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Let My Guard Down...

Glutina

By Glutina
in Coping with Celiac Disease

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Glutina Rookie
Glutina
Posted

Hi everyone!

It has been a while wincw I last wrote, not really by choice, but due to 2 jobs and moving etc. So I hope everyone is doing well!!

Well it is currently 4:15am and I am wide awake in a state of full-fledged glutening. And I have noone to blame except myself!! Not even the wonderful thanksgiving meal that my fiance's mother cooked up...and she tries very hard to always cook gluten free and read labels. Nope, it wasn't someone or something else that got me this time but it was me. Ugh.

Fiance and I were at the grocery store before going over for dinner and I decided that I wanted to bring my own pre-dinner munchies for when we were playing monopoly (tradition haha). So, I went to my usual section where I buy gluten-free Cheechas (really good light munchies!) and saw a flavour on sale: Salt and Vinegar. mmm sounded good. So, assuming that they were also a gluten free flavour, I grabbed a bag and we paid and left.

Fast forward to about half-way through our monopoly game, which also leaves me half-way through the bag of Cheechas! I was noticing my brain getting "foggy" and I was having trouble concentrating/people were even making fun of me for missing collecting my rent all the time haha and my tummy was unusually gurgly. My fiance's brother was interested in my snack of choice and asked if he could see the bag. As we was reading the ingredients, he read "blah blah blah...wheat flour...blah blah"...and he stopped and said, "um...doesn't wheat flour have gluten"...and that's when things started going south. My gurgling stomach soon started to turn crampy/gassy, and I had to ask for a heating pad. Nothing says thanksgiving like a heating pad and stomach troubles, huh???

Because I had just assuuuumed that this flavour was also gluten free because several others say it right on the bag, I had failed to actually read the label. I had gotten lazy!!! Oh noooo!!! And I paid for it...and still am. I can't sleep as the pain is coming in waves...bathroom issues are doing the same...I am puffed up and bloated like a blow-fish and look about 4 months pregnant. I am finding some relief from the IBS drugs I was given during my last trip to the hospital about half a year ago before diagnosis (I'm still kinda a newbie...diagnosed severe gluten intolerance in January) called "Dicetel"....but not much. Just seems to dull the pain a bit, almost like it's foggy...but the cramping and gas are still there. I bet if I hopped on the scale I will have magically gained 5 pounds...I am a "gainer" when eating gluten. Not pretty.

I am supposed to work this morning...but since I haven't slept and can hardly walk I will now have to call in sick (not good) and miss out the subsequent holiday pay. Boo.

I also teach music lessons/am a singer, and this has given me such bad reflux that my throat feels raw and almost like I am getting sick now.

So all in all...LESSON LEARNED. I know better than to assume that things are gluten free, and I admit I got lazy.

I am in such a food rut ( little to no time to cook...2 jobs...) that I think I just simply got lazy. Maybe this is a wake-up call that I need to do more cooking and prepare good, tasty food for myself on a regular basis so that I can have food to bring with me on occasions like this...or at least not be tempted to just buy without reading labels.

I hope all of you reading this are feeling better than I am, and I'm wishing all you Canadians a great thanksgiving monday too!!!

-Glutina

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MollyBeth Contributor
MollyBeth
Posted

I'm sorry you are not feeling well and that your holiday isn't going well!!! I hope you are on the road to recovery!

ShayFL Enthusiast
ShayFL
Posted

Dont beat yourself up too badly. We all make mistakes. That is how we learn. Hope you are better soon.

DarkIvy Explorer
DarkIvy
Posted

I've done the exact same thing with flavored potato chips before. It seemed like a harmless flavor, so I started munching on them. A little while later I started to think "hmm, I never actually bothered to read the label"... sure enough, there was barley something or other on them!

Even more recently, I got sick off of tomato paste. I love the stuff and was eating it out of a jar with the spoon (yeah, I'm weird, I know)... I read the label and realized that it was the "Italian" flavored kind (instead of the regular tomato paste that doesn't really have much in it besides tomato) and was full of spices and wheat. Whoops. I usually grab two or three cans of it at a time at the store just so I have it on hand for cooking (or eating, lol!) and I think I may have just accidentally grabbed a can of the Italian stuff that was mixed in with the regular stuff in the bin. Now every time I shop, I look at every can to make sure I didn't accidentally grab a flavored kind. It was completely inadvertent, I know, because I've always checked the labels on canned foods before I buy them. Once I read one label and knew it was safe, I must have just grabbed a couple more, not making sure each one was the same.

It sucks but it happens, and I'm sorry you got sick! It's the worst when you make a tiny mistake like that and feel really bad about it. I get really hard on myself over this sort of thing, we work so hard to keep gluten our of our systems and the tiniest mistake over something as silly as chips or tomato paste ruins it. After the tomato incident, I cried for about thirty minutes, ranting to the BF about how no one gets it, and how frustrating it is to try so hard to stay healthy, how unsupportive outsiders are, how someone had gotten in my face and said "but I thought you couldn't *eat* bread!" one day when I was munching a sandwich on gluten free bread, etc, etc.

Bah, this stuff is rough. I hope you feel better soon though, and next time you'll know :)

Glutina Rookie
Glutina
Posted
  • Author

Thanks everyone, you already made me feel better :)

Actually it is still affecting me a bit today...feeling "off" and irritable for no otehr reason, despite getting enough sleep and eating well. I am still kinda bloated as well...probably me least favorite of the lovely side effects of glutening.

But now I know for next time, and I have realized that being so hard on myself has no point. It is bound to happen sometimes, right??? Noone's perfect after all of course :)

I hope you all have a great rest of the week and thanks for the caring replies!!!

-Glutina

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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      High DGP-A with normal IGA

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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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