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

Calling All Great Minds!

lizard00

By lizard00
in Related Issues & Disorders

Recommended Posts

lizard00 Enthusiast
lizard00
Posted

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?

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

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
lizard00
Posted
  • Author
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
Ursa Major
Posted
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
jerseyangel
Posted

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
lizard00
Posted
  • Author

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
aikiducky
Posted

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

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

Celiac.com Sponsor (A8-M):


texasmama Rookie
texasmama
Posted

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
debmidge
Posted

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
2kids4me
Posted

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
taylor-
Posted

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
Yenni
Posted

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
lizard00
Posted
  • Author
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
NY547
Posted

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.

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. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    3. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    4. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    5. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
×
×
  • 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.