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Vulvodynia And Celiac Disease


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#16 Juliebove

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Posted 18 November 2009 - 11:24 PM

Interesting! My friend suffers from this. Her dad was a celiac. AFAIK she hasn't been tested for celiac but she has been told to change her diet and she refuses to do so. Alas, she has some other medical conditions and each one calls for a different diet. Because of this she just gave up and decided to eat whatever she wants. Sad. but I don't think she's going to change.
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#17 PrincessHungry

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Posted 27 May 2010 - 08:48 PM

Holy crap! I had no idea there were so many people with both celiac and vulvodynia! Sorry to say ladies, but I'm so glad I'm not alone. This had been a nightmare. I just said a bunch of bad words before the word nightmare...I am trying my best to figure out some kind of solution/plan for all of this but it is painfully slow. I was diagnosed with celiac August of 09, had a fibroid removed September of 09 and a few months later my body went crazy. I slowly started cutting foods out and kept finding foods that didn't work but not enough that are safe. The weight loss has been a little scary. I have been following the low oxalate diet and of course staying gluten free but I haven't seen an improvement. If anything, it seems going gluten-free has made things worse! My intestines are constantly inflamed no matter what I eat. AND I get weird reactions on my lips too. They feel like they are super chapped at times or I get a hive/bump/thing that doesn't hurt or itch but it happens immediately after eating something that I can't pin down...when I eat certain foods, my lady parts itch. It's almost instant. I am 99% sure it's sugar. I only eat a few kinds of fruit. When I mention that to doctors they think I've lost my mind.

Has anyone had diet troubles? Any success?
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#18 stef_the_kicking_cuty

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Posted 27 May 2010 - 11:06 PM

Holy crap to the entire subject!!! I had no idea something like this exists. I just thought I was a weirdo. And because of the matter of this subject, naturally you're not talking about it much. Man, if I would have known this 3 years ago, I'd still be married today. Do you know, if there's a good doctor for this in Pennsylvania? I did some research and it seems like most doctors/gynocologists don't even know about this condition or say, it's mentally.

Could there possibly be help in sight???
Wow, I can't even say how relieved I am to give this baby a name. I'm seeing a man for like over a year now and I'm just afraid of even dating him. We are like seeing each other once or twice a month, if. You can't call this dating. I've been excusing it by saying I'm so busy. Luckily he is, too. At the beginning he asked, if I was avoiding him. I'm just so scared of ever having normal intercouse again, because it just plainly hurts. I hate it <_< . I don't know, what to do anymore :o .

Hope for some help here, Stef
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#19 kitgordon

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Posted 28 May 2010 - 09:58 AM

I have had vulvodynia on and off for 27 years. What helps me as prevention is doing 10 -15 minutes of Kegel exercises every day, and taking calcium citrate 1200 mg. Flareups have thankfully become rare, but I do follow the low oxalate diet during a flare and take antihistamines - for me, Zyrtec lessens the pain and duration of a flare. Also increase time with Kegel exercises and up calcium to 1600 mg. Unfortunately, there seem to be many different causes and contributing factors, so what works well for one VV patient doesn't always work well for another, and the doctors are useless. Educate yourself, read everything you can find on it and experiment to find a healing plan that works for you. If anyone is interested, I would be glad to recommend books I found helpful along the way.

I've only been gluten-free less than a week, so I can't say whether that is a help or not, but I do think a connection between Celiac and VV is probable.
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#20 Coolclimates

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Posted 30 May 2010 - 05:47 PM

I was diagnosed with this condition in 1997 and with vestibulitis several years later. I was just diagnosed with Celiac about a month ago. I, too, was wondering if there were any connection between the 2. My pain gets worse if I eat foods with a high oxalic acid content. That is a pretty limiting diet in itself. So when I found out that I have Celiac, that just added to the list of foods that I have to avoid. I feel very frustrated and some of the flours, such as soy flour, nut flours, cornmeal, etc, are a problem for me because of the high oxalic acid content. My pain comes and goes in waves, although I have the vestibulitis all the time. But I get flareups with that, too. It seems like there are some other women who have both of these conditions. Are you also on a low oxalate diet? If so, what kinds of foods can you not tolerate? The worst ones for me are spinach, parsley, beets, rhubarb, dark green vegetables, berries, citrus zest, very spicy foods, tea,peanuts pecans. To a lesser extent, chocolate, other nuts, soy products, fresh pinneaple, cornmeal/grits, sweet potatoes, other herbs.
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#21 Coolclimates

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Posted 31 May 2010 - 03:03 PM

PrincessHungry;
it sounds like the so called doctors who dismiss your vulvodynia as something you're making up are full of crap. Unfortunately, there are a lot of doctors who still have this mentality, especially with women. That it must be psychological, they are overreacting, etc. The best thing to do is to keep searching for a doctor who is more sensitive to your needs and willing to listen and give suggestions. There are several major vulvodynia sites out there (just google the term) and they should have lists of various doctors all over the country (and other countries, perhaps) who are knowledgable in this subject. I had this condition for several years before any doctor could actually pin it down.
I, too, am very sensitive to foods with a high oxalic acid content and this is even more challenging now that I've been diagnosed with celiac disease.
Trust me, I understand your frustration.
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#22 PrincessHungry

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Posted 02 June 2010 - 09:19 AM

The uro-gyno who diagnosed me with vulvodynia

The diagnosis was fairly quick but dealing with other symptoms that are related or unrelated has been difficult. She prescribed imipramine and sent me on my way. Anything that I tried to mention she disregarded as crazy. All the food stuff, weird intestinal stuff, weird lady part pain and itching...she had nothing to say other than, you're nuts. I think the meds have helped but I'd love to take less or even discontinue them. They make me dizzy and my sleep schedule is all messed up. I'm going to try more acupuncture and Chinese herbs. I went to a nautropath but haven't been there long enough to tell a difference yet. I have my fingers crossed.
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#23 bekkaz

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Posted 03 June 2010 - 05:44 AM

WOW this thread shocks me. I am excited to find it. I have been having lots of female issues and have been told I have vulvodynia. I am not sure that I do, I get these horrible flares at times. However the last gyno I seen didn't feel I had vulvodynia. I am getting closer and closer to figuring out what's going on with me. I personally think vulvodynia is a bs diagnosis just like IBS. Okay why are people getting symptoms of vulvodynia! The last gyno I went to see has referred me to a urologist to talk about possible IC intersticial cystits. I have also seen a nautropath who has said almost always IC is linked to a food allergy. The nautropath gave me a IGG test and it all apparently came back negative. This is very interesting all you ladies are having the same issues as I am. I am also off of Birth control stopped taking it due to these flares hoping it would help. I also think there might be a hormonal link to my problems, possibly estrogen imbalance. I could cry reading this the doctors think I am nuts I think.
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#24 Coolclimates

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Posted 03 June 2010 - 07:13 PM

what do you mean by saying that vulvodynia is a bs diagnosis? Can you please elaborate?
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#25 stef_the_kicking_cuty

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Posted 04 June 2010 - 03:51 PM

Hi Rachel,

I know, what bekkaz meant, when she said, it is a bs diagnosis. She doesn't exactly mean, that our pain and our disease isn't real. It is very real. What she means (I think) is, that the diagnosis of vulvodynia (or vestibulitis) is a mis-term kind of, just like IBS a mis-term is. That's what I meant, when I send you the link. I don't know, if you read it yet. It was from that woman, that got diagnosed with vestibulitis and instead got diagnosed with IBS first. I have to come to my point here. What I mean is, that people, who get diagnosed with IBS first, don't really have IBS. They actually have something like celiac disease, but the doctors were so unknowledgeable and didn't see the actual disease. And because they had no clue, that what caused the pain was actually celiac disease, they just diagnosed their patient with IBS. So bekkaz thinking was probably, that while the pain and suffering is very real, the vv diagnoses is probably wrong (in her words bs), because there is an actual disease going on, that doctors have no clue about and that is actually "cureable" like celiac disease, if you do not eat the offending allergens. Does that make sense? If not, I try to explain it in other words.

So bekkaz is right in a sense, but describing it as bs sounds a little harsh.
Hope I could shed some light on this. If I'm wrong, please, correct me, bekkaz.

Have a good evening everyone, Stef
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Next goals:
Results for 2011:
1x PA State Champ (I defended my title in pointfighting) and also again Grand Champion in pointfighting
August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)
gluten-free since 07/21/2004
Shermans Dale, PA

#26 txplowgirl

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Posted 04 June 2010 - 06:45 PM

WOW, I LOVE this forum! I have had Vulvodynia for a long, long, uuugghhh, long time. Dr's told me that I would have it for the rest of my life and there were no treatments for it. Now, I know for a fact there is, for me anyway. I have been gluten free for a little over a year now and I started seeing a difference in about 6 months. There is hope! Just keep to the diet and hopefully you will start seeing a difference.
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Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free


#27 tarnalberry

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Posted 05 June 2010 - 12:45 PM

I would not agree that vulvodynia is a BS diagnosis. Is it used as a dx when a dr can't find anything else wrong, but didn't look for everything? Sure. That doesn't mean it doesn't exist for anyone. Is there an "underlying cause"? Sure. But for at least some people, it's what it is, like saying "you have a cold" and sometimes you really DO have a cold virus, sometimes you don't.

I was dx'ed in 2000, about 9 months before my wedding. It took a little while to get diagnosed, but like with celiac, I never had years of wandering around to doctors with anyone saying it was in my head. I saw a specialist (who was a two hour drive away, until I moved to the other end of the coast, and then was a three hour plane ride away, but I still saw him until my pregnancy). As best I can tell from what I've researched and learned from him, not only are there different subtypes of vulvodynia (which, yes, is a symptom based term, so in that sense it's a catch-all), but sometimes subtypes of the subtypes. For instance, I have vulvar vestibulitis, which is not the only type of vulvodynia, and it seems to have different causes (and no, they're not well understood yet, but you have to describe something that exists even if you don't yet understand it). He noted that some women are helped by a combination of physical therapy, antihistamines, and topical estrogen (which is what worked for me, but it can take a LONG time - for me, I saw improvement after nine months of continued, steady work), some see results from a low oxalate diet (or other dietary change), some from surgery, and some from tricyclics or other approaches. Until they better understand what the different causes are, it is a bit of a shot in the dark, but there are consistent histological signs in women with this "bs diagnosis" that suggest that, while it's not understood, it's also not necessarily a bs diagnosis, even if it is too liberally used without properly ruling out other things. (For reference, the low oxalate diet and the gluten free diet didn't do a single thing for my symptoms.)
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#28 GFE

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Posted 20 August 2010 - 07:02 AM

I have been diagnosed with Provoked Vestibulodynia and am looking for a doctor who specializes in vaginal pain. Emily, did you ever get a name? I would REALLY appreciate any recommendations for vaginal pain specialists in San Diego.

(As a side note in reference to the original post, I also believe I have a gluten intolerance (not celiac, per se) discovered while searching for a cure for chronic tailbone pain.)

I was just diagnosed with Vulvar Vestibulitis yesterday, although I've suspected it for 2 months (and hoped and prayed it wasn't going to be VV).
I love my Gynecologist, but am considering going to a specialist since it seems that many women with VV and Vulvodynia attribute their improvements to getting to a doc that knows the condition well!

Do you recommend the doctor you saw in San Diego? Can you give me his name?

Thank you,
Emily


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#29 GFE

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Posted 20 August 2010 - 07:10 AM

What kind of specialist did you see that led you to the combination of physical therapy, antihistamines, and topical estrogen? I have been diagnosed with provoked vestibulodynia and am looking for options outside of surgery and would like to speak to a specialist in my area (San Diego). I don't know how to go about finding and would appreciate any recommendations. Thanks!


I would not agree that vulvodynia is a BS diagnosis. Is it used as a dx when a dr can't find anything else wrong, but didn't look for everything? Sure. That doesn't mean it doesn't exist for anyone. Is there an "underlying cause"? Sure. But for at least some people, it's what it is, like saying "you have a cold" and sometimes you really DO have a cold virus, sometimes you don't.

I was dx'ed in 2000, about 9 months before my wedding. It took a little while to get diagnosed, but like with celiac, I never had years of wandering around to doctors with anyone saying it was in my head. I saw a specialist (who was a two hour drive away, until I moved to the other end of the coast, and then was a three hour plane ride away, but I still saw him until my pregnancy). As best I can tell from what I've researched and learned from him, not only are there different subtypes of vulvodynia (which, yes, is a symptom based term, so in that sense it's a catch-all), but sometimes subtypes of the subtypes. For instance, I have vulvar vestibulitis, which is not the only type of vulvodynia, and it seems to have different causes (and no, they're not well understood yet, but you have to describe something that exists even if you don't yet understand it). He noted that some women are helped by a combination of physical therapy, antihistamines, and topical estrogen (which is what worked for me, but it can take a LONG time - for me, I saw improvement after nine months of continued, steady work), some see results from a low oxalate diet (or other dietary change), some from surgery, and some from tricyclics or other approaches. Until they better understand what the different causes are, it is a bit of a shot in the dark, but there are consistent histological signs in women with this "bs diagnosis" that suggest that, while it's not understood, it's also not necessarily a bs diagnosis, even if it is too liberally used without properly ruling out other things. (For reference, the low oxalate diet and the gluten free diet didn't do a single thing for my symptoms.)


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#30 HappyGrandma

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Posted 20 August 2010 - 09:31 AM

What good posts we should keep this going. I too suffer and have tried everything. gluten-free has helped but only alittle. I find that all the creams Rx's only make it worst. Thanks,
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