Fibromyalgia and Sleep problems caused by Gluten Intolerance

[Mitch694]

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? 

 

 

[ccrew99]

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]

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]

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.

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

 

Take care! 

[Mitch694]

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]

 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]

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.