A Shell Of The Person He Once Was...is This Normal?

[mom2alex]

Hello again.  Mom to a 22 year old son with Down syndrome and newly diagnosed celiac via blood work.  We have our endoscopy next week.

 

Still trying to figure out what is going on with my son.  I have had him off gluten for a week.  However he still continues to decline health wise. 

 

I don't think it has gotten worse since removing the gluten but its not getting better. I know its only been a week but I just feel like there is something else going on or are these symptoms part of celiac.

 

He is withdrawn. Things he used to love to do he doesn't anymore.  He sleeps all the time. Has no energy.  Doesn't want to go anywhere or do anything.  He used to love to play his guitar, video games, listen to music. He doesn't do any of it anymore.

 

I have taken him off of work.  It got to the point he didn't want to go. Honestly I don't know if he has the stamina at this point to return. 

 

He is a shell of the person he used to be.  Is this part of celiac?  Will he return?  Its so hard watching this once vibrant outgoing person just withdrawl and lack motivation or energy.

 

Thanks for listening. 

[kareng]

Has this happened in the last week? I'm going to assume its been slowly building for a while.

It take much more than a week to feel better. Hopefully, the tiredness, etc is a result of the lack of nutrients he has been absorbing and it will get better. You might want to ask his doctor about testing to see what he lacks - vit d, b12, iron, etc. Have they recently checked his thyroid?

[ravenwoodglass]

Welcome to the board. Some of us will suffer through a withdrawl when we first go gluten free. If that is what is going on it will pass. It also takes some time to heal and he has only been gluten free for a week so hang in there. Do be sure to check out the 'celiac 101' thread as it can be tricky at first when we go gluten free as the gluten free lifestyle can have a bit of a learning curve to prevent cross contamination.

[mom2alex]

His last round of blood tests etc showed vit d deficiency everything else was fine. Thyroid included.  It has steadily been getting worse I would say over the last month as far as energy level and lack of any motivation.

[NoGlutenCooties]

Lethargy, fatigue, depression, and general malaise can all be associated with Celiac.  Of course, every possible symptom of Celiac - of which there are literally hundreds - have other potential causes as well, which is part of what makes this disease so frustrating.  You may want to consider a multi-vitamin and a Vitamin B Complex.  Often vitamin deficiencies don't show up in the blood until they are extremely low elsewhere in the body.  And the good thing about B vitamins is that they're water soluble so whatever your body doesn't need gets flushed out in the urine - so it's not like you have to worry about getting too much if he doesn't actually need them.  I would try them for a few days and see if they make a difference.

[GFinDC]

Gluten can cause withdrawal symptoms in some people.  There is  also a link to pschizophrenia and depression.  But the symptoms tend to go away after some time healing.  Have you replaced your toaster yet?  That's one item that sometimes gets new people.

[nvsmom]

I was going to chime in on withdrawal too. I remember being so tired, cranky, and having a major headache for almost a couple of weeks. Withdrawal usually only lasts a couple of weeks at most, so hang in there.

[kareng]

Are there any Down's Syndrome forums? I have heard from a couple of people who have adult children with Down's and diagnosed celiac that there are some unique issues.

Edit: I am trying to get in touch with one of them. I'll let you know if I find her.

[Nikki2777]

Possibly Celiac, thyroid, anemia and I would also add Lyme Disease to the list. I'm sorry you're going through this. Must be so frustrating. I have heard that many with DS have congenital heart issues. Have you had this checked?

[kareng]

Hello again.  Mom to a 22 year old son with Down syndrome and newly diagnosed celiac via blood work.  We have our endoscopy next week.

 

Still trying to figure out what is going on with my son.  I have had him off gluten for a week.  However he still continues to decline health wise. 

 

I don't think it has gotten worse since removing the gluten but its not getting better. I know its only been a week but I just feel like there is something else going on or are these symptoms part of celiac.

 

He is withdrawn. Things he used to love to do he doesn't anymore.  He sleeps all the time. Has no energy.  Doesn't want to go anywhere or do anything.  He used to love to play his guitar, video games, listen to music. He doesn't do any of it anymore.

 

I have taken him off of work.  It got to the point he didn't want to go. Honestly I don't know if he has the stamina at this point to return. 

 

He is a shell of the person he used to be.  Is this part of celiac?  Will he return?  Its so hard watching this once vibrant outgoing person just withdrawl and lack motivation or energy.

 

Thanks for listening.

I am going to personal message you the email of someone who has been dealing with this same thing for a few years.

[mom2alex]

I am going to personal message you the email of someone who has been dealing with this same thing for a few years.

Thank you. I have contacted her.

[anti-soprano]

I know that your son has special circumstances, but wanted to let you know that I was extremely fatigued at the very beginning of my gluten free diet.  I once had an internal injury (partially collapsed lung) and the fatigue was similar to that.  I imagine that once the gluten was out, my body put all of its energy into healing my gut.  At about 6 months I began to see sporadic higher energy days and they consistently increased- although very slowly.  I was also very prone to illness the entire first year.  Before that point and after the first year marker, I rarely get colds/infections.

 

I hope he feels more like himself soon!

Shellie

[kareng]

I think most people missed the fact that it got worse before he started the gluten-free diet.  It has stayed the same on the diet.  Obviously, it can take months to feel better - so hopefully, that is all it is.

[ravenwoodglass]

I think most people missed the fact that it got worse before he started the gluten-free diet.  It has stayed the same on the diet.  Obviously, it can take months to feel better - so hopefully, that is all it is.

Your right I did miss that.  What OP is describing sounds like depression symptoms. Celiac can cause depression episodes, it does in myself and have heard of others that have that brain impact. There could of course be other causes. If the celiac has impacted his mood it may take a bit of time for it to resolve. Has the doctor checked his vitamin levels?  Some vitamin deficienies can contribute and so can just not feeling well. What ever is going on I hope it resolves soon and he is back to being himself soon.