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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,991
    • Most Online (within 30 mins)
      7,748
    ZENken
    Newest Member
    ZENken
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Scott Adams · Posted

      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      New Celiac Mama in My 30s

      By Scott Adams · Posted

      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Celiac and dermatitis herpetiformis has taken Me from Me

      By SusanJ · Posted

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • 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.