Amennorhea & Celiac

[Eliza13]

Hi everyone:

I hope everyone is doing great on this beautiful Saturday.

I have posted about Amennorhea before, but things are a bit different for me this time.

An ultrasound showed polycystic ovaries, so my doc says that I have PCOS. I have always had amennorhea right from day 1. I went years without a period until I stopped eating gluten. As soon as I stopped, I started getting my period roughly every 5 weeks. But then, it stopped again and I couldn't figure out why. Turns out I had switched to Millet bread for 1.5 years. I decided that maybe it was the bread and switched to a different gluten-free bread, and what do you know....I have had 2 periods in a row after 1.5 years of amennorhea.

My doctor wants to put me on birth control pills because of the PCOS, but I don't think I need them. I am convinced that the problem is gluten, but she thinks it's just a "coincidence".

I don't think I have PCOS, even though I have the Polycystic Ovaries. I think the ovaries are the way they are due to years of eating gluten and more recently, millet. Something was preventing the eggs from fully releasing, and I am certain that eating gluten was directly the culprit. What I want to know is how this all works from a biological standpoint. My doc thinks there is no relationship, but I am not convinced because I know that as soon as I start eating wheat or millet, my periods will stop again. Anyone know what the scientific connection is between gluten and amennorhea? It seems crazy that I would have a systemic reaction like this, but I know that the problem is the wheat.

[ravenwoodglass]

This most likely is not going to be very helpful as they at this point don't know the why. They do know it occurs and many of us have an early menapause and we freqently miscarry and have trouble concieving. But the reason why it happens has not be established anywhere that I have been able to find. I also had polycystic ovaries and also polycystic breasts but for me my diagnosis was too late to bring back my periods. A very early menapause relieved both but when I was first diagnosed my OB/GYN told me not to be surprised if my periods came back, they didn't it had been too long. It is your choice to wait on the pill and see if it resolves, hopefully it will for you.

[kellylynn]

I was diagnosed with gluten intolerance only 2 months ago, but I have had 10 yrs. of amenorrhea starting at age 17.

Because I also have osteopenia and would like to get pregnant, should I, by the grace of God, ovulate and I on a regiment of estrace and prometrium which does cause a withdrawal bleed. I've only been on this for the 2 mos. as well. So, I'm not sure how I'll know whether the diet will cause me to have periods naturally again or not, since the HRT will mask it.

I've had so many doctors in the last 4 yrs. try to push fertility treatments on me. I've thought this is so ridiculous given how terrible I feel....something else was obviously wrong with me! If gluten indeed is the problem, I can't even imagine all of the terrible things that could come from a fertility drug induced pregnancy when your body is totally out of whack.

I've had doctors try to tell me that I have PCOS, but I've never had cysts on my ovaries and I've had at least half a dozen ultrasounds. My current doctor definitely does not think that is this case, but does suspect that in the years that I had periods that endometriosis was an issue and in some ways, the amenorrhea has been a blessing keeping me from the effects of endo.

No one really seems to think amenorrhea is a problem....granted there are many, many worse predicaments in life, but I think it's obvious that something is wrong.

What millet bread where you eating? I've bought the Food for Life loaf several times and really liked it.

I would love to keep each other updated as to what happens and any info we come across.

[needtobebetter]

I think MIllet is high GI and if you have PCOS you have insulin reisistance whilst your insulin is high it will effect pcos..i reckon you stablised your blood sugar / insulin with diet change!!

Hi everyone:

I hope everyone is doing great on this beautiful Saturday.

I have posted about Amennorhea before, but things are a bit different for me this time.

An ultrasound showed polycystic ovaries, so my doc says that I have PCOS. I have always had amennorhea right from day 1. I went years without a period until I stopped eating gluten. As soon as I stopped, I started getting my period roughly every 5 weeks. But then, it stopped again and I couldn't figure out why. Turns out I had switched to Millet bread for 1.5 years. I decided that maybe it was the bread and switched to a different gluten-free bread, and what do you know....I have had 2 periods in a row after 1.5 years of amennorhea.

My doctor wants to put me on birth control pills because of the PCOS, but I don't think I need them. I am convinced that the problem is gluten, but she thinks it's just a "coincidence".

I don't think I have PCOS, even though I have the Polycystic Ovaries. I think the ovaries are the way they are due to years of eating gluten and more recently, millet. Something was preventing the eggs from fully releasing, and I am certain that eating gluten was directly the culprit. What I want to know is how this all works from a biological standpoint. My doc thinks there is no relationship, but I am not convinced because I know that as soon as I start eating wheat or millet, my periods will stop again. Anyone know what the scientific connection is between gluten and amennorhea? It seems crazy that I would have a systemic reaction like this, but I know that the problem is the wheat.

[CaraLouise]

I have had amennorhea since I was 18 and I am 23 now. The doctors say it is hypothalamic dysfunction, which means in the short by brain doesn't work properly. I have been following the diet since I was 19 and no change. I also have osteopenia as well. Hope that the doctors find out something for you.

[kellylynn]

From what the doctors can tell, I have hypothalamic amenorrhea as well, although it is an exclusionary diagnosis, so I'm always hesitant since there is no treatment for it. I'd rather something that can actually be treated...as if I have a choice : )

I have been hopeful that the diet would help, but was disappointed that it hasn't made your periods come back CaraLouise. Are you very strict with the diet? Are you underweight? Just curious.

Thanks!

[krystal]

Hi everyone:

I hope everyone is doing great on this beautiful Saturday.

I have posted about Amennorhea before, but things are a bit different for me this time.

An ultrasound showed polycystic ovaries, so my doc says that I have PCOS. I have always had amennorhea right from day 1. I went years without a period until I stopped eating gluten. As soon as I stopped, I started getting my period roughly every 5 weeks. But then, it stopped again and I couldn't figure out why. Turns out I had switched to Millet bread for 1.5 years. I decided that maybe it was the bread and switched to a different gluten-free bread, and what do you know....I have had 2 periods in a row after 1.5 years of amennorhea.

My doctor wants to put me on birth control pills because of the PCOS, but I don't think I need them. I am convinced that the problem is gluten, but she thinks it's just a "coincidence".

I don't think I have PCOS, even though I have the Polycystic Ovaries. I think the ovaries are the way they are due to years of eating gluten and more recently, millet. Something was preventing the eggs from fully releasing, and I am certain that eating gluten was directly the culprit. What I want to know is how this all works from a biological standpoint. My doc thinks there is no relationship, but I am not convinced because I know that as soon as I start eating wheat or millet, my periods will stop again. Anyone know what the scientific connection is between gluten and amennorhea? It seems crazy that I would have a systemic reaction like this, but I know that the problem is the wheat.

I don't think you're crazy. The doctors might, because they're mostly trained to treat each individual organ process, not consider the body as a whole. There's a whole new "alternative" medical field opening up called "Functional Medicine" that is specifically designed to understand the body's reaction as an entity.

I am understanding it a little more, but basically in layman's terms, when you have the intolerance (or even sensitivity), you body allows garbage into the bloodstream that shouldn't be, and it then responds by trying to fight it off, causing inflammation. While there are "typical" symptoms (diarrhea, etc.) that have well been understood, I think this is more because people assume if you have an issue in your intestines, you should have intestinal symptoms. Many mainstream doctors have discounted the effect of inflammation until just recently, and now it's gaining understanding.

When your body attempts to ward off this invasion, your body seems to have a "hiding" place or a pathway for these invaders, and wherever they end up is where the inflammation occurs, and inflammation is a horribly destructive thing to happen to organs and tissue over a long period of time. Think of your car and rust - if you get a little rust, it's not a big deal, but after a while when the rust builds up, your electronic system no longer has a good ground, the frame is no longer sturdy enough to be supported, and things basically start falling apart. Where the rust occurs affects what kind of longevity your car has....

Inflammation is a systemic thing, and minimalizing its effects often starts with a dietary change. Whether you have a gluten sensitivity or intolerance, you can surely do damage to many of your organs with time, not just your small intestine.

We truly need to listen to our bodies and not wait for the medical / scientific establishment to "accept" it before we realize it is in fact the truth. And we should not assume that because we don't have an official diagnosis that in fact we don't have the disease. The tests are not fool-proof, and the celiac disease tests in particular have a high False Positive rate. If you do have a diagnosis, you are sure you have it. If you don't have a diagnosis but your symptomatolgy is there, and you find relief with the diet - by all means, don't wait until the damage is so extensive that you have permanent, irreversible damage to do something about it.

[ravenwoodglass]

I don't think you're crazy. The doctors might, because they're mostly trained to treat each individual organ process, not consider the body as a whole. There's a whole new "alternative" medical field opening up called "Functional Medicine" that is specifically designed to understand the body's reaction as an entity.

I am understanding it a little more, but basically in layman's terms, when you have the intolerance (or even sensitivity), you body allows garbage into the bloodstream that shouldn't be, and it then responds by trying to fight it off, causing inflammation. While there are "typical" symptoms (diarrhea, etc.) that have well been understood, I think this is more because people assume if you have an issue in your intestines, you should have intestinal symptoms. Many mainstream doctors have discounted the effect of inflammation until just recently, and now it's gaining understanding.

When your body attempts to ward off this invasion, your body seems to have a "hiding" place or a pathway for these invaders, and wherever they end up is where the inflammation occurs, and inflammation is a horribly destructive thing to happen to organs and tissue over a long period of time. Think of your car and rust - if you get a little rust, it's not a big deal, but after a while when the rust builds up, your electronic system no longer has a good ground, the frame is no longer sturdy enough to be supported, and things basically start falling apart. Where the rust occurs affects what kind of longevity your car has....

Inflammation is a systemic thing, and minimalizing its effects often starts with a dietary change. Whether you have a gluten sensitivity or intolerance, you can surely do damage to many of your organs with time, not just your small intestine.

We truly need to listen to our bodies and not wait for the medical / scientific establishment to "accept" it before we realize it is in fact the truth. And we should not assume that because we don't have an official diagnosis that in fact we don't have the disease. The tests are not fool-proof, and the celiac disease tests in particular have a high False Positive rate. If you do have a diagnosis, you are sure you have it. If you don't have a diagnosis but your symptomatolgy is there, and you find relief with the diet - by all means, don't wait until the damage is so extensive that you have permanent, irreversible damage to do something about it.

This was a great post but I think the poster meant to say the tests have a high false NEGATIVE rate. The false negative rate is estimated at about 30% by the NIH.

[krystal]

This was a great post but I think the poster meant to say the tests have a high false NEGATIVE rate. The false negative rate is estimated at about 30% by the NIH.

Yes, you are correct - that IS what I meant!

[mleeanne]

Hi,

I just read your post and all of the symptoms you have listed on the bottom of your post, lactose intolerance, bloating, sterility is also one and all the rest are definitely symptoms of celiac. Many doctors are lacking knowledge of this condition and some have never even heard of it. Maybe you should think about getting a second opinion.