Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Is Tiredness And Lack Of Energy Part Of Cd

ILOVEOMC

Recommended Posts

ILOVEOMC Enthusiast
ILOVEOMC
Posted

:D Hi,

My son is 11(almost 12) and was diagnosed back in March and has been gluten-free for 5 months now. They believe he was just starting to get celiac disease and they caught it early since he was only complaining of symptoms 4 months before diagnosis.

The trouble now is that he spends a lot of time on the coach watching tv and acts like he is too tired to do much of anything. He does play soccer but isn't too interested in the pracitices. Since being gluten-free for 5 months I wonder if this is normal for Celiacs to show signs of lack of energy. Is it? Will it be like this always for him? Or is this just the teenage years getting closer? Any advice is appreciated here, thanks so much :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Canadian Karen Community Regular
Canadian Karen
Posted

It's hard to say......

It could be that his system is still trying to heal and he still has malabsorption issues. Does he take vitamin supplements? Additional iron? Has he shown to be anemic?

My other train of thought could be that it is just his age. The reason I say that is because my daughter who is also 11 (12 next month), who does not have celiac disease, has basically spent this whole summer sleeping in til noon and lounged around the whole rest of the time (except for baseball, which she is exceptional at, but also never went to the practices.......) It could just be indicative of the age......

Also, are you 100% sure of the gluten-free status of your son? The reason I ask is that it can be hidden in the darndest places that I wouldn't have even thought to look if not for the great knowledgeable people on this board. Does he have his own toaster? Have you checked medications, vitamins, shampoos, toothpaste, etc.? I made the mistake of not being careful enough and it turns out that the medication I was taking for my gas (Gax-X Chewable Tablets), which I was taking like candy due to the severe gas pains, ended up containing gluten!!!!! It can happen so easily..... just one little thing overlooked, and symptoms continue.....

By the way, I don't know how it is for boys (since my twin boys are only 4 yrs old), but I have absolutely NO IDEA how I am going to survive Eileen going through all this melodramatic, sleep all day, hormone raging, Jeckyl/Hyde phase...... Ah, the joys of parenthood!!!! <_<

Karen

ILOVEOMC Enthusiast
ILOVEOMC
Posted
  • Author

:D Karen,

I appreciate your response. His toothpaste is Crest and gluten-free and I do use new toaster just for him. There is always the possibility we are overlooking something or he is getting cross contaminated in our kitchen which is not totally gluten-free .

Blood work never picked up any anemia. Time will tell I guess and I lood forward to his year follow up visit with the GI doctor and run this past him too.

I laughed and related well to your description of your daughter. He is my oldest also and I just don't know what I am in for with the teen years on the horizon. He has no energy and my 6 year old is non-stop energy. Thank goodness school starts tomorrow for us in Ohio. Thanks for sharing.

ILOVEOMC Enthusiast
ILOVEOMC
Posted
  • Author

:D Karen,

I appreciate your response. His toothpaste is Crest and gluten-free and I do use new toaster just for him. There is always the possibility we are overlooking something or he is getting cross contaminated in our kitchen which is not totally gluten-free .

Blood work never picked up any anemia. Time will tell I guess and I lood forward to his year follow up visit with the GI doctor and run this past him too.

I laughed and related well to your description of your daughter. He is my oldest also and I just don't know what I am in for with the teen years on the horizon. He has no energy and my 6 year old is non-stop energy. Thank goodness school starts tomorrow for us in Ohio. Thanks for sharing.

nettiebeads Apprentice
nettiebeads
Posted
:D Karen,

    I appreciate your response. His toothpaste is Crest and gluten-free and I do use new toaster just for him. There is always the possibility we are overlooking something or he is getting cross contaminated in our kitchen which is not totally gluten-free .

    Blood work never picked up any anemia. Time will tell I guess and I lood forward to his year follow up visit with the GI doctor and run this past him too.

    I laughed and related well to your description of your daughter. He is my oldest also and I just don't know what I am in for with the teen years on the horizon. He has no energy and my 6 year old is non-stop energy. Thank goodness school starts tomorrow for us in Ohio. Thanks for sharing.

<{POST_SNAPBACK}>

I sure hope he knows the importance of not cheating. I let my daughter live through her teen age years even though I had that recurring thought " I brought her into this world and I can take her out!!! :angry: " But she's now 21, in college, moved out of the house but still lives in town. She actually called me one night just to talk! (and not ask for money!! :o ) I had heard rumors that teenagers do turn back into real people, and they were right!! It was that thought and remembering how sweet and fun she was as a toddler that kept me sane at times. :) Remember, this too shall pass.

ravenwoodglass Mentor
ravenwoodglass
Posted

Hi, Fatigue can be part of celiac but it should be relieved by the gluten-free diet. How did he 'take' the news he was gluten-free? Could he be stressing about now being different and worried about getting the wrong sort of attention at school? For my son the worst thing about the celiac is the depression, could he be getting trace amounts and experiencing depression? Does he still want contact with his freinds? If he doesn't that might be a sign that more is involved than just tired. You probably already know this since you knew about the toaster issue so forgive me if you do but please be sure you wipe down all counters and use different utensils for his food. Make sure if you have a microwave that things are covered and it is wiped out a lot. I used to be a professional chef and my specialty was cooking for people with food allergies and intolerances so I know how hard it can be to be scrupulous when it comes to cooking for him but its important. And be aware that things like glues and pastes, modeling compounds and clays, paints and such may also be sources of contamination. Good luck and hope he's jumping around and driving you crazy like any good kid soon.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Celiac.com Sponsored Post
      0

      Recently launched Daura Non-Alcoholic Named One of the Best in the World by Forbes

    2. Iam
      - Iam replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Yes. I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy. Numerous dental visits and several professionally made bite plates did very little to help with symptoms
    3. trents
      - trents replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    4. Scott Adams
      0

      New Research Reveals Why the Gut May Stay Sensitive Even After a Gluten-Free Diet

    5. bobadigilatis
      - bobadigilatis replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm. Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,306
    • Most Online (within 30 mins)
      7,748
    Mia Cromwell
    Newest Member
    Mia Cromwell
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Iam
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Iam · Posted

      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
    • trents
      Feel like I’m starting over

      By trents · Posted

      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    • bobadigilatis
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By bobadigilatis · Posted

      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.