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lizard00

Calling All Great Minds!

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So some of you might remember that a few weeks ago, I went to the ED for some pretty nasty stomach pains. They did ultrasound, found nothing, and sent me home with gastritis and a rx for pepsid. Went to the GI to follow up like an obedient patient, and he ordered a CT scan and told me I didn't have gastritis. Had the scan the 23rd...

fast forward to today

I got the results in the mail from my scan... "a ruptured ovarian cyst that sometimes can cause severe pain"...

I hate to always blame everything on this disease that I may or may not have, but is this common? One of the reasons I lean toward Celiac is because I have always had totally erratic cycles, sometimes 3 or 4 months from one period to the next. Since going gluten-free, they are becoming normal. True, 3 cycles isn't conclusive, but I've NEVER had 3 cycles in 3 months. Only if I was on BCP.

But if I'm gluten-free now, wouldn't that have manifested itself earlier? Or is it now b/c it's ruptured and been hanging around there for a while? The thought of a ruptured ovarian cyst didn't even cross my mind. So, is this something I should be concerned about and go see my OBGYN?


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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I say, whether it is caused by celiac disease or not, it would be wise to go to see your OBGYN about this, since he is the one who is the specialist for things like ovarian cysts. Make sure you obtain and take a copy of your scan results when you go.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I say, whether it is caused by celiac disease or not, it would be wise to go to see your OBGYN about this, since he is the one who is the specialist for things like ovarian cysts. Make sure you obtain and take a copy of your scan results when you go.

I called them and they're supposed to call back. It seems like there is a link to multiple reproductive issues with Celiac and it's hard to know what fits where. Seems like everything fell apart a little over a year ago... before that nothing was ever wrong with me. oh well... I'll get to the bottom eventually.

BTW... congratulations on your new grandson! He is absolutely beautiful!


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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I called them and they're supposed to call back. It seems like there is a link to multiple reproductive issues with Celiac and it's hard to know what fits where. Seems like everything fell apart a little over a year ago... before that nothing was ever wrong with me. oh well... I'll get to the bottom eventually.

BTW... congratulations on your new grandson! He is absolutely beautiful!

Thank you, yes, he is gorgeous, of course. :D

It is quite possible that celiac disease is the culprit, as there is no doubt that it can and will cause reproductive problems (I am sure it caused my eight miscarriages). But the problem is that once you have cysts, they may not go away with just a gluten-free diet. I hope you get your answer.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Yes, you will definately want to follow up with this.

Last year, I had a hysterectomy due to a cystic ovary, endometriosis, adenomyosis, and uterine fibroids. The only things we knew about going in were the cysts and the fibroids--the rest was discovered upon surgery and in the pathology reports.

My surgeon dismissed any notion that these multiple issues could be related to the Celiac--although I did some research on my own and found that Endo is now thought to have an autoimmune link.

Some here have reported improvement with various female problems--I had the opposite happen, so I really don't know if there is a link or not. I know that ovarin cysts are not uncommon--they occur every month but usually go away on their own as an egg is released.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Thank you both! I am going in tomorrow to see my OBGYN. When I called them to get an opinion, they called right back and asked if I could be there tomorrow, so I figured it's best not to put it off.


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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Don't quote me on this but I think the link may be genetic rather than directly caused by celiac. In other words people who have the genetic susceptibility to develop celiac may be more likely to have the genes for other kinds of problems like cystic ovaries, too.

Pauliina

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From someone who is constantly going thru ob/gyn issues and my husand is the celiac, not me..

Fibroid tumors from age 23 to 36 -- had tumors removed at age 36 and one fallopian tube removed as it was crushed by the multiple tumors and the other one was "tied". I was able to stop taking birth control pills and then the ovarian cysts began. Quietly at first, but resolving themselves at the end of each cycle. As I hit in my late forties, the cysts stayed longer and unresolved cysts met new cysts until I had multiple cysts coming from one ovary. Doctor said that the cysts of late forties were sometimes found in women my age because their bodies "forgot" how to resolve a cyst by the end of the cycle. The body wasn't reabsorbing the cysts on time. Her opinion was that BCP would not help much and a second opinion (ovarian cancer doctor) pretty much said the same thing.

My theory for you Lizard00, is that now that your ovaries have taken a normal cycle pattern, you are ovualating as you never did before (before this, your body had months to resolve the last cyst that you made before a new ovulation happened). Now you are presenting with unresolved cysts while you ovulate new cysts during the next cycles. I don't feel it's necessarily celiac that has done it to you, but it's a result of going gluten free and your body's systems are "healing" and resorting to what would have happened normally if it weren't for gluten screwing up your system.

Just my guess about what could be going on .

Deb


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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This is an excellent site about ovarian cysts including rupture of them:

http://www.rupturedovariancyst.com/

Ovarian cysts are a common occurrence in menstruating women and, most of the time, the cysts are asymptomatic and resolve on their own. But, in some cases, ovarian cysts can develop into a more serious matter.

Ovarian cysts are typically discovered during a routine pelvic examination. The doctor will usually observe the cyst over a period of months through ultrasounds to see if it resolves itself. If it does not, or if it is accompanied by pain or other symptoms, the doctor will perform tests to see if the cyst is malignant. Symptoms that tend to accompany ovarian cysts include irregular or painful periods, pain during sexual intercourse or when passing a bowel movement, or pain in the abdomen that may radiate to the thighs and buttocks.

If the cyst does not resolve on its own, the doctor may decide to remove it surgically. At that time, he or she will typically take a sample of the cyst to test it for malignancy.

In some cases, especially when an ovarian cyst is not found early on, it can rupture. A ruptured ovarian cyst is not only extremely painful, but it can lead to serious medical problems. A ruptured ovarian cyst can have potentially life-threatening complications, such as hemorrhage and infection. If you feel you may have an ovarian cyst, it is important to have your symptoms identified as soon as possible to avoid a critical emergency situation.

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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hey! i went through the EXACT SAME THING. like everything..back in October.

at the end of september my roommate drove me to a walk in clinic (i am up at college so i don't have my own doctor) for stomach/lower back pains..really bad pains. they made sure it wasn't appendicitis, gave me a shot for pain and a shot for nausea (it was like 9 at night), and sent me home, telling me that if the pain got worse that night, to go to the ER. a week later i went back for a check up and ended up being sent to get a CTscan later that week, which was the worst experience of my life and i am 95% positive that garbage i had to drink had gluten in it..but anyway..that came back clean so they decided to send me for an ultrasound since i was still in a lot of pain. now since i was doing all of this through a walk-in clinic, they told me the ultrasound was clean, because they don't do all the follow up work and stuff, but my doctor back home contacted me and informed me that i had an ovarian cyst that ruptured, that there really wasn't anything they could do about it but that when i came home for christmas i should come in.

oh ps. i had had a cycle about a month before all of this had happened and haven't had one since...

so i went in to the doctors early january and she told me that there wasn't really anything they could do for an ovarian cyst, that if i continued to get them they could put me on an extremely low dose of birth control if i wanted, just to help regulate. and that missing my cycle wasn't really a concern until its been around a year since i had one, but that if i wanted they could give me some sort of drug that would make me have one. they also ordered blood test to see if it was my thyroid or something, but those came back clean a few weeks ago.

basiclly they told me they could do absolutely nothing, i never thought that it might have something to do with celiac? but im definitely feeling your pain through all of this. my grades suffered a lot last semester and it was my first semester away and had to deal with all of it without my family around, except my amazing cousin who made sure i got to and from my doctors appointments and watched me the first night to make sure i was ok and didn't need to go to the ER in the middle of the night or anything :D he is incredible.

but hopefully we will both figure something out!! good luck!


<3 Taylor

Celiac since 1990

GO NOLES!!

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I have had lots of troubles with things down there too. Last 3-4 years has been the worst. Looong periods, spotting in between, had a cyst last fall that went away on its own and persistent pelvic pain. I have always had painful periods too. Nasty PMS the last 4 years... The lady thing has taken over way too much of my life...

So finally I was told I most likely have Endometriosis and I am having surgery next week to confirm and remove tissue. (ugh)

I also have a few small fibroids that might get removed, but it depends.

I have also read that Endo can have to do with the immune system as mentioned here earlier.

...It is good that you go back and have it checked properly. Hope it goes well.


One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).

Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)

Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

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My theory for you Lizard00, is that now that your ovaries have taken a normal cycle pattern, you are ovualating as you never did before (before this, your body had months to resolve the last cyst that you made before a new ovulation happened). Now you are presenting with unresolved cysts while you ovulate new cysts during the next cycles. I don't feel it's necessarily celiac that has done it to you, but it's a result of going gluten free and your body's systems are "healing" and resorting to what would have happened normally if it weren't for gluten screwing up your system.

That actually makes a bit of sense to me. Like you said, it's a theory, but it really does make sense. My DR said that cysts happens every month, but once the egg is released it's taken care of... which is why some women can tell when they're ovulating. (me!!) But since I've never had a regular period (unless I'm on BCP which shuts down your ovaries), my body WAS/IS probably all whacked out and doesn't know what to do now... but at least things are regulating and I'd truly rather have that. Thanks!

but my doctor back home contacted me and informed me that i had an ovarian cyst that ruptured, that there really wasn't anything they could do about it but that when i came home for christmas i should come in.

That's basically what my DR told me. He said if I was bleeding internally I wouldn't be getting any better. So, I have to go back in a few weeks for a followup ultrasound to make sure that everything is healing up as it should. He also said that it's pretty common and doesn't really seem to be worried at this point about this being a recurring incident or anything like that. I really like him, so I'm going to just follow up with him and keep on trucking. But, he did not down my gluten theory, which most other docs do. He was glad that things were getting regular, whatever the reason.

Thanks everyone for your imput!!!


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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Hi Everyone. My question for you all is: have you ever had extreme fatigue and weakness at certain times of the month? My daughter has very bad abdominal pain which radiates around to her back, but she also gets so weak she can not stand up to take a shower or lift her arms. A few months ago, they saw cysts on ultrasound and her LH/FSH hormones were out of whack. They put her on BCP. Her cycles are now regular, before they were every 3-4 months. Still very heavy.

She gets these "bouts" of fatigue and pain every 6-8 weeks. She is still getting them after being on BCP 3 months. Her last ultrasound a few weeks ago came back negative for cysts, so her dr. says the pills are working and wants her to see a gastro doc.

Is the fatigue associated with having the cysts or should we go back to the GI. She has had numerous blood tests for celiac which have all come back negative. Her Total IgA level was low, but within normal limits. Docs have also ruled out lyme, mono, thyroid, rheumatoid arthritis and a host of others.

Thanks for any feedback. Her grades are also plummeting due to her absences from school. She is only 15.

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