Am I being glutened - what to do?

[Galbin]

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.

 

 

[trents]

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]

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]

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]

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]

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

[TerriLM]

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!  

[plumbago]

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]

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]

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]

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]

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

[TerriLM]

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.