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8 Years And I Am Still Oh So Tired!

macbadgirl

By macbadgirl
in Coping with Celiac Disease

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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

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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

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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.

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    • 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
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    • NanceK
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      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
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