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. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      @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...
    2. Wheatwacked
      - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped. It sounds more like you are suffering from malnutrition. Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here. Malnutrition...
    3. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well. I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given...
    4. Wheatwacked
      - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

      Hello @Scatterbrain, Are you getting enough vitamins and minerals. Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D. By the way you should get your mom checked for celiac disease. You got it from your mom or dad. Some studies show that following a gluten-free diet can stabilize or improve symptoms...
    5. Scott Adams
      - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,291
    • Most Online (within 30 mins)
      7,748
    DottieLyn
    Newest Member
    DottieLyn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • 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
    • Wheatwacked
      Related issues

      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
      Recovery from gluten challenge

      By Scott Adams · Posted

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
×
×
  • 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.