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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Chronic Fatique Syndrome


joolsjewels

Recommended Posts

joolsjewels Newbie

Does anyone have CFS? What are your symptoms? Who long did it take for you to get diagnosed? What other health problems do you have? Have you seen any improvement?

One by one, my dr is ruling out problems and adding minor things to my ever growing list. In researching CFS, it sounded eerily familiar. The symptoms are naerly word perfect.

Please share any experiences. I would surely appreciate it.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



burdee Enthusiast

I do not have CFS, but I have an autoimmune condition, which is often misdiagnosed as CFS. Hashimoto's thyroiditis (hypothyroidism) often manifests in fatigue and depression. Doctors who are not familiar with symptoms of low thyroid function may overlook the possibility of Hashimoto's, which is highly correlated with gluten intolerance.

Have you had recent thyroid test panel, not just TSH, but also free t3, free t4 and TPOab (thyroid peroxidase antibodies)? If not, consider asking your doc for those tests.

Link to comment
Share on other sites
1desperateladysaved Proficient

As I understand it, part of the defination of CFS is that you are pretty much bed bound. I wasn't that, but I decided, that I had Fatigue that was overwhelming me nearly all the time in a chronic fashion. My current guess it that my fatigue comes from not absorbing nutrients well. This perhaps caused my high blood pressure and strained heart and body.

My thyroid was normal just for comparison.

Link to comment
Share on other sites
joolsjewels Newbie

I just had my thyroid tests done last week. They ran a full and complete set of tests. Everything was "normal". I am bed bound. For instance, its takes me hours just to work up the strength to take a bath. I just did that. Now i feel worse than before. I can not get off the couch and it will take hours before i can do anything again. My arms and head feel like lead weights.

Link to comment
Share on other sites
GottaSki Mentor

I have not been diagnosed with CFS, but have been diagnosed with Fibromyalgia. The two are very similar. My research has found nothing that differs in the conditions other than CFS lists fatigue as main symptom and Fibro lists pain as the main symptom. Since both pain and fatigue are subjective I don't see the difference. I can tell you I've been horizontal for months at a time from fatigue.

I firmly believe that Fibromyalgia is caused from the lack of proper nutrients being absorbed in undiagnosed Celiac Disease. When the gut heals - health improves and symptoms disappear.

The fatigue in Celiac Disease can take a very long time to improve. For me, fatigue worsened over the first months post celiac diagnosis. I have had two separate periods of with very few symptoms over the past three years. The first was about six months where I felt pretty darn good. The second was for almost nine months where I felt excellent - better than I had in my ENTIRE life.

How long have you been gluten-free? If it has been some time without improvement, I suggest looking at other possible food intolerances. Do you have joint/muscle pain? Removing nightshades (tomato, potato (sweet potato is fine), peppers (except peppercorn) and eggplant can help reduce pain.

Big HUGS to you...not being able to pick yourself up and do what you normally are able to sucks :angry:

Link to comment
Share on other sites
GFinDC Veteran

Sorry you aren't feeling well. Many people with untreated celiac have vitamin and mineral deficienices at first. Has your doctor tested you for them? A, B, D, K Iron, and magnesium?

Link to comment
Share on other sites
joolsjewels Newbie

I do have fibromyalgia, but this is weakness rather than just pain. Other conditions include: pcos/infertility, sinus probs, migraines, high blood pressure, joint pain, dry eyes, photosensitivity, acid reflux, nights sweats and chills, swelling in my feet and pain without redness, endometriosis, low vit d, low iron, gluten intolerant, lactose intolerant, and msg hates me. My SED rate and ANA mildly elevate occasionally. I also have cognitive problems like seaching for the right word, even very simple words, the inability to spell correctlly (hence the title of the topic-i knew it was spelled wrong, but did not know how to correct it) , and i am unable to do simple mental math computations anymore. I have forgotten most of my times tables even though i have tried several times to rememorize them. My latest headaches are just constant rather than say a migraine which is slamming or pulsating. These do not go away no matter what i take..

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



joolsjewels Newbie

Oh, someone asked how long i have been Gluten-Free-3 1/2 yrs. I am very consistent about it. The only times i have been contaminiated are accidental. About different foods eggplant-the oil makes my stomach sick. I use to eat sweet potatos a lot, but now there is something about them i just do not like.

Link to comment
Share on other sites
GottaSki Mentor

Goodness Gracious - I have many of the same symptoms - don't have infertility or sinus issues and my SED rate has never elevated (when tested) - ANA has often throughout my life. Have you seen Rheumatology to rule out Lupus and other AIs? Are you effected by heat/cold besides photosensitivity - like cold or warm/humid days or during exercise?

Have you tried removing other foods besides dairy and gluten? You might want to research "lectins" or "lectins + autoimmune". Researching those while horizontal led me to the complete elimination diet I completed last year. During the elimination I was healthier than ever in my life - almost all my symptoms improved or disappeared all together - I slept well (only seemed to need about 6 hours) and exercised for hours - was only restricted by my severe heat intolerance. I had a severe flare in March and ended up horizontal once again - I'm currently improving since I returned to my base/safe foods - mental fog has cleared, memory has returned and there are some days I have an hour or two of energy. :) I have been frustrated that I didn't improve more when I returned to my safe diet, but I remain hopeful for more improvement.

One very important thing is exercise. If you can only walk to another room in the house - then do it often. Eventually you'll be able to walk around the block and beyond. Don't overdo - but do move.

Link to comment
Share on other sites
CeliacAndCfsCrusader Apprentice

I was diagnosed with CFS at the age of 24. It took more than 6 months before I found a doctor that would verify "it wasn't in my head". Something I already knew.

I was young, buff and strong as an ox. Within days after coming down with something similar to Mono, I couldn't walk up a flight of stairs without sitting down.

You will find many, many people who can and will relate to your situation. Unfortunately, for me, I had to figure it out for myself.

Here's my two cents:

If you're not sleeping, this is paramount that you get this figured out. Your body cannot heal without proper sleep. I take 50 mg of Doxepin each night and I saw an immediate improvement in my sleep (I was no longer feeling "wired" while trying to sleep).

I made the mistake of "pushing myself" physically and thought I was invinceable. I should've dialed everything back immediately.

I was an "A" type personality, I learned to only worry/think about things that are truly important, not petty issues. I avoided stress and drama, it makes a world of difference. I became more selfish, because I had to be. It's ok, take care of yourself first.

I should point out this happened almost 25 years ago. I was very sick for about 2 years. I limited myself for another 2 or so. Everyone is different, trust your own instincts.

I would occasionally have "flare-ups", but since my Celiac diagnosis 5 years ago, I have had none. I can't draw a conclusive correlation between gluten and CFS, but I always felt it "was something chemical within me", as opposed to arthritis or something.

Good luck. I'd be happy to assist you in any way. Just ask.

Link to comment
Share on other sites
joolsjewels Newbie

CeliacAndCfsCrusader,

Thanks for the info. I currently take ambien and feel like i have been beat up. I have had fibro for about 13 yrs, but it intensified a few years after having walking pnuemonia. Recently, the symptoms stepped up again. In the past year, i had two severe sinus infections ehich require strong antbiotics and steroids to clear up. I am wondering if it is b/c a few drs are stepping me down off some meds. Maybe taking those meds for so long had masked some of the symptoms. Idk.

I have a stress test set up for wed at 9:45am. I hope that the symptoms do show up so the drs see how i feel.

Link to comment
Share on other sites
mushroom Proficient

I currently take ambien and feel like i have been beat up. I

Have you ever tried diazepam for sleep. I took it when I quit smoking, and I have gone back to taking it since celiac. Just 5mg at bedtime, totally non-addicting, and it works like a charm for me. :)

Link to comment
Share on other sites
joolsjewels Newbie

My gp is waiting to change any of my meds until after my stress test and then another sleep study. But i will keep those meds in mind.

Gottaski, you asked about exercise- i was able to walk 4 mi everday until feb. All of a sudden my fingers turned blue. That night i woke up in the worst pain of my lfe and my feet were swollen. Since then, i can only wear flip flops due to swelling and pain. Drs have tested me for lupus, sjogren's, RA, etc. Nothing ever fits completly nor i do test positive.

Link to comment
Share on other sites
kittty Contributor

Have you ever tried diazepam for sleep. I took it when I quit smoking, and I have gone back to taking it since celiac. Just 5mg at bedtime, totally non-addicting, and it works like a charm for me. :)

Diazepam does have a dependance warning on the label.

Link to comment
Share on other sites
mushroom Proficient

Diazepam does have a dependance warning on the label.

But I believe that is for a maintenance/continuous dosage, not just once a day. I have forgotten to take diazepam and still slept :D (well, except for the night when I took it in low light light and it turned out to be lasix, not diazepam -- same size and color) :lol: The john and I were well acquainted that night.

Link to comment
Share on other sites
ciamarie Rookie

I'm not sure what your diet includes -- but I know for me that sulfites and sulfited ingredients in supplements, etc. make me very tired. I can't touch any of the pre-made gluten-free breads due to the starches, and corn syrup and such. In addition all supplements with maltodextrin are a no-go for me, plus I recently quit nightshades too since potatoes seemed to be giving me problems.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,506
    • Most Online (within 30 mins)
      7,748

    NanaA
    Newest Member
    NanaA
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • McNish
      If you're ever in the Peoria IL area - Queen of Squash is 100% gluten-free.   Pekin (just outside Peoria) Whiskey Taco is 90% gluten-free.  The owner's mom is Celiac so they get it!   Just let your server know.   https://thequeenofsquash.com/ https://whiskey-taco.com/
    • trents
      Do you have online access to your celiac panel test results such that you could post them? tTG-IGG is kind of a secondary test. A weak positive in that one could indicate celiac disease but since it isn't as specific a marker as the tTG-IGA it is not real convincing. You could also have NCGS (Non Celiac Gluten Sensitivity) for which there is no test. Celiac disease must first be ruled out. It is 10x more common than celiac disease and shares many of the same symptoms. Some experts believe it can be a precursor to celiac disease. The antidote for both is the same: total avoidance of gluten.
    • powerofpositivethinking
      I haven't been on this forum for a long time, but it was absolutely wonderful during the diagnostic process!  My path for celiac disease diagnosis was the following: -Had normal IgA level, and my only serology positive test was the DGP IgG -Deficiencies in both Vitamins D and K that did not increase at first despite massive supplementation -Diagnosis of fat malabsorption both total and neutral -Diagnosis of severe exocrine pancreatic insufficiency (EPI) -Testing was completed to rule out causes of EPI, and the only one not ruled out was celiac. -Both traditional endoscopy and pill capsule endoscopy yielded negative results for biopsy confirmation, but my GI doctor said that both procedures simply could have missed the damaged spots. -EPI and fat malabsorption resolved after taking Creon for 6 months since my EPI was caused by celiac -23 and Me said I don't have either of the two prominent genes for celiac disease   Remember that you might not have 'textbook' symptoms, but you still may have celiac disease.   Also, I am SO incredibly grateful for this site for all the learning it has allowed me to do. I have a senior dog, and these last few weeks with her were very scary! After two hospital stays, she finally received an IBD diagnosis after having gastroenteritis and pancreatitis. I know that celiac disease is not IBD, however, through reading this site, I learned more about it. I was relieved when I found out she had IBD and not cancer this past Wednesday. I know IBD can be managed thanks to what I've learned here!  So celiac.com, not only did you help me, but you helped my pup too! Thank you ❤️  
    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
×
×
  • Create New...