Celaic and Fatigue

Kim - posted on 02/13/2009 ( 8 moms have responded )

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My 12 year old daughter (diagnosed in 1st grade) has been fighting overwhelming fatigue for the past year. We think it might be a celiac related vitamin deficiency. Anyone have experience with this? We also wonder if we could be making a mistake -- she's eating something with wheat that we think is GF. The only info I could find on Celiac and Fatigue was in lists of symptoms (if you might have celiac). Any help, info, experiences would be appreciated.

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Michelle - posted on 08/16/2009

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hi there, fatigue can play such a big part in this. I suffered for a year tired all the time, my thyroid was sluggish from malabsorption. I did not opt for thyroid meds, instead i use alot of alternative therapies and healthy eating to rejuvenate what has been injured. My oldest daughter(14) also is suffering through fatigue. We take mineral supplements to correct this, iron and foliate are important. because celiac causes malabsorption it is good to know what deficiencies she has,if any and then do your best to begin replacing them. we also take acidophilus to put good bacteria back into the intestine, very important if she's every had antibiotics as it wipes out good bacteria as well as bad. when reading ingredients some key words are modified food starch and hydrolyzed plant protein. I have been avoiding modified corn starch as well but opinions very on this one. also vinegars can pose a problem, they are naturally cloudy( referred to as the mother) gluten is used to remove the cloudiness. balsamic, rice and apple cider are safe. For me, neurological problems occurred, very panicky which burned out my adrenal glands. I think the stress on the body before diagnosis, can cause such a strain on the filtration systems that it just takes time with the new diet to rejuvinate back to a healthy body. good luck to you, i hope you found this useful.

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Kim,
I too have experienced a great amount of fatigue. However, I have thyroid issues. But on top of that, I've had a lot of vitamin deficiencies...especially Vitamin D and B12. Both of those will affect energy levels as well. Ingesting gluten can also cause fatigue as it is one fo the first signs I get when I accidentally ingest it, along with a nice 'fuzzy' feeling in my head like when you've had just a lil too much alcohol. It's wierd how celiac can be different for everyone. It's like its own individualized disease. My 13 year old daughter (also celiac) is also experiencing a lot of fatigue. We don't know if it's celiac related or not. We had her thyroid checked and it's fine...for now. I am going to be getting a good multi-vitamin to help her in that way if I can and possibly have her blood check for her vitamin levels to make sure. Sadly, celiac affects so many things and affects us in so many ways that it's hard to determine what the problem/cause is. it sucks. But I'm sure I don't need to tell you that. ;) I'd suggest the book 'Recognizing Celiac Disease'. It has a page by page guide of symptoms and what may be causing it...especially with vitamin deficiencies. It's worth the cost of the book.

Amanda - posted on 08/03/2009

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Does she have a boyfriend you don't know about. Kissing can cause a reaction.

Keeley - posted on 02/22/2009

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Adam is floppy for a couple of days each time he has some gluten, so it might not be something she is having every day. It takes him a good few days to get it out of his system - usually reacts after two days of eating something, then takes another two or three days to get back to normal.

Kim - posted on 02/17/2009

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Quoting Keeley:

Have not had any specific probs with extreme fatigue, but can tell when my son has eaten gluten as he is lethargic and 'floppy'. Perhaps you're right and there is something sneaking in her diet? Sorry I can't be more help.



Actually, that's a LOT of help knowing that if your son eats gluten that he gets "floppy" -- that's a good way to describe it.  My husband and daughter don't think the tired is from gluten, but I really think it's that or a vitamin deficiency.  If it IS gluten, it's got to be something she eats a lot or more than one source because she's tired ALL THE TIME now.  I keep checking and re-checking, so if it's gluten I can't figure out WHERE it's coming from.



I'm trying to find out if there's a way to test that without the whole biopsied small intestine thing.  I know the blood test can tell you if you have Celiac, but I don't think it can tell levels of gluten you might have ingested. 



Thanks for the feedback.  Every little bit of info is another piece in the puzzle.

Kim - posted on 02/17/2009

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Quoting Nancy:



Hey Kim,






     Has your daughter had recent bloodwork (tTg)?  I know what you mean about worrying if she is eating something that you don't know has wheat.  Everytime my daughter gets tired and cranky, we always think of that first.  I have found that after doing this for 7 years, we have gotten more "daring" in what she eats as far as "made in a facility" items.  Also, I worry that a product that she has always eaten may change their ingredients and we don't know it.  We know to check the ingredients, but  it's hard to remember to do EVERY time, esp when she eats something every day. 






   Also, have you seen a nutritionist?  We haven't done that yet, but it sounds like a great idea to make sure they are getting everything they need. 






   Any chance your daughter is getting adventurous at school?  She is 2 years older than my daughter and I dread the daring and rebellious years. ASlo, does she have her menses?  Could she be anemic from that?






    I don't know if any of this helps, but know that you are not alone.  I hope you find out what is going on.  Keep me updated.






Nancy






 





She's had recent bloodwork and is not anemic (no menses yet).  We've done the same as you -- gotten more daring about stuff and not worried about stuff made in the same facility.  We don't read labels of stuff she always eats, so if it changed we might not catch it. 



We saw a nutritionist at the beginning (in 1st grade) but not since -- but I'm thinking about doing that.  We are doing a health/nutrition test through our chiropractor.  I'm also starting her on adult "super" vitamins instead of the ones she'd been taking; hopefully that will help.



I really want to know if there's a way to test for gluten LEVELS (if they accidentally ate something) without the small intestine biopsy.  When she was diagnosed we had to go to Denver, which is 3 1/2 hours away from us).  The docs there are the ONLY pediatric gastroenterologists for all of Western NE, WY, and CO.  It's insane trying to get in to them and usually takes an overnight trip.  I'm going to see if my husband's GI guy will take her now that she's 12.



I've got her and an 11 year old daughter -- we've had no rebellious streaks yet.  But we live in a rural area, they go to private Christian school, have nice groups of friends (all been in same class since the beginning).  My 12 year old has had some moody spells of just getting upset quickly, but I think it's just hormones/body adjustments.  My other one is a force of nature -- she's the one I think will give us a run for our money!  Hope you're lucky and don't have any troubles!



Thanks for writing back -- it helps just to talk about it.

Nancy - posted on 02/17/2009

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Hey Kim,



     Has your daughter had recent bloodwork (tTg)?  I know what you mean about worrying if she is eating something that you don't know has wheat.  Everytime my daughter gets tired and cranky, we always think of that first.  I have found that after doing this for 7 years, we have gotten more "daring" in what she eats as far as "made in a facility" items.  Also, I worry that a product that she has always eaten may change their ingredients and we don't know it.  We know to check the ingredients, but  it's hard to remember to do EVERY time, esp when she eats something every day. 



   Also, have you seen a nutritionist?  We haven't done that yet, but it sounds like a great idea to make sure they are getting everything they need. 



   Any chance your daughter is getting adventurous at school?  She is 2 years older than my daughter and I dread the daring and rebellious years. ASlo, does she have her menses?  Could she be anemic from that?



    I don't know if any of this helps, but know that you are not alone.  I hope you find out what is going on.  Keep me updated.



Nancy



 

Keeley - posted on 02/17/2009

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Have not had any specific probs with extreme fatigue, but can tell when my son has eaten gluten as he is lethargic and 'floppy'. Perhaps you're right and there is something sneaking in her diet? Sorry I can't be more help.

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