Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Celiac And Chronic Fatigue?


CathyG

Recommended Posts

CathyG Rookie

Well since they've told me that I could have the early onset of Celiacs Disease, I've also started discussing all the other inflammation I have going on in my body. I have rib pain, mild lung pain, now a swollen throat and extreme dizzy spells (which I think is a symptom of the throat issues).

My doctor has told me that it's likely that I have chronic fatigue syndrome but is testing for other auto immune diseases just in case. So far every blood test I've had has come back fine (full blood count, iron, lft,tsh etc etc), but he wants to check a tonne of other ones such as ANA, CRP (can't remember the rest).

So, for the moment I've been given Astra 8 which is supposed to be an immune booster. I have to take that for 2 weeks and go back and see him. I'm also gluten free, lactose free, and refined sugar free. I'm working my way up to going caffeine free and soy free but I'm so tired that I just need to take this step by step for the moment.

Has anyone out there been diagnosed with Chronic Fatigue? In me, the symptoms definitely fit - I'm just hoping that one day there's an end to it.


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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

I was never "diagnosed" with chronic fatigue but OMG I remember the exhaustion when I was on gluten. I would work all week and the weekend would come around and I didn't want to move a muscle I was so tired.

How long have you been gluten-free? It can take a while for the diet to "kick in".

CathyG Rookie

I've only been gluten free for about 5 days. I've decided to cut out lactose and refined sugar as well. But it's all very early days - I'm sure it'll take quite a while for my body to get used to it.

I have a number of other symptoms as well as the tiredness, but the tiredness is a killer. My biggest symptom at the moment is dizziness, which is pretty debilitating actually. I never thought dizziness was anything important till I realised that I couldn't drive a car or run my business :(

Thanks for your reply - it's interesting to see that gluten affected your energy levels so much. Hopefully after a while of a gluten free diet I may be able to gain even a small amount of energy back.

txplowgirl Enthusiast

Hi there, i've been gluten free almost 2 years now. I' have had symptoms of chronic fatigue syndrome since the age of 7. According to my rheumatologist i've had Fibromyalgia, gluten intolerance and RA since that age. I am just starting to have energy from what you would call on the scale of 1 to 10, with 10 being the highest. I was at an 8 1/2 most of the time with the fatigue. I was low in vit d, b-12, magnesium, etc. My adrenal glands wasn't doing so well either. So, with some help from something I got at the healthfood store called Adrenal Factor, then i'm taking 5000 units of vit-b12, 5000 units of vit d, 500 mgs of magnesium, etc. Be sure to get all your vitamin levels checked and your thyroid.

I am finally starting to get my energy back. I'm about at a 3 1/2 to 4 now.

You're only about 5 days in, so it will take a while to start feeling better.

Anyway, hang in there. I hope you get to feeling better

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Hidden Gluten in distilled vinegar

    2. - Manaan2 replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Hidden Gluten in distilled vinegar

    3. - BIg Nodge replied to BIg Nodge's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Opinions on my test results/symptoms

    4. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

    5. - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,856
    • Most Online (within 30 mins)
      7,748

    Dawn McDonald
    Newest Member
    Dawn McDonald
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Manaan2, I was on Miralax for several months after I crushed three vertebrae and fractured my hip.  The compression fractures of my vertebrae affected the Vagus nerve that stimulates digestion and intestinal movement, peristalsis. Miralax just didn't relieve the constipation I was experiencing at all.  Nothing budged.  I tried Milk of Magnesia (magnesium oxide) which pulls water into the digestive tract, and found that rather harsh and dehydrating.   Bad idea. I was already taking thiamine in various forms, Benfotiamine, TTFD (tetrahydrofurfuryl  disulfude), Lipothiamine and Allithiamine.  Click on my name, then Activities in the pull down menu to get to my blog to learn more about my journey with thiamine.   Since we need more thiamine when we are physically ill and emotionally stressed, I decided to focus on TTFD,  Benfotiamine, and magnesium l-threonate.  Within a week of increasing my doses a bit, my constipation was gone.  It took several more months to heal the compressed nerve damage.  For pain, I take a combination of TTFD, Pyridoxine B 6, and  Cobalamine B12 which together have an analgesic effect.  I can't function with pharmaceutical pain killers, besides they cause constipation.   Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Yes, I did just stop the Miralax, but I wasn't on it as long as your daughter.  Yes, there's a difference between adults and children.  Yes, my circumstances were different than your daughter's, but thiamine deficiency does affect the nerves and the brain.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function (which activates the Vagus nerve and controls digestion).   I recommend you visit Dr. Chandler Marrs' website, hormonesmatter.com.  Dr. Marrs worked with Dr. Derrick Longsdale, a pioneer in thiamine research, specifically with children and autism spectrum disorders.  She has been very helpful to me when I reached out to her.  She would be better able to guide you about your daughter's care. https://hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/#google_vignette Do stay in touch, please.  You can start another thread or personal message me any time.  My heart goes out to you, your husband, and especially your daughter.   Namaste
    • Manaan2
      @knitty kitty  The information you've provided is invaluable!  I have a lot more homework to do before we make the official switch but you have significantly increased my hope that we can get her off Miralax (she started at 3 years old and is almost 8!).  This weekend my husband and I plan to solidify all the details for a start point, then adjust as we go along.  I realize that everyone's body is different, then there's also the fact that she's a child but just out of curiosity if you don't mind sharing and if you'd rather not, no problem at all-how long did you take Miralax before switching and when you switched, did you just completely stop the Miralax or was there a period where you did Miralax and the supplements?  I plan to research that piece this weekend but just curious what you did.  
    • BIg Nodge
      Scott, thanks so much for the thoughtful replies. My doctor did actually just re-order thyroid labs to see what is going on with my TPOs. I agree that will be interesting information.  I think I know the answer to this, but as far as the biopsy . . .. that would be quite conclusive as far as celiac goes, but a negative result would not rule out NCGS, correct? Does NCGS also cause damage to the lower intestine/leaky gut?  I appreciate the thought that I should be open-minded to other causes. I did not have dysautonomia on my radar, so I will look into that. From a quick scan at the potential symptoms it seems like almost anyone could convince themselves they have it, very broad! I can see why that is a tricky one to diagnose. I did also show low vitamin D, I'm in New England so that is somewhat common. I have a memory of low iron on some lab result as well but I can't find it, so I'll look into that. My cholesterol is high too, so working on that.  While the initial adjustment was tough, I have actually adapted fairly well to going gluten-free at home. The tough part for me is I love eating out and traveling, so that has been a challenge. I suppose if the answer ends up being NCGS then I could maintain a mostly gluten-free diet but also experiment with the occasional splurges. Snowboarding just doesn't feel right without a beer in the lodge . . ... cider is just not the same!  Thanks again.  
    • Dawn Meyers
      I did some research and found out that vaccines put preservatives, sugar alcohols and metals in them. Which I have a intolerance too.  I was supposed to do testing to find out metal's I was allergic to because I can't  wear jewelry of any kind. Mayo felt I had other allergies also.
    • Scott Adams
      For individuals who have experienced negative reactions to the flu vaccine, there are alternative formulations that may reduce the risk of allergic responses. Traditional flu vaccines are typically produced using egg-based methods, which can pose issues for those with egg allergies. However, there are now several egg-free options available, such as cell-based and recombinant flu vaccines. Recombinant Vaccines (e.g., Flublok Quadrivalent): These are produced without the use of eggs and are grown in insect cells, making them a suitable option for individuals with egg allergies. Cell-Based Vaccines (e.g., Flucelvax Quadrivalent): These vaccines are also egg-free and are produced using mammalian cell cultures, which can be a safer alternative for those with egg allergies. Other Considerations: If you have had a reaction to a specific component of the flu vaccine (e.g., gelatin, preservatives, or antibiotics), discussing your medical history with a healthcare provider is crucial. They can help identify vaccines that exclude these ingredients. It's important to consult with an allergist or healthcare provider to determine the safest option based on your specific allergies and medical history. They can also provide guidance on pre-vaccination testing or desensitization protocols if necessary. Also, at @trents mentioned, could you be getting hidden gluten in your diet? Do you eat in restaurants? If so, this could be why you still have high gluten antibodies.
×
×
  • Create New...