Mnofsinger

On 9/27/2022 at 3:22 PM, CeliacMom502 said:

Hi!  My 10 year old daughter was recently diagnosed with celiac disease.  Her symptoms were mainly non-gastrointestinal: constant headaches and facial pain.  We thought she was suffering from a chronic sinus infection at first.  Long story short, she has celiac and has been gluten free since her endoscopy-so for one month gluten-free. I see a major improvement in her mood.  She still has headaches but they are less frequent.  Her facial pain has not subsided though which is concerning to me.  She describes it as non stop pain on her face in her cheeks that hurts when she touches it and sometimes without touching it.  She describes it as a bruised feeling.  Can anyone with celiac relate?  Will this go away eventually?  It’s only been one month on the gluten-free diet and she has been ingesting gluten her whole life (10 years).  As her mom, I want her suffering to end and hope it is just a matter of time and healing. Thank you for any insight!

Hi @CeliacMom502,


As always, consult a medical professional on any advice you receive. 

I experience have experienced this exact symptoms you're referring to and will receive them, typically after being accidentally glutened. I've recently been researching this (that's how I came across this posting), because I've been trying to nail down how long I've actually had the celiac genes "activated" or if I was just born with it. Now I wasn't diagnosed until 2023 with Celiac Disease, but not all these other health issues I've had previously point to it all connecting. In 2013 I ended up with Bell's Palsy that I had facial paralysis on one side of my face, where I couldn't even get a twitch for six months, but it took almost a year for "full recovery". I have now came to the conclusion that, because of the B12 vitamin deficiency caused by celiac disease (when not following a strict gluten free diet), caused me to have prolonged recovery from this, because the nerves were healing at a much lower rate>


I'm not sure if your daughter has ever had Bell's Palsy, but ever since I have, some of my symptoms when I accidentally get glutened (including right now as I type this message 😄) include a migraine that goes across my eyes, and a shooting pain as you have described that will go across my left cheek and upper jaw, in addition to pain behind my left ear, and painful to the touch.

Now, I did immediately go on a gluten free diet, and almost all these symptoms vanished after 3-4 months, but that time frame depends upon the "damage" already done previously. 

Hope my situation helps even now this is now almost three years later from your message!

 

Those are great points and some follow up thoughts and ideas.

I think you're both stating the same thing in two different ways, but I appreciate the "accuracy" of what you're getting to.

1. Are you both stating that the "too salty of a taste" could be triggered by a histamine reaction, and the flavor is coming from the electrolytes?

If that is the case, wouldn't the individuals mouth always be salty during a "Glutening" situation, or are we saying that the person could get "use to the flavor" until introducing food or beverage and that could be enough to "stir the pot" and notice the salty flavor?

2. To push back on "#1": If that were true anyone with issues of histamine releasing foods/treatments would experience the same thing. Also, I did not experience a situation where most beverages were "too salty".


Thoughts?

On 12/9/2024 at 3:55 PM, knitty kitty said:

Gluten can cause inflammation in the digestive tract and that includes the mouth.  Also, nutritional deficiencies can cause oral inflammation.  Cobalamine B12 deficiency and Niacin B3 deficiency can result in swollen irritated tongues and mouth sores.  Salt would definitely cause further irritation.... Like pouring salt in a wound....

I appreciate the input and that would make sense to irritation/mouth sores. I'm more asking directly to the taste of the food being too salty as opposed to being irritated by salt.

There was an old thread from 2011 that I came across but has been archived and I could not reply to it. I would like to reopen this discussion but really dive into a potential connection for a early "warning sign" for undiagnosed celiac people.

Let me give some back story. I was diagnosed with Celiac disease in June of 2023. How long I had it before? I can't say for certain, because my wife and I had been on and off keto diets, which naturally I would cut out gluten containing food. However, there was an instance I went into the ER about 4 years ago for potential appendicitis, but that was ruled out as "nothing". Looking back it would be the pains in the abdomen from being "glutened". 

Prior to being diagnosed I would always say our food needed less salt because it tasted to salty. My wife would always point out, "No, it could use more". Most people around me would say it's not too salty, and I would chalk it up to having a sensitivity to salty foods. I did not make this correlation until after my bloodwork had came back to normal range after eating a gluten free diet. In the span of four months I brought my tissue transglutaminase IgA results from a 45 down to a 4. After that, I did not go out of my way to focus on was my food "too salty" or not, I just never really mentioned that the food I was eating was too salty. In fact, I would find myself adding salt to foods.

It wasn't until I had been glutened about 13 months into my gluten free diet, that the few days afterward I made a comment "This is too salty". As soon as those words left my mouth, I was like "Wait a second!", and said to my wife "what if all this time I thought the food was too salty was because of eating gluten?". Now, I know everyone's body reacts differently to to celiac disease whether someone is asymptomatic or if they have symptoms what symptoms do they have.


I'm not saying I'm right, but I would be curious to know other's experiences and ways we could help other undiagnosed people get the proper medical treatment they need, by common early warning signs.

So, on this old thread: 

 Some people explained the change was after, but I would be curious to know your experience!

1. My question(s) to the ones that experienced this after a gluten free diet, was it because you other more serious symptoms were occupying your mind while eating gluten that you never really noticed the "too salty" experience?

2. Is it possible that you had been accidentally glutened during your gluten free transition that spiked this reaction? 
     (Some context to this one: The reason I was able to get my numbers down so low in the 4 months after being diagnosed, was I went "over the top", We stopped going out to eat, we through out all our food, we threw out ALL of our cookwear/utensils/glasses/plates/cutting boards and I do mean EVERYTHING, and started with new, because I didn't want to be hindered by "hidden gluten". My wife tells me I have the tendency to go to the extremes 😄 )


Hope everyone finds this topic interesting and fun at the same time. So please, tell me your experience on this subject!