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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Pelvic Pain Girls?
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6 posts in this topic

Ever since I started having problems with celiac a year ago, and since I was diagnosed 2 months ago I've had pelvic pain. Certain areas hurt to push on and I get a pain that radiates to my lower back and all down my legs. I'm only 17 and I was wondering if it could be related to my celiac or if anyone has had anything similar.

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I have the same thing.  It's part of what led me to the celiac diagnosis.  Our intestines and female parts and bladder are all jammed packed in there.  Feels like period cramps a lot sometimes but it's just the raw and inflamed guts.  

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I have all sorts of weird pains, most of the time nothing bad though. I did notice, however, that the worst of them, a constant pain on my left that seemed to go along my colon or possible fallopian tube, has gone away gluten free. That pain specifically would get aggravated with breathing...rather, when I breathed in the pain would go away, but come back with the outtake of breath. Clearly my diaphragm was pushing on something or the contraction of my diaphragm itself caused some sort of neural pain (I have neuropathy from my celiac disease). Luckily, it was one of the first things to get better for me. Still took at least a month to go away though.

 

That said, I subdivide my menstrual cramps into 2 types. The first one is more dull, and comes and goes in waves, and doesn't usually get bad. The second type is sharp and feels like it will get excrutiating, and I seem to feel it in the muscles surrounding my anus (not the colon, butt muscles) and well as really, really low down on my pelvis, and of course the usual area closer to my ovaries. This sounds like endometriosis to me, but it's infrequent (1-2 times a year max) and it's definitely period related, and is well-treated with an ibuprofen and won't come back 4 hours after the ibuprofen. Never had it looked at medically.

 

I have experienced some spotting since being gluten free, and my period seems to be moving back to a 28 day cycle from a 40~ish day cycle I had for many years.

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Yeah I had an ultrasound and it came back normal I guess, and my doctor said it has nothing to do with my celiac, and prescribed me pain killers for cramps. I just don't think it's cramps, because its not the same kind of pain I usually get while on my period. I've only been gluten free for 2 months though so maybe I just need to give it more time. I just haven't really improved at all.

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Yeah I had an ultrasound and it came back normal I guess, and my doctor said it has nothing to do with my celiac, and prescribed me pain killers for cramps. I just don't think it's cramps, because its not the same kind of pain I usually get while on my period. I've only been gluten free for 2 months though so maybe I just need to give it more time. I just haven't really improved at all.

I have the same pain as cavernio described on my left side.  It coincides with any type of inflammation in my gut, especially C and it also flared up with a UTI.  If you suffer from C, consider probiotics, enzymes, whatever will get things moving and grooving.   I am also going for an ultrasound within the month, but I doubt they'll find anything.  It's fine when nothing else down there is aggravated.

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Yes, I have had pelvic pain for years. I've been to the gyno dozens of times about it, have had ultrasounds and tests, and everything in there is normal. It only recently occurred to me that it could be due to gut inflammation.

 

I've also had really strong pain (like a muscle being pulled and pinched) in what I thought was my uterus/ovaries when I cough or sneeze for years as well, but again, it only recently occurred to me that it might be something else. 

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    • Yes I made it  Welcome Lakme, you've found a great community and resource and I'm sure myself and Ennis won't be the only ones that recognise elements of our own experiences in your account.  In addition to the links Ennis sent you above and the stickied forum faq, I tried putting down some info that may be useful to people just realising they may have an issue with gluten, you can find it in this thread:    Reading your account you do tick a lot of the boxes and perhaps you have found the underlying cause. As that thread explains however, we can't diagnose you, if you want answers you'll need to be eating gluten in order for the tests to work. I know this is probably the last thing you want at the moment, but do read the thread and think about it. You're young and that diagnosis could prove useful for a number of reasons in the years ahead. The longer you leave it, the more of a challenge the gluten challenge may prove.  Out of interest how long since you started on the diet and have you noticed any change in symptoms? You may want to consider keeping a journal, it can be very difficult to track the neuro type symptoms in particular, a written account helps you do that and tracking progress can help with anxiety issues and depression too. I get these too. It's not formally diagnosed, like you I had a physical exam of the eye which failed to show anything, but I believe it to be optic neuritis. It's vastly improved since my diet change, as has an awful lot of other stuff.  So if you're celiac or non celiac gluten sensitive you will hopefully see similar improvements in the weeks, months and even years ahead.  I wish you the best of luck.  Matt
    • Lenbh- I was diagnosed last year and I have wondered that very question. Not too long ago (before kids) I traveled quite a bit. The idea of traveling now with celiac is a bit overwhelming.  I am pretty strict at home to avoid gluten and almost never eat in situations where CC is even possible- and as far as I can tell, I don't really get any symptoms of glutening.   I have definitely heard that it is easy to travel to Ireland with celiac. In fact, many restaurants have 2 menus - a regular and a coeliac. They often cook the food in a separate kitchen as well.  I can't wait to take my kids to Italy and am already thinking "how in the world will that ever work???" I have decided so far that I will do my best, not knowingly eat gluten, and try to buy food in stores or eat in "safe" restaurants -but understand that the more often I eat in restaurants, the more likely it is to be exposed to gluten. I guess it's just a risk I'm willing to take every once in a while so that I can explore the world with my kids.  And, yes, Gelato! At least twice a day while in Italy...:)
    • They do not work for prevention, they might help with getting over the gut pains. But will not stop the antibody reaction, or the damage. At $100+ a bottle your better off investing in Nima or EZ gluten strips and testing foods.   Other thoughts for quick alternatives. They sell microwave cookers out of plastic and silicon for eggs, bacon, etc. Might be worth getting and doing dishes that way. Steam bags and fresh veggies also to avoid pans and pots that could have issues. I been looking at MRE type stuff allergen friendly myself for trips and emergency's. Things get expensive at $6-7 a meal compared to bars or shakes.
    • I would not use these as prevention, but maybe they would help a post-glutening.  In my case, I travel with lactose tablets and digestive enzymes.    When glutened, I become lactose intolerant again.    Would hate to miss out on some gelato.  Do not forget any meds you normally take too.  
    • Thanks for the help! I didn't know Bacardi was gluten-free; that's a great option. 
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