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

Ibs And Hysterectomy

amanda.wilson

Recommended Posts

amanda.wilson Newbie
amanda.wilson
Posted

Does anyone else have severe IBS?? I'm on 3 different IBS meds now and I'm even having a complete hysterectomy.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Talk to us, Amanda.  Tell us a little more about yourself and your symptoms.  We are here to listen. :)

GottaSki Mentor
GottaSki
Posted

Welcome Amanda!

 

I had a hysterectomy -- not total -- 12 years ago due to cancer - wasn't diagnosed with Celiac until 4 years ago after decades of numerous symptoms.

 

IBS is a collection of symptoms that are often the same as those with missed or un-diagnosed Celiac Disease.

 

Let us know if we can help :)

IrishHeart Veteran
IrishHeart
Posted

Another "IBS" and hyster-sister right here. Total hysterectomy after years of miscarriages and the early menopause from hell. 

 

Those symptoms you're having may all be celiac-related.  Tell us more!  (that "IBS" I had for most of my life--all gone)

jerseyangel Proficient
jerseyangel
Posted

Yep, IBS all my life and hysterectomy at age 49 following an unpleasant period where I was in peri menopause, my then indiagnosed celiac was shifting into high gear, and I had fibroids, endometriosis and addenomyosis.

Let us know how we can help-- there is light at the end of this tunnel:)

IrishHeart Veteran
IrishHeart
Posted

.......and that light is not an oncoming train, we promise! :)

 

Me, too, P--I was 47 and those fibroids, endo, cysts, etc can wreak havoc with the intestines. Adhesions can make a mess, too.My entire pelvic floor was deeply impacted and I had to have "special PT" to make things right. Not fun. 

jerseyangel Proficient
jerseyangel
Posted

.......and that light is not an oncoming train, we promise! :)

 

Me, too, P--I was 47 and those fibroids, endo, cysts, etc can wreak havoc with the intestines. Adhesions can make a mess, too.My entire pelvic floor was deeply impacted and I had to have "special PT" to make things right. Not fun. 

Not at all <_< I had a similar mess going on in there--the surgeon had to deviate from the planned procedure because the endo had attached itself outside the reproductive area.  Looking back, I wish I had had it done 10 years prior. (the famous hindsight B) )

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

Does anyone else have severe IBS?? I'm on 3 different IBS meds now and I'm even having a complete hysterectomy.

what is the reason for the hyst?  what out comes are being hoped for?  If you haven't tried gluten free, I would give it a go first.

amanda.wilson Newbie
amanda.wilson
Posted
  • Author

I'm 31 and I've been gluten free for almost a year, not only with my food but w/ every products. I've always have had a history w/ my periods I.E. small clots cysts bad cramps. But since the IBS dx the clots are now the size of cutie oranges, severe watery D, and vomiting. I lost 5lbs in 3 days and was extremely weak. With an active 5 year old I can't afford to go down like that.

amanda.wilson Newbie
amanda.wilson
Posted
  • Author

And I'm having surgery 3-13-13 so if I don't respond in a timely manor you know why. Lol

jerseyangel Proficient
jerseyangel
Posted

And I'm having surgery 3-13-13 so if I don't respond in a timely manor you know why. Lol

Best of luck! I hope it all goes smoothly. Let us know how you're doing when you are able:)

GottaSki Mentor
GottaSki
Posted

Best of luck Amanda!

If you haven't been there yet HysterSisters is a great website :)

mushroom Proficient
mushroom
Posted

Best wishes for a speedy recovery!

jerseyangel Proficient
jerseyangel
Posted

Yes-- HysterSisters! That was very helpful to me, thanks Lisa:)

amanda.wilson Newbie
amanda.wilson
Posted
  • Author

My gyno office called this evening to say that BCBS decided to deny my surgery at the last minute :(. If I was a betting gal I would say the person whom denied it has male plumbing! Now they have my doc and I jumping through hoops and dang it my muscles hurt to much to keep jumping not to mention girls w/ big boobs aren't ment to jump!!!

Ok...I feel a lil better now after venting.

GottaSki Mentor
GottaSki
Posted
:(
jerseyangel Proficient
jerseyangel
Posted

Goodness:(. I hope your doctor will be able to get them to cover it.

amanda.wilson Newbie
amanda.wilson
Posted
  • Author

Only time will tell :). I'm just trying to stay positive in the mean it and jump thru their stinkin hoops. Thanks for all help!!'

frieze Community Regular
frieze
Posted

I'm 31 and I've been gluten free for almost a year, not only with my food but w/ every products. I've always have had a history w/ my periods I.E. small clots cysts bad cramps. But since the IBS dx the clots are now the size of cutie oranges, severe watery D, and vomiting. I lost 5lbs in 3 days and was extremely weak. With an active 5 year old I can't afford to go down like that.

What about an ablation?  have you tried anything to suppress ovulation for an extended period of time? have had a D/C?    It makes me very nervous when a doc is going for the hyst in a person so young. 

flowerqueen Community Regular
flowerqueen
Posted

Good luck!  Try not to worry.  I have both IBS and had hysto when I was in my early 40's, it's not as bad as you think.  Let us know how you get on.

amanda.wilson Newbie
amanda.wilson
Posted
  • Author

We have been suppressing ovulation w/ meds but my body isn't handling it very well. It's like it can sense the need to go into a cycle and can't and my bowel become inflame still killing my lower back. But she did an ultrasound and found evidence of a " spongey " uterus so now I go in for out patient procedure thru the belly button ( which the insurance wanted any way) this up coming week.

jerseyangel Proficient
jerseyangel
Posted

Thanks for the update. All the best to you:)

GottaSki Mentor
GottaSki
Posted

Oh Goodness...Hang in there Amanda!

 

Keep us updated...pulling for and praying for you that the upcoming procedure goes well. :)

amanda.wilson Newbie
amanda.wilson
Posted
  • Author

Thanks every1. I was never worried about having the hysto I was kind of looking forward to it lol, I was just wondering if it helped w/ the IBS or was hoping for to much. I know it's not a cure but I would be grateful for a 1% improvement....

jerseyangel Proficient
jerseyangel
Posted

Amanda, many times it can help with IBS symptoms, especially in the case of endometriosis.

I had my surgery after I had been gluten-free for 2 years. My bowel symptoms improved a lot in those 2 years, especially after I identified some additional food intolerances and cut those from my diet.

I can say that the monthly pain and diarreah that always accompanied my period went away, never to return.

I hope you sail through your surgery, recovery, and feel much, much better. I am betting you will:)

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.