Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
Hi girls,
Thought I'd post this as a new post. I was getting frustrated because docs weren't listening (see other post, asking what next?) and then I had my husband go with me to the doctor as my HEALTH ADVOCATE. He asked questions, and basically said: help her, she's in constant pain and on her bad days it's really bad.
Well, I got a referral to a rheumatologist...remember that endo is often seen with other auto-immune conditions? Well, she did a million tests, I thought maybe I had arthritis, but got a VERY VERY awesome diagnosis: VITAMIN D Deficiency. She also strongly recommended I try to remove GLUTEN for a couple weeks.
(Asked me to try gluten free 2.5 wks ago, and today was just read the vitamin D results)...
LADIES, I've done some literature research, and I came across a study where women with endo were asked to try a gluten free diet. 75% of the women in the study saw a DECREASE in pain. The other 25% didn't see a change. I know people have brought up this topic before, but they usually talk about this with the endo diet which is just too darn restrictive for my taste. They also often say you need to go gluten free for like a month.
UM, yeah, when I went gluten free, I felt relief within days - 3 to 4 days. I'm not 100% pain free, and I am doing other things which could be reducing the pain but I'm SOOOOOOOOOO hopeful that I have to post here. I also had a very stressful day after I started going gluten free so I cheated and had pizza the next day - and the pain returned. I'm now gluten free (since the pizza day) for 6 days and I haven't been crazy about it (I still ate fried fish with breading - so sue me!).
So here's the crazy thing about the whole gluten thing. I've read up on it now, and what happens if we are gluten intolerant is that our small intestines end up clogged with gluten particles or something and then our body tries hard to fight the foreign matter. Um, yeah, our reproductive organs are in the same area!!
Also, the vitamin D deficiency is a common symptom of people with gluten intolerance - the body is trying so hard to fix things that it can't process vitamins properly in digestion. My doc even accused me of not eating enough dairy - but I drink milk EVERY day and eat cheese, yogurt, you name it. So I get my vitamin D, but my level was super low.
I'm so excited. I'm not saying this is the end-all-be-all for me, but it gives me HOPE. Ladies, never give up and fight hard to get the help you need. Try the gluten thing, or the health advocate thing, or everything in between.
Feeling very good today - for the first time in a long time I feel HOPEFUL that my pain could be reduced to a manageable level. Imagine that!
Thought I'd post this as a new post. I was getting frustrated because docs weren't listening (see other post, asking what next?) and then I had my husband go with me to the doctor as my HEALTH ADVOCATE. He asked questions, and basically said: help her, she's in constant pain and on her bad days it's really bad.
Well, I got a referral to a rheumatologist...remember that endo is often seen with other auto-immune conditions? Well, she did a million tests, I thought maybe I had arthritis, but got a VERY VERY awesome diagnosis: VITAMIN D Deficiency. She also strongly recommended I try to remove GLUTEN for a couple weeks.
(Asked me to try gluten free 2.5 wks ago, and today was just read the vitamin D results)...
LADIES, I've done some literature research, and I came across a study where women with endo were asked to try a gluten free diet. 75% of the women in the study saw a DECREASE in pain. The other 25% didn't see a change. I know people have brought up this topic before, but they usually talk about this with the endo diet which is just too darn restrictive for my taste. They also often say you need to go gluten free for like a month.
UM, yeah, when I went gluten free, I felt relief within days - 3 to 4 days. I'm not 100% pain free, and I am doing other things which could be reducing the pain but I'm SOOOOOOOOOO hopeful that I have to post here. I also had a very stressful day after I started going gluten free so I cheated and had pizza the next day - and the pain returned. I'm now gluten free (since the pizza day) for 6 days and I haven't been crazy about it (I still ate fried fish with breading - so sue me!).
So here's the crazy thing about the whole gluten thing. I've read up on it now, and what happens if we are gluten intolerant is that our small intestines end up clogged with gluten particles or something and then our body tries hard to fight the foreign matter. Um, yeah, our reproductive organs are in the same area!!
Also, the vitamin D deficiency is a common symptom of people with gluten intolerance - the body is trying so hard to fix things that it can't process vitamins properly in digestion. My doc even accused me of not eating enough dairy - but I drink milk EVERY day and eat cheese, yogurt, you name it. So I get my vitamin D, but my level was super low.
I'm so excited. I'm not saying this is the end-all-be-all for me, but it gives me HOPE. Ladies, never give up and fight hard to get the help you need. Try the gluten thing, or the health advocate thing, or everything in between.
Feeling very good today - for the first time in a long time I feel HOPEFUL that my pain could be reduced to a manageable level. Imagine that!
I tried giving up gluten when first diagnosed. I lost a lot of weight, but didn't notice a difference with endo.
I am also vitamin D deficient, but I think most people who live in my region of the country are! I never noticed a difference when I was taking the supplements, but I'm sure I should get back on that.
I have noticed a difference cutting out processed food!
I have read a lot about vitamin D deficiency and chronic pain...I actually had mine tested some years back as a possible cause of my chronic headaches/migraines. The doc said my D levels were the lowest he'd ever seen in his life...Although I do contribute some of that to living in the pacific northwest and me being a homebody.
Anyway, great to hear something is helping and thanks for passing along the info too about going gluten-free.
I went gluten free a year ago because I was having digestive issues and my doctor suggested it. I noticed a HUGE difference. I am now completely gluten free and feel SO much better. And that whole time I had endo on my bowel too! I think sometimes it's just a matter of separate issues that can aggravate endo (and vice versa), or even the connection of autoimmune issues can be to blame.
But anyway, my point is that I'm really happy that you've discovered this. I know that when I did that, my interstitial cystitis diet and pelvic floor therapy (all of which are obviously treatment for issues other than endo directly) my quality of life improved dramatically, and I really hope that you experience the same thing! I also think that it's really good for us mentally to have something that we can control about our health and how we feel!
Stay strong with the diet! It's a tough habit to break at first, but it gets a lot easier as you go!
I wanted to provide an update. My period started yesterday. Typically I feel horrible. Drum roll please....I feel AMAZING. Really really good. I typically crash on or before my period, out of gas, feeling pain in near my ovaries or upper abdomen (I blame surgery blowing the endo or scar tissue)...but I don't feel it this month.
It's still only one month but I remain super hopeful.
I agree that it is sort of getting easier although I am also craving cookies and things. In truth, I am not 100% gluten free. I do cheat a little each day...and I am still feeling amazing!!
I'd love to start another thread about gluten free products. :-)
I am going to keep the gluten free diet going. Have you tried gluten free pizza? I want to try it and don't know who has the best.
Some restaurants make even better ones.
Here is a link:
http://againstthegraingourmet.com/
I went GF after my Stage IV endo diagnosis in Jan. 2012. I have sort of brought gluten back into my life :) in the last few months and have not noticed any bad effects.
I used to think that when I would cheat and eat gluten I would feel tired and brain foggy.
But now that I've brought it back, I don't notice those symptoms.
So not sure if it was all in my head in the first place. Or if something has healed.