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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?

:(

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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

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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

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      Welcome to the forum, @shell504! The IGA 401mg/dl is not a test for celiac disease per se but a check to see if you are IGA deficient. People who are IGA deficient will produce celiac blood test antibody scores that are artificially low which can result in false negatives for the individual antibody tests such as the TTG IGA. You did not include reference ranges along with the test scores and since each laboratory uses custom reference range scales, we cannot comment with certainty, but from the sheer magnitude of the IGA score (401) it does not look like you are IGA deficient. And since there are no annotations indicating that the other test scores are out of range, it does not appear there is any antibody evidence that you have celiac disease. So, I think you are warranted in questioning your physician's dx of celiac disease. And it is also true that a colonoscopy cannot be used to dx celiac disease. The endoscopy with biopsy of the small bowel is the appropriate procedure for diagnosing celiac disease. But unless there is a positive in the antibody testing, there is usually no justification for doing the endoscopy/biopsy. Is this physician a PCP or a GI doc? I think I would ask for a second opinion. It seems as though this physician is not very knowledgeable about celiac disease diagnositcs. Having said all that, it may be that you suffer from NCGS (Non Celiac Gluten Sensitivity) rather than celiac disease. The two gluten disorders share many of the same GI symptoms. The difference is that NCGS does not damage the villous lining of the small bowel as does celiac disease. NCGS is 10x more common than celiac disease. The antidote for both is complete abstinence from gluten. Some experts believe NCGS can be a precursor to the development of celiac disease. There is not test for NCGS. Celiac disease must first be ruled out. So, if it becomes apparent that gluten is causing distress and testing rules out celiac disease, then the diagnosis would be NCGS. Hope this helps. 
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