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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.

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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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    3. - Scott Adams replied to Blue Roan's topic in Related Issues & Disorders
      2

      Lymph nodes in neck + thyroid issues

    4. - Scott Adams replied to StrongerThanCeliac's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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      2 Separate Glutenings - Recovery Timeline?

    5. - Scott Adams replied to Therockfrog's topic in Related Issues & Disorders
      2

      Itchy skin, tingling in feet and scalp


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    • sh00148
      Thanks.  So something has come up on his blood tests and I have an appointment to discuss the findings on Monday. My son has been soya free and dairy free for a while as we did York food testing to check for allergies intolerances.     
    • cristiana
      Hi @sh00148 I am so glad that your son is going to have a blood test next week.    If the blood test is that soon, and he has been consuming normal levels of gluten up until now, he should have had enough exposure to gluten to test positive should you decide to stop the gluten immediately, as Scott suggest.  However, one thing you may wish to change in the short term instead/as well is to stop him consuming dairy products.  If he is a coeliac, he may have become temporarily dairy intolerant.  The tips of the villi, which line the gut and are damaged in coeliacs, produce lactase, an enzyme essential for the digestion of dairy.  If they are damaged it can contribute to diarrhea and gas.  I had this some months after my own coeliac diagnosis, and it improved no end when I gave up dairy for a while.  Once on a gluten free diet they heal, and most coeliacs can return to consuming dairy. I would have thought that with those bowel issues in a young child what is happening to him is entirely normal.    
    • Scott Adams
      It’s understandable to feel frustrated, especially when you’re managing celiac well but still experiencing new, unexplained symptoms. Many people with celiac notice sensations around the neck and jaw area, even without visible swelling. Sometimes, lymph node sensitivity or a tight feeling in the throat can linger as part of the body’s inflammatory response, even if your thyroid and other tests come back normal. It sounds like you’ve been thorough with testing and have seen multiple specialists, which is great. A few things might be worth considering: for some people with celiac, there can be lingering sensitivities to trace gluten, cross-reactive foods, or even certain environmental factors that can cause persistent inflammation. Since you’ve tried antihistamines and a humidifier, you might want to discuss options like different allergy medications or seeing an ENT specialist if you haven’t already. Some find that supplements (like anti-inflammatory options or probiotics) help support overall inflammation reduction, though you should always check with your doctor first. It’s frustrating when you feel the symptoms without an obvious cause, but trust your instincts—hopefully, with persistence, you’ll find answers and some relief soon.
    • Scott Adams
      It sounds like you’re really going through it—accidental gluten exposure can definitely take a toll, and when it happens twice close together, it can feel like it drags on even longer. Many people find that each glutening is a bit unpredictable in terms of recovery, and it could take a little extra time if your body hasn’t fully cleared out the first exposure before the second one hit. Staying hydrated, avoiding other potential irritants (like alcohol and spicy foods), and resting can help ease the symptoms as your gut heals. Hopefully, things start to settle soon! In the meantime, it could be helpful to communicate with friends about specific brands to look out for, even when it’s hard to ask in the moment. Hang in there—hope you’re feeling much better soon! This article, and the comments below it, may be helpful:    
    • Scott Adams
      @Therockfrog, it sounds like you’ve been through so much, and managing these symptoms must be incredibly challenging. Tingling in your feet and scalp, especially after eating specific foods, can sometimes be related to histamine intolerance or even a sensitivity to certain food proteins, as you’ve suggested. Since you’ve already noticed patterns with gluten, nuts, and dairy, it might be worth looking into a histamine intolerance or mast cell activation syndrome (MCAS), where the body has an exaggerated response to histamine and other triggers, which can cause itching, tingling, and even high cortisol levels. This would explain why your symptoms change with seasonal pollen too. If you’re considering eating some of these trigger foods before seeing the allergist, it could help with identifying specific IgE reactions. However, since this can worsen symptoms, you might consider working with your doctor to approach this slowly, maybe introducing one trigger at a time. It’s great you’ve tracked your symptoms so closely—that detailed information will help the allergist a lot. In the meantime, perhaps continue with antihistamines, as sometimes trying different types (H1 and H2 blockers, for example) under guidance can make a difference. Hang in there! It sounds like you’re very close to finding the root of these reactions.
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