Trauma reactions

[Sara Ann Denson]

My sons and I have both been diagnosed with Celiac. My youngest son who is now 18 is the most recent to be diagnosed.  For myself and my older son, we both saw a marked decrease in anxiety when we went gluten-free.  However, my youngest son was the most chill person ever to emerge from my gene pool. He has never been overly anxious but needed to go gluten-free due to vomiting and allergic reactions which led to Celiac testing. Here's my problem. He's been off gluten nearly a year and is doing much better physically but yesterday he came unnerved. It seems he's been having what I can only guess is PTSD reactions to seeing food advertisements. At first they were mild, almost funny to him, but yesterday a cookie sale at school triggered something much more powerful. He began to shake, sweat, and feel his skin crawl in an overpowering way. It lasted for several minutes during which time he had a hard time keeping it together at school so no one would notice.  He is really concerned that this will get worse since it is suddenly much worse than at first. Does anyone else have any experience with something like this happening?  Any advise as to what we should do? Will it go away on its own?

[Fenrir]

I don't think that reaction necessarily has to do with celiac disease. I also wouldn't call it PTSD. 

I would bet there is something else going on mentally that's the cause and seeing  gluten foods just is triggering him when he's already agitated. People can have high anxiety when they are celiacs and are exposed to gluten but if he's been gluten-free then something else is probably up. 

[Ennis-TX]

I became very paranoid after finding out that gluten was what was making me sick and had me running a bucket list thinking I was dying before being diagnosed. I would get very agitated and feel the fight or flight response to the smell of fresh baked bread, pizza, cookies etc. for about a year. I just associated it with pain, vomiting, and being sick so the mental avoidance just came out when the connection was made. In his case it could be the same or something more. I got over it when I started making gluten free cookies, pizza, and breads of my own and even started a small bakery and later a catering job. If you think it is like mine perhaps having it face it in a positive light by making SAFE gluten free cookies at home.

[Sharz]

My kids were diagnosed with celiac disease 2 years ago and this is the reaction that I have in those situations. This is a hard disease to deal with for kids his age. Knowing what he’s missing out on. All of the social implications are hard for many to deal with. For some, being around it Ike that can cause PTSD symptoms. Remembering life before and the constant realization that this is life forever can be daunting for many people.  I wish I had some good advice for you. I’m so sorry your son is dealing with this. Young people deserve a carefree life. Being diagnosed with such a restrictive chronic disease at a young age is not fair.

[Fenrir]

8 minutes ago, Sharz said:

My kids were diagnosed with celiac disease 2 years ago and this is the reaction that I have in those situations. This is a hard disease to deal with for kids his age. Knowing what he’s missing out on. All of the social implications are hard for many to deal with. For some, being around it Ike that can cause PTSD symptoms. Remembering life before and the constant realization that this is life forever can be daunting for many people.  I wish I had some good advice for you. I’m so sorry your son is dealing with this. Young people deserve a carefree life. Being diagnosed with such a restrictive chronic disease at a young age is not fair.

I might expect this reaction from a young kid but this is unusual for an 18 year old. As someone with family members with PTSD from military service I'm going respectfully oppose the comparison. PTSD gets tossed around a lot these days to situations that it doesn't apply. If anything it would be an adjustment disorder:

https://www.mayoclinic.org/diseases-conditions/adjustment-disorders/symptoms-causes/syc-20355224

[Sharz]

26 minutes ago, Fenrir said:

I might expect this reaction from a young kid but this is unusual for an 18 year old. As someone with family members with PTSD from military service I'm going respectfully oppose the comparison. PTSD gets tossed around a lot these days to situations that it doesn't apply. If anything it would be an adjustment disorder:

https://www.mayoclinic.org/diseases-conditions/adjustment-disorders/symptoms-causes/syc-20355224

Well, I was actually diagnosed with PTSD by a psychiatrist due to my physical and emotional state dealing with my kids’ diagnosis. The months leading up to it were filled with terrifying moments. However, I think the OP was just trying to describe her son’s reactions. No need to be offended by the terminology she used. You have no idea what other people experience and if other experiences in their lives could snowball into this type of reaction with this diagnosis. 

[Heather Shade]

In my personal & professional experience working in the psychiatric field I would not call this PTSD. However, getting diagnosed with Celiac is effectively a death of your former life in many ways. Depression & anxiety are extremely common especially after diagnosis but sometimes even occurring for years afterwards. You are not able to do many of the things that you used to do without extreme modification. Choosing where to eat when going out can be an excruciating task, and the anxiety doesn’t end after you choose a restaurant- what do I order, who do I need to speak to, will I end up being glutened... Celiac isn’t just about taking the bun off the burger like so many uneducated people would like to think. It’s an incredibly overwhelming life changing task that never ever ends. The anxiety & depression that it can often cause are very real. A therapist can be helpful & sometimes medications may be necessary. It gets easier but it never gets “easy”. I wish you lots & lots of luck. I was diagnosed 10 years ago & it has never gotten easier for me (psychologically or physically) & I understand everything that my mind is doing to me. Your son just needs someone to hold his hand & help him understand that life will be ok (even if that includes a professional). Eventually his friends will be able to assist when you can’t.

[Fenrir]

4 minutes ago, Sharz said:

Well, I was actually diagnosed with PTSD by a psychiatrist due to my physical and emotional state dealing with my kids’ diagnosis. The months leading up to it were filled with terrifying moments. However, I think the OP was just trying to describe her son’s reactions. No need to be offended by the terminology she used. You have no idea what other people experience and if other experiences in their lives could snowball into this type of reaction with this diagnosis. 

No offense, but PTSD from celiac disease is pretty unlikely. 

https://www.mayoclinic.org/diseases-conditions/post-traumatic-stress-disorder/symptoms-causes/syc-20355967

 

Anxiety? Certainly.

Adjustment disorders? Sure, maybe. 

PTSD? Not likely. 

Might be someone has PTSD from some other event in their life and the anxiety caused by celiac disease aggrivates it but there is literally zero scientific support that PTSD could be caused by eating gluten. 

People often confuse PTSD with just anxiety. Anxiety is well connected with Celiac disease, PTSD isn't. Even anxiety isn't really proven to be caused by gluten, opposed to just the anxiety of not feeling well for long periods of time. 

I don't think any mental health provider worth his or her salt would diagnose someone with PTSD due to their experience with celiac disease. This is coming from someone who was hospitalized and very sick and anxious from malnourishment due to celiac disease. 

I'm not pretending to know what the issue is with her son and have no doubt he's possibly suffering mental distress from celiac disease but PTSD (if meant literally) due to celiac disease seems a little bit of a stretch considering the type of events people usually experience to get PTSD. 

My brother got shot at, had mortars shot at him, saw people die. My other brother had a gun pointed to his head. People have terrible car accidents or are abused physically. You have a right to your opinion but if you can get PTSD from celiac disease literally everyone in the country probably has PTSD from the death of a relative or pet or who know what. 

[Sara Ann Denson]

17 hours ago, Ennis_TX said:

I became very paranoid after finding out that gluten was what was making me sick and had me running a bucket list thinking I was dying before being diagnosed. I would get very agitated and feel the fight or flight response to the smell of fresh baked bread, pizza, cookies etc. for about a year. I just associated it with pain, vomiting, and being sick so the mental avoidance just came out when the connection was made. In his case it could be the same or something more. I got over it when I started making gluten free cookies, pizza, and breads of my own and even started a small bakery and later a catering job. If you think it is like mine perhaps having it face it in a positive light by making SAFE gluten free cookies at home.

I think it's a good idea to have him make them himself. I currently do most of the cooking and baking, but my older son has recently started cooking more for himself at college and has really developed a sense of empowerment.  I think you are onto something here. Maybe my younger son needs to feel like he has the ability to produce the things he misses so much.  Thanks so much for your empathy and ideas!

[Sara Ann Denson]

17 hours ago, Sharz said:

My kids were diagnosed with celiac disease 2 years ago and this is the reaction that I have in those situations. This is a hard disease to deal with for kids his age. Knowing what he’s missing out on. All of the social implications are hard for many to deal with. For some, being around it Ike that can cause PTSD symptoms. Remembering life before and the constant realization that this is life forever can be daunting for many people.  I wish I had some good advice for you. I’m so sorry your son is dealing with this. Young people deserve a carefree life. Being diagnosed with such a restrictive chronic disease at a young age is not fair.

Thanks so much for letting me know this is something other people are going through. It helps to know it's not unknown for Celiacs to have an autonomic nervous reaction to visual stimuli.  Did this calm down for you after awhile?  Did it get worse?  Did you need to work with a therapist or did it work itself out?

Thanks so much for your empathy!

[Sara Ann Denson]

16 hours ago, Fenrir said:

No offense, but PTSD from celiac disease is pretty unlikely. 

https://www.mayoclinic.org/diseases-conditions/post-traumatic-stress-disorder/symptoms-causes/syc-20355967

 

Anxiety? Certainly.

Adjustment disorders? Sure, maybe. 

PTSD? Not likely. 

Might be someone has PTSD from some other event in their life and the anxiety caused by celiac disease aggrivates it but there is literally zero scientific support that PTSD could be caused by eating gluten. 

People often confuse PTSD with just anxiety. Anxiety is well connected with Celiac disease, PTSD isn't. Even anxiety isn't really proven to be caused by gluten, opposed to just the anxiety of not feeling well for long periods of time. 

I don't think any mental health provider worth his or her salt would diagnose someone with PTSD due to their experience with celiac disease. This is coming from someone who was hospitalized and very sick and anxious from malnourishment due to celiac disease. 

I'm not pretending to know what the issue is with her son and have no doubt he's possibly suffering mental distress from celiac disease but PTSD (if meant literally) due to celiac disease seems a little bit of a stretch considering the type of events people usually experience to get PTSD. 

My brother got shot at, had mortars shot at him, saw people die. My other brother had a gun pointed to his head. People have terrible car accidents or are abused physically. You have a right to your opinion but if you can get PTSD from celiac disease literally everyone in the country probably has PTSD from the death of a relative or pet or who know what. 

No offense was meant. I have an eighteen year old son who had a autonomic nervous reaction verses a reaction from actual contact to food. I wanted advice on whether this would get worse or whether I needed intervention. I didn't realize accidentally using the wrong technical medical term would be an insult to all veterans. If I had a medical degree and was able to correctly use medical terminology, I probably wouldn't be on this forum asking for help.  

[Sara Ann Denson]

16 hours ago, Heather Shade said:

In my personal & professional experience working in the psychiatric field I would not call this PTSD. However, getting diagnosed with Celiac is effectively a death of your former life in many ways. Depression & anxiety are extremely common especially after diagnosis but sometimes even occurring for years afterwards. You are not able to do many of the things that you used to do without extreme modification. Choosing where to eat when going out can be an excruciating task, and the anxiety doesn’t end after you choose a restaurant- what do I order, who do I need to speak to, will I end up being glutened... Celiac isn’t just about taking the bun off the burger like so many uneducated people would like to think. It’s an incredibly overwhelming life changing task that never ever ends. The anxiety & depression that it can often cause are very real. A therapist can be helpful & sometimes medications may be necessary. It gets easier but it never gets “easy”. I wish you lots & lots of luck. I was diagnosed 10 years ago & it has never gotten easier for me (psychologically or physically) & I understand everything that my mind is doing to me. Your son just needs someone to hold his hand & help him understand that life will be ok (even if that includes a professional). Eventually his friends will be able to assist when you can’t.

He did mention that the experience of getting the violent shakes made him realize that he had bottled up a lot of emotion when he went off gluten. He also has severe reactions to soy so between the two he lives with a lot of fear of accidentally getting soy or gluten.  Sometimes when we accidentally get soy, the reaction is pretty severe and has created problems for him at school and school events.  When he went off, he just bucked up and said, "Well, this is life" and then he never talked about it.  I talked with him a little bit last night and will try to get him to open up more so that bottling it up doesn't continue to create these autonomic reactions.  Thank you so much for your advice and empathy!

[Fenrir]

13 minutes ago, Sara Ann Denson said:

No offense was meant. I have an eighteen year old son who had a autonomic nervous reaction verses a reaction from actual contact to food. I wanted advice on whether this would get worse or whether I needed intervention. I didn't realize accidentally using the wrong technical medical term would be an insult to all veterans. If I had a medical degree and was able to correctly use medical terminology, I probably wouldn't be on this forum asking for help.  

My response wasn't targeting you, you weren't claiming he was diagnosed with PTSD or anything like that. It was in response to the person who was arguing you could get PTSD from celiac disease. I took no offense to your post. Sometimes people don't know what to call things, nothing wrong with that. I have a pretty extensive knowledge of medical terms but I know not everyone does so unless someone is trying to state something factually wrong it's fine. 

[Sara Ann Denson]

17 hours ago, Sharz said:

Well, I was actually diagnosed with PTSD by a psychiatrist due to my physical and emotional state dealing with my kids’ diagnosis. The months leading up to it were filled with terrifying moments. However, I think the OP was just trying to describe her son’s reactions. No need to be offended by the terminology she used. You have no idea what other people experience and if other experiences in their lives could snowball into this type of reaction with this diagnosis. 

You are correct. I am just trying to figure out what kind of reaction he's having. We haven't had any life threatening moments but his soy and gluten issues have caused some pretty severe reactions and he lives in fear of accidentally getting soy. I definitely know that the years before my older son and I were diagnosed felt really stressful and painful. I hated going to the doctor because I felt like I was just paying someone to ridicule me. For me, the diagnosis was a relief both mentally and physically, an end to years of pain. For my older son, he was literally to a point where I felt like he was slowly fading away and the doctor didn't care. Finally a podiatrist of all people raised a red flag and said, "You've got to stop letting [the pediatrician] call this a mental disorder. His ligaments are deteriorating!" It turned out that along with Celiac he had a genetic B12 deficiency. I can definitely see where watching your kids suffer as you did would create these kinds of emotional triggers even after the diagnosis. Thank you so much for your help and empathy!

 

[cyclinglady]

What is very important is receiving follow-up care for celiac disease.  Has your son healed?  Does he get annual check-ups?  Are all his celiac antibodies tests normalized?  His emotional well-being could easily be due to active celiac disease.  

Estimates are as high as 30% of celiacs are not healing and that they are still getting trace amounts of gluten into their diet.  Please make sure he is getting follow-up care.  

https://www.beyondceliac.org/research-news/new-celiac-disease-guidelines-emphasize-follow-up-care/

If results indicate that celiac disease is active, consider the “Fasano” gluten-free diet:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

[Sara Ann Denson]

14 minutes ago, cyclinglady said:

What is very important is receiving follow-up care for celiac disease.  Has your son healed?  Does he get annual check-ups?  Are all his celiac antibodies tests normalized?  His emotional well-being could easily be due to active celiac disease.  

Estimates are as high as 30% of celiacs are not healing and that they are still getting trace amounts of gluten into their diet.  Please make sure he is getting follow-up care.  

https://www.beyondceliac.org/research-news/new-celiac-disease-guidelines-emphasize-follow-up-care/

If results indicate that celiac disease is active, consider the “Fasano” gluten-free diet:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

Yes, thanks.  He is getting follow up care with a functional medicine doctor who has agreed to act as his primary.  He seems to be getting past many of the stomach issues and has only missed 2 days of school this year compared to missing 4 weeks typically. Since he was doing so much better physically, I felt alarmed at this reaction which seemed to be emotional. He reports it is the third time he felt the reaction to advertisements but the other times it wasn't this severe. We talked last night and he said he felt like it was a wake up call that he was bottling everything up.

Added... I checked out the links you sent and appreciate how thorough they are. I don't know that we are using all of these follow up tests so I will touch base with the doctor. Since he is #3 to go gluten free in the house, we have a pretty solid habit of checking labels, but maybe we need to up our game with cross contamination. Thanks so much!

 

Edited February 12, 2020 by Sara Ann Denson
Looked over the links the commenter sent

[cyclinglady]

Make sure those specific celiac tests (TTG, DGP) are run by your functional medicine doctor.  The DGP is better than the TTG for dietary compliance depending on which celiac expert you ask. Know that some celiacs can be refractory (very rare), so an occasional follow-up with a GI can be beneficial.  

Dr. Fasano, a PED GI celiac researcher, had one teen who was not doing well.  His parents were perplexed.  He confessed (when parents left the room) that he ate pizza with his new girlfriend a few times.  He did not want to make a fuss.  He was embarrassed.  So, you never really know what is going in with teens despite having a good parent-child relationship.  I know.  I have an 18 year old.  ?

She is at university.  While she does not have celiac disease (tested twice) she has my garlic and onion intolerance which makes it difficult to eat in the dining hall.  She has finally learned to speak up and is working with the head chef.  Now she gets her meals prepared tailored to her needs.  

Know too, that in my experience, each celiac has unique needs.  What works for one, may not work well for others.  I would recommend avoiding all processed food for a while until he sees some improvement.  I finally felt well when I gave up most gluten-free junk food/grains.   Yet my celiac buddy who bakes with me and is just 18, can eat gluten-free foods that do not sit well with me at all.  She has healed too based on a repeat endoscopy.  There are really few studies about celiacs after diagnosis.  Sad, but true.  

Finally, our kid can determine if her Dad and I have had a gluten exposure before we even realize it.  We start by being grumpy (before depression and anxiety kick in).  So, celiac disease does impact mental health.  Believe it.  

Edited February 12, 2020 by cyclinglady