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

Cramping--Calling On My Fellow Celiartians!

eers03

Recommended Posts

eers03 Explorer
eers03
Posted

I am an atypical symptom celiac.  My liver enzymes were up, my weight was down, and I have total villous flattening (that hopefully is improving).  Overall I'm doing much better I think.  However, this past weekend I've started having some low abdominal cramping.  The first night it was followed by several trips to restroom with loose but not "D" movements.  The cramping resolved after.  The cramping was low center left.  This morning, the cramping isn't as pronounced but is low center right.  For the most part I only notice this sensation if I bend over or put pressure on the affected area.  

 

The first episode was a 7 on a scale of 1-10.  This morning is a 4.  I've also noticed a little yellow fuzz on the back of my tongue.  I do eat out occasionally at what I deem to be safe spots.  I never intentionally "cheat" on my diet.  I do occasionally drink gluten free beer or an Angry Orchard and I'm a coffee drinker.

 

Do I need more probiotic?  More water?  How long should I let it go before I should have it checked out?  Any input would be greatly appreciated.

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

Of start a food diary - see of anything pops out at you.

I'm not sure how long you've been gluten-free, but I experienced weirdness for a year and a half. I did have some cramping as my gi tract started working correctly. I'd had bad c, and my body had to learn to have normal bm's. it wasn't always a painless or soothing process. I experienced quite a bit of urgency and cramping, sometimes thinking d would start - sometimes I'd get d after c.

I swear I went through "stages", where I experienced particular weird things - usually lasting 3 months. It must be how my body heals. By the time I'd start to get concerned or decide to do something about it, the symptom would disappear. This was everything from bloating to hiccups....just WEIRD.

Along the way I also developed an intolerance to Junior Mints - the mint flavoring. That was weird and painful, since Junior Mints were my gluten-free crutch. One day, they just made me violently ill, much as you're describing. Still don't have the nerve to try them, or anything else flavored with mint flavoring. Fresh mint is fine....

I also went through 3 months of having outrageous d before my period - prostaglandins. Three or so days before my period would start I'd be in the bathroom for hours. After two months if this I was prepared for month 3 with Imodium. Worked like a charm.

eers03 Explorer
eers03
Posted
  • Author

Thanks for reading and taking time to reply.  It makes me feel better!  Its good to know someone else has had the same issues and is doing fine.  Now that I look back I think I have done the same thing with symptoms.  There for a month or so and then "poof".  I'm sure this is the same thing.  Just good to have reassurance.

gatita Enthusiast
gatita
Posted

How long have you been gluten-free?

 

I've been gluten-free for ten months and the first 8 were a LOT like what you describe... all kinds of strange symptoms and weird tongue and mouth stuff. And cramps and gut things that seemed to have no rhyme or reason.

 

All I can say is it does get better, and takes trial and error and a good food diary and time to figure it out. Except for an occasional accidental glutening, I feel pretty normal now. Knock on wood...

eers03 Explorer
eers03
Posted
  • Author

Gatita,

 

Thanks for reading/responding.  That's good to hear.  I want the rhyme and reason behind everything--thats been my problem.  I'm trying to learn to let go a little bit and accept that things will happen that I cant explain.  Something Im trying to get past is assuming that everything that goes wrong with me has something to do with gluten :-)  I could literally run into a tree as hard as I can and bruise the next day and be all "Oh man, there it is, I'm bruising way to easy!"

 

Glad I'm not alone in trying to explain the unexplainable from time to time.

eers03 Explorer
eers03
Posted
  • Author

Gatita,

 

Thanks for reading/responding.  That's good to hear.  I want the rhyme and reason behind everything--thats been my problem.  I'm trying to learn to let go a little bit and accept that things will happen that I cant explain.  Something Im trying to get past is assuming that everything that goes wrong with me has something to do with gluten :-)  I could literally run into a tree as hard as I can and bruise the next day and be all "Oh man, there it is, I'm bruising way to easy!"

 

Glad I'm not alone in trying to explain the unexplainable from time to time.

I meant to say "passed" instead of "past".  

gatita Enthusiast
gatita
Posted

I hear you! It's very hard not to blame every little thing now on gluten, huh? Like my latest "rash" which I actually figured out was bug bites. Maybe bugs like gluten-free people better...

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

 Maybe bugs like gluten-free people better...

 

Here is an interesting little dealio -- mosquitoes have banqueted on me my entire life -- if I'm around no one else needs to worry because they all hit me.  That is until this year...hope I am not jinxing it by typing, but I have yet to get one bite and my hubs got one!!!!  Just really wondering at this point...but could it be that the bugs liked me better because I was deficient in every nutrient -- we shall see :rolleyes:

GottaSki Mentor
GottaSki
Posted

 

Do I need more probiotic?  More water?  How long should I let it go before I should have it checked out?  Any input would be greatly appreciated.

 

If you are on a good probiotic daily, I would not increase. 

 

More water has helped me many times. 

 

Do you take digestive enzymes?

 

How long have you been gluten-free? 

 

The first months and sometimes year or years can bring all types of gastro symptoms -- mine improved at first then reared their ugly head again -- turns out I needed to remove a few more things to encourage healing.  A food/symptom log is the best next step.

eers03 Explorer
eers03
Posted
  • Author

Gottaski and gatita--

 

You two are funny!  Let's revisit this mosquito thing...  I bet the mosquito's that put in work on us have less gastro symptoms afterward!  Thats why they flock to us--"Target identified, no bread here".  They are flying high!

 

To answer your questions, ski...  I do not take a probiotic regimen.  I take Vitamin D and that is all.  It was the only deficiency I had in January.  Well, other than my bone density.  I try to make yogurt smoothies with frozen blueberries and raspberries occasionally throwing in pineapple or a banana.  It's sporadic though.

 

Water I go back and forth with...  It absolutely helps but I'm better at drinking it sometimes than others...

 

Here's my question....

 

I do have Outback, Chic Fila, or Bob Evans almost weekly...  I always order gluten free and do my best to ensure no CC but what is the probability that I'm still getting it anyway...?  I'm afraid to ask now that I think about it...  Might be a weak spot in my diet...

 

I was diagnosed in November of 2012.  Total villous atrophy.  Blood and Biopsy confirmed.

notme Experienced
notme
Posted

 

 

Here's my question....

 

I do have Outback, Chic Fila, or Bob Evans almost weekly...  I always order gluten free and do my best to ensure no CC but what is the probability that I'm still getting it anyway...?  I'm afraid to ask now that I think about it...  Might be a weak spot in my diet...

 

you are a brave soul lolz 

 

do you eat at the same ones every time?  like they know you and understand about cc?  i am skittish about eating out, but that is just me.  plenty of people on here eat out with no problems but they are not notme haha - seriously, if i felt like i was getting glutened i would look there.  sometimes people aren't as careful as they ought to be whether they don't understand or don't care...

Brandiwine Contributor
Brandiwine
Posted

you are a brave soul lolz

do you eat at the same ones every time? like they know you and understand about cc? i am skittish about eating out, but that is just me. plenty of people on here eat out with no problems but they are not notme haha - seriously, if i felt like i was getting glutened i would look there. sometimes people aren't as careful as they ought to be whether they don't understand or don't care...

I'm with you I don't eat out.

Yes, high chances of CC!

eers03 Explorer
eers03
Posted
  • Author

I can't say that I disagree.  I guess thats why I am looking for verifications.  I needed someone to say "you are a brave soul".  I typically don't have major symptoms but recently had a couple cramping episodes that I'm not used to and it made me start questioning a few areas of my routine.

 

They are the same restaurants.  There is one local establishment that I absolutely trust.  I really think they "get it".  As for the others I mentioned I was really looking for input.  I need to dial it back big time.  I think I got lazy with my CC prevention policies!  

 

Thanks!!!

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.