How many of you have endo and celiac / gluten or wheat intolerance?

Hi I am going to have a blood test for celiac / gluten intolerance in a couple of weeks. I had a good two months of gluten (and mostly dairy) free and had a lot less bloated, a bit more energetic and clearer mind than usual. When my GP get to know about these he decided to give me a blood test for celiac. So I had to re-start eating gluten at least for 6 weeks before the blood test.

After re-starting the gluten food I had bad reaction of bloating, mouth ulcers, migraines, tiredness, nauseous, joint pains and so on...I get sharp pains around my rib and bloating within a couple of hours of eating gluten. When I eat a lot of bread I get tingling in my mouth and later I feel inside of mouth is swollen and I can easily bite inside of mouth or my tongue.

I am not sure which is endo symptoms and which isn't.

I didn't think I will get celiac result but now I am bit worried I may well possibly get a positive blood test result. I am just wondering how many endo women get celiac or gluten intolerance?

Thanks xxx

4 Replies

  • I don't know if there's been a study on the percentage of sufferers but I think quite a few do. Carolyn Levett has written a book called Recipes for the Endometriosis Diet and she says that many women see an improvement in their symptoms, a reduction in inflammation and reduction of pain levels, increased energy levels and less intestinal problems when they change what they eat and go on the endo diet. I'm no scientist but from what I can gather from what I have read on the subject, endo sufferers find it harder to cope with chemicals/hormones in the body and so they have to be more careful than the average person on what they eat. She gives an extensive list of foods women with endometriosis may be intolerant of and why - she mentions wheat rather than gluten however, but I think they are fairly similar? Evidently wheat has hormones in it and she quotes a book by Dian Mills called 'Endometriosis - Healing through Diet and Nutrition.' You might find these books interesting reading as you have so clearly got an intolerance there. I have changed my diet since being diagnosed with endo and adenomyosis and just feel better in myself and less bloated when wheat, gluten and dairy free. I'm still finding out what foods make me feel worse though; it's a bit of a trial and error at the moment cos I'm new to all of this. I think many women on this site have tried this diet too and found what works for them. Hope all goes well with your tests and all the best with your future treatments.

  • Thanks. I wish endo diet can be one of the treatment in the medical textbook. When I mentioned to one of my GP they didn't like it very much as I lose some nutritious (e.g. dairy free). Gluten free was really good to me so I am really looking forward to going back. Now my tummy is bloated and really hard. Fortunately I haven't started my period after a GnRH injection so my endo pain is still sleepy, even though I have some adhesion pain I can manage.

    I am pretty much given up with hormone treatment as I get really severe reaction. GP stopped my second injection and contacted my consultant (about a month ago but no reply so far :( ). So I am hoping to go back to endo diet ASAP. I think you are one of the person who persuaded me this diet so I am really thanking you curlyjo!


  • I am allergic to wheat, soy, and a whole list of other foods. I also have chronic allergies and sinus problems.

  • Hello Aardvarklps.

    Thanks for your reply

    I have some allergies too. I am going to allergies clinic in June.

    My life threatening allergies is a buckwheat allergies which is uncommon in the UK. It is as bad level as a nuts allergies. When I was doing gluten free diet, I had gluten free flour which had buckwheat in it and had my throat swell up. I had only tiny bit of buckwheat so it went away quite quickly but it was very scary. I was quite ill for a while. As I get older I seems to have more food allergies and intolerance. Or is it coincide endo progressing I wonder...?

    Take care


You may also like...