CAH and food/diet choices?

[ginoushka]

Hi folks--

Oh, I'm so glad this forum exists. This is my first time posting, but I've lurked a bit.

I was diagnosed with CAH pretty recently, and also possibly have PCOS (I'm currently getting that checked out -- I don't have insurance, so all of this is being done through free clinics).

Most of how my CAH manifests in my body is in very intense menstrual pain (along with very long, heavy periods) and menstrual-cycle related anxiety/mood swings/panic/etc.

I'm treating the pain and the anxiety with acupuncture, herbs, and exercise. All of that seems to be helping, but I'm wondering if a change in diet could also aid the process.

Are there any foods I should avoid? Any foods I should up my intake of? I haven't been able to find much information online. I know, for example, that folks with endometriosis are often encouraged to cut down wheat and that that can greatly reduce some of the more painful symptoms. I'm wondering if something similar could be recommended for CAH.

Also: Would anyone who has gone on hormones to manage their CAH and/or PCOS be willing to share what's been good or bad about their experiences? I've considered some forms of HRT, but I'm inclined to stick to stuff that's gentler on my body. I realize I might be being unnecessarily cautious, though.

Thanks so, so, so much--
ginoushka

[fraulein_Maria]

[QUOTE=ginoushka;16179]Hi folks--

I was diagnosed with CAH pretty recently

>>> oh? what type? the symptoms manifest differently and it makes a difference (drastic difference) in what you do about it OTC... the treatment is cortisol replacement otherwise, though you will have a choice of cortisol analogues. <<<

and also possibly have PCOS

>>> that's more likely, though it is possible to have both. <<<

(I'm currently getting that checked out

>>> a pelvic ultra-sound is the best diagnostic for PCOS. Have they tested you for uterine cancer? its painful (the test) but its MORE common than CAH and important to rule out. <<<

Most of how my CAH manifests in my body is in very intense menstrual pain(along with very long, heavy periods) and menstrual-cycle related anxiety/mood swings/panic/etc.

>>> not usually. 90% of CAH's have short, light, cycles. sounds more like PCOS. CAH actually surpresses ovarian function, so you have less mentrual symptoms, not more. <<<

I'm treating the pain and the anxiety with acupuncture, herbs, and exercise. All of that seems to be helping, but I'm wondering if a change in diet could also aid the process.

>>> if you actually have impaired adrenal function, licorice root is known to help. the most common type of CAH makes you waste sodium salt... so we cheerfully use it with abandon. :) gator aide good.

the next most common type makes you waste potassium. "salty" things bad. gator aide bad. OJ, potatoes, milk, banana's good. :)

I'm wondering if something similar could be recommended for CAH.

>>> You seem to have mistaken CAH for something that primarily affects ones uterous. this is not so. The most obvious symptom is a hyper masculinized body. Do you have a beard? that is the number one concern of most gals with CAH.
The next (since most CAH's don't waste salt of either type) is hyper allergic responses. In fact, its how i got my own Dx. <<<

Also: Would anyone who has gone on hormones to manage their CAH and/or PCOS be willing to share what's been good or bad about their experiences?

>>> most women with CAH do not go on any "hormones" at all for it. We are cortisol defiecient. Our bodies attempt to make up for it by making what it can as a substitute.... testosterone.
the way to make our bodies stop making extra testosterone is to replace the cortisol.

I went on prednisone (a cortisol analogue) and the BO became less... my hair began growing back in my scalp... i do not have to pluck my face all the time (i hate shaving). I began having cycles every month, instead of SKIPPING months. my fertility increased (hot flashes stopped) and my breasts began to grow.

I've considered some forms of HRT

>>> which is a waste of time with most forms of CAH. your estrogen production will increase and your progesterone decrease as soon as you begin cort. replacement. in other words your body will regulate itself once you give it the tool it cannot make to do so. <<<

[Kailana]

Im curious about your age? Cause I don't know If Fraulein_Maria was asking for it. If young still, Birthcontrol may help regulate your cylces. Did your doctor suggest some form of HRT as being beneficial? As Maria stated HRT isn't that common, unless your well getting bad advice, and your doctor thinks its not CAH, you'll go through a big long period of trying all different kinds or birthcontrols only to figure out your still having issues with CAH, and the HRT is doing a damn thing, or your gonna spend a real long time dealing with PCOS, just to figure out its not doing anything for you either. Or your doctor might of mentioned HRT as in birthcontrol to start you off on a more normal cycle, instead of skipping, sort of like, instead of waiting for the meds to work their magic, birthcontrol might help get your menstuation cycles regulated.

ahh id be carefull if your Hypokalemic, the issues with low Potassium CAH variants 17a, 11b a few others eating bananas can give you a rush of K all at once, banana's are easily absorbed by the body, which can be a quick fix but they can also mess you up, as the downside of the rush is withdrawal, fatigue lack of energy, all of a sudden. particularly if your taking Spironelactone or Potassium Chloride, which is some of the meds you might be given if your not able to maintain your potassium(K)levels. Spironelactone is used if your also overproducing Aldosterone, if not its usually Potassium Chloride. Any issues with hypertension? also common with the CAH variants causing low potassium levels. Oh and never take Spironelactone with Potassium suppliments, really bad for you, also your diet, if on Spironelactone, have to watch how much Potassium your eating, drinking, as Spironelactone is primarily a potassium sparring diuretic, you can actually overdose on Potassium if your intake is high, causes really low blood pressure, and that aint good for you either.

It is also why it is very important to know what form of CAH you have. What meds are you on? there are others that have lots of information on many of the Salt wasting forms, I on the other hand, tend to study the Potassium wasting forms(HypoKalemia), as that affects me. I used to drink V-8 as it has both high sodium and potassium, I cant do that now though, unless im really working up a sweat, then I still drink a 8 oz can which i keep plenty of around as I do know my body really well. Tomatoes, strawberries are good sources too if your going all natural.

[fraulein_Maria]

[QUOTE=Kailana;16188]Im curious about your age? Cause I don't know If Fraulein_Maria was asking for it. If young still, Birthcontrol may help regulate your cylces.

>>> Kailana, it won't do jack if she's CAH. oh :doh: i forgot. CAH gals get PREGNANT on BC pills.

getting bad advice

>>> REALLY BAD, or its not CAH. <<<

[ginoushka]

Hi fraulein_Maria,

Thanks for your response.

In answer to some of your questions:

>>> oh? what type? the symptoms manifest differently and it makes a difference (drastic difference) in what you do about it OTC... the treatment is cortisol replacement otherwise, though you will have a choice of cortisol analogues. <<<

I actually don't know what type. To explain a little more: My job does not offer me insurance, I can't afford private insurance, and I don't have a primary care physician. I get all of my medical care through free clinics. I was diagnosed by a doctor at a free clinic (who I have not seen since) who explained to me that my hormone levels were very non-standard for female-assigned people and similiar to those of other female-assigned folks with CAH, and that my symptoms were in line with CAH symptoms.

I do have a "masculinized" body (plum shape, very short, very hairy), and I get hot flashes. I had a very precocious puberty (I got pubic hair when I was 6, breasts when I was 8, my period when I was 8, etc, etc). My childhood and adolescent symptoms plus the symptoms I have today are pretty much in line with what I've heard is common for female-assigned folks with CAH, but again, I don't have a lot of people to talk about this with.

---and also possibly have PCOS---

>>> that's more likely, though it is possible to have both. <<<

>>> a pelvic ultra-sound is the best diagnostic for PCOS. Have they tested you for uterine cancer? its painful (the test) but its MORE common than CAH and important to rule out. <<<

I'm getting a pelvic ultrasound soon. I haven't been tested for uterine cancer -- thank you so much for telling me to get that looked at! I didn't know it could be part of the issue, and you're right, it's v. important to rule out.

---Most of how my CAH manifests in my body is in very intense menstrual pain(along with very long, heavy periods) and menstrual-cycle related anxiety/mood swings/panic/etc.----

>>> not usually. 90% of CAH's have short, light, cycles. sounds more like PCOS. CAH actually surpresses ovarian function, so you have less mentrual symptoms, not more. <<<

Really? Is that the case overwhelmingly?

----I'm treating the pain and the anxiety with acupuncture, herbs, and exercise. All of that seems to be helping, but I'm wondering if a change in diet could also aid the process.----

>>> if you actually have impaired adrenal function, licorice root is known to help. the most common type of CAH makes you waste sodium salt... so we cheerfully use it with abandon. gator aide good.

the next most common type makes you waste potassium. "salty" things bad. gator aide bad. OJ, potatoes, milk, banana's good.

----I'm wondering if something similar could be recommended for CAH.---

>>> You seem to have mistaken CAH for something that primarily affects ones uterous. this is not so. The most obvious symptom is a hyper masculinized body. Do you have a beard? that is the number one concern of most gals with CAH.<<<<<

Yes, I do have facial/neck hair (and hair on my breasts, and hair on... Well, let's just say there's a lot of hair.)

>>>The next (since most CAH's don't waste salt of either type) is hyper allergic responses. In fact, its how i got my own Dx. <<<

---Also: Would anyone who has gone on hormones to manage their CAH and/or PCOS be willing to share what's been good or bad about their experiences?---

>>> most women with CAH do not go on any "hormones" at all for it. We are cortisol defiecient. Our bodies attempt to make up for it by making what it can as a substitute.... testosterone.
the way to make our bodies stop making extra testosterone is to replace the cortisol.

I went on prednisone (a cortisol analogue) and the BO became less...<<<

This is really interesting to read, because I've def. noticed since I've started acupuncture treatments to balance my hormone levels that I smell a lot less, and that the smell of my body is different and less strong.


>>> my hair began growing back in my scalp... i do not have to pluck my face all the time (i hate shaving). I began having cycles every month, instead of SKIPPING months. my fertility increased (hot flashes stopped) and my breasts began to grow.<<<<<

You know, I've actually just recently started growing my facial out for the first time in my life. I've shaved it since I hit puberty, but I'm trying to figure out if I can live with it. I want to see what it looks like, since I've never really let myself have it before.

---I've considered some forms of HRT

>>> which is a waste of time with most forms of CAH. your estrogen production will increase and your progesterone decrease as soon as you begin cort. replacement. in other words your body will regulate itself once you give it the tool it cannot make to do so. <<<

This is really helpful, again -- I didn't know a lot of this. Thank you!

[ginoushka]

Hi Kailana--

>>>>>Im curious about your age? <<<<<<<<<

I'm 25.

>>>>>Did your doctor suggest some form of HRT as being beneficial?<<<<

As I said to f_M: I don't have one doctor I see regularly, I go to free clnics. The doctor I saw who diagnosed me suggested I go on hormones. He also suggested surgery where they cut out my adrenal glands. :( I took his medical advice for how to deal with this with a very big grain of salt, but I figured asking around about people's experiences wouldn't hurt.

>>>>>>As Maria stated HRT isn't that common, unless your well getting bad advice, and your doctor thinks its not CAH, you'll go through a big long period of trying all different kinds or birthcontrols only to figure out your still having issues with CAH, and the HRT is doing a damn thing, or your gonna spend a real long time dealing with PCOS, just to figure out its not doing anything for you either. Or your doctor might of mentioned HRT as in birthcontrol to start you off on a more normal cycle, instead of skipping, sort of like, instead of waiting for the meds to work their magic, birthcontrol might help get your menstuation cycles regulated.<<<<<<<<<

That's really good to know. Like I said, I didn't know that hormones aren't the usual route...

<<<<<ahh id be carefull if your Hypokalemic, the issues with low Potassium CAH variants 17a, 11b a few others eating bananas can give you a rush of K all at once, banana's are easily absorbed by the body, which can be a quick fix but they can also mess you up, as the downside of the rush is withdrawal, fatigue lack of energy, all of a sudden. particularly if your taking Spironelactone or Potassium Chloride, which is some of the meds you might be given if your not able to maintain your potassium(K)levels. Spironelactone is used if your also overproducing Aldosterone, if not its usually Potassium Chloride.>>>>>

Hmm -- I've heard from trans woman friends of mine that you aren't supposed to eat potassium if you're on spiro, like at all. Can you eat small amounts?

<<< Any issues with hypertension? >>>

Yes, very slightly high blood pressure.

<<<<<<<<<also common with the CAH variants causing low potassium levels. Oh and never take Spironelactone with Potassium suppliments, really bad for you, also your diet, if on Spironelactone, have to watch how much Potassium your eating, drinking, as Spironelactone is primarily a potassium sparring diuretic, you can actually overdose on Potassium if your intake is high, causes really low blood pressure, and that aint good for you either. >>>>>>>>

Ah! I see the answer to my spiro question! :)

<<<It is also why it is very important to know what form of CAH you have. What meds are you on?>>>

No meds right now.

<<<there are others that have lots of information on many of the Salt wasting forms, I on the other hand, tend to study the Potassium wasting forms(HypoKalemia), as that affects me. I used to drink V-8 as it has both high sodium and potassium, I cant do that now though, unless im really working up a sweat, then I still drink a 8 oz can which i keep plenty of around as I do know my body really well. Tomatoes, strawberries are good sources too if your going all natural.>>>

Again, thanks so much. I'm so glad to have this as a resource -- there's a lot I don't know...

[Kailana]

actually i still have a fairly high potassium diet, amazingly enough, I only have problems with Banana's. I don't really have any issues with other things. Still drinking Soy milk, which does have a fairly high amount of Potassium in it. I used to drink V-8, and i mean alot of it, 40 oz can a day, as V-8 was one of the few things I grew accustomed to just making me feel a whole lot better, oh and Granina Banana Juice. Granini makes some great juices, i never understood how I could drink there Banana flavored Juice and have no issues with it, and how I a banana would just give me problems. Now V-8 also has lots of Sodium in it too, anyways i used to drink alot, particularly in the summer, before and after exercise, yard work or anything i did that caused me to sweat.

Most of my issues revolve around very low Potassium levels, my sodium levels were never as low as my Potassium levels. But V-8 always seemed to make me feel a great deal better. these days on 200 mg of spironelactone daily my Potassium levels on all my lab work is actually within the normal range, last labs at 4.1 mmol/L ref range 3.6-5.4 mmol/L. Now as I have had labs drawn every 3 months for the last 2 1/2 years I have a pretty good record of low Potassium levels, while still on Spiro, I can range from 2.9-4.1 mmol/L, I think mostly due to my diet, the 4.1 from my most recent lab is my highest level I've ever had, and likely diet influenced along with Spironelactone. Before Spiro my Potassium levels varied from 1.9-2.5 mmol/L, and while those labs were taken while fasting, i still believe diet had an important influence with the levels found. Previous to HRT, I had an extremely high Potassium diet, managed to survive with diet because I understood enough about what i have, to know, learned to understand what helped me function at an almost normal ability.

Sodium levels, are actually kinda normal/high now, which is odd to see, as I have a very low Salt diet these days. Only time my Sodium levels plummet is when i am sick, I generally don't have to worry about Salt intake, unless im very physical active, and V-8 still seems to work well just as it always has. I do not salt my food, nor do eat foods with high Sodium, except for V-8 and that only when I exercise heavily, or am sick. Again, i believe i have lived long enough to understand when I neeed to add salt to my diet, and when i don't. Oh i am also rather heavy haha, diabetic these days, another good reason for not doing Salt. But before Spiro-i used to eat a ridiculous amount of Pickles. I do know Maria has mentioned that is common for alot of CAH affected people. I kinda don't get the relavance, unless pickles also are high potassium, which they arent, or at least i dont think they are at least. Oh- and I am just mentioning the Pickles as they are high sodium sources too. But again, since going on Spiro-i havent had any issues with low Sodium levels, my Sodium levels are normal, and I am not sure how Spiro affects Sodium levels, or in me at least.

Last comment on Spiro- I believe Spironelactone is the same stuff i took from 13-14 1/2 years of age. Nothing in my records these days, but i am pretty sure that is the med I caught my father dumping in the Geritol bottle in the middle of the night. Just for refference, pediatrician told me to take Geritol, as I was iron deficient, or at least thats the exscuse i was given at the time. Anyways, i know others have commented, "are you sure it wasn't Testosterone"?, and truethfully i cant say, as i really only recall the Spironel part of the name on the bottle. I also know my parents well enough to know, that they would of never allowed me to reassign back then, spironelactone is also a part that played an influence I believe with ginocomastia and chest reduction surgery at 18 years of age, also sterility as a boy/male, although it is also likely I was allready sterile, but the use of spironelactone as a teen pretty much guaranteed id never father kids.

Sorry ginoushka, you may not know me well enough to understand my word usage. I have two I.S. condition's that I know of/diagnosed as , another i suspect that if true would change one of my previous diagnosed ones. I actually think doctors are afraid to find out that i am right.

Yes, very slightly high blood pressure.ginoushka

ahh that confused me, is that slightly high blood pressure? or very high blood pressure?

Think you need a better doctor too, or a referral from that doctor at the free clinic, sorry to say it, but I do not think that removing your adrenals would even be reccommended by any doctor, without first trying cortisol replacement, unless your 17a CAH, treatment varies depending on variation of CAH.

You would really have to have some horrendously terrible lab work, for any doctor to even contemplate removal as a solution, meaning, you'd probably allready be hospitalised and in real bad,bad, bad near dying health first.

Oh, and do not listen to any of us about diet, cause that could just make you worse. Talk to a doctor, seriously, if your CAH, you need real answers, you need to know what form, then come back and ask for advice, that way you would at least get real relavent information that might help you the best, listening to us, you are likely to make yourself very very sick. Oh and there are programs in most hospitals that can comp medical bills/testing, if there is a real need for it, talk that doctor that mentioned the CAH/PCOS--oh and its also possilble that PCOS could be affecting your hormone levels, and not actually be CAH.

[fraulein_Maria]

[QUOTE=ginoushka;16194]Hi fraulein_Maria,

Thanks for your response.

In answer to some of your questions:

I actually don't know what type.

>>> the most common type is called 21 hydroxylase deficiency. 80% of CAH's have this type. when they waste salt (because not all do) it is sodium salt... there pressure tends to be low. self-treatment would involve licorice root and eating more salt and being careful on hot days to drink water with salt in it to avoid sodium depletion.

the next most common is 11-beta hydroxylase defiency. another 11% have this type. when they waste salt (again, not all do) its potassium and the pressure tends to be hi. self treatment again would involve licorice root, eating salt subsitute (which is usually potassium cloride) and spiking your water with it on hot days.

I must say though, most folks with CAH are Dx'ed at birth because of enlarged infant genitalia and/or a near fatal adrenal crisis. There are much more rare forms of CAH that do not leave one as ambiguous, or as vulnerable... my form for instance, makes me one in 100 MILLION. <<<

who explained to me that my hormone levels were very non-standard for female-assigned people and similiar to those of other female-assigned folks with CAH, and that my symptoms were in line with CAH symptoms.

>>> and i would run from such an ignoramous if you are quoting him correctly and not making this up.....

Miss Gina Devrie

[The Female Eunuch]

Kailana said:oh and Granina Banana Juice. Granini makes some great juices, i never understood how I could drink there Banana flavored Juice and have no issues with it, and how I a banana would just give me problems.

Maybe it doesn't have banana in it. Unless there's been some technological breakthrough in recent years, there is no such thing as banana juice. Ever tried to juice a banana? It just goes mushy and no juice comes out.

The reason I say there may have been a technological breakthrough is that I remember an article in New Scientist a few years ago about food technologists who were investigating whether they could use enzymes to get juice out of a banana.

There is also no pumpkin juice in real life. Pumpkin juice is the staple drink at Hogwarts High School in the Harry Potter books, and I suspect the author chose it because getting juice from pumpkins, as with bananas, would seem to be impossible unless you have magic powers.

cheers,
Caroline

[Kailana]

they deffinately have Banana juice, and there are real banana's in it. Whether it is pulped or diced, or ground,or whatever and mixed with water, still makes it a jucie. Maybe I should say Banana Jiuce made from concentrate or something. But it is very tasty, oh and they alsohave a multi-fruit blend that I also happen to love. I have been drinking Granini products since 1990 When I first tried em in Germany. Most stores locally do not carry Granini, but 1 does. Or whenever I am in a bigger city, i can find granini products really easy. Walla Walla though isnt that big, selection in choices of products is ok, but not ideal.

If youd like to make your own, blend a banana and water haha, youd get the same consistency, I wouldnt know about the flavour though. Just a suggestion, it might help you understand what the Granini Banana Juice is like.

[tinytool]

U should try Monavie it is a blend of 19 fruits including the acai berry it is awsome !!!!

[Kailana]

is that the flavour? just wondering who makes it?

Or if anyone else out there knows about Granini products, pipe in too. they are very good haha. And thanks tt.