Lady Parts Question Related To Celiac?

[PrincessHungry]

Believe me, I know how crazy this sounds but starting in December, when I eat certain foods...my vagina hurts. At first it was just my urethra area but now I can't tell what's going on. First it was just with citrus then it became most foods. I went gluten free in August and had a few months of simple diet changes (simple only because I already knew so much about going gluten-free and live in a gluten-free friendly city) but now I'm down to so little and still have funky digestive stuff and weird pain in my lady parts.

Again, I know how crazy that sounds. I've been to an allergist, GI doctor, uro-Gynecologist and my regular doctor and no one has a clue. They all think I'm nuts. The allergist did a bunch of skin food tests and they ALL came up negative. I don't know how but he said it's not an allergy. It's something else he just doesn't know what it is. The GI doc was an ass and had nothing helpful..other than to try oat milk before he realized I was celiac...right. I recently had an ultrasound of my kidneys and blood work done. Kidneys, thyroid, and liver are all fine. So far I've stopped gluten, dairy, fruit, sugar, soy, all preservatives....I think that's it. I eat chicken, salmon, shrimp, eggs, broccoli, carrots, potatoes, red peppers, snap peas and almond butter. This diet isn't perfect as I still have not so fun symptoms and can't control my funky tummy but I don't know what else to eat!

I have an appt with a new GI doc who has a celiac background on Friday which I'm super excited about but I'm wondering if anyone has had a similar experience with funky vaginal/urethral pain.

oh, ps, I had a large fibroid removed from my uterus right around the time of my celiac diagnosis.

Any info would be GREATLY APPRECIATED as I am ready to drive my car off a bridge with frustration.

[Jestgar]

Specific foods? Can you pin down which ones?

[PrincessHungry]

  On 3/10/2010 at 1:11 AM, Jestgar said:

Specific foods? Can you pin down which ones?

Citrus for sure. One day I drank orange juice and immediately felt like I had shards of glass in my urethra. That's what made me look online and I found info about interstitial cystitis. I started following that diet and went to the uro-gyno who totally blew me off and said it likely wasn't IC even though I have many of the symptoms. I've had some success with physical therapy but the diet stuff is killing me. I cut out soy, citrus, salt/pepper/anything spicy, but still ate gluten-free cereal and gluten-free bread that didnt contain those ingredients. Then I cut out beans of any kind but still ate peanut butter until I realized they are legumes...I still had wicked digestive issues (constantly in the bathroom), my lady parts hurt, and I peed all the time! Then I cut dairy and processed grains like cereal but still ate rice and quinoa. Then I cut all grains and only ate chicken, eggs, fish, shrimp and some veggies and almond butter.

Recently, after both my GI doc and regular doc recommended trying to eat grains again because I'm losing wt and hungry all the time...I tried to eat rice again. It was DELICIOUS! I ate brown rice cereal and tried coconut milk. I ate brown rice wraps and quinoa. I might have gone a little overboard. I think I was so frustrated I just ate and ate and ate. I had to stop eating it because I felt so unbelievably sick. My stomach is mighty unhappy and I have a constant barfy feeling. I'm back on the animal and veggie diet but it's taking a long time for the grains to get out of my system.

I thought it was IC, then I thought it was leaky gut, maybe candida...I was on antibiotics for 8 years as a kid and had a lot of yeast infections as a teen/early 20s. I have no idea what's going on but I know I'm not crazy. I just need to find the right doctor who can figure it out.

[mushroom]

Well, if you're crazy, I'm crazy too. But it only happens when I have a UTI. With the very first sip of wine or other alcohol I will get a burning in my urethra immediately It lets me know when I have a problem so I suppose it's a good thing, but weird as all get out. How does it get down there so quickly?

[tarnalberry]

You might look into the oxalic acid content of the foods. Some women experience vulvar pain (and it can include urethral pain) due to oxalic acid crystals. Finding a specialist for vulvar pain is tricky, and you may need to be willing to travel.

(I have vulvar vestibulitis - it started after nine months on and off antibiotics for repeat lung infections.)

[starrytrekchic]

This happens to me, though I don't think it's from foods. I'd say--

Check all of your soaps first. Many of them can cause bladder irritation--which could be made even worse by foods. Get a gentle, non-scented soap. Also check your laundry detergents--again, try unscented ones. Make sure you're not using any sprays or anything scented down there. Have you tried new undies? Sometimes the seams can be in the wrong place--causing irritation.

I'm guessing they ruled UTI and yeast infections.

Limit your caffeine--this can irritate things also. Drink a LOT of water--dehydration will make it worse. Cranberry juice should help. And for now, try looser clothing that doesn't put pressure on your lower abdomen.

[ciavyn]

Don't know if this helps...but I had something similar for YEARS, and all the doctors thought I was nuts. I didn't test positive for anything. As it worked out, I had an irregular bladder syndrome. I had to take men's prostate medication and several other thing, but I eventually got better. It was AWFUL and it hurt like crazy. My point: keep after an answer. I did, and everyone told me I was nuts. But wearing "Depends" at the age of 23 was not happening.

[jerseyangel]

  On 3/10/2010 at 6:04 AM, tarnalberry said:

You might look into the oxalic acid content of the foods. Some women experience vulvar pain (and it can include urethral pain) due to oxalic acid crystals. Finding a specialist for vulvar pain is tricky, and you may need to be willing to travel.

(I have vulvar vestibulitis - it started after nine months on and off antibiotics for repeat lung infections.)

I was having odd "pain" in that area, saw the gyn, (all looked ok) and could not for the life of me figure out what was going on.

I tried food elimination and when I stopped walnuts (which I did eat a lot of), it went completely away and has not returned. Needless to say, I have not had another walnut.

Princess Hungry, maybe also you might try an elimination trial. You never know, it could be oxlates or something else you are eating every day.

[FranW.]

Just a thought. Any chance it is feminine products? There are some I absolutely can't use for that very reason.

[PrincessHungry]

  On 3/11/2010 at 3:12 AM, jerseyangel said:

Tiffany, do you happen to know if walnuts are high oxalate? I was having odd "pain" in that area, saw the gyn, (all looked ok) and could not for the life of me figure out what was going on.

I tried food elimination and when I stopped walnuts (which I did eat a lot of), it went completely away and has not returned. Needless to say, I have not had another walnut.

Princess Hungry, maybe also you might try an elimination trial. You never know, it could be oxlates or something else you are eating every day.

I tried an elimination diet but it didn't work very well. I kept cutting things out but nothing got better and then all food became a problem. I'm down to so little food. I've lost a lot of weight but I eat constantly. It just goes right through me. Someone had a helpful suggestion about looking at low stomach acid something or other...I feel like I'm getting closer but taking two steps back at the same time.

[Coolclimates]

Sounds like vulvodynia. Please looks up this topic, there is more info on this in other forum threads.

[NonHuman]

My suggestion would be to go to a naturalist doctor, or an Eastern medicine doctor, etc. Western medicine has failed us so many times... I have IC and it took forever to find a doctor who didn't just think it was stress, although I believe that was a Western practicing doctor. Hoever! My gluten problem went on for a couple years, and they aaaaallllll told me it was in my head. Then I went to a naturalist, an (I think)Eastern medicine practicing doctor. Whatever it was, it was not needles and thermometers . Anyway, I went in, I was in there for no longer than 15 minutes, and she figured it out.

In other words, even if you are skeptical, it may be worth it to try out a doctor who will listen to your body rather than just look at it.

[glutenfr3309]

when i get dehydrated i feel like i have a uti. i have had many and know instantly when it's a true one. i just try to rehydrate and that usually does the trick.

also, i noticed when i was eating gluten i was always itchy down there. that has disappeared!