Re: Continued blood loss with UC on diet - how long is normal?

[Guest guest]

After starting a medicine for thrush (still have it! suspected I had cadiditis

for years now but no one would believe me), I broke out in a " drug rash, " which

continued to worsen after going off the thrush medicine. Since the thrush

medicine's molecules are too large to be absorbed into the body (of course, this

not account for open lesions in digestion), and the mesalamine does get absorbed

into the body, my gastroenterologist go the opinion of another doc, who said

let's take her off the mesalamine. I did that and the drug rash symptoms

continued to get worse for a couple weeks (as to be expected) and then got

better. Along with these symptoms much of the swelling in my abdominal area went

away too. I was on allegra to stop the rash, since it was like have a burning

red, dry puffy soar all over your body for a few weeks, and when I went off of

that the bleeding came back.

I have thought that maybe antihistamines could be helpful in the future to

control bleeding, but have not suggested this to anyone yet. Currently I am on

quercetin - which stopped histamine-containing white blood cells from being so

hair-trigger-response - as well as a different thrush medicine.

I'm not sure if an allergic reaction could cause anemia. One thing my naturopath

told me is the the body can also sequester iron during a bacterial infection

because bacteria feed on the iron too - they love it - so the anemia can become

worse even if there is technically more iron in the body itself. I suppose any

drug that interferes in some way with iron absorbtion or utilization would

induce anemia too. I'd do some research into the drug, but also look at more

obvious symptoms like blood loss through heavy menstruation, or bleeding. If

you're not absorbing nutrition you may have to double up on doses of iron and

other vitamins like B (and a little bit of C, although it is acidic) in order to

absorb the iron better.

Kat

>

> >

> >

> > Hello,

> >

> > This is my first post here, so sorry if this is too much detail, but I feel

> > a little lost about what is happening and I dont' know how much information

> > is helpful for anwering my questions. Thank to everyone who reads this!!

> >

> > Here is a brief paragraph about my history. I had painful

> > bloating/distention from 6 rounds of antibiotics in 8 months, then started

> > bleeding after the last round in June 09, at which time I was diagnosed with

> > UC. I tried various dietary changes and avoided medicine until December 09

> > when I had a blood transfusion and started prednazone and mesalamine. The

> > prednazone didnt' seem to help that much and has caused lots of painful side

> > effects, but mesalamine stopped the bleeding (at that point it was 8-12/day

> > most with blood) and I was very anemic. Turns out I am allergic to

> > mesalamine, so I went off of that in mid-January right after starting to eat

> > only SCD legal foods. I was on allegra for the drug rash, but when I stopped

> > that the bleeding returned in much smaller quantities. I continued to only

> > go 3ish times/day, less urgency, minimal pain by comparison, and less

> > bloating/gas.

> >

> > (I had also been experiencing schizophrenic symptoms that increased

> > gradually since the first round of antibiotics, which I had to mentally turn

> > off, and which have subsided since the transfusion and introduction of the

> > diet.)

> >

> > I just restarted with the actual beginner's diet last week and did that for

> > 5 days (turns out the DCCC I bought for it was not legal and contained

> > sugar). I ate a bunch of bananas for a day, because I was getting really

> > fatigued and headachy from almost no carbs for so long. Then I ate only

> > legal cheese/chicken soup for most of the day to restart the diet and then

> > added in squash and spinach, which seemed to settle with me okay.

> >

> > I realized bananas are not so good for me in large quantities - they cause

> > burning. And cheese might not be good at all (gassy, bloating), so I stopped

> > both, and seem to be doing better today. Mostly formed stools! But still

> > bleeding since mid-January.

> >

> > I was wondering how long it takes people to get better from the bleeding?

> > My gastroenterologist had not heard of the diet - but said I could give her

> > info about it! - and wanted me start another drug, which would take a long

> > time to work and has many side effects. I would like to avoid medications if

> > possible. I am just now finishing my taper with prednazone, and it is

> > literally hell coming off of it.

> >

> > I guess another question I have for people is, what do you experience when

> > starting the diet and/or coming down from prednisone? I have had aches,

> > joint pain, headaches, anger, fits of crying that last up to half-an-hour,

> > inability to concentrate, fatigue (hard to walk up stairs), difficulty

> > sleeping, violent thoughts, feeling feverish, and my planterfaciitis has

> > come back after a couple years without it (thanks to yoga!). If all this is

> > normal, then that's great. I just feel at a loss about what is happening to

> > me. (I read that detoxing by starving out bacteria can cause some of

> > this....but it feels very extreme!)

> >

> > I guess one more question is, in your experience, is eating a lot of red

> > meat (particularly beef) okay for a while in the beginning? That seems to

> > settle best with me, and the fat in it satisfies really really bad fat

> > cravings I've been having. Tried peanut butter once but I think that is too

> > harsh.

> >

> > Thanks to anyone who has any input on one (or all!) of my questions. I have

> > a great naturopathic doctor, but I feel feedback from people going through

> > this would be really helpful.

> >

> > Kat

> >

> > 27 years old

> >

> > Diagnosed UC June '09

> >

> > Meds: end of taper with prednazone

> >

> > SCD foods only: Jan '10

> > Restart at beginning of diet Feb. '10

> >

> >

> >

>

[Guest guest]

Thanks. Yeah, my naturopath wanted to wait until I was off of the prednisone

before testing my thyroid. I think prednisone must affect its function. But

yeah, I have suspected weird thyroid function as well as candiditis for years

now. Another naturopath suspected it a three years ago but when I saw an

endocrinologist, he said my levels were " within normal range " according to Group

Health, my HMO. Of course, they also told me my vitamin D levels were normal

when all the naturopaths I have seen have looked at the same numbers and said

they were very low and prescribed big doses off it as a suppliment.

I have had autoimmune disorders since I was born, but I lost my hair for four

years until last year - was constantly fatigued, depressed, anxious, weird heart

things, constantly had/continue to have layer of fat everywhere despite lots of

exercise. I will see what the results show from the blood test soon. Thanks for

your thoughts.

I'll also check out the link and ask my naturopath about it.

Kat

>

> Hi Kat

>

> With being anemic in the past have you checked your thyroid?

> Also you should look into this for your UC

> http://www.lowdosenaltrexone.org/

> The good thing about this is that it does not supress your immune system.

>

> Sky

>

>

> ________________________________

>

> To: BTVC-SCD

> Sent: Fri, 19 February, 2010 1:59:45 PM

> Subject: Continued blood loss with UC on diet - how long is normal?

>

>  

> Hello,

>

> This is my first post here, so sorry if this is too much detail, but I feel a

little lost about what is happening and I dont' know how much information is

helpful for anwering my questions. Thank to everyone who reads this!!

>

> Here is a brief paragraph about my history. I had painful bloating/distention

from 6 rounds of antibiotics in 8 months, then started bleeding after the last

round in June 09, at which time I was diagnosed with UC. I tried various dietary

changes and avoided medicine until December 09 when I had a blood transfusion

and started prednazone and mesalamine. The prednazone didnt' seem to help that

much and has caused lots of painful side effects, but mesalamine stopped the

bleeding (at that point it was 8-12/day most with blood) and I was very anemic.

Turns out I am allergic to mesalamine, so I went off of that in mid-January

right after starting to eat only SCD legal foods. I was on allegra for the drug

rash, but when I stopped that the bleeding returned in much smaller quantities.

I continued to only go 3ish times/day, less urgency, minimal pain by comparison,

and less bloating/gas.

>

> (I had also been experiencing schizophrenic symptoms that increased gradually

since the first round of antibiotics, which I had to mentally turn off, and

which have subsided since the transfusion and introduction of the diet.)

>

> I just restarted with the actual beginner's diet last week and did that for 5

days (turns out the DCCC I bought for it was not legal and contained sugar). I

ate a bunch of bananas for a day, because I was getting really fatigued and

headachy from almost no carbs for so long. Then I ate only legal cheese/chicken

soup for most of the day to restart the diet and then added in squash and

spinach, which seemed to settle with me okay.

>

> I realized bananas are not so good for me in large quantities - they cause

burning. And cheese might not be good at all (gassy, bloating), so I stopped

both, and seem to be doing better today. Mostly formed stools! But still

bleeding since mid-January.

>

> I was wondering how long it takes people to get better from the bleeding? My

gastroenterologist had not heard of the diet - but said I could give her info

about it! - and wanted me start another drug, which would take a long time to

work and has many side effects. I would like to avoid medications if possible. I

am just now finishing my taper with prednazone, and it is literally hell coming

off of it.

>

> I guess another question I have for people is, what do you experience when

starting the diet and/or coming down from prednisone? I have had aches, joint

pain, headaches, anger, fits of crying that last up to half-an-hour, inability

to concentrate, fatigue (hard to walk up stairs), difficulty sleeping, violent

thoughts, feeling feverish, and my planterfaciitis has come back after a couple

years without it (thanks to yoga!). If all this is normal, then that's great. I

just feel at a loss about what is happening to me. (I read that detoxing by

starving out bacteria can cause some of this....but it feels very extreme!)

>

> I guess one more question is, in your experience, is eating a lot of red meat

(particularly beef) okay for a while in the beginning? That seems to settle best

with me, and the fat in it satisfies really really bad fat cravings I've been

having. Tried peanut butter once but I think that is too harsh.

>

> Thanks to anyone who has any input on one (or all!) of my questions. I have a

great naturopathic doctor, but I feel feedback from people going through this

would be really helpful.

>

> Kat

>

> 27 years old

>

> Diagnosed UC June '09

>

> Meds: end of taper with prednazone

>

> SCD foods only: Jan '10

> Restart at beginning of diet Feb. '10

>

>

>

>

>

>

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> Yahoo!7: Catch-up on your favourite Channel 7 TV shows easily, legally, and

for free at PLUS7. www.tv.yahoo.com.au/plus7

>

[Guest guest]

> After starting a medicine for thrush (still have it! suspected I had cadiditis

for years now but no one would believe me), I broke out in a " drug rash, " which

continued to worsen after going off the thrush medicine. Since the thrush

medicine's molecules are too large to be absorbed into the body (of course, this

not account for open lesions in digestion), and the mesalamine does get absorbed

into the body, my gastroenterologist go the opinion of another doc, who said

let's take her off the mesalamine. I did that and the drug rash symptoms

continued to get worse for a couple weeks (as to be expected) and then got

better. Along with these symptoms much of the swelling in my abdominal area went

away too. I was on allegra to stop the rash, since it was like have a burning

red, dry puffy soar all over your body for a few weeks, and when I went off of

that the bleeding came back.

>

> I have thought that maybe antihistamines could be helpful in the future to

control bleeding, but have not suggested this to anyone yet.

If it worked, that would just be a way of controlling the symptoms, not getting

rid of the root cause.

> Currently I am on quercetin - which stopped histamine-containing white blood

cells from being so hair-trigger-response - as well as a different thrush

medicine.

I'm unfamiliar with quercetin - just looked it up and read about it - how is

that working

out for you?

>

> I'm not sure if an allergic reaction could cause anemia.

Menstrual age females often have some level of anemia, because the " normative "

levels

were determined based on the male bell curve.

Also - you are bleeding - so anemia follows along with that.

> One thing my naturopath told me is the the body can also sequester iron during

a bacterial infection because bacteria feed on the iron too - they love it - so

the anemia can become worse even if there is technically more iron in the body

itself.

That is very interesting. I bet they use it to help build their

biofilm condominium structures.

> I suppose any drug that interferes in some way with iron absorbtion or

utilization would induce anemia too. I'd do some research into the drug, but

also look at more obvious symptoms like blood loss through heavy menstruation,

or bleeding. If you're not absorbing nutrition you may have to double up on

doses of iron

Iron pills are discouraged on SCD because they can cause gut irritation.

People with very low iron take it through IVs.

I've forgotten if someone has yet suggested the Vitamin E enema to you to help

stop the bleeding. In your case, though, given your range of sensitivities, I

would definitely start out with a very small dose, if you are interested in it:

http://curezone.com/forums/fm.asp?i=67345

And also, just seconding Sky in suggesting the low dose naltrexone, which

is great for auto-immune conditions.

And if beef and beef fat is what is working best for you at the moment, go

with it. You could also make beef bone soup for intro, which is delicious.

Have you tried ghee/butter or coconut oil for alternate healthy fats?

Mara

[Guest guest]

> I'm unfamiliar with quercetin - just looked it up and read about it - how is

that working

> out for you?

I dont' feel like I have a way of knowing. I started just after I started

bleeding again after stopping allegra. Some things have been better. Some worse.

But I have also restarted the diet since then, and tried different foods, etc.

So no way of knowing.

> Iron pills are discouraged on SCD because they can cause gut irritation.

> People with very low iron take it through IVs.

Wow. I read that in the book, or somewhere. I told my naturopath about it and

she said when my feritin levels are back up then we could think about not using

the iron pills. I am taking gentle iron (25 mg iron) 2-3 times/day. I was

concerned that it would feed the bacteria, but I also don't want to become more

anemic. I am just now not seeing weird black things in my vision moving all the

time and able to walk up stairs ok most of the time. I would be all for another

blood transfusion if it was necessary. Do you (or anyone else) know how bad it

is to be taking iron?

I haven't tried the butters or vitamin E enemas, or the naltrexone. I'll look

into those. I am taking vitamin E every day at 400IU I think, plus cod liver

oil, primrose oil, rhodiola (an adaptogen that works on cortisol regulation),

and a bunch of vitamin B, D, A, multivitamins, biotin (for hair loss), and I

think more things I can't remember right now.

Thanks for all the information. I am not eating dairy right now, which has

decreased bloating I think but not helped with the bleeding. I will start the

homemake yogurt soon and see if that helps.

Kat

>

> > After starting a medicine for thrush (still have it! suspected I had

cadiditis for years now but no one would believe me), I broke out in a " drug

rash, " which continued to worsen after going off the thrush medicine. Since the

thrush medicine's molecules are too large to be absorbed into the body (of

course, this not account for open lesions in digestion), and the mesalamine does

get absorbed into the body, my gastroenterologist go the opinion of another doc,

who said let's take her off the mesalamine. I did that and the drug rash

symptoms continued to get worse for a couple weeks (as to be expected) and then

got better. Along with these symptoms much of the swelling in my abdominal area

went away too. I was on allegra to stop the rash, since it was like have a

burning red, dry puffy soar all over your body for a few weeks, and when I went

off of that the bleeding came back.

> >

> > I have thought that maybe antihistamines could be helpful in the future to

control bleeding, but have not suggested this to anyone yet.

>

> If it worked, that would just be a way of controlling the symptoms, not

getting rid of the root cause.

>

> > Currently I am on quercetin - which stopped histamine-containing white blood

cells from being so hair-trigger-response - as well as a different thrush

medicine.

>

> I'm unfamiliar with quercetin - just looked it up and read about it - how is

that working

> out for you?

>

> >

> > I'm not sure if an allergic reaction could cause anemia.

>

> Menstrual age females often have some level of anemia, because the " normative "

levels

> were determined based on the male bell curve.

>

> Also - you are bleeding - so anemia follows along with that.

>

> > One thing my naturopath told me is the the body can also sequester iron

during a bacterial infection because bacteria feed on the iron too - they love

it - so the anemia can become worse even if there is technically more iron in

the body itself.

>

> That is very interesting. I bet they use it to help build their

> biofilm condominium structures.

>

> > I suppose any drug that interferes in some way with iron absorbtion or

utilization would induce anemia too. I'd do some research into the drug, but

also look at more obvious symptoms like blood loss through heavy menstruation,

or bleeding. If you're not absorbing nutrition you may have to double up on

doses of iron

>

> Iron pills are discouraged on SCD because they can cause gut irritation.

> People with very low iron take it through IVs.

>

> I've forgotten if someone has yet suggested the Vitamin E enema to you to help

> stop the bleeding. In your case, though, given your range of sensitivities, I

> would definitely start out with a very small dose, if you are interested in

it:

>

> http://curezone.com/forums/fm.asp?i=67345

>

> And also, just seconding Sky in suggesting the low dose naltrexone, which

> is great for auto-immune conditions.

>

> And if beef and beef fat is what is working best for you at the moment, go

> with it. You could also make beef bone soup for intro, which is delicious.

>

> Have you tried ghee/butter or coconut oil for alternate healthy fats?

>

> Mara

>

[Guest guest]

Yeah, thanks . It sounds like everyone is soooo different! I started not

being able to digest lettuce a while ago. Interestingly, I never seemed to have

an issue with cabbage, so I think I'll try that again soon - I know others have

not tolerated it as well.

I have to remember too that I have only just started, and I probably threw my

body through a loop by eating all those starches and sugars from Thanksgiving on

due to the prednisone. It may take a little bit to recover from that and that's

ok. It is so scary to be bleeding! The limbic system knows that and freaks out

regardless of what my neocortex is telling it! But yes, the other posts from

people who have been dealing with this for longer are very very encouraging for

the most part.

Thanks!

Kat

>

> I am on SCD since July 2009, and for IBS, not

> US. I don't ever have bleeding (except the rare

> hemmorhoid). Even so, I didn't really start

> being able to add foods until about three weeks

> ago. I had chicken/turkey, salad, most fruits,

> broth, almond butter. But rather suddenly a few

> weeks ago I have been able to add more veggies

> (hurrah, I love veggies!), I THINK egg is OK,

> ghee/butter. Maybe some beef. I wouldn't dare

> try yoghurt yet. Anyhow, mucho sympathy for

> continued bleeding but I don't think it's

> indicative that nothing will work just because

> you can't add more foods for quite awhile. Some

> people can from what I read, some of us just take longer.

>

>

>

>

> Hi Kat - I'm very behind on reading all the

> updates…if it makes you feel any better, I've

> been wondering the same thing. Diagnosed w/ UC

> end of Sept. '09, discovered I'm allergic to all

> Tier 1 drugs, next step is Prednisone which I am

> refusing to take. I've been trying SCD since end

> of Nov. '09 and while it has definitely made life

> manageable I am still struggling and can not get

> beyond certain foods. Beef seems to work best for

> me too, but I try to limit the amount I eat. I'm

> also taking VSL3 (which is SCD illegal) but that

> seems to have helped here & there. It seems like

> one wrong step with food for me and I get set way

> back with lots of bleeding. Can't seem to get

> beyond protein (beef, poultry, eggs), butternut

> squash, bananas & carrots. I eat a bunch of

> chicken broth and seem to be making it every 2-3

> days. Can't do the yogurt for a while, trying to

> see what effects dairy has on me. I go between

> 3-5 a day, first few are always very bloody. I

> can not speak to the erratic emotions, as I have

> not experienced those (could be the drugs). I am

> working with a hollistic nurse and if she were

> geographically closer I would be in her office more frequently.

> So I know this doesn't help, but at least you

> know there is someone else out there struggling.

> -

>