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

8 Years And I Am Still Oh So Tired!

macbadgirl

By macbadgirl
in Coping with Celiac Disease

Recommended Posts

macbadgirl Newbie
macbadgirl
Posted

I wasn't diagnosed until I was 30, but been unwell since an infant, I am now 38. I ache all over I am still tired and need nanna naps. I just thought i would feel better. I suffer from anxiety/depression but have been on meds for a long time. I have a 1.7yr old toddler and am flat out looking after him & my house/husband/stepdaugher.

Work wants me back fulltime but I am always so tired & don't hardly go out. I also have back/siatica pain.

DOES ANYONE ELSE STILL SUFFER TIREDNESSS AFTER YEARS ON A G/FREE DIET???

Just wondering............hoping someone feels like me.

Gail

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

Celiac.com Sponsor (A8-M):


JNBunnie1 Community Regular
JNBunnie1
Posted
I wasn't diagnosed until I was 30, but been unwell since an infant, I am now 38. I ache all over I am still tired and need nanna naps. I just thought i would feel better. I suffer from anxiety/depression but have been on meds for a long time. I have a 1.7yr old toddler and am flat out looking after him & my house/husband/stepdaugher.

Work wants me back fulltime but I am always so tired & don't hardly go out. I also have back/siatica pain.

DOES ANYONE ELSE STILL SUFFER TIREDNESSS AFTER YEARS ON A G/FREE DIET???

Just wondering............hoping someone feels like me.

Gail

Honestly, it sounds like you have a thyroid issue. I'd see a naturopath about that.

mamaw Community Regular
mamaw
Posted

I too think it sounds like thyroid problems....

fedora Enthusiast
fedora
Posted

I don't know much about thyroid problems, but that sounds like a good suggestion. I would also say iron levels need to be checked. Maybe other food intolerances- dairy, soy....

good luck and hope you feel better. I was sooooo tired for years after having my first baby(not gluten or dairy free then). People would say it was from the pregnancy, but I knew it wasn't.

RiceGuy Collaborator
RiceGuy
Posted

What worked best for me was methylcobalamin (B12) and magnesium. I've read that the body can store B12 for upwards of twenty years, so a deficiency wouldn't show immediately if you have a reserve.

macbadgirl Newbie
macbadgirl
Posted
  • Author

I have had the thyroid & B vitamins checked all the time, but all ok?

I'll just hang in there....

pixiegirl Enthusiast
pixiegirl
Posted

I think the bottom line is before you try vitamins and such, is to see a doctor, you could have thyroid issues, or be anemic or anything number of things. Most of which can be detected with simple blood tests (there are 2 tests for thyroid one is older and not as good the newer one is I think a few different blood tests - probably someone here will know - make sure you get the newer better test). Being as bone tired as you are is not normal. Your doctor should have some ideas of where to go next and I'd follow the medical route to see if you have developed more food allergies or have something else going on.

Certainly at the same time if you have a naturopath or homeopath in your area it would be good to get their take on it too. And I'm not against vitamins, I take a bunch of them, but I personally think you need to rule out a few traditional medical issues before you embark on that.

Good Luck,

Susan

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

Celiac.com Sponsor (A8-M):


mftnchn Explorer
mftnchn
Posted

Sounds like you have already covered quite a few bases. Iron deficiencies can be quite hard to trace, as I understand it. You might PM confusedks, as she has had this problem and knows quite a bit about what tests need to be run. The standard ones can show normal and there still be a major problem.

You'd think that any malabsorption would have resolved by now if due to gluten. You might check out the lyme disease thread here on the forum. Fatigue is certainly a major part of that and symptoms can be similar to celiac.

Joni63 Collaborator
Joni63
Posted
Sounds like you have already covered quite a few bases. Iron deficiencies can be quite hard to trace, as I understand it. You might PM confusedks, as she has had this problem and knows quite a bit about what tests need to be run. The standard ones can show normal and there still be a major problem.

You'd think that any malabsorption would have resolved by now if due to gluten. You might check out the lyme disease thread here on the forum. Fatigue is certainly a major part of that and symptoms can be similar to celiac.

I've read that some Celiacs will continue to have malabsorption problems depending on the severity of their villi damage when they were first diagnosed. Milk and soy can also cause villi damage along with some other infections and ailments, which would cause malabsorption to continue. Parasites can also cause malabsorption and anemia (hookworms especially). Theres a thread currently going on now about Humaworm which is all herbal parasite cleanser and many people have taken it here and seen proof that it has worked. It's an extremely gross thought, but parasites can be causing problems in our bodies.

Checking for lyme is also a good suggestion. It's on my list of things to get checked if I don't feel better once I get my vitamin/mineral levels up. I have lived in or near woods all my life and camped every year and have been bitten so many times by ticks. It might be somthing you could also get checked. I know Igenex labs is the best place for the bloodwork to get tested. Maybe others can give you more advice on that...CarlaB perhaps.

I think a good place to start would be with your vitamin/mineral levels and thyroid. Serum ferritin is the iron level that should be checked. Mine is extremely low at 7, even though my hemoglobin and hematocrit and usual iron tests show within the normal range. My hemoglobin and hematocrit has been declining gradually, but none of my doctors ever said anything about it. Just a side note, I think I feel worse now after being gluten free for 8 months as far as energy level goes.

Other vitamin deficiencies and thyroid (you need to get a full thyroid panel including free T3 and free T4) can cause extreme fatigue. My tests showed I am also extremely deficient with vitamin D, so now my Doctor is checking even more vitamin/mineral levels next time. I'm also going to request a bone scan. I want to know where I stand with all these things so I can correct any deficiencies now before they become major problems. I've read that should be standard procedure for people first being diagnosed with Celiac since calcium absorbtion is typically a problem.

Naturopaths usually are great at suggesting supplements that will help improve energy and are well versed on vitamins needed for different ailments. I'm seeing one this saturday for the first time in addition to my regular GP because I have such a lack of energy right now. My legs also are killing me by the end of the day or if I walk up and down steps a few times. I was jogging and taking karate, but had to stop because it is wearing me down too much right now.

It is hard enough feelling lousy, but even harder when you have a toddler to chase around. Keep digging for answers and don't stop until you find something concrete. Suggest these tests to your Doctor and see what he thinks. Thankfully, mine will test me for just about anything I ask even though she's clueless about Celiac. A good Doctor will listen and work with you. Don't settle for less!

Good luck to you! Let us know if you get some answers.

macbadgirl Newbie
macbadgirl
Posted
  • Author

Thanks for all you input, I am in Australia and some of the Doctors only do routine tests and can be a bit clueless.

bakingbarb Enthusiast
bakingbarb
Posted
Sounds like you have already covered quite a few bases. Iron deficiencies can be quite hard to trace, as I understand it. You might PM confusedks, as she has had this problem and knows quite a bit about what tests need to be run. The standard ones can show normal and there still be a major problem.

You'd think that any malabsorption would have resolved by now if due to gluten. You might check out the lyme disease thread here on the forum. Fatigue is certainly a major part of that and symptoms can be similar to celiac.

You are right. My daughter gets tested for her iron levels all the time. One test which is the common one shows the immediately available iron but not the deep stores. That test is not as commonly tested and it tends to show empty.

I think some people get an infusion but we take a highly absorb able iron and it helps us. If you want the name please let me know.

I agree with what everyone is saying, there must be something that is being missed. Maybe you need to go to a new Dr, sometimes a fresh set of eyes can see something new.

Fatigue sucks, I have only been gluten free a few months and I know all about fatigue. It has been my closest companion for years. It is improving some but it still is in the background.

Oh I was also thinking what about testing in depth for what if any vitamins or minerals that you could be missing.

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. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
    2. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    3. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    4. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    5. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,859
    • Most Online (within 30 mins)
      7,748
    Santa Don
    Newest Member
    Santa Don
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • 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.