Let's talk Gluten Free Depression...

[Mermaid's Mom]

We are exactly one month into being gluten-free and I can see that my daughter is struggling a bit.  It could be a NUMBER of things but I have read about some emotional fallout of being gluten-free and wonder if that is what is going on.  For the record...we have been through a ROUGH 2.5 years.  She has been to so many Drs and specialists.  She has done so many therapies and tried so many things.  She has missed school functions, she has been in severe pain, she has struggled with mobility, she has been unable to swallow and had extensive therapy.  She has had anxiety about test procedures.  She has been too tired to have fun.  I could go on and on.  But through even the worst of it she has been a poster child for positivity.  She has been diagnosed with a long list of things and whenever people feel sorry for her she assures them that she knows nothing different.

Lately she has more energy and seems "happier" but doesn't want to go to school and has sort of unplugged.  We are allowing her this time to heal.  Because of all the previous health issues she wasn't exactly a model student and we don't care as our goal is to get her healthy and keep her happy.  She is super bright and will catch up when she is able.  But...oddly she is now really uninterested in even trying.  When she is questioned she gets very emotional. Literally has a physical reaction of sobbing, hyperventilating and wringing her hands.  She VERY much has a "WHY ME" attitude and wishes that someone else had her issues and she was "normal".  She says there is too much to cope with right now and seems overwhelmed with just getting out the door.  But she is lovely and pleasant and happy when allowed to stay home.  This week she was only at school for 1/2 day on Monday.   Which is REALLY low for her.  She is typically there 50% of the time of other kids.  **eta:  Correction she was also there all day Thursday (yesterday) but the teacher emailed that she was too tired to do any work and read and/or doodled most classes.   

What we are seeing could EASILY be just her breaking point and the mourning associated with such a drastic change in her life (and being 13!!) but I do feel like there is a biochemical component to this and wonder if anyone is willing to share if they had a similar experience.  Thanks!  

[Jmg]

There is such a thing as gluten withdrawal and in any case the first few months gluten free are often a bit of a rollercoaster with uneven healing, setbacks, reglutenings etc. So some turbulence could be expected. 

That said, It's of course impossible from outside to know how much of this is mediated by celiac / gluten intolerance and how much by other factors. Your daughter's reticence to resume schooling could be as much to do with feeling distanced from her classmates by the many absences for instance, plus, well she's 13 - all the usual teenage stuff will still happen regardless of gluten's absence! 

It's also important to remember that having an issue with gluten doesn't make you immune to all the other ailments that can affect someone. I found out that gluten was a big part of my suffering from depression and going gluten free did have a massive positive affect in that regard but it didn't make me immune from depression (sadly!) the physical trigger may have gone, but there are other triggers. Depression without gluten aggravating things is easier to deal with, but it's still depression and it's not easy. 

I would suggest putting more structure into her life, the more inactive I am the more prone to depression. Get some sort of timetable together for more school so she knows it's on the horizon and when she's not there keep her occupied and active. Be positive and at some point you'll need to push her gently into resuming normal life. A good counsellor would be a big help too, so she can make sense of what's happened to her and learn some coping strategies. 

Best of luck to you both

 

[Mermaid's Mom]

44 minutes ago, Jmg said:

There is such a thing as gluten withdrawal and in any case the first few months gluten free are often a bit of a rollercoaster with uneven healing, setbacks, reglutenings etc. So some turbulence could be expected. 

That said, It's of course impossible from outside to know how much of this is mediated by celiac / gluten intolerance and how much by other factors. Your daughter's reticence to resume schooling could be as much to do with feeling distanced from her classmates by the many absences for instance, plus, well she's 13 - all the usual teenage stuff will still happen regardless of gluten's absence! 

It's also important to remember that having an issue with gluten doesn't make you immune to all the other ailments that can affect someone. I found out that gluten was a big part of my suffering from depression and going gluten free did have a massive positive affect in that regard but it didn't make me immune from depression (sadly!) the physical trigger may have gone, but there are other triggers. Depression without gluten aggravating things is easier to deal with, but it's still depression and it's not easy. 

I would suggest putting more structure into her life, the more inactive I am the more prone to depression. Get some sort of timetable together for more school so she knows it's on the horizon and when she's not there keep her occupied and active. Be positive and at some point you'll need to push her gently into resuming normal life. A good counsellor would be a big help too, so she can make sense of what's happened to her and learn some coping strategies. 

Best of luck to you both

 

I think she is dealing with withdrawal.  She has headaches and shakes.  Her day is very structured actually.  She is just chronically fatigued for the past 12 months so the school adjusted her timeline to allow her to wake rested (severe insomnia) and allow time for Occupational therapy.  She has lots of friends and playdates but she seems to hit the wall in terms of coping skills.   In the past 8 months she was been given glasses, hearing aids, now a new diets and she takes everything on the chin.  I think she is mostly still positive...like I said it's been months since we have seen her laugh and play with her brother this much.  It is evident that the chronic pain affected her mood.  But this is the first we are seeing her MAD about having to try one more thing.

She does have a reg Psychologist that we see when needed and we have an appointment in the near future.   And even though she isn't always in school we are working on the same projects etc at home.  Thanks!

[ravenwoodglass]

She is at a hard age to be different and she has a lot of stuff that has happened in a relatively short time. Now for the last month she has had another big differnce, a celiac diagnosis. She may have a bit of withdrawl but she also may be having to deal with less than sympathetic peers.  If she eats in the lunch room kids could be messing with her there or in the classroom when the teacher isn't watching.  She could also be fearful of CC and worried about gluten being on stuff that she has to use or touch.  If you can perhaps speed up the appointment with her psychologist that might be a good thing.  With so much having happened she might not want to worry you with her concerns and may be more open about her fears and anger with the diagnosis with her psychologist.

[Mermaid's Mom]

3 minutes ago, ravenwoodglass said:

She is at a hard age to be different and she has a lot of stuff that has happened in a relatively short time. Now for the last month she has had another big differnce, a celiac diagnosis. She may have a bit of withdrawl but she also may be having to deal with less than sympathetic peers.  If she eats in the lunch room kids could be messing with her there or in the classroom when the teacher isn't watching.  She could also be fearful of CC and worried about gluten being on stuff that she has to use or touch.  If you can perhaps speed up the appointment with her psychologist that might be a good thing.  With so much having happened she might not want to worry you with her concerns and may be more open about her fears and anger with the diagnosis with her psychologist.

She is scheduled to go on Monday.  I'm not overly concerned - as I can see WHY she is probably struggling.  She is a great kid with an amazing support system so I know she will figure it out and feel better everyday.  I also booked her an appointment with a Nutritionist so that can work with her food preferences to create some fun yummy meals that I am not thinking about. 

Oddly enough I think for the first time in a long time she is actually feeling GOOD enough to realize how s$#&ty she actually feels.  I know that sounds odd...but I think prior to this she was just on so much chronic pain and fatigue that she was not even processing how depressing it was to feel that way. 

[ravenwoodglass]

4 minutes ago, Mermaid's Mom said:

 

Oddly enough I think for the first time in a long time she is actually feeling GOOD enough to realize how s$#&ty she actually feels.  I know that sounds odd...but I think prior to this she was just on so much chronic pain and fatigue that she was not even processing how depressing it was to feel that way. 

That doesn't sound odd at all.  Thankfully she was diagnosed young and hopefully will heal and be feeing much better soon.

[Airchee]

 I am 44 and was diagnosed four months ago. I have been gluten-free since then as much as possible. Soon after my diagnosis I was paralyzed by anxiety to the point where I couldn't eat and had to have a feeding tube placed.  Severe anxiety and depression came on very quickly. I had a very hard time leaving the house or being around anyone. I was extremely emotionally fragile. Celiac is such a hard diagnosis. We feel alienated from the rest of the world. We have to eat three times a day to stay alive and suddenly we realize that we are surrounded by food that could poison us. We are different than everyone else and no longer able to be spontaneous. My anxiety and depression has slowly eased away as gluten free becomes my normal. I believe that I had a gluten withdrawal going on as well as the huge life change. For me it started getting much better right at three months gluten-free. Everyone is different but just hang in there. It takes a long time to heal but it does happen. I'm still healing. Love, hugs and prayers for you and your daughter!  Just give her a giant hug and tell her everything is going to be OK. And by the way, hug yourself too, everything is going to be ok. 

[knitty kitty]

Mermaid's Mom, 

You're being a great mother! You're doing all the right things.  You didn't give up getting a proper diagnosis for your daughter.  And you're educating yourself and your daughter for the future.  

Something that may be overlooked are the B vitamins.  Wheat products are enriched with B vitamins.  Once gluten is removed from the diet, so is that source of B vitamins.  Supplementation might be warranted, at least in the beginning, until the gut heals enough to be able to better absorb nutrients from foods.  

The B vitamins all work together and are water soluble, which means the body doesn't store them and needs more everyday.  A deficiency of riboflavin, niacin, or folate can cause depression.  I had a deficiency of niacin which caused depression and problems thinking (pellagra).

I believe you mentioned your daughter was deficient in B 12.  Has she been tested for other B vitamin deficiencies?  Some are hard to test for because they don't circulate in the bloodstream, they stay in the cells of the body.  

Oh, don't forget vitamin D!  Lack of Vitamin D can cause major depression, too.  Vitamin D is a fat soluble vitamin and sometimes Celiacs don't absorbed fats very well.  Vitamin A is another fat soluble vitamin.  It is vital to eye health.  You said your daughter recently got glasses.  I'm legally blind due to being undiagnosed for most of my life.  If only someone had questioned why I needed a stronger prescription every year....

 Celiac Disease is a malabsorption disease.  Malabsorption leads to vitamin deficiencies. Vitamin deficiencies can lead to depression, anxiety, and behavior changes. Doctors today have had little experience with vitamin deficiency symptoms and so they are overlooked.  

Please check with your doctor and nutritionist for the possibility.  

I hope this helps.  

Best of luck to you and your daughter!

 

[Mermaid's Mom]

12 hours ago, knitty kitty said:

Mermaid's Mom, 

You're being a great mother! You're doing all the right things.  You didn't give up getting a proper diagnosis for your daughter.  And you're educating yourself and your daughter for the future.  

Something that may be overlooked are the B vitamins.  Wheat products are enriched with B vitamins.  Once gluten is removed from the diet, so is that source of B vitamins.  Supplementation might be warranted, at least in the beginning, until the gut heals enough to be able to better absorb nutrients from foods.  

The B vitamins all work together and are water soluble, which means the body doesn't store them and needs more everyday.  A deficiency of riboflavin, niacin, or folate can cause depression.  I had a deficiency of niacin which caused depression and problems thinking (pellagra).

I believe you mentioned your daughter was deficient in B 12.  Has she been tested for other B vitamin deficiencies?  Some are hard to test for because they don't circulate in the bloodstream, they stay in the cells of the body.  

Oh, don't forget vitamin D!  Lack of Vitamin D can cause major depression, too.  Vitamin D is a fat soluble vitamin and sometimes Celiacs don't absorbed fats very well.  Vitamin A is another fat soluble vitamin.  It is vital to eye health.  You said your daughter recently got glasses.  I'm legally blind due to being undiagnosed for most of my life.  If only someone had questioned why I needed a stronger prescription every year....

 Celiac Disease is a malabsorption disease.  Malabsorption leads to vitamin deficiencies. Vitamin deficiencies can lead to depression, anxiety, and behavior changes. Doctors today have had little experience with vitamin deficiency symptoms and so they are overlooked.  

Please check with your doctor and nutritionist for the possibility.  

I hope this helps.  

Best of luck to you and your daughter!

 

She is on a B12 injection and we are supplementing her at home with: 

Magnesium citrate (seems to have cured her constipation - knock on wood!), B12 with a B6 "boost", Vitamin D3, Vitamin C, A probiotic with 12 strains and 30 billion CFU and an Omega 3.   Should I add anything else? 

And thank you for your kind words!!!

[knitty kitty]

Mermaid's Mom, 

I'm glad to help.  I take Stress B-Complex vitamins which contain 50 mg of most of the B vitamins, and 400mcg of folate.  The brand I use is Bluebonnet Stress B-Complex, but there are other brands out there, just make sure you get one that's gluten free and the ratio is similar (50 mgs of most B's  to 400mcg folate) and without added herbal components.

Vitamin A supplements for the eyes and the intestinal tract.  Vitamin D 3 supplements.  My doctor prescribed vitamin D 2, which is synthetic and not as bioavailable as D 3.  I prefer the D 3. I noticed more and faster improvement with D3.

Zinc! A deficiency in zinc will cause one to loose one's sense of taste and smell!  I lost all sense of taste and smell when I was most ill.  It was an extremely weird experience.  When I read about your daughter's food issues I immediately wondered if zinc deficiency might explain it.  Zinc and magnesium work together and should both be supplemented together.

I'm going to post another article in the Research section so this post doesn't go astray. The article is about how wheat affects our bodies and our minds.  I hope you'll read it. I found it fascinating.

Best wishes 

Knitty Kitty

 

 

 

 

 

 

 

[Mermaid's Mom]

14 minutes ago, knitty kitty said:

Mermaid's Mom, 

I'm glad to help.  I take Stress B-Complex vitamins which contain 50 mg of most of the B vitamins, and 400mcg of folate.  The brand I use is Bluebonnet Stress B-Complex, but there are other brands out there, just make sure you get one that's gluten free and the ratio is similar (50 mgs of most B's  to 400mcg folate) and without added herbal components.

Vitamin A supplements for the eyes and the intestinal tract.  Vitamin D 3 supplements.  My doctor prescribed vitamin D 2, which is synthetic and not as bioavailable as D 3.  I prefer the D 3. I noticed more and faster improvement with D3.

Zinc! A deficiency in zinc will cause one to loose one's sense of taste and smell!  I lost all sense of taste and smell when I was most ill.  It was an extremely weird experience.  When I read about your daughter's food issues I immediately wondered if zinc deficiency might explain it.  Zinc and magnesium work together and should both be supplemented together.

I'm going to post another article in the Research section so this post doesn't go astray. The article is about how wheat affects our bodies and our minds.  I hope you'll read it. I found it fascinating.

Best wishes 

Knitty Kitty

 

 

 

 

 

 

 

Thank you!  Ironically she has the taste and smell of  a professional food taster!  I have a story I tell people about the time I used a darker Brown sugar in her fave chocolate chip cookie recipe.  She ate one and immediately asked if I had done anything different to the recipe.  I admitted there was a change but that I bet she could figure it out without me telling her.  Of course I didn't actually believe she would be able to but I was prepared to give her a few good hints.  But she immediately said..."Is it molasses??"  I was shocked!  So she has the taste and smell of a blood hound! LOL!  Can you PM me the article?  Not sure if I have seen the research section and I would like to read it!  Thanks!!

[knitty kitty]

It's under the topic heading "Celiac Disease-Related Disorders and Research". 

I apologize for not making that more clear.

Here's the link, but let's discuss it under the other topic.

Open Original Shared Link

Glad to hear your daughter has such astute taste buds! 

 

[Karen B.]

Mermaid's Mom, something about going gluten free really sharpened my nose and taste buds.  My co-workers teased me about being able to walk into the office break room and comment that someone had a tuna sandwich on white bread when it had been a couple of hours.  OTOH, people's colognes almost gag me sometimes and I can taste them in the air. If she experiences something like that, I've found a good strong peppermint gum is a good masking agent so you don't notice it so much (I use xylitol gum).

[Gemini]

12 minutes ago, Karen B. said:

Mermaid's Mom, something about going gluten free really sharpened my nose and taste buds.  My co-workers teased me about being able to walk into the office break room and comment that someone had a tuna sandwich on white bread when it had been a couple of hours.  OTOH, people's colognes almost gag me sometimes and I can taste them in the air. If she experiences something like that, I've found a good strong peppermint gum is a good masking agent so you don't notice it so much (I use xylitol gum).

I have the same "problem", if you want to call it that.  I really believe that once you change your diet and eat clean, your body responds to it in a way that many people never experience because they eat such crappy diets.  I think all the food additives and garbage they use in processed foods affects taste and smell much in the way you can have lesser taste and smell as you age.  I am known as the canary at work because I can smell things down to ppm's.   

Mermaid's Mom.......I think what happens with what people refer to as "withdrawal" is the change in the diet and how your body responds. Not to mention that by the time many are diagnosed, they are not absorbing well and that plays havoc with blood sugar levels......very important with respect to mood changes.  I hope they do not press her to take anti-depressants.  All of the things you have listed as doing are excellent and will work well but slowly as time goes by.  By the end of the first year, she should be much, much better. She is young, after all, and will heal probably faster than we older folks did.  Sounds like she is just going through all those stages of grief right now....which is normal. With time, she will adjust and realize that Celiac is not as difficult as many think. Finding good food that she likes is a great idea so the nutritionist should be helpful with that.  Hang in there because it does become easier as time goes by.

[Mermaid's Mom]

2 hours ago, Gemini said:

I have the same "problem", if you want to call it that.  I really believe that once you change your diet and eat clean, your body responds to it in a way that many people never experience because they eat such crappy diets.  I think all the food additives and garbage they use in processed foods affects taste and smell much in the way you can have lesser taste and smell as you age.  I am known as the canary at work because I can smell things down to ppm's.   

Mermaid's Mom.......I think what happens with what people refer to as "withdrawal" is the change in the diet and how your body responds. Not to mention that by the time many are diagnosed, they are not absorbing well and that plays havoc with blood sugar levels......very important with respect to mood changes.  I hope they do not press her to take anti-depressants.  All of the things you have listed as doing are excellent and will work well but slowly as time goes by.  By the end of the first year, she should be much, much better. She is young, after all, and will heal probably faster than we older folks did.  Sounds like she is just going through all those stages of grief right now....which is normal. With time, she will adjust and realize that Celiac is not as difficult as many think. Finding good food that she likes is a great idea so the nutritionist should be helpful with that.  Hang in there because it does become easier as time goes by.

We would not even entertain the idea of ant-depressants.  We didn't even medicate her for the ADHD diagnosis because my gut knew it was incorrect.   I hope I am not painting it as more dire than it is.  In reality it is just so out of character for her.  This week there are new rules...she has to be up and out of bed by 9:30am so that she doesn't stay up all night.  She has an hour to lounge and eat breakfast/watch TV  then she has to get dressed etc and no more TV for the day.  Then she has to sort out how she wants to spend her day.  Today she decided she wants to do some gardening so she is out there in the fresh air pulling weeds.  I am going to give her back some control and just allow her to have some time to sort herself out. 

She has been a TROOPER the past 3 years and she has earned this mental health break! LOL!

[Gemini]

1 hour ago, Mermaid's Mom said:

We would not even entertain the idea of ant-depressants.  We didn't even medicate her for the ADHD diagnosis because my gut knew it was incorrect.   I hope I am not painting it as more dire than it is.  In reality it is just so out of character for her.  This week there are new rules...she has to be up and out of bed by 9:30am so that she doesn't stay up all night.  She has an hour to lounge and eat breakfast/watch TV  then she has to get dressed etc and no more TV for the day.  Then she has to sort out how she wants to spend her day.  Today she decided she wants to do some gardening so she is out there in the fresh air pulling weeds.  I am going to give her back some control and just allow her to have some time to sort herself out. 

She has been a TROOPER the past 3 years and she has earned this mental health break! LOL!

OK....so you deserve the gold medal for quality parenting.......which is rare today!  The fact that you knew those "diagnoses" may not be correct and are waiting for the diet to sort things out is phenomenal.  It is difficult to push back with doctors but no 13 year old should be medicated for things that are symptoms of an underlying problem.  Both are known symptoms of Celiac Disease and many have seen resolution of symptoms after healing on the GFD.  Keep up your good work and I think it is also great you have established rules. 13 is not an adult and all kids benefit from parental guidelines and rules. I wish more people relied on their instincts more to show them the right path! 

[Mermaid's Mom]

10 minutes ago, Gemini said:

OK....so you deserve the gold medal for quality parenting.......which is rare today!  The fact that you knew those "diagnoses" may not be correct and are waiting for the diet to sort things out is phenomenal.  It is difficult to push back with doctors but no 13 year old should be medicated for things that are symptoms of an underlying problem.  Both are known symptoms of Celiac Disease and many have seen resolution of symptoms after healing on the GFD.  Keep up your good work and I think it is also great you have established rules. 13 is not an adult and all kids benefit from parental guidelines and rules. I wish more people relied on their instincts more to show them the right path! 

Well I REALLY needed that pat on the back more than you know so THANK YOU for taking the time to type them.   There are so many ways in which I have not followed the "rules" and endured the eye rolls and judgements so it is nice to hear someone appreciate those very things.   Currently having a 13 year at home for no good "reason" is just one more thing that I second guess myself on all day long! LOL!

It's funny...it has been such a long process.  When the first diagnosis rolled in - ADHD - I thought..."huh! that does make sense!"  But yet it didn't tick ALL the boxes and there were issues that were unexplained by that diagnosis.  Then they layered on SPD and Dyspraxia and I thought.  WOW that REALLY makes so much more sense now!  But...hmmmm...that still doesn't explain xyz.

As time passed my BFF would say after every new diagnosis "Does it tick all the boxes yet?"  And my answer was always No.  Until Gluten Ataxia.

I can say that I think I can stop looking.  Now I just have the pleasure of explaining it to the masses!

Anyway...thanks again for the compliment!

 

[TexasJen]

I'm sorry to hear that your daughter is struggling so much.  It is very hard to see our kids struggle.  Only you and your daughter will know what is best for you and sadly, that may take months of trying different things to figure it out.  

I went through a period of adjustment and mourning (heck, I may still be in it sometimes).  Type 1 diabetics are often diagnosed in their teenage years and struggle with the desperate need to be normal.  They will often times act out or sabotage their own therapy - it has something to do with the developing teenage brain.  You might reach out to that community and see how those mom's help their kids stay on track and what works for them.

Also, have you considered homeschooling for a while?  I live in a city where homeschooling is very accepted and there are a lot of resources. I don't know if the same is true for you, but if your daughter needs a long break from mainstream school, that may be a good option to keep you focused but keep her away from the rush of regular America.  Kids are cruel and until she figures out how to deal, it may be to hard to deal with other people too.

Good luck!

 

[Mermaid's Mom]

7 minutes ago, TexasJen said:

I'm sorry to hear that your daughter is struggling so much.  It is very hard to see our kids struggle.  Only you and your daughter will know what is best for you and sadly, that may take months of trying different things to figure it out.  

I went through a period of adjustment and mourning (heck, I may still be in it sometimes).  Type 1 diabetics are often diagnosed in their teenage years and struggle with the desperate need to be normal.  They will often times act out or sabotage their own therapy - it has something to do with the developing teenage brain.  You might reach out to that community and see how those mom's help their kids stay on track and what works for them.

Also, have you considered homeschooling for a while?  I live in a city where homeschooling is very accepted and there are a lot of resources. I don't know if the same is true for you, but if your daughter needs a long break from mainstream school, that may be a good option to keep you focused but keep her away from the rush of regular America.  Kids are cruel and until she figures out how to deal, it may be to hard to deal with other people too.

Good luck!

 

I actually considered homeschooling her this year because the chronic fatigue made it difficult for her to get to class and complete work at the same pace as her peers.  She was the one who pushed for going (it was a new school also) and it was the best decision EVER!  She has made so many new friends and this is the most "normal" she has ever been.  Previously she was in a school with only one grade 6 class and that meant she went from grade 1-6 with the same 13 girls.  By grade 6 it was a disaster.  At the new school she met her tribe and is having the best year socially to date.

She is an anomaly in the sense that she prefers to not be "typical".  She thinks normal is boring.  She gets that 100% from me.  When she was being fitted for hearing aids the staff repeatedly stressed that she could get them in the same shade as her skin or hair and she was like   And ordered then in hot pink and wore her hair in a pony tail on the first day of school JUST SO the kids would see them! LOL!

She is just soooo well adjusted!!  She stood in front of her entire class and did a presentation on her issues so that kids would feel comfortable asking her questions. 

So if this "hiatus" drags on for any real duration I will discuss homeschooling her.  But I really can't imagine it will.  If it does so be it and we will teach her at home.   She was actually getting a bit bored today so we will see how long she lasts. 

[Mermaid's Mom]

Guess who went to school today!!??  And with a HUGE smiley face and a s$#& load of energy!  One day at a time!

[Gemini]

1 hour ago, Mermaid's Mom said:

Guess who went to school today!!??  And with a HUGE smiley face and a s$#& load of energy!  One day at a time!

Excellent!  I figured she wouldn't stay home too long.  Kids like to be with their friends.  This may definitely be the point where she turns it around and  her health goes in an upward motion more often than not. You are making progress!