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Celiac And Vulvodynia And Vaginal Issues


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24 replies to this topic

#16 fiore

 
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Posted 11 June 2009 - 01:05 PM

due to the drowsiness it causes, I started with 10mg/day, and worked up to... 50mg/day at my highest doseage. maintenance is more like 20mg/day, and that was only for months I need it.


I am back from the doctor and I am holding a jar of atarax. I am going to start tonight with 10mg and work it up as needed. My doc is a bit skeptical but happy to try. I will go off Elavil, I was taking very little doses of it anyway (10mg). It helps me to know that it's there and I can go back to it if I get a bad episode. No PT and estrace yet, at least until the irritation abates. We'll see what happens... I'll keep you posted. Thank you for the help you have given me. If I get better we'll celebrate. I am not sure how but we'll find a way!
Best, ;)
Fiore
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#17 tarnalberry

 
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Posted 11 June 2009 - 03:00 PM

I can't emphasize enough how the antihistamine was only *part* of the process.
If the antihistamine helps reduce the histamine in the skin, you still need something (like a topical estrogen of some variety, even if compounded specifically for you) to help rebuild collagen in the tissues, and you still need to make sure to reduce the creation of new histamine as much as possible (avoiding excess pressure and allergens be it via food or environmental).
It's soooo natural to want to find *the thing* that will work, rather than the special alchemy that will be your special blend. But it doesn't work that way. :(

I do very much hope, however, that you start to see improvement on the meds, and that they do make some difference, some base for you to continue working from.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#18 fiore

 
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Posted 12 June 2009 - 07:04 AM

I can't emphasize enough how the antihistamine was only *part* of the process.
If the antihistamine helps reduce the histamine in the skin, you still need something (like a topical estrogen of some variety, even if compounded specifically for you) to help rebuild collagen in the tissues, and you still need to make sure to reduce the creation of new histamine as much as possible (avoiding excess pressure and allergens be it via food or environmental).
It's soooo natural to want to find *the thing* that will work, rather than the special alchemy that will be your special blend. But it doesn't work that way. :(

I do very much hope, however, that you start to see improvement on the meds, and that they do make some difference, some base for you to continue working from.


Hello,
Thanks for the post. I know well that, unfortunately, antihistamine is only one piece of the puzzle (if at all). I am just substituing it for Elavil. If it works as well as Elavil but in addition helps a bit with the inflamation, that will be good news and may allow me to move on to the next step.
I took 10mg yesterday and did not make me sleepy. At least no more than Elavil did.
One question on a different topic: Did you have VV first and then found out you were Celiac or the reverse?
I promise I won't bug you again. ;) I will take my meds for a while and see what happens (if anything) in a couple of months.
Cheers,
Fiore
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#19 tarnalberry

 
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Posted 12 June 2009 - 09:15 AM

Hello,
Thanks for the post. I know well that, unfortunately, antihistamine is only one piece of the puzzle (if at all). I am just substituing it for Elavil. If it works as well as Elavil but in addition helps a bit with the inflamation, that will be good news and may allow me to move on to the next step.
I took 10mg yesterday and did not make me sleepy. At least no more than Elavil did.
One question on a different topic: Did you have VV first and then found out you were Celiac or the reverse?
I promise I won't bug you again. ;) I will take my meds for a while and see what happens (if anything) in a couple of months.
Cheers,
Fiore


Don't worry about bugging me at all! :)
It's so hard to do this sort of thing over posts. :D

I found out I was Celiac after I developed VVS. I was on a Yahoo Group (either this one or one that isn't on Yahoo anymore in any similar manifestation to what it was at the time), and there was a woman on there who was quite insistent that none of us had VVS, but we all had some food allergy or intolerance, most likely Celiac disease. *QUITE INSISTENT* Honestly, she really rubbed me the wrong way. She ignored just about everything I said, and stuck to "if you just stopped arguing and went gluten free, you'd be pain free", in a less than pleasant fashion, as far as I could read over an internet post, anyway.

So I tried the gluten free diet, on my own, at home, after a whole metric-crap-ton of research, to prove a random stranger over the internet wrong. The things you won't do that offer a glimmer of hope (even if just to disprove that glimmer of hope!) to get past that damn pain! Didn't do a thing for my vulvar pain, but I learned that those strange intestinal noises (bourbourygmi) were not normal, that I had been bloated... probably all my life (not hugely, but definitely some), and that stool is usually more consistent than mine was - not to mention a couple other random things. (Of course, she was sure I was cheating, since my vulvar pain didn't go away. The 'conversation' got heated, and personal. After three years of being a daily member of that group, I left, and haven't returned.) Two weeks after starting the diet, my doc did blood work to find inconclusive levels while on the gluten-free diet, didn't press me to do a lengthy challenge or biopsy but rather to go by the circumstantial evidence. I did a one-day, massive gluten challenge, felt like crap, and said "there's my evidence, empiric though it may be; I'm at least gluten-intolerant, and now, I'm gluten free".

Eliminating any one thing never really made a big change in my vulvar pain. I think eliminating dairy helped a bit, but mostly because dairy is fairly binding for me, and then things in the whole lower torso get 'tense' and that added pressure creates more histamine and it just gets irritated. And a crappy, random, eat whatevertheheck diet doesn't help. But that's my "princess and the pea" body. :P (My PT, chiro, hubby, etc., and I all get a good laugh out of it. Mine is a sighing laugh. :P :D)
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#20 frogrun

 
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Posted 03 August 2009 - 07:06 AM

I know this post is a little old, but I thought I would through out my two-cents. I was diagnosed with VV in 2000. I tried everything with only mild relief for short periods of time. Recently my Husband and I started using Natural Family Planning to help improve our spiritual life…and part of the process is to charge vaginal mucus. I had a lot of mucus all the time without any signs of infection so they decided it was related to the VV. They gave me a new cream and it seemed to help with the mucus. Even more recently I’ve been working with doctors to identify whether or not I have celiac disease. I was gluten-free for a couple months then back on the gluten for the endoscopy. The past couple weeks my VV has been bad again and the mucus is back. I started to put things together and realized that it wasn’t the cream that had helped, but rather the gluten-free diet. So I started to do some research and found an article written by a doctor in the UK back in 1996 and he identified a link between the two…I thought you might like to read it.

British Journal of Obstetrics and Gynaecology
November 1996, Vol. 103, pp. 1162-1163
CASE REPORTS
Vulvodynia associated with coeliac disease
Christine Costello Consultant (Haematology), J. R. Smith Senior Lecturer (Gynaecology)
Chelsea and Westminster Hospital, London
Case Report
A 44 year old woman presented with a six-month
history of recurrent vulvovaginitis. She complained
of burning, itching and a greenish vaginal discharge.
The symptoms were worse before and after periods
and soreness precluded the use of tampons. There
was superficial dyspareunia with pain on penetration
and splitting of the fourchette even when using
lubricating jelly.
General and abdominal examination was unremarkable.
Genital examination revealed some atrophy
of the external genitalia, inflammation and tenderness
in the perivestibular area with Q-tip swab pressure. In
addition a small ulcer in the anterior fornix of the
vagina, a normal-looking cervix and a retroverted
uterus with normal adnexae were found. High
vaginal and endocervical swabs were taken for
culture and chlamydia detection and colonoscopy and
vulvoscopy were performed.
Vaginal pH was 5, and there was no evidence of
bacterial, viral or chlamydia1 infection. Vaginal and
cervical cytology were normal. Hormone assays did
not suggest that the woman was menopausal.
Colposcopy was normal, vulvoscopy revealed a
small split at the posterior fourchette with no areas of
aceto-white.
Initial management was with advice to have saline
baths, avoid perfumed soaps and avoid wearing
tights. Dienoestrol@ cream (Ortho Pharmaceuticals
Ltd, High Wycombe, Buckinghamshire, UK) was
prescribed in view of the atrophic vagina although
oestradiol levels were normal. The patient was empirically
treated with oral metranidazole in view of the
vaginal pH and observable discharge. Her partner
was referred for genitourinary examination which
proved to be normal. No improvement of the
patient’s symptoms occurred, although the later addition
of DaktocorP 1% cream (Janssen Pharmaceutical
Ltd, Wantapp, Oxfordshire, UK) led to some
Correspondence: Dr C. Costello, Chelsea and Westminster Hospital,
369 Fulham Road, London, SW 10 9NH, UK.
improvement for a few weeks. Relapse then occurred
with tenderness over the Bartholin’s glands and
splitting at the fourchette and lateral to the clitoris.
She was thereafter prescribed Demovatem cream
(Glaxo Laboratories Ltd, Uxbridge, Middlesex, UK),
Sensellem vaginal lubricant (LRC Products Ltd,
Chingford, London, UK) and an oral anti-inflammatory
agent. She improved substantially over the next
two months but again relapsed.
The patient was noted to have mild iron deficiency
with haemoglobin 11.9 g/dL (12.0-16.0), mean
corpuscular haemoglobin 26.4 pg (27-32), serum
iron 5-1 pmol/L (10-30) and saturation 8.49%
(20-55), but oral iron therapy failed either to improve
her iron status or alleviate her symptoms. Further
investigations were undertaken to elucidate the cause
of the iron deficiency. Her periods were not heavy,
and there were no symptoms of gastritis. She was
slim but denied weight loss. She had felt excessively
tired over the previous few months and had noticed
abdominal bloating and excessive flatus. The bowels
moved once daily and the stools appeared normal.
The diet included meat, green vegetables and salads.
B12 level was normal at 446 ng/L (160-800), but
serum folate and red cell folate levels were reduced at
2 pg/L (3-15) and 85 pg/L (150-700). Serum ferritin
(after several weeks of iron therapy) was reduced at
5 pg/L (8-140); serum calcium and serum proteins
were normal. Antiendomysial IgA and antigliadin
IgA antibodies were detected in the serum. These
findings were very suggestive of malabsorption
secondary to adult coeliac disease, a diagnosis confirmed
on duodenal biopsy which showed a marked
degree of villous atrophy and increase in chronic
mononuclear inflammatory cells within the lamina
propria and surface epithelium. Crypt hyperplasia
was present.
The patient began eating a gluten-free diet and
took oral iron and folate supplements. Within a few
weeks her vulva1 symptoms had markedly improved
and by two months had completely resolved. Her
energy level returned to normal and her symptoms of
abdominal bloating and excessive flatus disappeared.
1162 0 RCOG 1996 British Journal of Obstetrics and Gynaecology
CASE REPORTS 1163
Discussion
Vulvodynia or vulvar vestibulitis is a recentlydescribed
condition in which patients complain of
chronic vulval discomfort with acute superficial
tenderness and dyspareunia. The cause is probably
multifactorial; infections with human papillomavirus
and Candida albicans have been implicated in some
patients, dermatological conditions such as lichen
sclerosis and inflammatory dermatoses in others'.
Histopathological findings are consistent with a
chronic, nonspecific inflammatory response and
occasionally metaplasia of the minor vestibular
glands is seen.
Standard gynaecological/genitourinary investigation
of our patient with recurrent vulvovaginal
discharge, soreness and vestibulitis revealed no evidence
of bacterial or viral infection and no evidence
of cytological abnormality. Empirical antibiotics,
antifbngal agents and anti-inflammatory therapy
produced only temporary relief. Correction of her
haematological deficiencies and management of
her coeliac disease produced complete resolution
of her symptoms.
Folates act as coenzymes in the transfer of single
carbon units in reactions involved in DNA and RNA
synthesis. Folate deficiency affects all rapidly growing
(DNA synthesising) tissues and, in addition to its
effect on the bone marrow (leading to megaloblastic
erythropoiesis), folate deficiency also affects the epithelial
surface of the mouth, stomach, small intestine
and female genital tract2, the cells showing macrocytosis
with increased numbers of multinucleate and
dying cells. Iron deficiency may also lead to mucosal
changes but these are usually confined to the mouth
and tongue. It is very probable that the fissuring noted
in our patient was due to folate deficiency and the
pruritus secondary to iron deficiency. The rapid
response to treatment with folate and iron supplements
along with a gluten-free diet suggests that her
vulvodynia was associated with the effects of
her coeliac disease. Iron treatment alone had been
unsuccessful either in relieving the pruritus or in
correcting the iron deficiency since she was not capable
of absorbing iron adequately until gluten was
excluded from her diet. We postulate that the cause of
her vulvodynia was mucosal damage resulting from
folate deficiency. It is very important that all
concerned in the management of vulval disease are
aware of the systemic causes of vulval symptoms.
References
1 Kehoe S, Luesley D. Pathology and management of vulval pain and
pruritus. Cum Opin Obstet Gynecoll995; 7: 16-19.
2 Hoffbrand AV. Megaloblastic anaemia. In: Hoarand AV, Lewis SM,
editors. Postgraduate Haematology. Oxford: Heinemann Professional
Publishing, 1989: 55-82.
Received I1 December 1995
Accepted 19 March 1996
0 RCOG 1996 Br J Obstet Gynaecol 103, 1162-1163
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Diagnosed with IBS w/ Constipation in July 2005
Diagnosed with Hashimoto’s Thyroiditis in June 2009
Officially Gluten-free since July 29th, 2009

A life spent making mistakes is not only more honorable but more useful than a life spent in doing nothing. - GEORGE BERNARD SHAW

#21 BRS-07

 
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Posted 04 August 2009 - 06:34 AM

So I've been having similar burning problems starting about the time I found out I was celiac which was in April. I'm on my 5th doctor and she is a very stumped specialist who is trying to help, but can't figure out what is wrong. Are you guys saying that it is possible that this could be a reaction from a food that my body is now sensitive to? If so, how do you cut out sugar/fruit with being celiac....will you still be able to get the nutrients you need from those fruits and keep your diet balanced with taking that out to test the yeast theory?
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#22 PrincessHungry

 
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Posted 10 January 2011 - 07:26 PM

LADIES!!!!! OMG you have no idea how happy I am to find this thread! Where should I start?

I was diagnosed with celiac 8/09 and had a fibroid removed from my uterus (through my belly button) in 9/09. Two months after surgery, I was standing in the kitchen drinking OJ when I immediately felt like I had shards of glass in my urethra. I'd never been aware of my urethra or what it even did but let me tell you, I was FULLY aware after that. The pain was awful. Anyone I told, told me I was crazy.

Then I started getting UTI like symptoms. I was a UTI pro (lots of UTIs/yeast infection issues pre-diagnosis) so I knew something was up. I went back to my gyno 4 or 5 times and every test was negative. Finally I started looking online for celiac related issues and found interstitial cystitis. I was referred to a fancy urogyno who acted like I was an idiot for thinking that and diagnosed me with vulvodynia. I started PT and imipramine (up to 40mg, 50 was too much) and *on my own* started the low oxalate diet.

I kept trying to explain to doctors that FOOD was causing these problems and no one believed me. When I ate citrus, I was in terrible pain. Specific preservatives made my lady parts hurt. Sometimes it was immediate, sometimes within a few hours. When I eat white potatoes, I get a funky discharge (yup, we all just became best friends). Everyone thought I was crazy and I started to believe them.

I'm still convinced of the food connection (screw them, it's my vagina) and am having the hardest time eating. I don't want to eat. In fact, I hate eating. I never feel good after I eat and the food I do eat, doesn't appeal to me. I've lost a bunch of weight, my friends thought I had an eating disorder, and my long term bf got sick of having a sick girlfriend. Awesome.

I've been tested for colitis, refractory celiac, you name it. Everything is negative.

I'm ready to jump off of one of the many bridges in Portland. I am tired and don't want to live like this. My gi doc asks if I have hope, and if I drive but I am losing it quickly. It's been so long and I've lost so much I don't know what to do. This has affected every aspect of my life. I used to bake and I loved to entertain. Now I'm afraid of food and I feel like I can't do anything.

I tried to eat some almond butter (trying to add things back) and I've been pooping so much lately, my lady parts hurt. I have some kind of an abrasion on my labia (way lower, closer to anus) and I'm sure it's from the frequent bathroom trips. I have several trips a day and it's usually super loose. I went to the gyno today who said it looks like nothing but checked for herpes. Double score.

I was smoking pot to help with the WICKED nausea (I'm super barfy in the am after my first bathroom trip) and to help me eat (it really is that bad) but my GI doc recommended I stop because the withdrawl symptoms can cause everything I'm trying to avoid. He gave me peppermint pills which haven't done a whole lot but I'll stick with them. However, they do nothing to help me eat.

Celiac was easy. My mom and sister had it for years before me, so I knew exactly what to do and how to do it. HOWEVER!!! For whatever reason, I didn't respond well to a gluten-free diet. I've been dairy free for a long time as well but I don't know what to do.

I am so tired and so sad. I don't want to cry anymore. I just want my life back.
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#23 dilettantesteph

 
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Posted 11 January 2011 - 09:27 AM

Your problems might be caused by reaction to low levels of gluten cc. Try a whole foods diet. Don't eat any processed foods, just meats and produce, only fresh spices. Wash everything. Only eat in shell nuts that you shell yourself. Buy your meat packaged in the meat processing facility, not repackaged by the store. See if that helps. You may be a celiac who reacts to very low levels of gluten. A week or two of this diet should be enough for you to find out. Also avoid soy, dairy, chicken, citrus, mushrooms, tomatoes, potatoes. They can cause problems with some celiacs.
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#24 luvs2eat

 
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Posted 11 January 2011 - 01:15 PM

Your problems might be caused by reaction to low levels of gluten cc. Try a whole foods diet. Don't eat any processed foods, just meats and produce, only fresh spices. Wash everything. Only eat in shell nuts that you shell yourself. Buy your meat packaged in the meat processing facility, not repackaged by the store. See if that helps. You may be a celiac who reacts to very low levels of gluten. A week or two of this diet should be enough for you to find out. Also avoid soy, dairy, chicken, citrus, mushrooms, tomatoes, potatoes. They can cause problems with some celiacs.


I don't know if you were responding to princess hungry above, but... because she's my youngest daughter... I can tell you that her kitchen is completely and totally gluten free. The child is down to about 10 foods... eggs, salmon, white rice, apples, and a few other simple things... NO spices whatsoever and very limited produce. If there's any CC happening... it's coming in on the grocery bags!!

The morning barfy thing bothers me. Why would someone eat food... sleep all night... and then feel barfy in the morning AFTER having a bowel movement? Wouldn't most of the food eaten the night before be farther down in the digestive system? Her medical journey has been such a mystery!!
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luvs2eat
Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!

#25 domesticactivist

 
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Posted 13 January 2011 - 11:36 PM

I don't know about what you are going through, but I wanted to chime in that my son experiences sensations like you described in his leg below his surgery site. The main nerve was not severed, but was moved. The surgeon said sometimes it takes months or years, but it does often heal and regain normal levels of sensitivity. Is there a chance you could be experiencing the same sort of recovery from nerve damage? Maybe there are supplements that would help restore the nerves.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.




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