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

Extremely Personal........females Only!

Mahee34

By Mahee34
in Related Issues & Disorders

Recommended Posts

Mahee34 Enthusiast
Mahee34
Posted

I know this is a little bit akward for some people, but, every since I've been diagnosed with celiac disease intercourse has been incredibly painful. Does anyone else have this problem. I've tried lubracants, even talking to my gynocologist and she isn't very helpful, maybe she just doesn't know the disease. Any help or support at least?

:(

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

I haven't noticed this problem personally, but I don't doubt that it could be related. If you have malabsorption and your hormone levels are skewed, you may be experiencing this because of a drop in a certain hormone level. I would ask your gyn. to check your hormone levels via blood work,

I've heard that sometimes in women with celiac disease that progesterone levels can become dangerously low, and this can also contribute to unexplained fertility and such. It's worth checking out.

Are you on hormonal Birth Control, like the pill or anything with hormones?

cgilsing Enthusiast
cgilsing
Posted

I don't remember where I read it, but I have heard that it is common for women with Celiac disease to also have problems with endometriosis and cysts. I have had both and it can definatley be painful. You might want to ask your doctor if this is a possibility.

frenchiemama Collaborator
frenchiemama
Posted

Is the problem related to dryness? Maybe you should check into sjogren's syndrome.

Also, when you talked to your gyn did she/he suggest having your hormone levels tested?

Guest nini
Guest nini
Posted
I don't remember where I read it, but I have heard that it is common for women with Celiac disease to also have problems with endometriosis and cysts.  I have had both and it can definatley be painful.  You might want to ask your doctor if this is a possibility.

<{POST_SNAPBACK}>

oh yes, I forgot about that... I have had surgery for endometriosis and polycystic ovaries... this is EXTREMELY PAINFUL!

tarnalberry Community Regular
tarnalberry
Posted

I don't know if it is related, and if it is, the gluten-free diet ought to help, but you might consider googling vulvodynia or vulvar vestibulitis. (The later is a subset of the former.) If you switched to gluten-free foods that are high in oxalates, and are oxalate sensitive (a few women with that problem are), that could be causing a problem.

skbird Contributor
skbird
Posted

This is something I've been in denial about myself. I am going to a new gyno next month to see if I have endo myself. I have horrible periods, hormone problems relating to my cycle, lots of discomfort, etc. I was reading an IBS site the other day because I get bad IBS these days when I ovulate (as opposed to when my period starts, like most women with this problem) and I keep getting references to endo. This past year I have had 5 phantom bladder infections - meaning they weren't infections, just felt like them, and it's not intersitital cystitis as my pH is fine, etc. My doc thinks it's endo. Yuck.

I also have read about a high incidence of endo with autoimmune disorders. Joy, joy.

Stephanie

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

Celiac.com Sponsor (A8-M):


elonwy Enthusiast
elonwy
Posted

I'm having the thing with the bladder infection that isn't actually a bladder infection. Its been driving me crazy. And I've been having the pain and dryness. Dammit.

I'm waiting til after my next period, because I was on so many antibiotics and stuff after my endoscopy that I'm waiting to see if everything resets ( often bladder and yeast infections clear up after a period by themselves because your body kinda resets itself).

I had such a bad yeast infection I had fissures which is one of the most horrible things ever.

I totally hope no guys read this stuff.

Elonwy

frenchiemama Collaborator
frenchiemama
Posted
I had such a bad yeast infection I had fissures which is one of the most horrible things ever.

<{POST_SNAPBACK}>

Ok, that totally made me squirm in my chair! You poor thing!

LianneD Newbie
LianneD
Posted

I have had the problem with discomfort and dryness. I had no idea it might be related. I am on gluten-free diet but do not have a positive diagnosis. First blood test positive second was borderline. the M.D. wants me to come back after 2 mothes to retest. :(

Mahee34 Enthusiast
Mahee34
Posted
  • Author

Sheesh.

Can't we ever feel normal? I mean isn't it bad enough that we have this celiac disease but we have to have all these other issues too. I almost forget what it feels like for my stomach not to feel weird or for my body not to ache...thanks for the support though everyone....hopefully we'll figure out ways to fix what ales us.

as for the guys reading this, i know they didn't make it past my first post if they did! ha

Jen H Contributor
Jen H
Posted

Hi Mahee,

I had those same symptoms this past year. Before I was diagnosed with celiac disease, I had an ovarian cyst which needed to be removed. While the doctor performed the surgery, he discovered I had endometriosis. I was getting terrible cramps during my period, headaches, backaches, and intercourse was pretty painful. Since the surgery, some of my symptoms have subsided. I think it would be a good idea to talk with your ob/gyn.

:) Jen

Guest nini
Guest nini
Posted

does anyone else get the big "D" right around their period? For years I have noticed this "phenomenon", I've asked my gyn's about it over the years and always get some vague answer about the normal hormonal fluctuations that cause "D"... ????? I wish it would STOP!

frenchiemama Collaborator
frenchiemama
Posted
does anyone else get the  big "D" right around their period? For years I have noticed this "phenomenon", I've asked my gyn's  about it over the years and always get some vague answer about the normal hormonal fluctuations that cause "D"... ????? I wish it would STOP!

<{POST_SNAPBACK}>

Yes, for the last few years.

Mahee34 Enthusiast
Mahee34
Posted
  • Author
Yes, for the last few years.

<{POST_SNAPBACK}>

what's the big "D"

frenchiemama Collaborator
frenchiemama
Posted

D = diarrhea

Mahee34 Enthusiast
Mahee34
Posted
  • Author
D = diarrhea

<{POST_SNAPBACK}>

ha i didn't realize it had its own nickname!

jenvan Collaborator
jenvan
Posted

my gastro issues also seem to get worse around period time. too bad we can't turn those on and off like a switch!

skbird Contributor
skbird
Posted

I get spasm, cramping and constipation or other IBS symptoms starting at ovulation. That is what is making me wonder about endometriosis, that plus the horrible cramps I get as well (down my legs even!) and other problems. The weirdness with my bladder lately is what's really getting on my nerves. Really glad I'm going in to see a good gynecologist now.

Yeah, no kidding, as if gluten wasn't enough!

Stephanie

cgilsing Enthusiast
cgilsing
Posted
I get spasm, cramping and constipation or other IBS symptoms starting at ovulation. That is what is making me wonder about endometriosis, that plus the horrible cramps I get as well (down my legs even!) and other problems.

I've had a lot of endo problems and I always get the leg cramps too! Most people don't know what I'm talking about with those! They suck!! You should really think about seeing your gynecologist about those cramps. I used to get them so bad that every month I would lay on the bathroom floor only getting up long enough to throw up. I had surgery for the enometriosis and they decided give me this medication that put me in menopause (at 20) for 6 months. It really is a crappy experience (hot flashes, mood swings, and to top it off your boobs shrink!! :blink: ), but in the end it's been 5 years since I've had any severe pain. It's really a good trade in the long run.

frenchiemama Collaborator
frenchiemama
Posted

When you guys talk about getting cramps in your legs, do you mean cramps like charlie horses? During that time of the month if I move wrong I get a charlie horse; feet, legs, back wherever.

cgilsing Enthusiast
cgilsing
Posted

With me it's sortof just a dull aching in my thighs that almost feels numb and tingly sometimes. I wish I knew what caused it, it only happens when I'm having really bad cramps. The funny thing is my husband complains of something similar when he is hung over.....I just tell him to try having really bad cramps at the same time! :lol:

frenchiemama Collaborator
frenchiemama
Posted
With me it's sortof just a dull aching in my thighs that almost feels numb and tingly sometimes.  I wish I knew what caused it, it only happens when I'm having really bad cramps.  The funny thing is my husband complains of something similar when he is hung over.....I just tell him to try having really bad cramps at the same time! :lol:

<{POST_SNAPBACK}>

Oh, ok. So it's more like regular cramps but in your legs? I get really bad cramps, but not like that in my legs. Just tons of charlie horses.

mstrain Rookie
mstrain
Posted

Aren't charlie horses caused by some type of vitamin/mineral deficiency? Potassium maybe? I can't remember - I just remember reading about it in pregnancy books. Maybe there's a decrease in vitamin/mineral during menstruation. Just a guess! Isn't there a pill on the market (Yasmin drsp I think) that contains potassium? Maybe that's why I'm thinking potassium - a mingling of various pieces of data that have nothing to do with each other! :huh:

Jen H Contributor
Jen H
Posted

Hey cgilsing,

Did you take Lupron to help your endometriosis? My gyn recommended that for me, but I was weary about the whole "menopause" thing. How did it work for you?

:) Jen

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. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

      Years ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came...
    2. Rejoicephd
      - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

      Wow what a helpful article!! I am just seeing this now but I hosted a small group of family for Thanksgiving at my house this year and I did some of these things- got a butterball gluten-free turkey, got gluten-free stuffing, had a few gluten-free sides, and a gluten-free nothing-Bundt-cake. I had other non gluten-free things there too for others, and I also...
    3. Scott Adams
      0

      Rainforest Cafe Fined After Child's Severe Allergic Reaction: What It Means for Gluten-Free Safety

    4. marion wheaton
      - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    5. trents
      - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,420
    • Most Online (within 30 mins)
      7,748
    maggie23
    Newest Member
    maggie23
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
×
×
  • 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.