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Mystery glutenings...

Jmg

By Jmg
in Coping with Celiac Disease

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Jmg Mentor
Jmg
Posted

Yesterday an old friend showed up unexpectedly. I call him Eye twitch but that's just a joke between us as he actually yanks the muscle just under my eye. It's his way of saying hi, personally I'd prefer a phone call but we can't have it all.

He's not the only one of the group to show up, Backpain has also made an unwelcome appearance. Old BP invited himself to visit a few days ago and has settled in. He's not as big as he was in the past but he's still a literal pain to share my space with.

The one good thing I can say about him and ET is that when they're present I know about it. Some of the neuro crowd however are a bit more subtle. So for a little while now I've been trying to work out whether I just feel low on a post xmas winter blues session, or if I have been blessed with a return of gluten mediated Anxiety, Depression and fog. I still can't answer that one for sure which may sound stupid? If they're really here they're not as scary as I remember them, or maybe I'm just in a better place to handle them.  

I did get a visit from optic neuritis about 3 weeks ago, but it was just a fleeting moment of obscured vision on one eye. I'd almost forgotten about that one. I've also had a couple of milder chest pains and some rheumatoid pain in my fingers. Happy days.  

Yes, I can hear the shouting from the cheap seats. All of which is just a long winded way of saying I've been glutened, or I've gone mad, or maybe both. The most maddening part of it however is that I don't have a smoking gun that I can point to in Hercule Poirot style 'Aha monsieur, as I predicted it was the eating of the Christmas dinner with the dangers of cross contamination which is ze guilty party here. "Officers, arrest zat colander and take ze scratched saucepans away for questioning".

I don't know what has caused this and that's what's driving me nuts. I'm finding myself wondering if the relatively large amount of gluten-free processed products I've allowed back into my diet are cumulatively too much for my system for instance. Is it possible that on a 'totting up' process I've begun to take too much gluten from gluten-free breads, pastries, cakes and biscuits? I try and avoid dairy but I don't avoid a biscuit because it says milk on the packet. I'm in a shared kitchen and whilst I have my own pan and cutting board etc there are lots of gluteny crumbs around and I do use other pans occasionally if required. Maybe it's that? Joking aside I probably did relax a smidgen over Christmas, so maybe this is the price I pay?

So I probably have to go on a renewed health kick, back to the good stuff and get stricter on the cross contamination. All the 'good' advice which is in my case sometimes easier to deliver than follow through on myself :unsure: In the meantime at least I have the comfort of my old friends visiting so I won't be doing this alone. In a weird way however I find the mystery of HOW I got glutened more annoying than the results. Anyone else ever get that?

 

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Ennis-TX Grand Master
Ennis-TX
Posted

Umm the way your phrased this makes no sense. I had to reread it over 4 times to try to understand it. But yes, if in a shared house some stuff might happen, I always suggest gloves, and laying out freezer paper on your prep surfaces. I also have a habit of leaving the fridge, cabinets, and drawers open before I start cooking to avoid touching the handles, And leave the sink running before I start then glove up and get to work. Call it paranoid but even in my own gluten-free house those practices stuck. Also if your using gluten-free processed food in a house did someone else reach in to a jar, bag of snacks, etc with a glutend spoon or hand?  Just some thoughts for consideration and I wish you luck.

Jmg Mentor
Jmg
Posted
  • Author
1 hour ago, Ennis_TX said:

Umm the way your phrased this makes no sense. I had to reread it over 4 times to try to understand it.

Sorry, I'm a frustrated writer can't help myself. 

Anyway, thanks for wading through it and for going back 3 more times to decipher my ramblings. There should be some sort of medal :P  I do use cooking foil where possible and don't use jars etc. The fridge handles thing is both very clever and somewhat scary. I just don't have this level of attention to detail and maybe that's why I paid the price this time. 

 

 

GFinDC Veteran
GFinDC
Posted

Hi JMG,

There is plenty of ways gluten can sneak into our diets.  My plan when I didn't know what was making me sick was to drop back to a very basic diet for a while and see if that helped.  Just eating a few foods that I knew were safe.  And not taking any vitamin pills etc while troubleshooting.  If things get better after a week then add foods back into your diet one at a time for a week at a time.  Then add another food the next week.  It's a somewhat boring process diet wise but it works.  The thing is that more than one food may be bothering you, so don't stop the process after finding one problem food.  You can add the vitamins and such in the same process, just take your time adding things back so you know what is a problem.  And what's not a problem.

Don't forget drinks like teas. coffee etc that may be a problem.  If you think back over what you added to your diet and when you may find the culprit pretty quickly.  I used to switch about 5 foods that I knew wouldn't make me sick usually so I would switch to that diet.  Mine were peas, chicken, apples, peanuts, rice.

Jmg Mentor
Jmg
Posted
  • Author

It's good advice and I'm grateful for it. I'm just depressed at the thought of stripping the variety out of my diet again. I think this time its cross contamination - because most of the symptoms are quite mild compared to what they've been before...

Sara789 Contributor
Sara789
Posted

@Jmg - I'm so sorry you got glutened. Not knowing the source drives me crazy, so I feel your pain and frustration. I do what GRinDC suggests and go back to basics and reintroduce items one by one. I also keep a food journal to track my progress. It's a pain, but it's come in handy figuring things out and dealing with intolerances. I hope your "friends" leave you in peace soon.

cristiana Veteran
cristiana
Posted

I know exactly what you are talking about. I share a house with gluten eaters and I think that accounts for some cc.  Also, I tend to buy the sort of food that you might find in Coeliac UK's book that does not declare it is gluten free, but they deem safe.  Maybe small amounts are getting in that way.

But my underlying neuro symptoms, which I think are borne of years of eating gluten not knowing I shouldn't be, are ramped up with stress, fatigue, caffeine, poor diet and if I don't eat regular meals.  My nutritionalist has told me I need to eat more protein and less sugar, and that should help.

Sometimes I think it is a perfect storm of all the above that brings them back. 

BTW - I get the twitching eye, never a problem until I first got ill. Now it is one of my 'amber warning lights' to start getting more rest, to take time out, to eat better and to reach for the magnesium and B12.

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Jmg Mentor
Jmg
Posted
  • Author
55 minutes ago, cristiana said:

less sugar,

Ahhh.......  You know that's my kryptonite.  After almost religiously eliminating it from my diet and feeling good its slipped back in. Marshmallows, chocolate, cake etc.  Maybe I need to get all Calvinist on the cookies.

57 minutes ago, cristiana said:

to reach for the magnesium and B12.

Yes I've been a bit blase about the supplements recently as well...

More good advice :) Thanks!

I'll punish myself tomorrow. Spinach and Kale smoothies from here to eternity :blink:

 

Jmg Mentor
Jmg
Posted
  • Author
1 hour ago, cristiana said:

Also, I tend to buy the sort of food that you might find in Coeliac UK's book that does not declare it is gluten free, but they deem safe.  Maybe small amounts are getting in that way.

This has got me thinking as well. I've moved away from only having the things in the book to sometimes looking at ingredients lists in general and if there's no 'made in factory with wheat' warning I've been having it. I thought I was getting over the worst of the paranoia and getting better at managing my diet but maybe I've become complacent and I'll have to pay a price for it. 

Gluten free food for thought I guess...

cristiana Veteran
cristiana
Posted
2 minutes ago, Jmg said:

This has got me thinking as well. I've moved away from only having the things in the book to sometimes looking at ingredients lists in general and if there's no 'made in factory with wheat' warning I've been having it. I thought I was getting over the worst of the paranoia and getting better at managing my diet but maybe I've become complacent and I'll have to pay a price for it. 

Gluten free food for thought I guess...

Ditto. I've been doing the same! 

icelandgirl Proficient
icelandgirl
Posted

Awww JMG...I'm sorry you've been paid a call by those old friends of yours.  Tell them to go away!

Seriously though, it's so frustrating when one gets glutened and has no idea what the source is.  Last year, on vacation, I was glutened and so very sick.  I still have no idea what got me.

A daily food journal is a great idea.  I've kept one for 2 1/2 years and I also write down symptoms.  It has helped me to determine certain foods that were giving me trouble.  It's so much easier to look back on what you've written down than to be trying to remember in your head each thing you ate.

Whenever I do get glutened, I go really simple for a bit...let my system settle back down.  For me that's chicken cooked in a crockpot all day, rice, potatoes, well cooked green beans, carrots or squash, and bananas and berries.  And that's it...very boring, but simple and safe.

I hope that you start feeling better soon!

cyclinglady Grand Master
cyclinglady
Posted

I hope you recover quickly!  It is so frustrating when you can even determine the cause!  

Jmg Mentor
Jmg
Posted
  • Author
1 hour ago, cyclinglady said:

I hope you recover quickly!  It is so frustrating when you can even determine the cause!  

That was the heart of what I was trying to say CL - I just witter on a bit sometimes...

I am feeling grouchy now, whether I can blame that on a crumb or just my crumby attitude I'm yet to decide. Tonight I wandered the supermarket resenting all the stuff I can't have and the people that can. 

I think I need a hobby or something. Or a lottery win. Yes, that would help. Can anyone arrange?

GFinDC Veteran
GFinDC
Posted

@JMG,

I think I did something like 5 separate elimination diets over the first few years gluten-free.  And usually the problem was something I had added to my diet without careful consideration, or a food that I had developed a new intolerance to.  Elimination diets are our friends JMG, just the kind of friends we don't like to see often.

Those other people in the grocery are eating 10 times as many artificial ingredients as you are.  Them there peeps are full of colorings, preservatives, flavor enhancers, emulsifiers, probably antibiotics, pesticides,  and gluten, soy and dairy.  You should really feel sorry for them!  It's a wonder they are even still walking around! :)

Your body is teaching you a better way to eat.  It's using the blunt force method of teaching, but that's a very successful method.  I hope you don't fall sleep in class!

Rome wasn't built in a day, and you can't be an expert in gluten-free diet matters in a few months.  You'll learn though with time and a persistent attitude,  Experience is a great teacher!

 

apprehensiveengineer Community Regular
apprehensiveengineer
Posted

I thought the style of your post was funny :)

I've recently been dealing with a similar situation and have finally gotten to the bottom of it (I think). I like you, live in a shared kitchen. Although my roommate is very considerate and doesn't eat much overtly glutenous food, I've developed a few strategies that seem to work:

  1. separate everything
  2. buy small plastic basin that fits in sink, wash dishes in this (avoid any residue/crumbs/whatever that might be stuck to the sink)
  3. wipe down all counters, handles and taps that I'm going to touch before cooking

I was still having some small problems with CC after this, so I turned to my own food. I got rid of everything that wasn't certified gluten-free (or from a very reputable company), excepting unprocessed fruits/veggies, plain dairy, rice and shelled nuts. I think this was the most key part, as I think that a lot of naturally gluten-free grains that are used in supposedly gluten-free products have enough contamination to cause problems unless the company is specifically monitoring this (as required by the gluten-free certification). Previously, I had been purchasing a lot of food items labelled as gluten-free, but with from smaller local companies that I presume would not actually test their ingredients or final products. Although many celiacs do have other digestive issues with different foods, I really think that many of people's problems with other grains or other ingredients are related to this.

I also replaced all my shower stuff with products that were certified gluten-free. Previously I had been using products that didn't contain gluten explicitly, but were from companies that couldn't guarantee their products were gluten-free because they didn't test them. I know a lot of celiacs are not concerned by this sort of product, but I guess I eat a lot of soap when I shower  as I noticed a big difference within a few days...

Hope this helps.

 

 

 

 

RMJ Mentor
RMJ
Posted

I started by reading ingredients on labels and avoiding known gluten sources.  My antibodies came down but were still high.  Then I went to only buying prepared foods that were labeled gluten free.  Antibodies further down, one still high.  I mainly eat whole foods now, and only buy certified gluten free prepared foods, rice and nuts - hoping that will put my antibodies in a normal range next time they are tested. I had a biopsy last summer and still had blunted villi.  I don't get symptoms so can't tell when I am "glutened."

Ennis-TX Grand Master
Ennis-TX
Posted
2 hours ago, apprehensiveengineer said:

I thought the style of your post was funny :)

I've recently been dealing with a similar situation and have finally gotten to the bottom of it (I think). I like you, live in a shared kitchen. Although my roommate is very considerate and doesn't eat much overtly glutenous food, I've developed a few strategies that seem to work:

  1. separate everything
  2. buy small plastic basin that fits in sink, wash dishes in this (avoid any residue/crumbs/whatever that might be stuck to the sink)
  3. wipe down all counters, handles and taps that I'm going to touch before cooking

I was still having some small problems with CC after this, so I turned to my own food. I got rid of everything that wasn't certified gluten-free (or from a very reputable company), excepting unprocessed fruits/veggies, plain dairy, rice and shelled nuts. I think this was the most key part, as I think that a lot of naturally gluten-free grains that are used in supposedly gluten-free products have enough contamination to cause problems unless the company is specifically monitoring this (as required by the gluten-free certification). Previously, I had been purchasing a lot of food items labelled as gluten-free, but with from smaller local companies that I presume would not actually test their ingredients or final products. Although many celiacs do have other digestive issues with different foods, I really think that many of people's problems with other grains or other ingredients are related to this.

I also replaced all my shower stuff with products that were certified gluten-free. Previously I had been using products that didn't contain gluten explicitly, but were from companies that couldn't guarantee their products were gluten-free because they didn't test them. I know a lot of celiacs are not concerned by this sort of product, but I guess I eat a lot of soap when I shower  as I noticed a big difference within a few days...

Hope this helps.

 

 

 

 

Yes the soaps, almost forgot about those, I had issues for my first 6 months gluten-free with minor issues that ended up being the shampoo I was using. A lot of them like to use some form of hydrolyzed protein like wheat in them. Even ones that do not if another product on the line does, a good chance that product at one pout used the same bottling machines. As a soap they are not as strict as with foods. I changed over to EO hair products, Acure Face scrubs, and Hugo Naturals I found has the best hand soap that leaves my hands feeling soft. Also got this seaweed body wash from Seaweed Bath Co. all are certified gluten-free, Few other brands I have tried but these are the ones I have right now in my house.

squirmingitch Veteran
squirmingitch
Posted

I was so entertained by your story that you made a yucky happening seem like a fun adventure.

I'm sorry this has happened to you. It drives me batty when that happens! BTW, I get old friend eye twitch too. I really hate that guy. Can anyone be so annoying?

 

  • 6 months later...
Jmg Mentor
Jmg
Posted
  • Author

So Saturday saw Thigh Twitch arrive early in the morning for surprise visit, Sunday was Back Pain and its close friend Itchy scalp and today it's everyone's favourite wacky Uncle, POTS and Palpitations upon standing. :(

Not a clue what's triggered this one. I don't keep a food diary and I'm pretty careful. Shared kitchen is my best bet. I had a gluten free fish and chips which is probably a minor risk. A Mcdonalds fries last week which should be ok but you never know. That or the unholy crime of eating something that doesnt explicitly promise that it doesnt have any gluten despite ingredients lists which say as much. 

Just hoping that this won't descend into full gluten depression. :unsure: I feel glum at the moment but not

Coincidentally I've started taking calcium, magnesium and zinc tablets thrice daily along with fish oil, some 20bill strong pro biotics and a big B vitamin. I was just telling myself I could notice a difference when the Pots showed up and confirmed I was residing in planet glutened.

If thou doth shaketh me do I not rattle?

5118594_f260.webp

squirmingitch Veteran
squirmingitch
Posted

Oy! I'm sorry! And because you didn't just add 1 item at the time, you are now left guessing. Been there, done that! It's soooooooo hard to just add 1 item & take it, take it, take it until you're sure it's okay and then add 1 more item and test that & so on & so forth. Ugh!

Jmg Mentor
Jmg
Posted
  • Author
25 minutes ago, squirmingitch said:

Oy! I'm sorry! And because you didn't just add 1 item at the time, you are now left guessing. Been there, done that! It's soooooooo hard to just add 1 item & take it, take it, take it until you're sure it's okay and then add 1 more item and test that & so on & so forth. Ugh!

Yeah that would've definitely been better but I was in a rush to try and improve my quality of life. I'm on a bit of a mission to try and feel better. do more exercise etc. I don't think its the supplements though in any case, they're all gluten and wheat free according to the labels. I'm leaning more towards the shared kitchen. I had a coupe of things last week which maybe couldve been a problem. The acid test will be if symptoms persist though... 

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