Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      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.

Vulvodynia Anyone?
0

12 posts in this topic

Ok Ladies,

I was diagnosed with celiac in August 09. September I had a large fibroid removed from my uterus. My doctor thinks surgery may have tipped off the vulvodynia. In some ways, I've had vulvodynia-like symptoms for about a decade but it for sure got worse once I went gluten-free and had surgery.

Since the oh so fun symptoms started I have eliminated a lot of foods from my diet and nothing has gotten better. I started taking imipramine about 1.5 months ago and haven't seen any improvements. Granted I wasn't at 40-50mg for that long but nothing good has happened.

At my recent doc appt I asked if there was anything else I could be doing, should be doing, someone I could talk to, etc. and she said, "Nope, I think you've got it all covered"...hmmmm....so I started looking online for more info and found the low-oxalate diet.

Has anyone tried this? I don't know what to eat. I feel like every list I find is different which is what happened with the interstitial cystitis diet.

Does anyone have a good, trustworthy link? I have no idea what I'm doing but I'm determined to figure something out! I am so stinking hungry it's driving me nuts. Any help would be appreciated :)

0

Share this post


Link to post
Share on other sites


More to share...

I finally tried white rice and it seems to be ok. Brown rice was a big NO but white seems to be better. How interesting!

But I have a different question.

For those with vulvodynia...and those with other food weirdness, how fast do you know you've eaten something bad or wrong? How quickly do you react? Depending on the food/issue, I react to vulvodynia foods almost immediately. I talked with my favorite physical therapist today and she thought that very was weird. She didn't say she didn't believe me and she didn't look at me like I was crazy (which is why I love her) BUT she thought it was strange because "the food hasn't even reached the stomach yet". She wondered how that was possible. Does anyone else have a super fast reaction to food?

0

Share this post


Link to post
Share on other sites

My friend has this. She has showed me the recommended diet for it. But she hasn't tried it. Reason being she has food allergies and if she eliminated all the other foods on top of what she already can't eat, her diet would be extremely limited. She is supposed to have some sort of surgery to help, but I don't know the particulars on that.

0

Share this post


Link to post
Share on other sites

I have this condition (was diagnosed in 1997) and definitely have a problem with foods high in oxalic acid. For me, when I pee it burns really bad, and often I burn for hours afterwards. It also causes a lot of external itching and irritation.

0

Share this post


Link to post
Share on other sites

Oh my gosh, I am sooo glad there are ladies talking about this!!! Help is WELCOME!

I started getting infections "down there" very very shortly after I had a major blow-up of Celiac Disease in 2009. I was in the ER for dehydration and a mess of other problems that we now know where celiac disease-related, and then a day or two later I was back because of an infection down there that had become so large and PAINFUL that they had to lance and drain it, then stuff it with gauze. :o Oh my gosh I nearly died of pain!

Anyways, since that time in 2009 I've had these infections recur. Because I haven't had any health insurance or Medicaid or anything like that, I wasn't able to see a GYN about it. I took antibiotics (which usually makes my gut problems worse) when it wouldn't get better and I was afraid of ending up in the ER again.

So I just got Medicaid and the 1st doctor appointment I made was for the GYN. I saw him on Monday and he was very nice and sympathetic but didn't have any answers for me. :unsure: Prescribed more antibiotics and some diflucan (sp?) to kill the yeast in my whole system (after the antibiotics lead to another wicked killer yeast infection). Guess I should mention that I never had a yeast infection prior to the Celiac Disease full-blown attack in 2009. But now they are common and difficult to treat with (messy) ointments and such. :(

From my personal experience and the timeline in how everything has happened between vaginal problems and Celiac Disease, I'd not be the least bit surprised to find out that they could be directly related. On the other hand, my problems with yeast infections are timed about the same and I do wonder if (based on other research I've been reading) yeast could cause the Celiac reaction which then causes the vaginal problems.

Read here to catch my drift :) :

Thanks for being willing to write about this. B) I'm feeling somewhat relieved not to be alone. It's such a personal thing so not like you just talk about it easily. :ph34r: There are no "significant others" in my life and I'm a virgin, but even the thought of a honeymoon makes me cringe. :blink: Oy! Anyways, suggestions are appreciated! Thank you, Ladies!!

http://www.uihealthcare.com/depts/med/obgyn/patedu/vulvarvaginaldisease/vestibulitis.html

0

Share this post


Link to post
Share on other sites

I'm so glad this is up!!!

My Celiac symptoms have only been severe since about December 2009. It was over my Christmas break at home that I tried a new bath soak and it started an infection. Since then, any gluten is completely intolerable, and the infections return within a week of starting the medications for them. I read the link you posted and I'm wondering if this could be related, and if there is a way to find out.

I am returning to gluten starting in July to have an upper endoscopy in August because even after the diet change, I'm barely feeling 50%. Will this, or the biopsy included, show a Candida infection?

Any advise or links would be greatly appreciated.

0

Share this post


Link to post
Share on other sites

I've had problems with chronic yeast infections since I was 13 years old. In some cases, I would have infections for months without being able to get rid of them. It was hell. I'm wondering if that's one thing that caused me to get vulvodynia. I'm assuming the constant yeast infections can be another symptom of celiac disease?

0

Share this post


Link to post
Share on other sites

I have IC issues and Vulvodynia issues. The vulvodynia issues magically started going away over the last year or so. Not sure why other than I started supplementing with Vitamin D. After so many years of torture I hardly let my mind even wonder why I just say thank you to fate. The gluten-free attempt I'm making now SEEMS to be helping my bladder. Today I left the house to do one errand and decided, spur of the moment to get on the highway and go 40 minutes to Whole Foods, not sure where I might find a bathroom. That is UNHEARD of for me. So I def think Gluten issues affect the bladder and there is no doubt in my mind they can affect Vulvodynia, joints, etc. I can't prove it of course but I sure wouldn't doubt it. I intend to stay gluten-free forever. It's hard but just being able to have the freedom to get on that highway without the urgent bladder feeling was something I would never trade for the old comfort foods I loved.

0

Share this post


Link to post
Share on other sites

I posted this article awhile ago, but I thought it was worth posting again as it is related to this topic (see below). I tried the low-oxalate diet with some success; however, after reading this article it make me think about when I had a lot of flair ups and they were almost always gluten related...I always thought it was because I cheated and ate something high-oxalate (i.e. campbells tomato soup). Today, I can eat gluten free tomato soup without a vulvo flare-up...for me the gluten was the problem not the tomato. If only I had learned this 10-15 years ago...I could have avoided all those ob/gyn appts. I have not had a flare-up in months and the only time I have any problems is when I eat something that should have been gluten free and wasn

0

Share this post


Link to post
Share on other sites

Wow, that is interesting (the article). I figured there was some connection between vulvodynia and Celiac. I also really think there must be a link between celiac disease and chronic vaginal yeast infections/candida.

0

Share this post


Link to post
Share on other sites

Hi Everyone,

I found this forum while reading the low-oxalate website and have found it extremely helpful.

I was recently diagnosed with Vulvodynia/Vestibulitis and have been reading everything I can get my hands to learn more about what's wrong with me. When this started about a year ago my Gyno told me nothing was wrong with me. Since then, my internist has helped me identify the problem, but I do not know of a "specialist" to go to and see to find out more. The doctor that my internist referred me to received AWFUL reviews online, so I was nervous about going. I decided to try another gyno in hopes that they would know more than my old one, but my *new* gyno told me there was no such thing as a Vulvodynia specialist. She does, however, "believe" that I am suffering and prescribed biofeedback PT, but other than that she didn't seemed too interested in helping me.

I live in NYC and from what I have been reading online it seems that there are indeed specialists in this area, however I don't know which one to contact. Does anyone on this forum have any suggestions on doctors in the NYC area that specialize in Vulvodynia, etc AND/OR physical therapists for biofeedback therapy? I am at a loss and my current doctor is not helping me with my search to find a specialist.

Thank you very much in advance. All of your comments have been very useful and I plan to begin the lo-oxalate diet ASAP, as well as trying other remedies suggested.

Thank you!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      102,669
    • Total Posts
      914,345
  • Topics

  • Posts

    • Japan (Tokyo And Kyoto) Gluten Free
      i would  tend to agree with your mom and that comes from more than  30 years in and out of Japan. the  quality of the produce, meat and fish tends to be much better than the US  becsaue it gets to market  much faster and becasue there is a demand  for quality  above the demand for low price.  As it was pointed out, this  has  nothing to do with gluten.    There  are  alot of things you can  eat  in just about any restaurant  but there are things to learn like onigiri -- rice balls,  are seemingly innocent  but  90% of htem contain wheat starch.  most larger  grocery stores and  department store basements  you can  get  gluten free soy sauce. ---  most  chefs still assume that  soy sauce is soy  so never  take anyones  word for it when it comes to soy sauce. Of al the mixed  salads at  family mart, 7-11 and lawsons  only the gobo salad was  safe. good luck    
    • Gluten free backing food
      We are prepared for earthquakes at home, in our car and at work.  That means keeping tins of sardines, gluten-free cereal bars,  SPAM, nuts, chicken, fish, rice, etc. in our earthquake kits.  I have to go through it every three to four months to rotate out some of the foods (e.g. cereal bars).  I mark it in our planner.  It works for us.  Tasty?  Appetizing?  I bet my kid will be thankful to have food to eat in the event of an emergency.  
    • Blood sugar, hunger, celiac
      How much fat are you consuming?  Going lower carb and not adding in fats can make you hungry.   So, do you know that Type 1 diabetes is strongly linked to celiac disease?    I would ask your doctor for a GAD antibodies test to rule out type 1.   https://celiac.org/celiac-disease/celiac disease-and-diabetes/ http://www.celiac.nih.gov/CDandDiabetes.aspx   I basically eat to my meter and that translates to a Low Carb High Fat diet.  Keeps my doctor happy with my lab results! 
    • Lower left abdominal, left pelvic & other random pains
      VERY good point cyclinglady, very good point!!!!
    • Even gluten-free Foods Triggering Reaction After Initial Glutening?
      I was glutened in July.  Badly.  I have NO clue as to what got me.  I suspect two things 1) a gluten free store- brand, product that might have been mis-labeled and 2) a prescription generic medication (contacted the manufacturer to confirm a gluten-free status but got the old liability statement of no guarantees).  Both items were NEVER consumed by my gluten free hubby who acts as my canary.     I probably got glutened again by eating out while on vacation even though I only at at restaurants recommended by other celiacs.  The rest of the time I was at my parent's house and I have a dedicated kitchen there for us.   Who knows?  But I was sick with anxiety, tummy issues, vomiting, the works.  It was strange since anemia was my original symptom and I really did not have tummy issues at the time of my diagnosis.  So, celiac symptoms can evolve at least for me!  Six weeks after my first sign of a glutening, I was tested by my new GI because I was not getting well.  He thought I had SIBO or bile duct issues. I asked for celiac blood testing.    Turns out it was gluten all along!   During my glutening, I became lactose intolerant again, could only eat stewed foods because everything hurt to get through my digestive tract.   I was a basket case for three months.    Did I mention new problems resulting from my glutening?  Hives, itching, vomiting, passing out and tummy aches almost daily.  Anti-histamines helped.    My GP thinks I am her most "allergic" patient.  Except it was more like a histamine intolerance or a mast cell issue not allergies.   Who knows?  The hives eventually resolved as I healed from my glutening.    I refuse to test the two items that were suspect.    No way!    Three months later, I got dairy back.  Six months later I am eating gluten free anything....without any issues.  I also do not take any meds (except for Armour Thyroid) , supplements, eat out and I avoid even processed gluten-free items.  But, I feel great.     I suppose that I will eventually slip up and get glutened again.  But I am working hard not too.  I like feeling well.   So, really look to your diet.  I bet you just keep getting glutened.  Stick to whole foods, follow the FODMAP diet and wait.  Wait.  Wait.    
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      59,686
    • Most Online
      1,763

    Newest Member
    Rene53
    Joined