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

Fatigue And Joint Pain


deb08

Recommended Posts

deb08 Newbie

Although on a gluten free diet for 2 full months (glutened accidentally 3 times during those 2 months), I am still experiencing symptoms and right now fatigue is severe accompanied by joint pain. Is this normal? GI improved greatly except for the gluten instances, and heart fluttering and leg cramps from the anemia disappeared, but fatigue and joint pain are more prominent now - like in a flare up, which I have had many times before.


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



Celiac.com Sponsor (A8-M):



dbmamaz Explorer

I think it took about 2 months for my fatigue and pain to go away, and i've heard others say it took longer depending on how sick they were. If you have an apt to see your doctor, I'd be sure to talk to them about it. Did you have fibromyalgia symptoms before going gluten-free? Some on these forums have gotten rid of it going gluten-free, and hopefully they'll chime in and say how long it took. Keep working on getting cleaner, tho - I've heard people say symptoms from being glutened can last 2-4 weeks, so its much harder to know how well you are really responding if you keep getting glutened . . . its a long learning curve.

tarnalberry Community Regular

I developed fibro after being gluten-free (and CF) for a number of years. So if there's anything that could have triggered a flare that you know of, don't discount it. But many other things can be at play, an accidental glutening you're still recovering from, an uncommon manifestation of the flu, a true fibro flare, etc.

MDRB Explorer

I found that it took about a month to start feeing better. Having said that, I still had bad days for quite some time. I still get fatigue and stomach symptoms if I accidentally ingest some gluten.

Bare in mind that some people take a lot longer to heal than others. Some celiacs start feelng better within weeks, others it takes years. I would try taking some immune boosting vitamins like echinacea, a multivitamin and maybe some probiotics, to help you heal quicker.

Also re examine your diet. When I first went gluten free I cut out all processed foods unless they were labeled as gluten free. I have no doubt that this lowered my risk of getting 'glutened' and helped me recover much faster. Also watch out for non food items such as toothpaste and makeup that might contain gluten and NEVER EVER share untensils, cooking surfaces or the toaster.

The symptoms of celiacs can be everything and nothing, joint pain is not an uncommon complaint.

Try keeping a food diary including a description of how you are feeling that day. It may help you pin point other allergies or discover some hidden gluten in your diet.

Good luck, I hope you start feeling better soon.

deb08 Newbie

In reply to the fatigue/joint pain question I posted - I have had "flare-ups" of fatigue with joint pain a couple times a year for 6 years or so. When I went on atkins, not eating their low carb breads, I improved dramatically with every symptom. When doing gluten free I improve but not as dramatically - however, it's been years of being glutened and not knowing that was the problemm, so I probably have healing time to go through. I have been gluten free about 2 months but ate movie theater popcorn with the butter topping 3 times and finally realized it was that that was causing the GI and other symptoms. By the way - I then tried the popcorn without the butter topping and was ok. Checked with the theater and read all the ingredients and could not find ingredient in topping that could be causing my problem, but I will avoid it now.

I have to see an allergist for complete testing because I think there is another issue besides gluten. I get a mild reaction even when eating gluten free pasta or bread so I am thinking maybe yeast.

Today I feel better after being fatigued for 3 months. I am hoping it's not temporary and it will imrove so I can exercise again and the joint pain gets better. Maybe the gluten free is finally kicking in.

home-based-mom Contributor
I have to see an allergist for complete testing because I think there is another issue besides gluten. I get a mild reaction even when eating gluten free pasta or bread so I am thinking maybe yeast.

Today I feel better after being fatigued for 3 months. I am hoping it's not temporary and it will imrove so I can exercise again and the joint pain gets better. Maybe the gluten free is finally kicking in.

Try eliminating anything containing brown rice or rice bran. It greatly reduces the breads and pastas you can eat, but "bran" from any source has become a four-letter-word :rolleyes::unsure::blink::ph34r: for me!

RiceGuy Collaborator

Sure, there might be other intolerances, like dairy for instance.

However, from my experience I'd suggest magnesium, and a sublingual B12 supplement. These two turned out to be what I'd call miraculous.

I'd also suggest avoiding nightshades, as the toxin they have does impede motor nerves.


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



Celiac.com Sponsor (A8-M):



mftnchn Explorer

Added to the food sensitivity issues could be some other possible issues. I wonder about candidida--whether carbohydrates cause flares but not really from allergies. Also various things can cause leaky gut syndrome, which leads to increased food sensitivities.

Also, you might also check out the lyme disease thread on this forum, which has an extensive symptom list as well. The symptoms are similar to celiac, and fatigue and joint pain are major. I have both lyme and celiac; my lyme disease was in remission until I went gluten free. My theory is that gluten was repressing my immune system which "woke up" and began healing, and "found" the lyme.

Another thing to keep in mind is that healing can take a long time. I am a double DQ2; I found research that said that damage can be more extensive and take longer to clear up. I am gluten-free 11 months now, just barely have been able to add a little milk back in, and can't use soy or corn. My fat malabsorption is now normal, but other measures still show poor levels of amino acids, minerals, vitamins. BMs are improving but not really normal yet. Patience is the name of the game with celiac; we all know it takes 1-2 years for the intestines to heal.

Please keep us posted on what works for you.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    2. - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    3. - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

    4. - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

    5. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Blood Test for Celiac wheat type matters?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,136
    • Most Online (within 30 mins)
      7,748

    AmberR
    Newest Member
    AmberR
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • 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.