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

Mystery Gluten!


WhimsiKay

Recommended Posts

WhimsiKay Apprentice

Hi, everyone!

So, I'm sitting here dying -- chills, D, cotton-mouth, all of it -- and I've been at it since about 3am. The catch: I ate nothing bad. I touched, as far as I'm aware, nothing bad! The food was my own, prepared like usual with no gluten int he house to contaminate it and stored in ziplock bags that were fresh from the box. At first, I thought it might be my haircolor that I'd gotten on my hands, but by all accounts, Feria is gluten-free.

I seem to run on a system of about 5 hours, ish. 5 hours after I eat, I drop into full fledged glutening. (The minor symptoms like dry-mouth start earlier.) But I didn't eat anything at ten at night. I was at a friend's house, but I didn't touch anything except dishes and a tea kettle. Now, I may have picked up something from that, but it seems so unlikely because I've been there every Wednesday for two months and haven't had any issues.

That said, talking it out now, I suppose it's fair to say they could have splashed glutenous food on the kettle when they cooked -- you know, like splatters. But if it wasn't that... what on earth could it be?

Before anyone asks, my house has gone completely gluten-free: all detergents, soaps, hair- and body-care products, food, face-care, etc.

:( I'm miserable. I want to stop being sick now.

Have you ever suffered a "mystery glutening"?


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



Celiac.com Sponsor (A8-M):



curlyfries Contributor

You haven't been gluten-free very long....could be you have unmasked another food intolerance. Have you eliminated dairy? Many celiacs can't handle dairy until their villi heal. Others have to eliminate soy also. I have had to eliminate dairy and sugar.

jerseyangel Proficient

I would consider an additional food intolerance also. When you said that you had a dry mouth, it reminded me that this is the first symptom I had when I realized I was intolerant to tapioca.

Some common causes of food intolerance (in addition to gluten) are dairy, soy, and corn.

A simple food diary makes it simpler to figure out what may be at fault here.

gabby Enthusiast

Possible culprits that get me all the time at non-gluten-free houses:

-handles of all sorts: fridge door, microwave door, tea kettle handle, cupboard handle, cutlery drawer handle, bathroom door knob, etc

-tea towels

-placemats: they can hold lots of crumbs (even if they've been shaken out), and you could easily rest a wet spoon on the place mat and pick up a few

-plates that were not washed, but just brushed lightly with a tea towel because there was only a slice of bread on it (eek, happens a lot to me)

that's all I can think of for now.

I hope you are feeling better soon though :)

WhimsiKay Apprentice
I hope you are feeling better soon though :)

I was! I mean, aside from feeling wrecked like you usually do afterward, anyway, I was, but now I'm suffering the same symptoms all over again. I'm so upset.

I ate out again, but this is a place that is usually very careful about my food. Is it possible I just got bad luck again?

The thing is, I've had cheese before (the only thing I had tonight, on crackers) and been just fine, but I had brie cheese tonight and I started the symptoms. That said, since I run a 5-hour cycle, as it were, I don't think the cheese would have done this.

Anyway, I'm ridiculously depressed over this and worried that since I don't have an official diagnosis -- from doctors, you know -- that there might be something else going on. I was completely fine for like a solid month, though! Why would it start all over again based on something I've been eating the whole time just fine?

Conversely... I understand that Minute Rice is NOT gluten free. If you use it to stuff a sock (for a heating pad), and then heat it up, and handle it, will the gluten get on your hands from that? I've been using that to soothe my tummy the past few days.

I get this sense that I'm dumb. :(

mushroom Proficient
Conversely... I understand that Minute Rice is NOT gluten free. If you use it to stuff a sock (for a heating pad), and then heat it up, and handle it, will the gluten get on your hands from that? I've been using that to soothe my tummy the past few days.

I get this sense that I'm dumb. :(

Sorry to hear about your double whammy! I don't have an official diagnosis either and have been glutened for the past week. When the symptoms lasted to long dh began asking me if it wasn't all in my head!! Darn, we get that enough from doctors. I assured him it wasn't. Finally feeling better today.

As far as the rice in the heating pad, I have a pad stuffed with wheat that I use for the same purpose and have not had any trouble with it. So I'm pretty sure it would not be that.

Hope you're feeling better soon.

WhimsiKay Apprentice
Sorry to hear about your double whammy! I don't have an official diagnosis either and have been glutened for the past week. When the symptoms lasted to long dh began asking me if it wasn't all in my head!! Darn, we get that enough from doctors. I assured him it wasn't. Finally feeling better today.

As far as the rice in the heating pad, I have a pad stuffed with wheat that I use for the same purpose and have not had any trouble with it. So I'm pretty sure it would not be that.

Hope you're feeling better soon.

Thanks very much. =)

Just out of curiosity, is it wheat or buckwheat? Buckwheat is gluten-free, so you'd be safe! Also, is the material porous and/or prone to getting moist when heated? I'm actually thinking that the "enriched" rice, when it's getting warm, is coating all over my hands through the very loose weave of the sock. Then I eat something or whatever.

So far, it seems to make the most sense. It's one of those cases where the Evil Rice Sock is supposed to be a help to a glutening, only to be causing a glutening, so I use it more to help!

And no, no, no, it is NOT in our heads. <_< (Although I'm sure he's just trying to be helpful and fix the issue -- my husband hates the fact he can't make it all go away for me, which is funny because he is at least intolerant of gluten, too!)

Do you drape the heating pad on your abdomen when you're feeling glutenous? I do, and I find it's a great comfort. I'll even sleep with it! But be careful -- last night, about 3am, I was so miserable that I didn't pay attention that it was too hot. I burned the side of my hip!


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



Celiac.com Sponsor (A8-M):



home-based-mom Contributor
I understand that Minute Rice is NOT gluten free.
Where did you hear that? I eat it all the time!

Archived

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

  • 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. - Rejoicephd posted a topic in Related Issues & Disorders
      0

      Basic metabolic panel results - more flags

    2. - xxnonamexx posted a topic in Related Issues & Disorders
      0

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

    3. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    4. - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    5. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,317
    • Most Online (within 30 mins)
      7,748

    RickT
    Newest Member
    RickT
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      Hey all  Has anyone on here experienced any of the following on their basic metabolic panel results ? This is what mine is currently flagging : - low sodium  - nearly too low potassium - nearly too low chloride - high CO2  - low anion gap  This is now after being nearly gluten-free for over a year (although I admit I make mistakes sometimes and pay dearly for it). My TtG went down to undetectable. I was so sensitive to so many foods I am now avoiding meat dairy and don’t eat a lot of cooked food in general (raw veggies, white rice, avocados and boiled eggs are my usual go-to meal that doesn’t make me sick). But my abdomen still hurts, i have a range of other symptoms too (headaches that last for days before letting up, fatigue, joint pain, bladder pain). Anyway im hoping my urologist (that’s now the latest specialist I’ve seen on account of the bladder pain and cloudy urine after eating certain foods) will help me with this since he ordered this metabolic panel. But I’m bouncing around a lot between specialists and still not sure what’s wrong. Also went back to the GI doctor and she thought maybe the celiac is just not healed or I have something else going on in the colon and I should have that looked at too. I’m still anemic too BTW. And I’m taking sooo may vitamins daily. 
    • xxnonamexx
      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang of it and more aware you realize how many places are gluten-free and contamination free practices etc. One thing I have read is how soy is like gluten. How would one know if soy affects you? I have eaten gluten free hershey reeses that say gluten free etc some other snacks say gluten free but contain soy and I dont get sick or soy yogurt no issues. Is there adifference in soys?
    • knitty kitty
      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
×
×
  • 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.