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

Long Reaction To Being Glutened Or More Hidden Gluten?


RobynJ

Recommended Posts

RobynJ Apprentice

My cousin made gluten free cupcakes for him on Halloween. The next day he was sick. I think residue flour in her sugar or in her flour sifter is what made him sick. Last Sunday he seemed aggressive and a little sick. Monday he told me his tummy hurt and seemed really off. He still isn't himself and his bloated tummy is back. That was Saturday and he is still having watery stools.

So my question- how long does a reaction from being glutened usually last? How can I tell if he is getting sick from something else or if this is one long reaction? Is there anything I can do to help ease the symptoms (beyond making sure he gets enough water and no more gluten)? I have been going through his food and I don't see anything that should be causing a problem- unless it is CC or he is getting something I don't know about...

:unsure: Sorry if this is a dumb or unanswerable question we are still pretty new at this...


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



Celiac.com Sponsor (A8-M):



gfp Enthusiast
My cousin made gluten free cupcakes for him on Halloween. The next day he was sick. I think residue flour in her sugar or in her flour sifter is what made him sick. Last Sunday he seemed aggressive and a little sick. Monday he told me his tummy hurt and seemed really off. He still isn't himself and his bloated tummy is back. That was Saturday and he is still having watery stools.

So my question- how long does a reaction from being glutened usually last? How can I tell if he is getting sick from something else or if this is one long reaction? Is there anything I can do to help ease the symptoms (beyond making sure he gets enough water and no more gluten)? I have been going through his food and I don't see anything that should be causing a problem- unless it is CC or he is getting something I don't know about...

:unsure: Sorry if this is a dumb or unanswerable question we are still pretty new at this...

It certainly isn't dumb but it is unanswerable.

As an adult, or more precisely as someone who is extremely analytical I cannot ever say for sure.

How long is for me about 4-6 weeks but with decreasing severity and frequency SO LONG AS I DON'T MESS UP IN THE MEANTIME.

The only way I can tell myself is by being 100% gluten-free which means NO (and I mean NO) possible foods which may have CC or hidden gluten. (including CODEX gluten)

4-6 weeks seems an age but I have at times been able to be 100% guaranteed gluten-free by not having ANY gluten in my home and not eating anything outside my home. I have under these circumstances found that the last possible gluten (excepting airborne or hands) and still had mild symptoms infrequently after weeks.

Honestly, if you're frustrated then I sympathise but if a child is going to school, using public transport etc. then things will happen. Like a lot of parenting you will feel it is somehow your fault... and it isn't... s**t happens!

He will also get colds and from time to time Flu ... and as parents we can do what we can but we cannot avoid every possible danger. Somewhere you have to find a life balance!

What you can do and will be the hardest part is explain this to your cousin!

The more you can do this without blame or guilt the better! (In other words your cousin might get defensive instead of listening). These are the hardest situations, even with an adult! When someone makes an effort but you still get ill. They also lead to pressure and being put in situations where you are not comfortable but find it hard to be polite and refuse when someone says 'But it is gluten free'.

Simply put: If your cousin usually bakes or uses flour then pretty much the whole kitchen is a CC zone.

The sifter and the sugar are spot on for possibilities but so are dish cloths, towels and cutlery.

RobynJ Apprentice

Okay. I just we will just have to keep an eye out and wait it out then. Thanks!

shayesmom Rookie
My cousin made gluten free cupcakes for him on Halloween. The next day he was sick. I think residue flour in her sugar or in her flour sifter is what made him sick. Last Sunday he seemed aggressive and a little sick. Monday he told me his tummy hurt and seemed really off. He still isn't himself and his bloated tummy is back. That was Saturday and he is still having watery stools.

So my question- how long does a reaction from being glutened usually last? How can I tell if he is getting sick from something else or if this is one long reaction? Is there anything I can do to help ease the symptoms (beyond making sure he gets enough water and no more gluten)? I have been going through his food and I don't see anything that should be causing a problem- unless it is CC or he is getting something I don't know about...

:unsure: Sorry if this is a dumb or unanswerable question we are still pretty new at this...

Unfortunately, it can be really difficult to find the culprit in all of this. The cupcakes could definitely be an issue. If your son went trick-or-treating, you may also want to double check his candy.

Besides that, if your son is in school, I'd talk to the teachers about thoroughly wiping down his work areas in class to make sure Halloween party items didn't contaminate his area.

Reactions differ with each individual. But generally speaking, the reaction time doesn't differ all that much in regards to the individual. You've seen reactions before. Is this "normal" for him?

My daughter is off for about 3 days after an exposure (small CC issues last about 6-8 hours). The worst is the first 24 hours. I do give her a probiotics supplement and go to a 100% no chance for accidental gluten type of diet (that means no eating out, no pre-packaged gluten-free products....just meat, veggies, fruits and things I've baked/cooked myself from scratch).

Keep digging to see if you can find the culprit (though it may be a fruitless endeavor). I hope your son feels better soon!

gfp Enthusiast
Okay. I just we will just have to keep an eye out and wait it out then. Thanks!

All that and more ... more being learn and move on!

It is so easy to beat ourselves up over this when really S**t Happens ...

At one point I obsessed over finding the offending cup-cake/CC etc. but really it's only useful as a learning experience and what you can avoid in the future.

Sometimes you will be quite certain but mostly you have multiple possibilities ... and often it might be a random event you didn't even notice... like a relative or friend sitting on the furniture with a bread crumb on their clothes...

Many of these are so unlikely they don't happen but they are also very common so once in a while a really unlikely set of events conspires and ... poop happens.

As a parent we feel a natural guilt that something happened we think we should have controlled but the truth is we can't control everything for our children, we can't even control it for ourselves.

HUGS are the best remedy ... depending on age then immodium (loperamide) can stop the poop and also help the spasms ... and purely theoretically and in my experience also help with the neurological effects such as mood.

You can search this forum for 'brain fog' and 'exorphin' if you wish to explore this side.

Loperamide hydrochloride is not recommended in infants below 24 months of age.

Open Original Shared Link

RobynJ Apprentice
Reactions differ with each individual. But generally speaking, the reaction time doesn't differ all that much in regards to the individual. You've seen reactions before. Is this "normal" for him?

My daughter is off for about 3 days after an exposure (small CC issues last about 6-8 hours). The worst is the first 24 hours. I do give her a probiotics supplement and go to a 100% no chance for accidental gluten type of diet (that means no eating out, no pre-packaged gluten-free products....just meat, veggies, fruits and things I've baked/cooked myself from scratch).

This is the first time he has gotten sick. So I don't know if it is normal or not. He still has loose stools. He is on probiotics- so maybe I will call the naturopath and see if it is okay if I up the dose or if she has something else that helps.

All that and more ... more being learn and move on!

It is so easy to beat ourselves up over this when really S**t Happens ...

At one point I obsessed over finding the offending cup-cake/CC etc. but really it's only useful as a learning experience and what you can avoid in the future.

Sometimes you will be quite certain but mostly you have multiple possibilities ... and often it might be a random event you didn't even notice... like a relative or friend sitting on the furniture with a bread crumb on their clothes...

Many of these are so unlikely they don't happen but they are also very common so once in a while a really unlikely set of events conspires and ... poop happens.

As a parent we feel a natural guilt that something happened we think we should have controlled but the truth is we can't control everything for our children, we can't even control it for ourselves.

HUGS are the best remedy ... depending on age then immodium (loperamide) can stop the poop and also help the spasms ... and purely theoretically and in my experience also help with the neurological effects such as mood.

You can search this forum for 'brain fog' and 'exorphin' if you wish to explore this side.

Loperamide hydrochloride is not recommended in infants below 24 months of age.

Open Original Shared Link

He is over 2 so I will look this up! Thanks for the advice. I do feel bad- but I guess you are right- there is no way for me to protect him from everything. Thank you again.

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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    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
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.