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

gluten-free Since May, Chronic Fatigue Better, Now Fibromyalgia


Mia H

Recommended Posts

Mia H Explorer

I have been gluten free since may. And my chronic fatigue is better, I no longer feel my afternoon "leadsuits" that I used to have daily. Now I get them when I get glutened.

I also gave up dairy and that seemed to help me with the morning achy, puffy, stiffness part.

Chronic fatigue was the #1 symptom that lead me here. Now that the fog is lifting a little I am recognizing symptoms that where there all along but hidden by the fatigue.

I have joint pain without swelling, stiffness, 12 of the 18 tender points, poor sleep, tired upon rising.

Any advice?? I thought these symptoms had improved when I went dairy free also. A month or two ago my girls got ear infections and we got poor sleep. Could that have just brought on a flare up? and if so, any way to calm it down?

I'm also 16 week pregnant. I had heard these conditions improve with pregnancy. But can they get worse?

Thanks for any advice,

Mia


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



Celiac.com Sponsor (A8-M):



marciab Enthusiast

I was diagnosed with CFS/FM back in 1990 and I have gotten rid of several of my symptoms too. Pretty cool, isn't it ?? :)

I'm still working on the fatigue, but I was glutened (CC) from eating out from Sept till the first of Nov..

But, about the FM, I find that losing sleep will cause my fibro to hurt every time. And your husband is not going to like this idea :lol: , but I have to stay warm while I am sleeping too. Socks, thermals, and gloves if it is reallly cold... :P Two pairs of each if I am still cold. :P

Also, I am convinced that omegas have helped my fibro. I can't digest supplements, so I pour flax seed oil, EVOO, grapeseed oil, etc over my foods like stir frys.

There are a lot of OTC sleep remedies, but I don't know what pregnant women can use... Congrats ...

Hope this helps ... marcia

loraleena Contributor

Cut out nightshades - tomato, potatoe, eggplant,peppers. Also get your thyoid checked for hyothyroidism and get your adrenal levels checked. Make sure they check your thyroid peroxidase antibodies. Levels should be under 20. If not this indicateds hashimotos hypo which is common in us celiacs.

mandyann Newbie

Hi Mia-

I don't know if I can offer alot of help but my symptoms are similiar, the joint pain w/o swelling and the stiffness. I did feel much better with my pregnancy but it wasn't until I was in my fourth month or so, and I felt wonderful, much better than I do when I'm not pregnant. My energy came back and the pain was gone. You would think that your pregnancy could bring on a flare up, it is a major stress on the body. I know that everyone is different but hopefully this helps.

Mia H Explorer
Cut out nightshades - tomato, potatoe, eggplant,peppers. Also get your thyoid checked for hyothyroidism and get your adrenal levels checked. Make sure they check your thyroid peroxidase antibodies. Levels should be under 20. If not this indicateds hashimotos hypo which is common in us celiacs.

I did have my thyroid tested up and down many times but it appeared normal. I did have (most likely still recovering from) adrenal fatigue. I had that tested at a naturopath.

I can try to cut out nightshades but the potatoes will be tough. It's hard to get full without gluten and dairy.

I feel like there is barely anything to eat the way it is :( But thanks for the ideas. It helps to have something to try.

Mia

daffadilly Apprentice

Congrats Mia on your pregnancy, I was also going to say cut out nightshades, especially black pepper - It gives me little pains (they hurt) in the finger tips. I also cannot eat potatoes they give me chest pains.

check this out for yourself, but i find that if you cannot eat potatoes a lot of time you can eat corn.

Lundberg rice chips are good & have no cross contamination issues

eat a lot of fruits and veggies with protein foods, good luck

Fiddle-Faddle Community Regular

Pregnancy does something to the ligaments--stretches them temporarily or something like that. That might very well have something to do with your joint pain. Ask your doctor if you can go to physical therapy to learn some safe, gentle stretching exercises to help warm up and strengthen your muscles to help support your poor aching joints. One-on-one instruction is important here to avoid hurting anything.


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



Celiac.com Sponsor (A8-M):



loraleena Contributor

Try sweet potatoes. I slice them,coat them in olive oil, and bake. Yum. Pregnancy can bring on fibro flare or make it better.

Mia H Explorer

Since I was feeling lousy anyway I thought, why suffer and not be able to eat anything, so we went out to eat last night and I had mashed potatoes with butter and sour cream.

Bad move, you never feel so bad that you can't feel worse!

I know I will never try gluten again but once and awhile I have to double check the dairy.

I woke up puffy, bags under eyes, tired like a hang over.

I really don't mind the achy joints and all as much as the lack of sleep.

I have the book "From Fatigued to Fantastic" by Jacob Teitelbaum and I'm going to try to get a sleep aid that's safe in pregnancy. If I could just sleep a couple of good night I really think I would feel a lot better.

Thanks for all the help and support! It helps so much to know I'm not alone!

Mia

CarlaB Enthusiast

Hi Mia. Doesn't your family go camping? Have you been tested for Lyme Disease (by IGeneX, one of the two reliable labs in the country)? It can be a common cause of joint pain and fatigue -- even food/chemical intolerances.

The potatoes last night may have contributed to the joint pain. Seems a lot of people around here can't eat nightshades because of their joints.

Rachel--24 Collaborator

I agree with Carla. Lyme disease is very often misdiagnosed as chronic fatigue syndrome or Fibro. Unfortunately Lyme testing is unreliable. Like Carla said...Igenix is well known to be the best and most reliable lab.

Mia H Explorer

I was tested for lymes by my regular doctor and it was negative.

I'm not a huge camper, I go maybe twice a year and usually in the fall when all the ticks are gone. I hate bugs and I'm paranoid about ticks so I am pretty certain that I'm ok.

How much is it to get Igenix to test? How do I send in a sample?

It makes me feel like I can't trust anything :angry:

Thanks for the tip though, it's always nice to keep thinking of a new possibility.

Mia

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,027
    • Most Online (within 30 mins)
      7,748

    EmmaGraceeee
    Newest Member
    EmmaGraceeee
    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

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.