gluten-free Penguin, Tim Tam's British cousin, long overdue in my book.

Edited by cristiana
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AlwaysLearning Collaborator

OMG! The shingles excursion story was priceless! Sorry to hear that happened to you and I hope you feel better soon. 

And congratulations on being able to get a jab! If you're on a two-shot schedule with an mRNA vaccine, be prepared for the reactions to the second jab to be worse. Get it on a Friday so that you can sleep all weekend.

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Oldturdle Collaborator

Baguetteless,

     For God's sake, write a book!!  I absolutely love your writing style.  Your humor is unique and nonstop, but you still efficiently make your point.  Anyone writing about something as bleak as celiacs disease, and have me rolling around on the floor laughing so hard I can't breathe, has got a real future in "disease humor!"  I never realized shingles could be so funny!  Seriously, the world needs you.  I can't wait to buy your book.  Hmm...maybe you also do standup comedy?  

     I bet you will have a speedy recovery from all your ailments once you go gluten free.  (I kind of enjoyed the brain fog, but to each his own.)  Good luck, and keep us posted!

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    • RMJ
      It will not undo all of the healing.  If it did, diagnosis of celiac disease would be much easier!  To have enough damage to see on an endoscopy requires several weeks of gluten ingestion. 
    • Jean Shifrin
      HI, I am new to this and am still in 'repair' mode, which I know will take time. But I'm wondering if anyone knows what happens if you ingest gluten after you have made a lot of progress in repairing your villi. Does anyone know if you just have a short-term issue? Or does an accidental ingestion of gluten derail all the work you've done and set you back to square one? Thanks.
    • Scott Adams
      Hydrolyzed wheat is wheat protein that has been broken down into smaller components through a chemical or enzymatic process called hydrolysis. This ingredient can be found in various products, including cosmetics, personal care items, and some food products. For people with celiac disease, hydrolyzed wheat is generally not safe to consume because it still contains gluten proteins, even in its broken-down form. Though hydrolysis reduces the size of these proteins, it doesn’t fully remove the components that trigger an autoimmune response in people with celiac disease. In food products, hydrolyzed wheat protein still poses a risk and should be avoided. With regard to the McDonald's French fries, the total amount of hydrolyzed wheat in the flavoring is small, and the amount that ends up in an order of fries is even smaller, and likely below 20ppm. McDonald’s states that the fries are gluten-free by ingredient and free from cross-contact with gluten-containing foods in their dedicated fryers. Third-party tests and statements by McDonald's confirm gluten levels are below the FDA threshold for gluten-free labeling (20 parts per million or less). So, while McDonald’s USA fries may be gluten-free based on testing, some people with celiac disease still approach them cautiously due to the past concerns and individual sensitivities.
    • trents
      Here is an excerpt from this article: https://pmc.ncbi.nlm.nih.gov/articles/PMC82695:   Studies have shown that various peptidases of fungal, plant, animal, or bacterial origin are able to hydrolyze gluten into harmless peptides. According to SDS‐PAGE pattern, proteolytic enzymes hydrolyze gliadins (Heredia‐Sandoval et al., 2016; Scherf et al., 2018; Socha et al., 2019; Wei et al., 2018, 2020). Bacterial peptidase (Krishnareddy & Green, 2017), fungal peptidase (Koning et al., 2005), and prolyl endopeptidases (PEPs) (Amador et al., 2019; Janssen et al., 2015; Kerpes et al., 2016; Mamo & Assefa, 2018) thoroughly degrade gliadin fractions to decrease gluten concentration and influence celiac disease. Aspergillus niger derived PEP (AN‐PEP) were assessed in clinical cases for their impact on modifying immune responses to gluten in celiac patients (Lähdeaho et al., 2014). Guerdrum and Bamforth (2012) reported that PEP addition in brewing technology decreased the prolamin and all of the identified immunopathogenic gluten epitopes in beer production (Akeroyd et al., 2016). On the contrary, many of the recent investigations which employed enzyme‐linked immunosorbent assay (ELISA), mass spectrometry, and Western blot analysis reported that PEP did not thoroughly destroy the whole gluten proteins (Allred et al., 2017; Colgrave et al., 2017; Fiedler et al., 2018; Panda et al., 2015), which indicates that beers treated with PEP are not safe for celiac disease patients. Anecdotally, this excerpt supports what we hear from the celiac community on this forum with regard to "gluten free" hydrolyzed wheat products and that is that some still react to them while many don't.
    • Scott Adams
      There aren't good studies that have been done on celiac disease remission, and I'm going from a distant memory of an older post here, but the longest remission that Dr. Stefano Guandalini from the University of Chicago Celiac Disease Center has witnessed was ~10 years, then the symptoms of celiac disease and the damage came back. The real issue though, is that you still could increase your risk of various related diseases and disorders by eating gluten, but again, celiac disease remission has not been studies enough to know what health risks you might face.
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