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. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    2. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    3. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    4. David Blake
      - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      My question I have proposed to the FDA through their website is why Prescription and OTC drug manufacturers are not required to list what binding ingredients were used to bine the drug? They list this on Capsules which are made of cellulose but not on pills? As it stands I or my pharmacist must contact the manufacturer to find out and my list is long from...
    5. nanny marley
      - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748
    emoryprose
    Newest Member
    emoryprose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.