Symptoms and relief

[Fourgifts]

Wondering what I can do to help my daughter 

she is exhausted sleeping 12–14 hours stayed can’t keep eyes open 

comes home from sch and take nap and difficult concentrating

schpol thinks avoiding 

how can I help 

[kareng]

Have you been to the doctor?  Checked for thyroid, anemia, mono? Not everything is Celiac.  She could have some other issue.

Edited September 25, 2019 by kareng

[Fourgifts]

Yes they have checked 

told me she fatigued bc still eating poorly and bc of poor absorption and that this and pain will go away but she isn’t functioning/ living do well these days and school has become a real challenge 

[kareng]

34 minutes ago, Fourgifts said:

Yes they have checked 

told me she fatigued bc still eating poorly and bc of poor absorption and that this and pain will go away but she isn’t functioning/ living do well these days and school has become a real challenge 

I dont know her age, any chance she is a bit depressed?  

[ravenwoodglass]

Could she still be getting gluten somewhere? Don't know her age but some arts and crafts supplies can contain gluten. Does she try to eat foods the school serves? Even if some stuff seems like it could be safe CC risk is likely. If older does she have a significant other? If so their eating gluten before a kiss can also CC her. If she was newly diagnosed have they done vitamin and mineral level testing? She may be deficient and need supplements. If you haven't already do check the 'Newbie' thread at the top of the Coping section to be sure you are doing all that needs to be done to keep her safe at home. I hope she is feeling better soon but it can take some time to heal. 

[Fourgifts]

8 hours ago, kareng said:

I dont know her age, any chance she is a bit depressed?  

Was screen but anything bpossible

to me she seems irritable and angry -she is 16/half

[cyclinglady]

I get anxiety and am very irritable when I am exposed to gluten.  

Do you have good gluten free kitchen procedures in place?  Maybe consider having the entire house go 100% gluten free, at least for a few months?  Avoid going out to eat for a few months?  Finally, she is 16 (I have a teen myself).  She wants to fit in.  It can be so hard!   I was reading Gluten Freedom by Dr. Fasano, a leading celiac disease researcher.  He told a story of a teen who was getting sick after being diagnosed when he was young.  Turns out, when his parents were out of the room, he confessed to eating pizza on a date.  He was too embarrassed to tell his date that he had celiac disease.  

My own daughter has a friend lunch group.  One girl has a nut/milk allergy, one is a vegan and the other has celiac disease (recently diagnosed).  If they did not share their medical conditions or lifestyle choices, they probably would have felt very isolated.  

My heart goes out to you and your daughter.  

 

[Awol cast iron stomach]

I second the checking for possible cc or vitamin/mineral check.

I personally have to watch my b vitamins, vitamin d, and magnesium. 

My female cycle and being super busy physically etc can play into it too. Some bodies need more B vitamin support and those gluten foods we ate prior to diagnosis often were fortified with B's. One can burn through the B's they consumed before lunch.  Low B's then can give  us symptoms of fatigue, mood etc. Somedays even now I underestimate my bodies needs and demands. 

Last year when I returned to work full time. I had to keep bring snacks etc to meet my bodies demands. Some days my work schedule may make more demands on me then others. I found I had to be conscious of what my body needed not only for daily activity, but support to heal. 

As I said in earlier posts. I originally had an intense 2 years initially after diagnosis. I had to leave a pt position I had at the time . I would get my kids off to school and sleep, most days setting an alarm 15 minutes before the first one got  home, so I was there to greet her.

My body said I need to heal, sleep is what it wanted more than food initially. I was never known to be a sleeper/napper growing up, and I switched to sleeping more than awake. Insane! So out of character.

If she is on sports or extra curricular activities think about it you got an active teen, healing, the female body still needs nutrients to support hormones etc beyond regular daily activity.

High schoolers have larger campuses,  move around a lot more , These days more teachers give flexible seating options , standing  desks, active group work etc . She maybe burning through her food or not getting and absorbing all she needs.

I was getting a subclinical hypoglycemic like symptom when I went back full time. I brought nuts often as a snack to take every 2-3 hours because my body burned through my food before lunch. I am moving constantly among different building wings.

I am sorry the school may not get it or they need more info. Respectfully, high schoolers may not want to stand out or make a scene etc . Is she willing to bring a small snack? Most school have rules as to where students can eat, but for some students a nurse may have an area to store snacks or the student brings the snack and goes to the designated space in the nurse's office to eat etc.

If the Dr 's stated she's not eating enough at the body's greatest time of need for healing. I would see if you can see what can be done at school to help her. She may not be able to eat a big meal that lasts until lunch at home so a snack might be needed. She also due to many student allergies can't keep food in her locker and toss it in her mouth between classes.

I believe you, your daughter, and the school can make it work. She may not need a snack every day, but on days she does it would help to have a space to eat one.

They don't want her struggling and missing school, but I'll be honest some school may not fully understand celiac as well as IgE mediated allergies. Most have great training for IgE mediated allergies, but not necessarily as much experience with celiac.

This can be done with some discussion and hopefully some support.

I hate looking sick or discussing my condition too much, but I still have to remind others or tell them of my needs/limitations- occasionally. 

See if you can get her to open up about it. The school is concerned and you are. How can we support you dear daughter. Snack or drink support options on days she needs it etc. Remind her it may not be a daily thing, just a sometime thing.

 

Good luck 

[Fourgifts]

Interesting thoughts 

im taking her to children’s celiac clinic Friday 

pediatrician tested and didn’t see anything off with her chemistry but perhaps testing for mono was suggested pending what gi doctor says 

[Posterboy]

22 hours ago, Fourgifts said:

Interesting thoughts 

im taking her to children’s celiac clinic Friday 

pediatrician tested and didn’t see anything off with her chemistry but perhaps testing for mono was suggested pending what gi doctor says 

Fourgifts,

I Second everything AWOL said...B-Vitamins and Magnesium for Energy will help her fatigue if it (CFS) is your daughters main complaints....I had similar problems in college..thought I wouldn't finish...turns out I was low in Magnesium...find a B-complex and Magnesium Glycinate to take with meals and your daughters energy levels should improve dramatically over the next few months...but recent research has confirmed what my body already knew...

Here is a link about how Magnesium and it's possible CFS connection.

http://simmaronresearch.com/2015/08/epstein-barr-virus-the-magnesium-connection/

I hope this is helpful but it is not medical advise.

Posterboy,

[Fourgifts]

Interesting article 

thank you

pediatrician seemed indicate she would know if she was deficit in vitamins by blood work which she’s not but perhaps extra dose would be good 

ill have to think about this

[cyclinglady]

4 hours ago, Fourgifts said:

Interesting article 

thank you

pediatrician seemed indicate she would know if she was deficit in vitamins by blood work which she’s not but perhaps extra dose would be good 

ill have to think about this

Please do think about it.  Posterboy is obsessed with vitamins, in my opinion.  He thinks they will cure anything and that everyone is deficient.     Please consult with your daughter’s PED/GI before supplementing with vitamins.  

You can help to insure she is consuming a well-rounded, healthy gluten free diet.  Consider consulting  with a dietitian who specializes in celiac disease. Kids can be picky eaters.  ?  

[cyclinglady]

7 hours ago, Posterboy said:

Fourgifts,

I Second everything AWOL said...B-Vitamins and Magnesium for Energy will help her fatigue if it (CFS) is your daughters main complaints....I had similar problems in college..thought I wouldn't finish...turns out I was low in Magnesium...find a B-complex and Magnesium Glycinate to take with meals and your daughters energy levels should improve dramatically over the next few months...but recent research has confirmed what my body already knew...

Here is a link about how Magnesium and it's possible CFS connection.

http://simmaronresearch.com/2015/08/epstein-barr-virus-the-magnesium-connection/

I hope this is helpful but it is not medical advise.

Posterboy,

AWOL suggested that Fourgift’s daughter should be checked by a doctor for deficiencies and then shared her personal experiences about her own deficiencies and experiences.    She did not suggest that this poor girl should take supplements without a doctor consult.  

Please stop trying to diagnose members.  This girl does not have CFS (Chronic fatigue Syndrome).  Her mother never mentioned that.   There are many causes of fatigue.  Do you know this girl?  Are you a doctor?  

Looks like you are giving out medical advice.  I know you think you are being helpful, but you are not.  I have to say something because this is a kid we are talking about!  

My apologies to Fourgifts for getting off topic.  

 

 

Edited September 27, 2019 by cyclinglady

[GFinDC]

@Fourgifts,

How long has she been gluten-free?  The recovery period from celiac damage can be a year or more.  She should start feeling better over that time but it is not a fast process.  And any little bit of gluten contamination sets the healing back.

Staying away from processed foods and sticking with whole foods is helpful IMHO.  It is also much simpler to know if a food is safe if you prepare it from scratch yourself.  Eating in restaurants is a choice best done after 6 months or so and learning the gluten-free diet.  There is lots to learn as gluten is in many foods and minor cross contamination is a serious problem.

Edited September 27, 2019 by GFinDC

[kareng]

13 hours ago, Fourgifts said:

Interesting article 

thank you

pediatrician seemed indicate she would know if she was deficit in vitamins by blood work which she’s not but perhaps extra dose would be good 

ill have to think about this

Sorry about that post.  Every forum seems to have one.  You haven’t been around long enough to know he pushes extra vitamins ( sometimes to the point of overdosing) and zeros in on an illness he hears about on the internet and diagnoses  people with it.  Could Epstein Barr be an issue for her? sure.  But so could a lot of other things.  

I am glad you are getting lots of medical help for her.  Let us know how it goes.  

 

Edited September 27, 2019 by kareng

[Awol cast iron stomach]

On 9/27/2019 at 12:46 AM, cyclinglady said:

AWOL suggested that Fourgift’s daughter should be checked by a doctor for deficiencies and then shared her personal experiences about her own deficiencies and experiences.    She did not suggest that this poor girl should take supplements without a doctor consult.  

Please stop trying to diagnose members.  This girl does not have CFS (Chronic fatigue Syndrome).  Her mother never mentioned that.   There are many causes of fatigue.  Do you know this girl?  Are you a doctor?  

Looks like you are giving out medical advice.  I know you think you are being helpful, but you are not.  I have to say something because this is a kid we are talking about!  

My apologies to Fourgifts for getting off topic.  

 

 

Let me clarity, I wasn't implying chronic fatigue. Just that some women in my opinion bio chem level need more b vitamins around their menstrual cycle and/or magnesium as the body with all of its job at that time  may need more, especially if demands as greater than norm. Ensuring these women get enough b's may help especially if one is not consuming fortified processed foods. I can't consume processed gluten-free breads etc and make my own baked goods at home with minimal ingrediants. 

So whether her daughter is getting c c or even if she is vigilant , her body may require more b's as a 16 year old.  Many of the pms symptoms some women can get (not all) may relate to a dip even subclinical in b vitamins. I am not saying it's PMS either, one can get symptoms of it, but not be ruled all in.  I have not been diagnosed PMS. B vitamins as many here know are water soluable, so it maybe as simple as her body is using her current consumed b's to heal or handle daily activity if no cc is occuring and once the menstrual cycle demands kick in the demand may be more. In my opinion worth trying some b foods around week before period to see if it helps. 

My mom a retired nurse while I was growing up often noted I craved magnesium pre menstrual and often made sure I had extra magnesium snack options. A nurse practitioner at my college clinic suggested I also ensure I had enough b's as well. I

So this is something I have been aware of through out my life and in the event I unfortunately get cc I know I am personally prone to monitoring this  and must be aware of it.

https://www.betterhealth.vic.gov.au/health/healthyliving/nutrition-womens-extra-needs

So all from personal experience and knowledge that sometimes the menstrual cycle causes some females to need more b's to ensure the body has all of its needs the week before flow arrives. In the past a co-worker shared with me her concern about her daughter's pre menstrual moods that the Dr. Was not concerned with. I shared my story and she later reported back she and her daughter found she needed more b6 the week before flow. She no longer struggled. ?

 

Edited October 6, 2019 by Awol cast iron stomach
Misspell

[cyclinglady]

No worries, @Awol cast iron stomach.  My message was directed to Posterboy who has been way too enthusiastic in trying to diagnose members when he has no medical experience and his agenda is the same repeated topic (vitamin deficiencies) regardless of the OP’s situation or question.