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

Fibromyalgia and Sleep problems caused by Gluten Intolerance


Mitch694

Recommended Posts

Mitch694 Newbie

Hi, I recently was diagnosed as being gluten intolerant. I didn't go through with the biopsy to confirm as having Celiac Disease and the ttg-IgA test came up negative as well. Due to having classic neurological and digestive issues associated to gluten and being suggested by a doctor, I decided to go off gluten and began to see a massive difference. One of my major issues were terrible fatigue, an oversleeping problem were my cycle would 'magically' shift to morning hours disrupting daily activities. Apart from these, I have constant nausea, joint pain, nerve pain tending mostly to the right side of my body, severe memory and thinking problems ( brain fog - this has not improved yet being on a gluten free diet for about 2 months now) , anxiety attacks and chronic mild migraine headache. Exactly 2 weeks ago, I glutened myself accidently and within 2 days all my health concerns came back full swing.   I want to know whether it takes this long for the symptoms to reside and whether there is any treatment available for the sleep condition as it severely affects my daily life and my career. 

My sister who is 14 ( I am 22 ) has similar issues and her doctor just diagnosed her with fibromyalgia. Could I be having fibromyalgia too induced by gluten..or could this be Non-celiac gluten sensitivity?  Is there a solidified connection between the two? 

 

 


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



Celiac.com Sponsor (A8-M):



ccrew99 Apprentice

This seems to sound like your adrenals have been affected.  There is a significant correlatiom between gluten intolerance and adrenal burn out.  I was sick the last 2 years and was diagnosed with adrenal exhaustion caused by untreated celiac disease. I had and still have the exact symptoms that you describe. I strongly urge you to research adrenal exhaustion and have your adrenals tested.

 

cyclinglady Grand Master

Well....you could still have celiac disease.  Sounds like your doctor only ordered the TTG.  Did you get copies of the lab results?  Did he/she run an IgA deficiency test to insure that the TTG test result is valid?  Many celiacs are IgA deficient.   I say this because I test negative (even on follow-up testing) to the TTG even though it is a good test for celiac disease screening.    I only tested positive on the DGP IgA test yet my biopsies revealed moderate to severe intestinal damage when I was diagnosed.  Your doctor should have recommended a full celiac panel (if not the biopsies) before assigning a gluten intolerance diagnosis just to completely rule out celiac disease (standard GI protocol that you can google), but I am not a doctor.  

So, you are gluten free.  Probably too late to test now.  So, I would advise you to assume you have celiac disease.  That means for most of us it takes six months or years to have symptoms resolve.  Neurological symptoms are typically the last to resolve (if they resolve).  But you are young.  You should heal.  

Your glutening?  I was recently glutened in July (confirmed by my GI via blood panel.    It took me three months to heal.  Two months to be able to eat most foods that were not cooked to death.  Another month to get back dairy (became lactose intolerant again).  Lactose intolerance could be an issue too.  But here is some news -- everyone reacts to a glutening differently.  Everyone heals at a different rate too.   Read our Newbie 101 section.  It will help you navigate the the gluten free world.  It might help speed up your healing too!

Has your sister been tested for celiac disease?  Maybe she should get a complete panel.

Take care! 

Mitch694 Newbie

I got my IgA checked as well along with the TTG. It was normal. I am pushing my family to get my sister tested. I hope to know better answers from her.  I guess 2 months off gluten is too short for my symptoms to go away especially when i got glutened by small amounts between that period. :P

Thanks for pointing me towards the Newbie section. I will surely check it out. 

 

Take care! 

Mitch694 Newbie
8 hours ago, ccrew99 said:

This seems to sound like your adrenals have been affected.  There is a significant correlatiom between gluten intolerance and adrenal burn out.  I was sick the last 2 years and was diagnosed with adrenal exhaustion caused by untreated celiac disease. I had and still have the exact symptoms that you describe. I strongly urge you to research adrenal exhaustion and have your adrenals tested.

 

I did get my cortisol tested. It came up within normal limits though the value was on the border of low.  

ccrew99 Apprentice

 It is very important that you test your cortisol levels 4 times a day bc it fluctuates significantly throughout the day. Also aldosterone levels need to be checked. But yes it definitely sounds like you are affected by gluten and untreated can cause other parts of your body to be effected.   my sister in law had undiagnosed celiac as well and it started affecting her immune system. So you really need to find a good dr that can properly diaganose gluten intolerance so that further testing can be done to see if any other systems are being targeted.  Look up correlations btwn gluten intolerance and other autoimmune diseases.  You will be surprised.

 

Mitch694 Newbie

What kind of a doctor can i go to at best? I live in India especially in an area where doctors are not aware of all the symptoms and the potential effects of gluten. I had a difficult time over the past three years with this illness and honestly i feel like i am lost in it now - with the brain fog and everything. There is no facility with doctors in functional medicine either. 


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748

    Jamie0230
    Newest Member
    Jamie0230
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...