Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Am I being glutened - what to do?


Galbin

Recommended Posts

Galbin Newbie

I have been gluten free since 2009. Pre diagnosis my symptoms were: a gnawing pain in my stomach, stomach pain, burping, and extreme hunger like I was a bottomless pit. Since diagnosis I have always been super strict, and aside from the odd horrible glutening in a social situation have been fine. However, since COVID hit in March I have off and on had issues with a gnawing feeling in my stomach and burping. These symptoms are sometimes accompanied by increased hunger, constipation, and only rarely by intense pain. However, when I get the intense pain on top then I have for sure been glutened. I was severely glutened over the holidays because my brother was here and he got bread everywhere. Since he left at the end of December, all was fine. However, over the past few days it has kicked off again. I don't have the bad pain, but the terrible gnawing feeling complete with strong hunger and burping are here. I am getting ulcer and SIBO testing done next month, as COVID delayed it for a long time. However, in the meantime I am wondering if there is a gluten connection since it is so similar to my symptoms of being glutened.

So my question is: what should I do to try and work out if this is a gluten issue or not? I am planning to scrub the kitchen like crazy yet again, but in the meantime what would folks recommended? The only gluten we have in the house is my husband's bread, so I am wondering if that could be it, but why would that suddenly be an issue? He used to work from home three days a week and since COVID he has worked from home five days a week since March. So perhaps more crumbs are getting into the air or something? It seems odd that he has never glutened me before in nine years of living together, but I really can't think what else could cause it if I am being glutened. I truly do not know, but am wondering what others think?

1) Could tiny invisible traces of bread build up and be glutening me since there is more bread in the house than there was? 

2) Is there a guide on de-contaminating your kitchen? When I was originally diagnosed I had one from a website, but that website no longer exists and I cannot find anything similar. It went through all the steps for decontamination.

 

 


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



Celiac.com Sponsor (A8-M):



trents Grand Master

I wonder if you have developed an allergy/insensitivity/intolerance to some food or foods that do not contain gluten. This is common with celiacs because of leaky gut syndrome and the immune system dysfunction it produces. I was also going to suggest a SIBO eval but you are onto that already.

Galbin Newbie

Would a gluten free diet for 11 years not prevent food allergies or leaky gut syndrome from developing? Is SIBO common with celiac disease?

trents Grand Master

Recent research reported by the NIH seems to indicate that the mucosa of celiacs never completely heals when examined under high power microscopes. There can be healing at a certain level but not completely. Besides, the unraveling of the immune system is something that begins before diagnosis for most celiacs and going gluten free does not necessarily arrest that. Most of us who have been eating gluten free for many years can attest to that.

GFinDC Veteran

Since the hubby is around more often I wonder if there is more kissing going on.  Gluten mouth could be the culprit?

There is also the possibility of additional food intolerances as Trents suggested.  Glycoalkalids in potatoes increase permeability of the gut mucosa.  That may lead to additional food intolerances developing.

Oats are a problem for 10% or so of celiacs also.

BuddhaBar Collaborator

Is it possible your brother used your butter without you knowing it? 

TerriLM Newbie

Just found out recently that the brands Listerine and Sensodyne may not be gluten free.  They are made gluten-free but cannot guarantee they are gluten-free after they leave their plant.  Also, if you wear a mouth guard, check with your dentist to see if it's gluten-free.  Mine wasn't.  gluten-free for 16 years and just found this out.  Heavy sigh!  


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



Celiac.com Sponsor (A8-M):



plumbago Experienced
Just now, TerriLM said:

Just found out recently that the brands Listerine and Sensodyne may not be gluten free.  They are made gluten-free but cannot guarantee they are gluten-free after they leave their plant.  Also, if you wear a mouth guard, check with your dentist to see if it's gluten-free.  Mine wasn't.  gluten-free for 16 years and just found this out.  Heavy sigh!  

I would love more specifics and details on all of this!

Galbin Newbie
On 1/12/2021 at 1:40 PM, GFinDC said:

Oats are a problem for 10% or so of celiacs also.

I wonder about this, so have cut out the oatcakes to see if that helps.

 

23 hours ago, BuddhaBar said:

Is it possible your brother used your butter without you knowing it? 

Yep. I suspect that, so I dumped the butter and scrubbed the butter dish to within an inch of its life.

 

58 minutes ago, plumbago said:

I would love more specifics and details on all of this!

Wow, I never thought about my mouthwash. Deeeepressing.

trents Grand Master
1 hour ago, TerriLM said:

Just found out recently that the brands Listerine and Sensodyne may not be gluten free.  They are made gluten-free but cannot guarantee they are gluten-free after they leave their plant.  Also, if you wear a mouth guard, check with your dentist to see if it's gluten-free.  Mine wasn't.  gluten-free for 16 years and just found this out.  Heavy sigh!  

How can this be? Do you mean they are gluten-free before the liquid and the paste are put in the bottles and tubes that we see in the store? So you're saying they may experience cross contamination during the filling process or that the containers may be cross contaminated? Please elaborate on this and please supply sources for your claim.

TerriLM Newbie
23 hours ago, plumbago said:

I would love more specifics and details on all of this!

We called Listerine and Sensodyne...both stated that their products are gluten-free when they make them but cannot guarantee that once they leave their facility, they remain gluten-free.  I have to assume that the container has some form of gluten.  Once I stopped using those products, the inflammation in my mouth stopped.  My  mouth guard may have had gluten as well, after 3 years, it was no longer smooth and pliable.  Took to my dentist who examined it closely and said they had had one problem with another mouth guard and had to research gluten-free mouth guards.  As Scott Adams has stated, read every label and ask questions.  

trents Grand Master

I wonder if you are reacting to something else in the mouthwash and toothpaste besides gluten.

TerriLM Newbie
43 minutes ago, trents said:

I wonder if you are reacting to something else in the mouthwash and toothpaste besides gluten.

It's always possible.  Haven't had any reaction to these before, but know how things change.  Stopped using those products and haven't had any problem since.  

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,688
    • Most Online (within 30 mins)
      7,748

    Princess.dfc
    Newest Member
    Princess.dfc
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Yes, some people with Celiac do react to quinoa.  I know i do.  Apparently, two different "breeds" of quinoa can stimulate the immune system. Read here... Variable activation of immune response by quinoa (Chenopodium quinoa Willd.) prolamins in celiac disease https://pubmed.ncbi.nlm.nih.gov/22760575/#:~:text=Cultivars Ayacuchana and Pasankalla stimulated,for patients with celiac disease. And some of us react to corn (maize) as well. Maize prolamins could induce a gluten-like cellular immune response in some celiac disease patients https://pubmed.ncbi.nlm.nih.gov/24152750/   P.S. @Brook G have you thought about getting a genetic test done for known Celiac genes?  
    • Brook G
      People who are Celiac don't have a gluten response to Quinoa, but some people who are gluten intolerant do.  I react to quinoa just like I do to gluten.  Freddies/Kroger came out with their own gluten-free Bread and I didn't think to read the ingredients.  I couldn't figure out where I would have gotten gluten in my diet until I read the ingredients in their bread... QUINOA
    • trents
      Thanks for the additional information. I was thinking of asking you if your daughter was taking methylated vitamins since she has the MTHFR gene but you beat me to it. To answer the question you posed in your original post, as I explained, celiac disease does not damage the colon but the lining of the small bowel. If the damage is pronounced enough and the doc doing it is experienced, yes, the damage done to the lining of the small bowel can be spotted with the naked eye.
    • cameo674
      I could not locate the correct Gary Brecka video where he explains the methylation process and specifically states things about how people with the MTRR homozygous gene mutation are known to suffer from heartburn due to a weakened valve/sphincter where the esophagus and the stomach connect.  My brother had the youtube video sent to him from 10x health which is probably why I cannot locate it.     I will have read up on mast cell activation.  I do not know anything about it.  Tums is my preferred gerd treatment.  I always figured a little extra calcium could not hurt me.  
    • cameo674
      Trents: Due to a genetic mutation, my daughter has inherited from both parents she cannot process the Folic Acid provided in the fortified American grains.   An MD told her to avoid eating fortified grains.   My daughter makes the assumption that unless she makes the food item, that the baker used a fortified grain so she has been limiting her gluten intake since 2020.   Her Psychiatrist was who tested her for MTHFR gene issue because she suffers from depression and severe anxiety. The Psychatrist also instructed my daughter to supplement with a methylated version of folate once she knew my daughter was homozygous, because the methylated version bypasses the mutated gene step so her body can absorb it.  Low folate absorption impacts serotonin and dopamine production.  My husband and I also both have two other homozygous gene mutations that interfere with vitamin absorption: MTRR and VDR taq.  The first interferes with B-12 absorption which requires us to take a methylated B-12 vitamin and the second with Vitamin D absorption so we have to take higher doses to stay within normal levels.   My brother, who has the exact same gene mutations, went through 10x health genetic testing for vitamin supplements (paid by his employer) and received a huge report saying the same things about which types of supplements had to be taken.  Gary Brecka does videos on how these gene mutations impact the vitamin absorption pathways.       If my brother had not gotten his testing through work, he would never would have started his supplement journey.  His testing is what triggered my getting functional health testing that tested similar biomarkers to his.  Again the celiac testing was an add-on test that I did off the cuff.  
×
×
  • Create New...