Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Lady Parts Question Related To Celiac?

PrincessHungry

Recommended Posts

PrincessHungry Newbie
PrincessHungry
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted

Specific foods? Can you pin down which ones?

PrincessHungry Newbie
PrincessHungry
Posted
  • Author

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 Proficient
mushroom
Posted

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 :lol: 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? :unsure:

tarnalberry Community Regular
tarnalberry
Posted

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 Apprentice
starrytrekchic
Posted

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 Contributor
ciavyn
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

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. Newbie
FranW.
Posted

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

PrincessHungry Newbie
PrincessHungry
Posted
  • Author

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.

  • 2 months later...
Coolclimates Collaborator
Coolclimates
Posted

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

  • 2 weeks later...
NonHuman Newbie
NonHuman
Posted

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 :P. 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.

  • 4 weeks later...
glutenfr3309 Rookie
glutenfr3309
Posted

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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    3. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    5. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,872
    • Most Online (within 30 mins)
      7,748
    Koyanna
    Newest Member
    Koyanna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.