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Calling All Great Minds!


lizard00

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lizard00 Enthusiast

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?


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Ursa Major Collaborator

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.

lizard00 Enthusiast
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!

Ursa Major Collaborator
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.

jerseyangel Proficient

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.

lizard00 Enthusiast

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.

aikiducky Apprentice

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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texasmama Rookie

You might google polycystic ovarian syndrome to see if that fits for you. I had it for years but having my first baby cured me of it and no problems in that area since. :)

debmidge Rising Star

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

2kids4me Contributor

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

Open Original Shared Link

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

taylor- Rookie

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!

Yenni Enthusiast

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.

lizard00 Enthusiast
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!!!

NY547 Newbie

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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    • Scott Adams
      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
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      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
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      Welcome to the forum--and you are absolutely not alone in your experience with a non-celiac gluten sensitivity that presents with severe constipation and profound inflammatory consequences. While the more commonly discussed symptoms are diarrhea-centric, your reaction is a valid and documented, though less common, manifestation. It is completely understandable to feel isolated, especially after moving to an area with less familiarity with this specific presentation, but your vigilance in protecting your remaining colon is not just justified, it is critically important. Your history of autoimmune disease (Hashimoto's) further supports the likelihood of your body mounting a significant inflammatory response to gluten. Many in this community share similar frustrations with a skeptical medical community and the social challenges of maintaining a strict diet, so please know you have found a place where your condition is believed and understood. Staying gluten-free to prevent further damage is the safest path for your health, and we are here to support you in that crusade.
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