Facial pain

[CeliacMom502]

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!

[trents]

Have you had her checked for dental problems?

[CeliacMom502]

2 minutes ago, trents said:

Have you had her checked for dental problems?

Yes.  At her last checkup while this was going on.  Her teeth are in great shape and no TMJ.  Also, she has had a cat scan to rule out sinus infection as well as a brain MRI which was clear. 

[trents]

This is the first time I have heard of cheek pain in the celiac population but we are learning more about celiac disease all the time and the great variety of symptoms it produces.

By the way, welcome to the forum, CeliacMom502!

How badly damaged were the villi of the small bowel? Is she on any vitamin and mineral supplements?

[Scott Adams]

Welcome to the forum!

It is well known that celiac disease can attack the nervous system, and the category below has our research articles on this topic:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/

I also haven't heard of a case where it would be focused on the cheeks only, but it certainly isn't out of the realm of possibility.

As @trents mention, she likely has vitamin and mineral deficiencies and should be tested for them. A good multi-vitamin/mineral supplement would likely be a good idea, and you should discuss this with her doctor.

[CeliacMom502]

28 minutes ago, trents said:

This is the first time I have heard of cheek pain in the celiac population but we are learning more about celiac disease all the time and the great variety of symptoms it produces.

By the way, welcome to the forum, CeliacMom502!

How badly damaged were the villi of the small bowel? Is she on any vitamin and mineral supplements?

Thanks! I should clarify that this pain is also felt on forehead and sometimes jaw as well as top of head- bruised feeling- and think may be headache related/neurological.  When I say cheeks I mean sinus area under eyes- so pain mostly nonstop in sinus region (forehead and under eyes). The Gastro indicated early stages of celiac- there was more than normal villous blunting along with lymphocytosis in duodenal bulb (never did a marsh score). She is on Vitamin D as her levels were low as well as a multi-vitamin.  Just had other vitamins checked- all normal (B-12, B-6, B-1, folates, copper and zinc). 

[CeliacMom502]

53 minutes ago, Scott Adams said:

Welcome to the forum!

It is well known that celiac disease can attack the nervous system, and the category below has our research articles on this topic:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/

I also haven't heard of a case where it would be focused on the cheeks only, but it certainly isn't out of the realm of possibility.

As @trents mention, she likely has vitamin and mineral deficiencies and should be tested for them. A good multi-vitamin/mineral supplement would likely be a good idea, and you should discuss this with her doctor.

Thanks!  As I clarified with @trents above the pain is sinus region.  I did have her tested for Vitamins B-1, B-6, B-12, folates, copper and zinc and all came back normal. I’m just hoping these headaches and the facial pain will heal in time.

[trents]

In addition to celiac disease, she could have other food allergies or intolerances. Might be a good idea to get an ALCAT food allergy test done. I suffer from migraines/cluster headaches and most of mine seem triggered by congestion and I have ton of food allergies as well as air born. Congestion mostly manifests itself during the night when I'm sleeping and I often wake up with the onset of a migraine. I believe I have histamine intolerance as a result of my celiac disease, a very common condition within the celiac community.

[CeliacMom502]

25 minutes ago, trents said:

In addition to celiac disease, she could have other food allergies or intolerances. Might be a good idea to get an ALCAT food allergy test done. I suffer from migraines/cluster headaches and most of mine seem triggered by congestion and I have ton of food allergies as well as air born. Congestion mostly manifests itself during the night when I'm sleeping and I often wake up with the onset of a migraine. I believe I have histamine intolerance as a result of my celiac disease, a very common condition within the celiac community.

Thanks for this info!

[Celiacdaughter]

Yes my daughter age 16 has struggled with headaches and facial pain for years. Got better after going gluten free age 12 when first diagnosed with celiac for about a year but came back and fluctuates in pain level. No doctor can help us. She’s had MRI, CT scans and there are no dental issues no sinus issues and her eyesight is fine, been tested too. She is on gluten free diet and very vigilant with that past 4 years. Her blood work normal and all tests every year show the gluten free diet is working. Yet this dull throb across her eyes and forehead continues some days and weeks worse than others. And across her cheeks a tingly and bruised sensation. I’m now thinking there’s an issue with her nerves in the trigeminovascular pathway. Could be damaged or inflamed by possible gluten exposure? However she is so careful with her diet. This article I found  is very interesting: https://hscnews.usc.edu/from-the-conversation-how-does-a-piece-of-bread-cause-a-migraine

Anyway I wish I had answers for you but I just wanted to reach out here to let you know that I am a mom experiencing the same exact thing. It is so heartbreaking to see a young person suffering like this with something unexplainable and untreatable.

She is taking a bunch of vitamins and supplements that are known to help headaches and the nervous system and was also taking H1 and H2 blockers (Pepcid and Zyrtec) to help with possible histamine issues but  it’s not helping and we had her histamine levels tested and everything is normal. That is why I’m going back to the facial nerves theory and I am also now looking into thiamine (B1) deficiency.

Rest, exercise, massage and other stress management tactics are the only recourse we have to manage this chronic pain issue at this point. 

[trents]

Trigeminal nerve issues crossed my mind as well.

[knitty kitty]

Welcome to the forum, @CeliacMom502 and @Celiacdaughter!

I have experienced severe migraines with the same symptoms you've described as a child through adulthood until I started High Dose Thiamine.  Medications for migraines never helped.  

Blood tests don't accurately reflect thiamine levels.  Blood levels reflect how much thiamine has been consumed in the previous twenty-four to forty-eight hours.  Most thiamine is inside cells.  

Severity and frequency of my migraine symptoms depended on my diet: how much Thiamine I was getting in my diet and how quickly it was used up.  Dr. Lonsdale explains this in his article with Dr. Chandler Marrs linked below.  Dr. Derrick Lonsdale's work in High Dose Thiamine has been a lifesaver!

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

More interesting articles...

Nutrients to Improve Mitochondrial Function to Reduce Brain Energy Deficit and Oxidative Stress in Migraine

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8707228/

And...

Oral High-Dose Thiamine Improves the Symptoms of Chronic Cluster Headache

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5932500/

And...

Dietary intake of thiamine and riboflavin in relation to severe headache or migraine: A cross-sectional survey

https://pubmed.ncbi.nlm.nih.gov/36047917/

Hope this helps!

[Scott Adams]

I forgot to mention that migraine headaches have been linked to celiac disease, and our research summaries are here:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/

[CeliacMom502]

13 hours ago, knitty kitty said:

Welcome to the forum, @CeliacMom502 and @Celiacdaughter!

I have experienced severe migraines with the same symptoms you've described as a child through adulthood until I started High Dose Thiamine.  Medications for migraines never helped.  

Blood tests don't accurately reflect thiamine levels.  Blood levels reflect how much thiamine has been consumed in the previous twenty-four to forty-eight hours.  Most thiamine is inside cells.  

Severity and frequency of my migraine symptoms depended on my diet: how much Thiamine I was getting in my diet and how quickly it was used up.  Dr. Lonsdale explains this in his article with Dr. Chandler Marrs linked below.  Dr. Derrick Lonsdale's work in High Dose Thiamine has been a lifesaver!

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

More interesting articles...

Nutrients to Improve Mitochondrial Function to Reduce Brain Energy Deficit and Oxidative Stress in Migraine

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8707228/

And...

Oral High-Dose Thiamine Improves the Symptoms of Chronic Cluster Headache

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5932500/

And...

Dietary intake of thiamine and riboflavin in relation to severe headache or migraine: A cross-sectional survey

https://pubmed.ncbi.nlm.nih.gov/36047917/

Hope this helps!

Thank you!  This is very helpful and gives me hope!

[CeliacMom502]

18 hours ago, Celiacdaughter said:

Yes my daughter age 16 has struggled with headaches and facial pain for years. Got better after going gluten free age 12 when first diagnosed with celiac for about a year but came back and fluctuates in pain level. No doctor can help us. She’s had MRI, CT scans and there are no dental issues no sinus issues and her eyesight is fine, been tested too. She is on gluten free diet and very vigilant with that past 4 years. Her blood work normal and all tests every year show the gluten free diet is working. Yet this dull throb across her eyes and forehead continues some days and weeks worse than others. And across her cheeks a tingly and bruised sensation. I’m now thinking there’s an issue with her nerves in the trigeminovascular pathway. Could be damaged or inflamed by possible gluten exposure? However she is so careful with her diet. This article I found  is very interesting: https://hscnews.usc.edu/from-the-conversation-how-does-a-piece-of-bread-cause-a-migraine

Anyway I wish I had answers for you but I just wanted to reach out here to let you know that I am a mom experiencing the same exact thing. It is so heartbreaking to see a young person suffering like this with something unexplainable and untreatable.

She is taking a bunch of vitamins and supplements that are known to help headaches and the nervous system and was also taking H1 and H2 blockers (Pepcid and Zyrtec) to help with possible histamine issues but  it’s not helping and we had her histamine levels tested and everything is normal. That is why I’m going back to the facial nerves theory and I am also now looking into thiamine (B1) deficiency.

Rest, exercise, massage and other stress management tactics are the only recourse we have to manage this chronic pain issue at this point. 

Thank you for responding.  It’s helpful to know that there are others having the same unexplained unresolved symptoms.  I too have been wondering about trigeminal neuralgia and cluster headaches.  I hope that we both can find answers to help our daughters get rid of these issues!

[CeliacMom502]

3 hours ago, Scott Adams said:

I forgot to mention that migraine headaches have been linked to celiac disease, and our research summaries are here:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/

Thank you so much!

[OHaraCrazy]

Three kids with celiac and myself. Atherosclerosis was the diagnosis for my 19 year old celiac. She was my child that didn’t have migraines. The arteries run on the outer edges of the forehead in a vertical direction, the inflammation from being “glutened”while away in college caused the C-reactive protein to increase and high red blood cell counts. This was inflaming the artery to the brain and thickening the blood flowing through that artery.  My 15 year old developed migraines and hemiplegic migraines with and without traditional headache pain at the age of 7. I suggest a composition notebook and journaling. It helped tremendously with my middle! Feels gross to treat your child like a specimen but doctors are ignorant at best. Log physical symptom. Show the pain skill faces, ask where she feels “write exactly what she says” even if it doesn’t make sense to you. Learned that they are not aware that everyone doesn’t feel this way and they have experienced these symptoms their entire life. Ask about numbness, tingling and pins and needles. Both of mine have serious neuropathy issues and all 3 have seizures or Tourette’s. Undiagnosed celiac disease took so much from all 3 of my children and myself. I am willing to help you navigate in anyway possible. She will improve and life for you will become a new normal. I still struggle when they consume something that makes them symptomatic but now that I am diagnosed, we all were diagnosed in a 4 month period, I am able to relate and support the mental health, fatigue, and gastric challenges they experience. Makes me extremely angry that allergy testing isn’t immediately ordered when someone has serious health issues that can’t be diagnosed by typical medical testing! My children are double genetically challenged lol. Dad is full Irish and I’m Finnish! Drs should have known to question celiac disease diagnosis and especially bc my kids have 1st cousins with celiac disease diagnosis. Sending positive vibes and wishing the best for your little. 

[trents]

Yes, it is so frustrating that celiac disease is not yet on most physicians' radar! Most of them are still stuck back in the dark ages of celiac disease knowledge base and if there are not classic GI symptoms it just doesn't occur to them.

So far, the efforts to develop a celiac "pill" have met failure. Maybe it would be a better investment of resources to spend that same research money on educating physicians about celiac disease so as to catch it in the early stages before our bodies are already trashed.

[CeliacMom502]

18 hours ago, OHaraCrazy said:

Three kids with celiac and myself. Atherosclerosis was the diagnosis for my 19 year old celiac. She was my child that didn’t have migraines. The arteries run on the outer edges of the forehead in a vertical direction, the inflammation from being “glutened”while away in college caused the C-reactive protein to increase and high red blood cell counts. This was inflaming the artery to the brain and thickening the blood flowing through that artery.  My 15 year old developed migraines and hemiplegic migraines with and without traditional headache pain at the age of 7. I suggest a composition notebook and journaling. It helped tremendously with my middle! Feels gross to treat your child like a specimen but doctors are ignorant at best. Log physical symptom. Show the pain skill faces, ask where she feels “write exactly what she says” even if it doesn’t make sense to you. Learned that they are not aware that everyone doesn’t feel this way and they have experienced these symptoms their entire life. Ask about numbness, tingling and pins and needles. Both of mine have serious neuropathy issues and all 3 have seizures or Tourette’s. Undiagnosed celiac disease took so much from all 3 of my children and myself. I am willing to help you navigate in anyway possible. She will improve and life for you will become a new normal. I still struggle when they consume something that makes them symptomatic but now that I am diagnosed, we all were diagnosed in a 4 month period, I am able to relate and support the mental health, fatigue, and gastric challenges they experience. Makes me extremely angry that allergy testing isn’t immediately ordered when someone has serious health issues that can’t be diagnosed by typical medical testing! My children are double genetically challenged lol. Dad is full Irish and I’m Finnish! Drs should have known to question celiac disease diagnosis and especially bc my kids have 1st cousins with celiac disease diagnosis. Sending positive vibes and wishing the best for your little. 

Thank you so much for reaching out! I am so sorry you and your children have all suffered. I feel that part of my daughter’s childhood has been robbed 😞. 3 years ago she was misdiagnosed in my opinion as having Mononucleosis- fatigue and headaches for several months- it was celiac.  It wasn’t until the past few months that a neurologist was smart enough to test her for celiac.  Her pediatrician never thought to-doctors in general are definitely not testing for celiac especially when the main symptoms are not gastro related.  The thought that this could have been diagnosed years earlier if the medical profession were properly trained on celiac is most definitely infuriating to say the least. I have thought about journaling and will try to start that- it’s just so overwhelming at times.  I’ll take you up on the navigating 😊. 

[Celiacdaughter]

I am so sorry to hear about how much all of your children have suffered with this disease. It’s hard enough telling them they can’t have the birthday cake or the pizza at the birthday party. But even worse is seeing how they don’t feel well everyday with some kind of low grade unexplainable malaise and pain that you want to fix but seems untreatable. You are not alone. This disease most certainly takes a toll on all ages but I think there is more research and information needed out there  to help children and to inform pediatricians. I had to insist that my daughter get tested for celiac. Pediatrician did not think it was necessary b/c because I tested negative, my kids wouldn’t have it. Well guess what? My daughter was off the chart in her numbers and it explained why she was always feeling so tired with headaches. Doc was almost dumbfounded. As soon as we started the gluten-free diet my daughter started to feel better but now she is so sensitive to any gluten exposure we have to be even more careful than ever and her headaches have come back. I am now thinking she may have some kind of vitamin deficiency from years of malabsorption and not getting proper nutrients for most of her childhood. So again I have to insist that we go through these tests as The pediatricians we have gone to never recommend any of this.  it is very frustrating and requires caregivers to be extremely vigilant and you have to advocate for your kids and do your own research to find a solution and help. I am very grateful for this forum.

[CeliacMom502]

Following is about celiac neuropathy mentioning pain in face: 
https://www.cureceliacdisease.org/wp-content/uploads/0410CeliacCtr_News.pdf

[OHaraCrazy]

On 10/1/2022 at 4:08 AM, CeliacMom502 said:

Thank you so much for reaching out! I am so sorry you and your children have all suffered. I feel that part of my daughter’s childhood has been robbed 😞. 3 years ago she was misdiagnosed in my opinion as having Mononucleosis- fatigue and headaches for several months- it was celiac.  It wasn’t until the past few months that a neurologist was smart enough to test her for celiac.  Her pediatrician never thought to-doctors in general are definitely not testing for celiac especially when the main symptoms are not gastro related.  The thought that this could have been diagnosed years earlier if the medical profession were properly trained on celiac is most definitely infuriating to say the least. I have thought about journaling and will try to start that- it’s just so overwhelming at times.  I’ll take you up on the navigating 😊. 

Goodness! My oldest just came home from college and was diagnosed with mono by the ent. Pediatrician didn’t even test for mono but she had “shoddy nodes” actual medical term for all of her lymph nodes being enlarged and rubbery. She should have been diagnosed as a toddler. We legitimately have ptsd from doctors that are limited in their knowledge of anything outside the basic scope of ear infections and strep. Having to educate myself and advocate for my children has led to so much unnecessary stress and anxiety. Check your shower products for wheat protein. This was one of the things I missed in the beginning and only my oldest and myself have significant skin reactions. Fixed the red burning skin, rashes and swelling caused by showers. It is challenging to navigate and someone in our home is glutened weekly not matter how much attention to detail we have. She absolutely needs a mineral and vitamin blood panel. Vitamin D was 19 for my 15 year old and functional levels are 100. Add one supplement at a time, our new pediatrician chose one at a time and then tested again monthly so we could alter dosage accordingly. Vitamin D at 2,000 mg a day allowed her to get out of bed and resolved joint pain, energy, muscle spasms and weakness, as well as calmed her neurological symptoms. B12 and B6 are often extremely low. The gummy vitamins are easier for the littles and my middle took them easily. I’m sorry that you are having this experience with medical professionals and want to acknowledge your feelings. Keep advocating and remember that you are not alone in this fight for your child’s health and well being. 💝