Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Anyone With Endometriosis?


livelifelarge24

Recommended Posts

livelifelarge24 Enthusiast

I am looking for any celiacs out there that might have endometriosis also that I can chat with. Going gluten free completely changed my world for the better for a few months. Well obviously forever, but what I'm trying to say is that my endo symptoms and issues have gotten so much worse since. I am struggling a lot with it and would love to find someone to chat with and ask a few questions!


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



Celiac.com Sponsor (A8-M):



Adalaide Mentor

It's only been 5 months gluten free for me so I doubt I have any useful insight. I was diagnosed with endometriosis 13 years ago although I'm certain that it had a serious impact on me since my early teens. Since going gluten free in January I haven't had any relief of my symptoms associated with my period. As a matter of fact I'd say it's worse, even if only because I have gone from as regular as clockwork to having my period every 2 1/2 to 5 weeks. (Usually right around 3 weeks though.)

AmyWrites Newbie

Only thing that helped my endo was getting that surgery (laparoscopy I think it's called? Sorry, english isn't my native language) and cutting away sugars and caffeine.

GFreeMO Proficient

I've had endometriosis since I was 19. I am in my late 30's now. Going gluten free did help me too for a long time but now there is no difference. It's hard because glutening pains sometimes feel like endo pains. I also think that when glutened, it can make all of the endo scar tissues inflammed and thats why we don't feel better. We feel both glutening and inflammation from the endo.

I think celiac is one of endos sister diseases. Endo being an autoimmune disease and celiac being one too.

Read this article.

Open Original Shared Link

Adalaide Mentor

I suppose I should have shared what works for me to help me get through the first day or two. (Which is particularly on my mind this morning since I got to wake up in the wee hours of the morning feeling sort of like a gutted fish.) While I've cut back on my dairy intake significantly, I've found that milk helps a lot. I probably drink about a gallon over the course of the first two days of my period, always chocolate but that's just personal preference. I also read long ago that cinnamon is some sort of natural remedy that will help, something to do with reducing bleeding. I have yet to successfully adapt my snickerdoodle recipe, so instead I'll have things like french toast or hot chocolate with cinnamon. Cinnamon pills I'm sure can be perfectly useful but I much prefer foods in their natural forms. Last thing I do, is for two days I get license to eat whatever I want. (Gluten free of course.) So if I decide that I absolutely can not live another moment without an entire pint of Ben & Jerry's, I have it. I'm sure my waist would have something to say about this but sometimes a girl just needs ice cream.

GFreeMO Proficient

I suppose I should have shared what works for me to help me get through the first day or two. (Which is particularly on my mind this morning since I got to wake up in the wee hours of the morning feeling sort of like a gutted fish.) While I've cut back on my dairy intake significantly, I've found that milk helps a lot. I probably drink about a gallon over the course of the first two days of my period, always chocolate but that's just personal preference. I also read long ago that cinnamon is some sort of natural remedy that will help, something to do with reducing bleeding. I have yet to successfully adapt my snickerdoodle recipe, so instead I'll have things like french toast or hot chocolate with cinnamon. Cinnamon pills I'm sure can be perfectly useful but I much prefer foods in their natural forms. Last thing I do, is for two days I get license to eat whatever I want. (Gluten free of course.) So if I decide that I absolutely can not live another moment without an entire pint of Ben & Jerry's, I have it. I'm sure my waist would have something to say about this but sometimes a girl just needs ice cream.

I'm glad that you found something to help!! I have a casein allergy so that wont work for me. I usually drink hot lemon water with sugar and that seems to help me some. Also a hot bath and just relaxing with the heating pad.

I like your comparison to a gutted fish! Thats exactly how gluten makes me feel.

Michelle1234 Contributor

When I was younger I had endometriosis really bad. Drs were no help. As I got older I had really heavy, long (7 days) periods but was able to manage the pain better with Boiron Cyclease. After I got ovarian cysts I started taking DIM Plus and all of a sudden had regular 4 day periods that weren't very heavy. Your mileage may vary but I thought I'd throw it out there.


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



Celiac.com Sponsor (A8-M):



livelifelarge24 Enthusiast

I have said that gluten pains and endo pains can feel so similar! I had to make myself a check list for when I'm not feeling well that helps me differentiate which I'm going through. I wish there was some better hope for us. I can handle celiac - I face that crap with my fighting gloves on. Eat right, take care, I'm fine. But the endo... different story. I feel so hopeless like there's nothing I can do :/

  • 3 months later...
joolsjewels Newbie

What are your endo questions? I have gluten intolerance, endo, and polycystic ovary syndrome. A gluten contamination reaction comes quickly after the offending food is eaten. The symptoms are stabbing pain in the stomach, stomach cramps, diarreah, nausea, body aches similar to the flu. Whereas endo symptoms are more lower back pain, (sorry for the next few) deep pain during sex and sometimes after, diarreha (sometimes bloody) during your period, heavy and prolonged periods. For myself without meds, i will go for a month and a half at a time to the point that i can barely get out of bed. I think the blood clots are the worst. I know that sounds blunt, but you did say you have questions. Lysteda is a great med that is taken the first 5 days to help break up the clots. In turn, it eases the cramping. If you have any questions, feel free to ask. You can even message me about specific info.

pricklypear1971 Community Regular

Well, I probably have it. I was set for a lap and then found out I was pregnant (after a year of trying). I am very, very fortunate that pregnancy "fixed" most of my symptoms - constant pain. I still have very heavy periods, clotting, and sometimes horrendous pain during my period.

What helps me is exercise. A 3-4x a week routine of working out helps the pms (including back cramps) go away.

Also, I have found that my estrogen and progesterone levels are sub-optimal. I have used progesterone cream off/on for years and that helps my pms symptoms/cramping. It also, sometimes, makes my periods lighter.

My nd put me in a combo estrogen/progesterone cream a while back and the cramps started coming back (daily, not pms or during my period) so I stopped it and switched back to my natural progesterone cream. It suppressed the cramps within a month. So, progesterone can help. Just don't add estrogen. I think dr. Lee's theory was that if you level out progesterone, estrogen will level itself but I don't have the book in front of me and haven't had coffee :).

When things get bad I pop ibuprofin (now I use Tylenol) and go to sleep. That was my cure when I was a teenager. I have gotten good at learning how to "knock out" for a quick nap to alleviate pain. Helps me with a glutening, too. Sometimes I don't have the option and so I try to move around or stretch (for endo). For glutening I just try not to embarrass myself. Sigh.

I also think starting thyroid meds helped lighten my periods and reduce pms. So, thyroid may be a contributing factor.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,157
    • Most Online (within 30 mins)
      7,748

    Bronco76
    Newest Member
    Bronco76
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Can you link the 2019 JAMA study? When you say "massive doses of D" how large are you talking about? 
    • Yaya
      Thank you.  I'll run it by him on my next visit.  
    • trents
      Yes, Yaya, it is possible to develop vitamin D toxicity with overdosing since it is a fat soluble vitamin but the dosage needed to get to that point is much larger than was thought years ago. Years ago, doctors were very cautious about D supplementation but more recently the medical community has relaxed their caution as it proved to be overdone. Individual practitioners are not always up to date on everything and sometimes are operating on dated information.
    • Yaya
      Kitty, Be careful with massive transfusions of D, it's dangerous per my cardiologist.  Your note made me confirm and he's right.  I found this article called:  Too much vitamin D may harm bones, not help - Harvard Health The study was released on Dec 1, 2019 · and appeared in the Aug. 27 issue of JAMA which found that, compared with people who took moderate amounts of vitamin D, adults who took large amounts daily not only didn't see additional gains in bone density, but in some cases ended up worse off.  I especially must be careful because, like many Celiacs, I have low bone density.  I have been taking Prolia shots for about 5 years.   Also there is such a thing as vitamin D toxicity per my cardiologist.  That's why he carefully monitors my #s and wants me to raise levels slowly.   Take care.  
    • knitty kitty
      Oh, @Yaya! Five years???  How awful for you to suffer so long! My Vitamin D came up in a matter of months.  High dose Vitamin D has been used in the past to correct rickets and is a safe method to correct Vitamin D deficiency.   I took 1000 IU several times a day, every day for several weeks.  I ate them like m&m's when I was severely deficient.  My brain craved them.  I felt so much better afterwards.  On maintenance dose now.  Yes, the craving went away as my level reached 80-95.   Ask your cardiologist about supplementing with.Benfotiamine.
×
×
  • Create New...