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

Aches

Pegleg84

By Pegleg84
in Coping with Celiac Disease

Recommended Posts

Pegleg84 Collaborator
Pegleg84
Posted

Hi all

 

Just wondering if anyone else feels horribly achy a few days after getting cc'd? Or if they react to anything other than gluten with aches?

By "achy" I mean your whole body feeling tired, sore, and slow, muscle weakness, though the ache is more in my bones/joints. Slightly tingly and sometimes painful feel/hands/legs. Headache, brainfog, slight nausea. I've had a few incidents of this in the past months, bad enough to make me stay home/send myself home from work because I can barely move/think. It only lasts for a few hours, but that's enough to ruin a day. There's only once that I can trace it back to a potential gluten cc, and that hit 3 days after the fact, with no real digestive problems.

 

Aside from getting cc'd by something in my kitchen or out, what are some other things that might set this off? I've been eating a few more gluten-free baked goods than usual, which could be affecting me (weird flours? xanthan gum?) and the weather has been pretty up and down that could also contribute?

 

Anyway, it's been coming and going, and I want to make it stop! I also don't want to find out I'm developing problems with my joints or anything (arthritis does run in my family). Might have to start up the food log again.

 

Opinions and advice welcome.

 

Cheers!

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

Celiac.com Sponsor (A8-M):


GF Lover Rising Star
GF Lover
Posted

Peg,

 

getting cc'd will set off that immune response.  Not surprising you get achy.  The times that I have been hit had me down for a couple weeks.  That "I got hit by a Mac truck" feeling :)  Starting up the food journal is probably not a bad idea if you suspect other foods might be doing this too.  I recently found out that nightshades were contributing to my joint pain.  Those might be something to look at first. 

 

Hope you find the source.

 

Colleen

bartfull Rising Star
bartfull
Posted

Nightshades? (potatoes, tomatoes, peppers and eggplant) I was starting to get achey too, and I knew the only new thing in my diet was potatoes. I gave them up, and voila! No more aches - for the most part. (My back is still sore upon waking, but I think it's because I need a new matress.)

 

I asked about it a few weeks ago and some of the folks who have problems with nighshades think it is cumulative. In other words, once in a while is OK. After I've been "clean" for a month or two, I'm going to buy a potato. If I can have just one a week I'll be happy.

GF Lover Rising Star
GF Lover
Posted

Barty,  remember when you told me about nightshades?  I was doing great, could hold my coffee cup and everything.  Then one evening I was trying a new pasta, poured on the Marinara and the next morning I couldn't hold the coffee cup.  I'm a believer. 

 

Colleen

bartfull Rising Star
bartfull
Posted

We're chasing each other around the board this morning, Colleen! You just expressed you sorrow for me because I can't have blueberries, may I tell you how sorry I am that you can't have tomatoes? (Tomatoes don't matter to me. I've never liked them anyway except occasionally on a pizza.)

 

It's OK, we have lots of other good things we can eat, right? :)

GF Lover Rising Star
GF Lover
Posted

Heck Yea!  I get Blue Bunny too.  I love it. 

 

Colleen

Pegleg84 Collaborator
Pegleg84
Posted
  • Author

Hmm, that's a possibility. I have been eating more potatoes lately (time of the year) but -like most things lately- been trying not to have them too often. (I'm currently trying to rotate rice, corn, potatoes as my main carb during the week). I've also cut back on other nightshades (or not too many in one meal/back to back).

 

And yeah, I certainly do know how long a little cc can stay in your system.

 

I haven't had any tomato sauce in a little while, partly afraid of that.... Maybe I can be brave and try (try) to go nightshade free for a couple weeks this fall--after I've eaten all the peppers and tomatoes in my garden of course.

 

I also worry about corn, which I still eat regularly

 

Oh, and here we go: as I speak I'm getting a little bit of brain fog and tinglyness going on. I had corn pasta, fish, red peppers, kale, onion, garlic, white radish, and my homemade vegan-parm (ground almonds, nutritional yeast, sea salt). These were leftovers from last night, which I did fine with at the time. I usually make enough dinner to take the leftovers for lunch the next day, but I'm more likely to feel odd after lunch at work. Could that be the cumulative thing kicking in? Or the fact that I've been taking digestive enzymes with dinner at home, but have slacked off taking them with lunch. Gotta bring some to work!

 

Any other ideas?

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

Celiac.com Sponsor (A8-M):


bartfull Rising Star
bartfull
Posted

Yeah, elimination diet. <_< It get's old, doesn't it? Just when you think you've got it all figured out something starts bothering you and you have to go back to basics.

 

I would ditch the nightshades and the corn for a while, then maybe trial corn first because as far as I know, that is NOT cumulative. Then, just to be sure, if the corn seems OK, I would stop it again while you trial nightshades. It's a pain in the neck, but I think it's the only way to find out for sure.

GF Lover Rising Star
GF Lover
Posted

What about an inflammatory histamine reaction.  I don't know a lot about this but I know IrishHeart knows a lot about it. 

 

Colleen

Pegleg84 Collaborator
Pegleg84
Posted
  • Author

I'm already a giant piece of rice...

 

I've thought about doing a proper elimination diet, and winter seems like a better time to do it since there won't be as many fresh veggies around to temp me. I've been mostly ok with corn so far, but you never know (please please please let me be ok with corn... Rice pasta just isn't the same! and the chips!)

 

Ok. I'm going to wait a few weeks to make sure it's not leftover glutening damage, and get back at my strict digestive enzyme intake to see if that helps. My body just has a hard time digesting some things.

 

And I would like to know more about this histamine thing. [paging Irish Heart!]

 

In the meantime, hopefully I won't devolve into a mass of achiness requiring a walker or something (old lady mode).

 

thanks!

IrishHeart Veteran
IrishHeart
Posted

I must be psychic, I swear. :D I just happened to sit down and came right to this thread because I saw Pegleg was asking about aches.

Hi Barty! Hi Coll!

 

Ok, peg

 

(1) I most definitely have the symptoms you describe---exactly!--post glutening. I always have pain anyway (I have osteoarthritis, degenerating discs, blah blah blah  and am rehabbing my muscles still and so, I live with constant low-level pain, but manageable now that I am healing)

 

but if I get hit with CC?? holymotherofpearl. :o Ramps up to 10 for a few days and so, to answer your original question, YES!

 

(2) nightshades may well be the problem, however--there is a cross-over of high histamine foods that bears mentioning.

 

Tomatoes release a histamine response and can trigger joint pain, gut issues, etc.

eggplant--also high hist--So, you may have to do some type of elimination diet (I know, I know--they are a pain in the arse) to root it out.

 

I did this one: Scroll down to low histamine--they give you an explanation and a shopping list.

 

Open Original Shared Link

 

Then, try adding back in the high histamine foods one at a time and see what happens.

I can tolerate a few of them now.

 

My guess is though, you got hit. It should pass soon. Take extra probiotics--those will help with the inflammation in the GI tract--and see how you feel. Sorry, hon--I know it does not feel good at all. Get better soon!!

Pegleg84 Collaborator
Pegleg84
Posted
  • Author

Thanks guys! You're the best.

 

Yeah, it's possible I've slacked off ever so slightly in the past bit and just need to pull myself together a bit.

And yeah, if it isn't back to "normal" in a few weeks, going to have to do a full on elimination. Ergh.... I knew it was coming.

 

I'll definitely check out this high-histamine list. Once I do start an elimination, I'll really be milking you all for advice and whining a lot...

 

Anyway, still feeling woozy and slightly achy, but not too bad (which is good because I'm taking the man out to dinner tonight, which might be my last dinner out for a while considering the circumstances. He's away for a month. The restaurant caters to gluten free and I've never had a problem there before... *fingers crossed*).

 

Now back to the things I should be doing...

GF Lover Rising Star
GF Lover
Posted

I must be psychic, I swear. :D I just happened to sit down and came right to this thread because I saw Pegleg was asking about aches.

Hi Barty! Hi Coll!

 

Ok, peg

 

(1) I most definitely have the symptoms you describe---exactly!--post glutening. I always have pain anyway (I have osteoarthritis, degenerating discs, blah blah blah  and am rehabbing my muscles still and so, I live with constant low-level pain, but manageable now that I am healing)

 

but if I get hit with CC?? holymotherofpearl. :o Ramps up to 10 for a few days and so, to answer your original question, YES!

 

(2) nightshades may well be the problem, however--there is a cross-over of high histamine foods that bears mentioning.

 

Tomatoes release a histamine response and can trigger joint pain, gut issues, etc.

eggplant--also high hist--So, you may have to do some type of elimination diet (I know, I know--they are a pain in the arse) to root it out.

 

I did this one: Scroll down to low histamine--they give you an explanation and a shopping list.

 

Open Original Shared Link

 

Then, try adding back in the high histamine foods one at a time and see what happens.

I can tolerate a few of them now.

 

My guess is though, you got hit. It should pass soon. Take extra probiotics--those will help with the inflammation in the GI tract--and see how you feel. Sorry, hon--I know it does not feel good at all. Get better soon!!

Thanks Irish,  I knew your ears would be burning :D

IrishHeart Veteran
IrishHeart
Posted

Thanks Irish,  I knew your ears would be burning :D

more like a slow, low buzz.... :D

Jwiggles77 Newbie
Jwiggles77
Posted

I hurt all over and medicine doesn't seem to help. I struggle to sleep at night and the drugs the doctor gives me doesn't help. Ppl around me don't understand what I'm going thru and I don't want to be a burden. I'm never gonna figure this disease out and I swear it doesn't help relationships

IrishHeart Veteran
IrishHeart
Posted

I hurt all over and medicine doesn't seem to help. I struggle to sleep at night and the drugs the doctor gives me doesn't help. Ppl around me don't understand what I'm going thru and I don't want to be a burden. I'm never gonna figure this disease out and I swear it doesn't help relationships

 

 

I do not know how long you have been diagnosed and gluten-free, but it may take awhile for the pain in your bones, joints and muscles to resolve.

Make sure you have proper follow up care--blood work, etc.

I feel your frustration  but please, do not despair. My pain levels decreased dramatically after about 15 months gluten-free.

I took a long time for it to happen for me because I am older and had to reverse years of damage, and I had anemia, low D, B-12, folate etc..

Just hang in there. 

Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      @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...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      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...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

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

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • 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.

      By trents · Posted

      Contact them.
×
×
  • 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.