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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,607
    • Most Online (within 30 mins)
      7,748

    Noniangie
    Newest Member
    Noniangie
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
×
×
  • 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.