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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,144
    • Most Online (within 30 mins)
      7,748
    Jenny0384
    Newest Member
    Jenny0384
    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

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
×
×
  • 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.