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Polycystic Ovarian Disease


beelzebubble

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beelzebubble Contributor

hi all,

i've been struggling with pcos, stomach problems (i now know as celiac disease), and thyroid disease for years now, and i was wondering if any of you girls would like to chat about them? i know there are quite a few girls here with both celiac disease and pcos. i was hoping we could compare stories and maybe help each other with treatments and ways to cope. i don't know. what do you all think?

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  • 2 weeks later...

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Janice C Newbie

I had hypothyroid, pcos, and celiac for years before diagnosis. I'm on the gluten free diet now, and hope it clears up a lot of things. Polycystic ovaries are linked with insulin resistance. My last blood test came back with low blood sugar (56). If I find anything specific that helps, I'll post back.

beelzebubble Contributor

heya janice,

what are you currently doing for your pcos? i'm on metformin and bcp. the metformin seems to help a bit.

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cdford Contributor

I suffered for years with the pain and fear of cysts on my ovaries and in my breasts. Since going gluten free, many symptoms have mediated or entirely cleared. Hope you have as positive experience.

Janice C Newbie

I also eat organic foods to lessen exposure to organochlorine pollutants. Those estrogen mimics are linked to PCOS, endometriosis, cancer. I have read these xenoestrogens are chemically similar to Candida. Candida may trigger celiac.

Janice C Newbie

My ovaries were removed when I was in my 20s. I hope you find a better solution. I wish I had known about avoiding wheat. I am on a low sugar diet and take vanadyl sulfate and cinnamon. I think hypoglymemia, diabetes, and insulin resistance are related.

Deby Apprentice

I've had terrible pain in my right ovary. it's there almost all of the time but gets really bad at mid month and when I cycle. Could this be PCOS? I was admitted to the emergency room about 5 months ago with really bad pain. I thought it was my appendix, but it was just my cycle coming on.


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laurel Newbie

Hello everyone,

I have PCOS, and I've been researching the causes for the last 3 years. I refused to believe that I was somehow genetically defective in the hormone area, and I was convinced that I could heal myself with proper nutrition. After scouring the web for resources, I found the Weston A. Price Foundation and got really involved in understanding fats, food production and the social, economic and political aspects of food. By eating well, I was able to see some positive improvements in my hormone health.

However, I also gained weight very easily (which I was okay with, if it meant that I would heal in the long run and return to a normal weight someday...) Anyway, I just figured it out last Wednesday that my problems are due to casein and/or gluten intolerance. It makes so much sense, because I was very sensitive to milk as a baby, and really never ate cheese or much dairy product because I was so scared of the fat content. The WAPF gave me a license to eat full-fat dairy products, because the butterfats were important for me to heal my hormone issues.

The only weight-loss diets that have ever worked for me have been the ones that have eliminated grains and dairy products. Low-carb and Atkins didn't work, because I still ate cheese. (And Diana Schwarzbein's low-carb didn't help, either.) Of course, these diet plans often have so many variations that I never could nail down what actually worked for me. Anyway, I finally asked a couple of friends at the Weston Price foundation, and they, too, had PCOS-like symptoms and had relieved all of their problems with gluten and/or casein avoidance.

This was the answer that I was looking for, and I'm now 5 days into a Gluten-free Casein-free lifestyle! I've already lost several pounds of inflammation weight, and we even have a message board at Yahoo groups called "GFCFNN." It stands for "gluten free casein free native nutrition."

I'm still tearing up the internet looking for information, and just happened to find you guys... This is the first time that I ever thought that PCOS could actually be a manifestation of a food intolerance! (What an easy answer, eh?)

Best wishes to all, and if I don't check in here regularly, please feel free to stop by that Yahoo group and say "hello."

-Laurel

  • 4 years later...
LuvmyTrips Newbie

Hi Ladies ~

I just wanted to share some information. I was diagnosed with PCOS when I was 19 years old. I had all of the PCOS symptoms to the MAX. I tried for 6 1/2 years to conceive with and of course due to the severity of the PCOS struggled with infertility. After over 6 1/2 years of trying, 100% negative pregnancy tests, pin cushion syndrome, I tried IVF and it worked. After my TRIPLETS were born, I saw a few doctors that really had no interest in correcting or managing my PCOS symptoms and or my weight issues other than them telling me to stop eating bad food. The fact of the matter is, I was eating right! I hardly ever ate fast food, I loved salads, it just wasn't adding up.

I also felt as though my body was so unhealthy. I felt horrible after everything I ate, unless it was a salad, fresh veggies or fruit. I was ever considering vegetarianism.

I moved and found a new doctor and went in for a routine check up. During this check up my doctor did something no other has done before. She started pointing things out that she thought were abnormal BEFORE I had a chance to complain about them. She knew before I told her that I had PCOS. She then said that she would like me to go on a diet... OK HERE WE GO AGAIN right? No! She said I want you to try a specific "diet" which has proven to help PCOS patients. I thought... ok whatever, I will try it.... GLUTEN-FREE/CASEIN-FREE.

Let me just say... I have been GLUTEN-FREE/CASEIN-FREE for three months and have lost 6 inches, 20 pounds, and something incredible started happening... I had my menstrual cycle twice in a row!!!! I know it doesn't seem likely, but I have never felt this good. I have now converted my family to try being gluten-free for one month and see how they feel. What will it hurt right? Ok, the triplets (now toddlers) are jumping on me... but I think it is worth it to do this new way of life especially if you have PCOS!

  • 1 year later...
Itsme-- Newbie

I knew there had to be a connection!!

I sometimes get pain in my ovaries especially when i'm coming up to my cycle but not all the time. I now know this is because I have a relatively gluten free diet but i don't stick to it the way i know i should.

I woke up this morning with serious ovary pain and i thought right, there absolutely has to be a connection with this pain to when i eat gluten (i had naan bread last night with dinner.)

As i start researching ovary pain and gluten intolerance, I FIND THIS THREAD!

Thank you all so much for sharing.. i can relate to sooo much of what was listed and have learnt heaps already!

:)

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    • HectorConvector
      These symptoms started initially in 2009/2010 and I've had normal blood sugar readings in all the blood tests - so never been diagnosed with diabetes or pre-diabetes. I did request another blood test recently (yesterday in fact) which I have had, and if the blood sugar looks high it'll come up in my results which I'll be able to see next week. I don't have any other symptoms relevant to diabetes except for the nerve pain, which had been in existence for many years with "normoglycaemia", but we'll see. In terms of my current diet: I get roughly 60% of my calories from fat and protein, and 40% from carbs (an estimation). I'm on currently about 2200 calories per day, which is too low for someone of my size, so I've been slowly losing weight that I want to put back on again. But I don't want to do that without using weights, which flare my pain up unfortunately. 
    • Russ H
      I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease and going on a strict gluten free diet that I accidentally consumed dairy products and didn't react. From then on, I have been fine with diary. 
    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
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