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

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.

  • 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. - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

    3. - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

    4. - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

    5. - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,691
    • Most Online (within 30 mins)
      7,748

    4Nic8ion
    Newest Member
    4Nic8ion
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to 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.