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

Trace Amounts Adding Up Over Time?


emsimms

Recommended Posts

emsimms Apprentice

Has anyone experienced tiny amounts of gluten adding up over time ending with a sudden reaction "out of nowhere"?

My son (gluten and many other intolerances) has had an intense reaction after being symptom-free for 6 months. Since there is no obvious source of gluten, I am wondering if he could have ingested gluten in tiny amounts over  a long period of time, for example from "gluten-free" foods (gluten-free Rice Krispies etc.) or from sticking his fingers into his mouth at school.

Is it possible to have a full-blown reaction once the accumulated amount reaches a certain level?

 

Thanks for any input!


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



Celiac.com Sponsor (A8-M):



CajunChic Explorer

I've always wondered if this occurred. I always tell myself that's what it is when I can't find a source. I'm following to see the replies!

nvsmom Community Regular

I was glutening myself with small amounts about a year and a half ago - a few french fries  with wheat starch on them off my son's plate every few days. I slowly felt worse and worse but I did not have a sudden intense reaction; my reaction snuck up on me.

dilettantesteph Collaborator

I believe, based on experience over the last 6 years or so, that trace amounts build up slowly to cause a slowly worsening reaction.  I don't think that there is a big tipping point to full blown symptoms.  I think that there was a larger consumption in play.  There may have been a crumb picked up somewhere, or perhaps a batch of some product with some contamination in it.  I hope that it was a one time event and symptoms will resolve.

emsimms Apprentice

Thank you, everyone, for your input!

The problem with my son is that - once he gets abdominal pain his intestines are already so backed up that it is a several-week long and painful process to get back to normal.
But true, a larger contamination is likely at play as well, and I am trying to figure out what it was.

dilettantesteph Collaborator

It's a several week long process to get over a glutening for me too.  I need to watch that I don't get impatient and limit my diet further than necessary.  I hope that you get things figured out.  It can be difficult. 

sweetsailing Apprentice

I do think that small exposures over time result in a tipping point and a larger reaction.  I find that if I eat out at resturants too often, even eating gluten free, that the more I eat out over time the worse the reaction.

 

So, if I eat out once, I might not have any reaction at all, except perhaps one extra BM that day, but still normal.  If I eat out 2 days in a row or 3 days in a row, my stools get progressively looser and more frequent and higher chance of feeling nauseated and stomach rumbling. 

 

I am very careful when I do eat out to only order food that is gluten free and try to avoid cross contamination as much as possible (i.e. nothing from a fryer that would have gluten items in the same fryer)

 

I just know that I can't eat out too often or at least need to space it out a bit to avoid getting a larger reaction. 


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



Celiac.com Sponsor (A8-M):



SoLacey Newbie

It seems to make sense to me.  I lived on a low carb diet for about 6 years to control what I thought was hypoglycemia.  When I went back to work 3 years ago, gluten started creeping back into my diet slowly.  If they ordered Jimmy John's at lunch or Pizza for a dinner meeting I felt like I had to have a little. 

 

Slowly some of the symptoms started coming back.  I couldn't figure out why my carpal tunnel was all of a sudden flaring back up when it hadn't bothered me for several years or why I was getting the DH rash again that had been gone for so long, I didn't yet know it was DH.  ...or why I was having mood swings, dry eye and vision problems and so on and on.  Suddenly the reactions got very violent and it was easy to see that eating pizza was what put me in a near coma for 24 hours. 

 

That it was cumulative would explain why the build up to more violent reactions. 

emsimms Apprentice

Thank you so much for all your helpful comments!

Shell156 Apprentice

Aww... Poor kid!

This has definitely happened to me! I was using a face cream a couple of months ago that was labeled gluten free. I usually pay really close attention to how I feel after using new products and I felt okay! So I kept using it. After 2-3 weeks I started feeling really crampy and fatigued. I finally wrote the company and they said they used "gluten-removed " products, which I do react to! I stopped using the cream and voila , I was all better :). The company however, refused to give me my money back :(

  • 3 weeks later...
lmj623 Apprentice

I was just wondering the same thing. Over the last month I have started feeling crappier. My neck and back pain has flared up like crazy plus pins and needles, feel nauseous, super tired and headaches but couldn't figure out why..turns out it was the taco seasoning i bought 2 months ago.  I ate it at least once a week for those 2 months and it gradually snuck up on me. It has now been 10+ days and i haven't drank much at all (not like me) last week I couldn't finish more than one glass of wine and lately I still wake up feeling hungover without drinking!

 

HELP!

 

Does anyone else have slow reactions like this? I was surprised I didn't have at least a D episode after eating the tacos each time. 

 

background info: gluten-free since July 2013, last time i ate a bite of bread was 9/2013 diagnosed celiac 1/9/2013

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. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,406
    • Most Online (within 30 mins)
      7,748

    Kbradway
    Newest Member
    Kbradway
    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

    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.