Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Help! Not Sure What This Is, But Trying To Figure It Out...

josh052980

By josh052980
in Coping with Celiac Disease

Recommended Posts

josh052980 Enthusiast
josh052980
Posted

Ok, the really crappy part here is that it seems to happen only after eating at Five Guys. It's not a glutening, so I'm not sure what is going on.

If I eat at Five Guys (and I've been known to be a real ass there. The Five Guys in my neighborhood seems to be the worst of them. They have to be CONSTANTLY reminded about CC, to the point that I had them remake a burger and change their gloves. I know I'm not getting glutened for that reason, and this is just different symptoms than my glutening symptoms.

About 5 hours after I eat the burger, I get jittery. My joint begin to ache (when I'm glutened it's my entire body that aches) I'll get a bit of a headache, some heart palpitations and the most noticable of all, SWEATING. Last night for example. I had Five Guys for lunch, dealt with joint aches from about 7pm on, then I went to sleep. I was jolted awake for no reason around 2am, and the sheets had several sweat spots in them, where they were just soaked, but my body was dry. My heart wasn't racing, but it was pounding.

My first thought with all of this is MSG, but I'm not sure. I kept the burger pretty plain (ketchup, onions, green peppers and mayo, didn't have any fries). Anyone have any ideas?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

Ok, the really crappy part here is that it seems to happen only after eating at Five Guys. It's not a glutening, so I'm not sure what is going on.

If I eat at Five Guys (and I've been known to be a real ass there. The Five Guys in my neighborhood seems to be the worst of them. They have to be CONSTANTLY reminded about CC, to the point that I had them remake a burger and change their gloves. I know I'm not getting glutened for that reason, and this is just different symptoms than my glutening symptoms.

About 5 hours after I eat the burger, I get jittery. My joint begin to ache (when I'm glutened it's my entire body that aches) I'll get a bit of a headache, some heart palpitations and the most noticable of all, SWEATING. Last night for example. I had Five Guys for lunch, dealt with joint aches from about 7pm on, then I went to sleep. I was jolted awake for no reason around 2am, and the sheets had several sweat spots in them, where they were just soaked, but my body was dry. My heart wasn't racing, but it was pounding.

My first thought with all of this is MSG, but I'm not sure. I kept the burger pretty plain (ketchup, onions, green peppers and mayo, didn't have any fries). Anyone have any ideas?

Are you ok with peanuts/legumes? I know the ones I've been to fry the potatoes in peanut oil.

josh052980 Enthusiast
josh052980
Posted
  • Author

I kept the burger pretty plain (ketchup, onions, green peppers and mayo, didn't have any fries). Anyone have any ideas?

I am fine with peanuts/legumes, and it wouldn't matter anyways, I didn't have any fries.

jerseyangel Proficient
jerseyangel
Posted

I am fine with peanuts/legumes, and it wouldn't matter anyways, I didn't have any fries.

Whoops, my mistake. Can't think of anything else, I'm sure you are normally ok with the things you had on the burger or you wouldn't have ordered it that way. Sometimes I get reactions that I just can't pin to any one thing. It's frustrating, I know. Hopefully someone else will chime in with other ideas. :)

josh052980 Enthusiast
josh052980
Posted
  • Author

Whoops, my mistake. Can't think of anything else, I'm sure you are normally ok with the things you had on the burger or you wouldn't have ordered it that way. Sometimes I get reactions that I just can't pin to any one thing. It's frustrating, I know. Hopefully someone else will chime in with other ideas. :)

I'm still thinking it's MSG. I've heard they lace the burgers with it too, but I've never been able to find a way to substantiate that claim.

kareng Grand Master
kareng
Posted

Just a thought but, if everytime you eat there, you feel bad.....don't eat there? :)

josh052980 Enthusiast
josh052980
Posted
  • Author

Just a thought but, if everytime you eat there, you feel bad.....don't eat there? :)

I may just do that. I can't seem to narrow down the culprit. It's not every time I eat there though, that's the kicker. I guess it's going to have to be a once in a while thing.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Salax Contributor
Salax
Posted

My first thought was a possibility of MSG as well. I wonder if you could get them to put no seasoning on it if it would help? Or even call the corporate office and ask if they use MSG? Or like someone else said, don't eat there LOL. B)

josh052980 Enthusiast
josh052980
Posted
  • Author

My first thought was a possibility of MSG as well. I wonder if you could get them to put no seasoning on it if it would help? Or even call the corporate office and ask if they use MSG? Or like someone else said, don't eat there LOL. B)

I HATE the possibility of not eating there; there's not many places near me that are safe to go out and eat, so it's yet another limitation. But waking up in a sweat kinda sucks too...

Salax Contributor
Salax
Posted

Understandable. So maybe see if they put seasoning on it while it's cooking and ask them not too and see what happens? Hopefully that will solve it. B)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract. They can stimulate IgG antibody production as your blood test shows. Even beans have lectins. You've simply eaten too many lectins and irritated your digestive tract. You may want to allow your digestive tract...
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg). Both are gluten free and free of other allergens. I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25". It's gluten and allergen free and made in the USA. It's a powder form of Vitamin A. ...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.
    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding. I will have my first appt with a GI dr on March 4th I will not eat gluten again - at least not on purpose ...
    5. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.