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What Symptoms Other Than Gi Did You Have.....

NE Mom

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NE Mom Apprentice
NE Mom
Posted

I was dx'd with Fibromyalgia two years ago but am now thinking that I might have a gluten intolerance. I've read a lot about the GI issues that go with Celiac but I'm wondering about other common symptoms. My main symptoms have been overwhelming fatigue, joint pain, overall soreness in all limbs, brain fog, cold intolerance, feel like I'm 40 years older than I am, GI issues which seem to arise with any dairy consumption, tingling in limbs, and RLS.

I'm curious what symptoms overs have experienced and how many have been dx'd with Fibro??

Thanks,

Sam

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GottaSki Mentor
GottaSki
Posted
I was dx'd with Fibromyalgia two years ago but am now thinking that I might have a gluten intolerance. I've read a lot about the GI issues that go with Celiac but I'm wondering about other common symptoms. My main symptoms have been overwhelming fatigue, joint pain, overall soreness in all limbs, brain fog, cold intolerance, feel like I'm 40 years older than I am, GI issues which seem to arise with any dairy consumption, tingling in limbs, and RLS.

I'm curious what symptoms overs have experienced and how many have been dx'd with Fibro??

Thanks,

Sam

I had all the same symptoms you listed. I was dx'd with Celiac Disease in March of this year and Fibromyalgia in October after over 20years of these symptoms worsening with no diagnosis. My first months of gluten-free brought improvement to my bloating and other digestive issues, but none of the Fibro symptoms improved until just recently - I'm 9 months gluten-free and am supplementing with vitamins B, D, Calcium, Fish Oil, Malic Acid and some Essential Aminos.

I believe that the Fibromyalgia was a result of long term malnutrition from Celiac Disease. I'm 44 and have likely been Celiac my entire life.

ciavyn Contributor
ciavyn
Posted
I was dx'd with Fibromyalgia two years ago but am now thinking that I might have a gluten intolerance. I've read a lot about the GI issues that go with Celiac but I'm wondering about other common symptoms. My main symptoms have been overwhelming fatigue, joint pain, overall soreness in all limbs, brain fog, cold intolerance, feel like I'm 40 years older than I am, GI issues which seem to arise with any dairy consumption, tingling in limbs, and RLS.

I'm curious what symptoms overs have experienced and how many have been dx'd with Fibro??

Thanks,

Sam

I've had ongoing fatigue, joint and muscle pain, and brain fog. All of which are improved after a little over a month gluten free.

Ahorsesoul Enthusiast
Ahorsesoul
Posted
I believe that the Fibromyalgia was a result of long term malnutrition from Celiac Disease. I'm 44 and have likely been Celiac my entire life.

I agree!!!

jerseyangel Proficient
jerseyangel
Posted

I have not been diagnosed with Fibro--although I still experience muscle pain that is more or less constant.

As for the Celiac, in addition to digestive symptoms I had tingling and numbness, feelings of "burning" from the inside on my feet and face, anxiety, depression, fatigue, severe dizziness (from the anemia), brain fog, general achiness, and something that I can only describe as clumsiness/unsteady on my feet.

lizard00 Enthusiast
lizard00
Posted

Overwhelming fatigue and pounding headaches were my two longest symptoms. The best we can figure, my pregnancy triggered my celiac, and I went gluten-free when my son was 2 1/2... so, I figure I caught it very early on. However, toward the end of my gluten filled journey, I was starting to have a lot of muscle aches, and somedays I felt beat up from the inside out. I think I was probably headed down a bad path, and thankfully caught a lot of stuff before it happened.

I am 2 years gluten-free, and I rarely have headaches, my fatigue is 100% better, and the unknown muscle aches are a thing of the past. I have a 4 yr old and an almost 4 month old who has just recently decided to sleep in a bed, and on some of my worst days, I still feel better than I did two years ago before I kicked the gluten. Hang in there! :)

NE Mom Apprentice
NE Mom
Posted
  • Author

Thank you everyone for your replies.

I also think my second pregnancy may have somehow triggered my Fibro (if that is really what it is). I was unable to eat multiple during this pregnancy because they made me sick, my daughter was born with a low birth weight and a anaphylactic allergy to dairy. See now has a total of 11 food allergies that we know of with the possiblity of more. My health has never been the same since giving birth to her.

The tTg results were all normal but I'm still waiting on the AGA IgG. A week of gluten free eating has me feeling better than I have in a couple of years until the last two days. Now I have to figure out if it is the roasted almonds from Walmart or the Honey Kix than may have contibuted to the debilitating fatigue the last two days.

Sam

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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