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BTD Forums  /  The Encyclopedia/ D'Adamo Library  /  Surviving Celiac
Posted by: queueball (Guest), Monday, September 11, 2006, 10:48pm
Here's the deal.

I have specific problems, and somewhere out there are specific solutions.

The philosophy of this site is supposed to be individualized solutions for individual problems, and I buy that.  Clearly, I have an unusual set of dis-eases, and will require a specific and unique treatment.

I get very tired of the excitement some people (many, most?) display when I start to describe my symptoms.  I barely get started before I am interupted with the magic solution: digestive enzymes, cancer surgery and therapy (of course I have colon cancer, they say), cleansing, raw foods, prayer (jeez!), meditation, yada, yada, yada.  This is another reason I have been away from this site for a while.  I needed NOT to hear from those taking a wild shot in the dark without considering the described particularities of my condition and the diet and life-style solutions I am in the midst of and have explained.  For example, I am repeatedly told to eat plenty of green vegetables by one well-meaning person or another.  I have an organic garden, and have eaten plenty of fruits and veggies my whole life.  Fiber and chlorophyll are not the problem.  I am not a typical American idiot.

When I began BTD, I had a list of over 40 specific and unique symptoms.  That was in late March.  A month later I further restricted my diet by avoiding not only all gluten, but all grains of any kind.  This was after I was convinced by some on this site that I am a likely candidate for celiac disease.

Since then, my list of symptoms has steadily decreased, now to less than 20, so I am on the right track.  Many, including one or two on this site, have suggested that I am not on the right track, and that I should try their way.  No way.  And if you had been paying attention, you would know that I have had great improvement in many areas, and that risking a radical change or complication in treatment is out of the question.  I am taking my life in my hands, and walking a tight-rope.  If things get any worse, I will be on the road to quick demise, either at the hands of the medical profession, or just alone out here in the woods.  The coming winter scares me.

These are the remaining issues:

I have been unable to control or stop my G. I. bleeding.  It is a slow seepage which for a healthy person would likely not lead to anemia.  It is such a small amount that a healthy person could manufacture replacement blood and never notice a problem.  I take three grams of cayenne daily to try to control this bleeding.  A more effective hemostatic herb would be very helpful, if anybody knows of any.

Due to the recent onset of serious celiac disease, my ability to absorb iron has been compromised, so I have become anemic.  Hemoglobin was around 7 last I checked, about half what it should be.  When I complain of fatigue, please do not recommend rhodiola (tried it) or adrenal fatigue treatment (considered it).  Dammit.  I am fatigued because I am anemic.  Period.  Even breathing pure oxygen is of no benefit, since I don't have the blood to transport it.

In order to by-pass the G. I. tract, I am self-administering 2cc of Infed iron (ferrous sulfate) sollution every two weeks.

I was begining to notice improvement in my fatigue and other symptoms up until about a week ago, when I started bleeding again.  This seems to be a pattern.  Whenever I start feeling better, I start bleeding and slide back downhill.  It is as though something in my gut can only hold back so much blood, and the threshhold for bleeding is gradually lowering, blood-count-wise.

Since first noticing problems, three or four years ago, I have lost almost 1/4 of my body weight.  I am 6'3" and have never been obese.  I now weight about 160, less than I have weighed at any time since puberty.  Before starting BTD, I weighted about 185, with a fat ratio of about 15%, so I am clearly losing muscle, and perhaps bone, mass.

Prior to BTD, my normal body temperature was about 97.7, and had been since I was a child.  Occasionally in recent years, pre-BTD, I have had episodes of low-grade fever.  Since starting BTD, my temp is about 97.7 in the morning, but as soon as I move around or eat, it usually goes up to 99. 5 or so and stays there, every day.  This contributes to my fatigue and white willow bark does not help.  A jump in the pond does help, however.

Thanks to my dead-beat free-loading son, my finances are in such a state that I am going to cut off the phone and internet, because I cannot afford them, and I am reducing the herbs I am taking to cayenne and bladderwrack, along with beneficial culinary herbs.  I am making ghee and flax bread.

I am sticking to the BTD and celiac diets, along with very little else in terms of remedies and treatments.  I cannot afford anything else anyway, and I don't think much of the supplements I have been taking have been doing much good, mainly because I ate a "healthy" diet before BTD.

So, once more, these are my questions:

Is there anything out there more effective than cayenne at stopping G. I. bleeding?

What are the differences in symptoms and severity for male, as opposed to female, celiac sufferers?

I have read bleeding is "associated" with celiac disease.  Why?

Why the chronic low grade fever?

I am forgetting something.  It will come to me.

Later, q.

Posted by: Lola, Monday, September 11, 2006, 11:29pm; Reply: 1
you do add ghee to your food?

how about bromelain?

you definately are doing something right.........
Posted by: italybound, Tuesday, September 12, 2006, 1:53am; Reply: 2
q, over in the 'excessive choc cravings and O's' thread it's mentioned.......
"Funny that I read in another thread that being anemic may have nothing to do with iron intake, but the vit. A and calcium may be missing so the body can't absorb/use the iron."

Just a thought, trying to help, don't yell at me.    ;)
Posted by: Victoria, Tuesday, September 12, 2006, 5:45pm; Reply: 3
Quoted from queueball

. . .  and white willow bark does not help.  

I have read bleeding is "associated" with celiac disease.  Why?

White willow bark can thin blood, like aspirn does.  Just for your information, in case you didn't already know.  (Don't yell at me, either) :-)

Bleeding associated with celiac disease may be because of the leaky gut.  Intestinal wall gets so thin from damage that it becomes porous.
Posted by: 312 (Guest), Tuesday, September 12, 2006, 7:38pm; Reply: 4
This may not be of help, but I had bleeding hemmorhoids for quite a while, not lots of bleeding, but enough to be
worrisome.  I found that taking a milkthistle/ginger combo helped them, and avoiding even mineral water that was
carbonated.  I thought that bubbly mineral water seemed to cause gas/bleeding to continue.  Of course, wheat also
made it bad.  I will see if I can find any hemostatic herbs in my "health library", be back soon.....
Posted by: Lloyd, Wednesday, September 13, 2006, 6:50am; Reply: 5
It seems you are working on the assumption that the bleeding is celiac related. The symptoms and so on indicate celiac sprue as a strong candidate, as does the improvement via specific diet. If you have not already done so, it may be worth spending a few hours searching the net for other GI bleeding symptoms/causes as a double check, also as a posssible second or third issue. One such source is the Medline Encyclopedia (NIH) which is a good place to start, even if it has no specific answers.

A search yielded no answers on your cayenne alternative question.

Have you narrowed down where in the tract you are bleeding? Is it clearly upper inestine?

Anyhow, since no one else 'wants' to be yelled at, feel free to yell at me if you need to. I may yell back, though. LOL. ;)

PS As mentioned above, white willow bark (source of Salicylic acid) is closely related to Aspirin (acetylsalicylic acid). Aspirin is known to be a GI irritant to type O.
Quoted from Dr Tom Greenfield
Aspirin is unsuitable for those with salicylate intolerance, and causes internal bleeding, particularly in individuals of blood group O,
Posted by: italybound, Thursday, September 14, 2006, 12:10pm; Reply: 6
Quoted from Alan_Goldenberg
Anyhow, since no one else 'wants' to be yelled at, feel free to yell at me if you need to.

Lloyd, you're a real trooper, you are.  ;) ;D 8)
Posted by: queueball (Guest), Wednesday, September 20, 2006, 11:29pm; Reply: 7
Hi, ya'll,

Lola:  I put ghee in my food, in small amounts since the flavor is strong.  I also take a teaspoon of it on an empty stomach at least once a day.  I eat papaya and pineapple frequently, both of which I believe are sources of bromelaine.  I also eat bananas, which I think may have some as well, not sure.

KN:  I get plenty of calcium and vitamin A in my diet, and I was taking some supplementally till I decided to quit all supplements for a while.

Vic:  Dr. D'Adamo lists white willow as beneficial, if I am not mistaken, which is why I tried it.  He makes a point of saying don't use other blood-thinners like garlic if you are bleeding, so I thought I was safe.  This oversight should be corrected.  I also consulted with an herbalist who said it did not have the same effects as aspirin.  I knew it was the original wild source of aspirin, which was later produced artificially.  You may be right, that it does have the same effect as the manufactured drug, and I suspected that, so I quit taking it as soon as I started bleeding again.  As for leaky gut causing bleeding:  The research I have done online tells me it is not the actual cellular lining of the gut that is damaged (as will celiac disease) and creates intestinal permiability, it is erosion of the mucosal lining, which is constantly sloughed off under normal conditions.  This creates a situation where larger than normal molecules, MOLECULES, are allowed to pass into the blood stream, triggering an immune reaction.  These molecules are as much smaller than a blood cell as a blood cell is smaller than a human body.  The leakage of large molecules into the blood stream is a phenomenon on a completely different scale than the leakage of blood from capillaries through the wall of the intestine, which would require and actual rift, or injury, in the wall of the intestine.  In other words, no actual injury need be involved in leaky gut, but for the passage of blood cells, such an injury is necessary.  This is all my conclusions, and you will be glad to know a friend of mine agrees with you and stubbornly argued that leaky gut could be a source of bleeding.  It still makes no sense to me, however.  My explanation below, related to celiac, makes more sense to me.  I do think it likely, thanks to other symptoms (especially fever - I've been waiting for somebody to make that connection), that I do have LGS, however.

Paulam:  I have also had a problem with rhoids.  Had a pair for several years.  Named them after my kids.  They healed after I started BTD, but one popped up and bled for a while (the only visible blood I have had) at the stressful time I kicked my son out.  At the time I stayed in a hotel room for two weeks.  I have a squatty-potty here, home-made, and there may be a connection, as squatting when pooping is supposed to be healthier.  The squatty-potty was constructed about the same time as I started BTD, so it may have been a return to western-style defecation in the hotel room that contributed to the rhoid return.  I have seen ramps that attach to the toilet seat you can buy if you want to try squatting, the natural way to eliminate.  Supposedly the sigmoid colon, rectum and anus are brought more into line for easy, stressless defecation when in the squatting position.  It also makes a wonderful topic of conversation with guests around the dinner table.  You said you'd be back.  Where are you?

Lloyd:  My searches online have been frustrating and inconclusive in the past.  I will try the link you provide.  As for bleeding location.  I have not had either upper or lower endoscopies done.  Can't afford it.  However, after having cleaned myself out with a high colonic during a bleeding cycle (definite blood in feces) I retained water in my colon for about ten minutes, then tested it for blood after expulsion.  There was no sign of blood.  This is inconclusive, but suggests the colon is not the source, or not much of one.  I also never get visible blood except when it has come obviously from a hemorhoid outbreak, which is rare.  My MD thinks I do not have significant ulcers, because I have never had black feces except when on high iron doses, although I have had bad acid reflux in the past (one of the symptoms relieved by BTD).  That leaves the small intestine, and the erosions of celiac disease, which I discuss below.

Thanks for all the responses.  You are all wonderful, perfect angels and deserve my life-long gratitude and praise.

Just kidding.  Go to hell.

Did I tell you I'm bipolar?

My sense of humor has returned due to lack of oxygen to my brain.  Enjoy it while it lasts.

I have been bleeding, sometimes relatively heavily, for over two weeks now, reversing all the blood-building I have done in recent months.  Yesterday I got the results of Monday's CBC back from the lab, and my hemoglobin is down to 6.1, almost the lowest it has ever been.  It was a shock, because I don't feel as bad as I should with that blood count, I would think.  I went through a brief panic phase, thinking I needed to run to the hospital and get a transfusion, or get my iron prescription re-filled and take the injection ahead of time.

But I have settled down and decided to be philosophical about my situation.  Perhaps my body, somehow, knows best about the course of my recovery.  And perhaps I know best what I need to do, and not all these other people.  

Couple of you have poo-pooed fasting, but I have been craving a fast for months.  Here is the method:  Sunday night was my last meal.  Monday night I took all my meat, fish and poultry and put it on trays in the oven to roast for half an hour at 400.  While this was cooking, I put a five gallon stock pot on with four gallons of water to heat, then cut up almost all the vegetables left in the fridge and threw them in the water, along with the meat after it was nice and brown.  This I have been boiling and drinking since monday night, and I feel significantly better.  A broth fast I guess you would call it.  Near as I can tell, my bleeding immediately was reduced, and may be stopped by now.  I also have been relieved of all abdominal pain and gas.

I suspect that my recent increase in fiber intake, thanks to flax bread, may be actually putting a strain on my eroded small intestine.  Fiber is great, but if you dont have the mucosal lining, which is eroded by celiac disease, to lubricate the passage of potential poop, it seems to me this unnatural friction could lead to abrasion and bleeding.  This is just my diagnosis, and seems to suggest a contradiction between the treatment of celiac and routine BTD guidelines.

I am also going to discontinue the ferrous sulfate injections for the time-being.  It is a waste of money and physiological energy so long as I am still bleeding.  I also don't like the artificial nature of this iron source, especially since it does not provide the other components necessary for the body to manufacture blood cells.

More on the fast:  It seems to me that if my micro-villi have been lopped off by celiac disease, that a highly fibrous chyme (the stuff food becomes while passing the small intestine) would be difficult for my small intestine to process.  There would also be nothing to hold the protective and lubricating mucosal lining in place.  The surface area for contact and transfer of nutrients would be greatly reduced the more indigestible fiber there is.   The fiber would also, I think, be able to wipe away the mucosal lining, inducing leaky gut and exposing the already damaged intestinal wall to further abrasion.  By taking my nutrients in broth form, it seems to me that this lack of surface area is compensated for by the free circulation of the liquid.  Any abrasion of the duodenal lining is also reduced by the presense of free-flowing liquid, and gas production is reduced as well, so the physical stress that may be aggravating or even causing my bleeding should be greatly reduced, and healing of bleeding areas should commence quickly.

We shall see in the coming days and weeks.   I do not know how long I will stay on the liquid diet.  I will watch my weight and make sure I do not lose any, or not much.  I am putting ghee in my broth.  Yum.

Later, q.
Posted by: Lloyd, Wednesday, September 20, 2006, 11:51pm; Reply: 8
The broth sounds reasonable.

Something that may help, or not: Slippery Elm Bark: The inner bark rind of. this plant has demulcent and emollient. effects, which protect the GI tract from. excess acidity. ...

(It's part of GastroGaurd)

I use it from time to time, it forms a muccous material as tea. No need to ingest the actual fibers.

Also, it would seem you should be using L-Glutamine 200mg 2/day on an empty stomach.....  help with the permeability issues.
Will post more if anything occurs to me.
Posted by: Lola, Thursday, September 21, 2006, 12:34am; Reply: 9
glad you re enjoying your broths with ghee!

it s the right nourishment to say the least!
bon appetite!
Posted by: 41 (Guest), Friday, September 22, 2006, 3:51am; Reply: 10
Quoted from pkarmeier
q, over in the 'excessive choc cravings and O's' thread it's mentioned.......
"Funny that I read in another thread that being anemic may have nothing to do with iron intake, but the vit. A and calcium may be missing so the body can't absorb/use the iron."

Same thought occured to me. Wonder why Dr's don't pick up on this. Also, stress can cause all kinds of digestive problems and it sounds like there is a bit of stress in your life right now. It may be wise to rid yourself of the stesses as best as you can. Also, O's seem to deal with stress best if on a regular exercise routine. I did not notice if this was mentioned.

Another thought is that I seem to do much better using olive oil as opposed to ghee. I noticed a change in my "digestion and elimination" when I made ghee and started using it in place of olive oil in cooking. During the past couple of days, I read that olive oil can help digestion which I did not know. (I think it was mostly beneficial digestive bacterias it was talking about). What I read actually said to take a spoonful like some say to take ghee. In the few weeks I have been trying things, olive oil works far better for me than the ghee.

I have a freind who has davatickulitis **now I know that is not how to spell it, but it is the best I could do, at least it sounds like I spelled it, so you will know what I meant ;) **. Anyway, when her's is acting up, all she can eat is broth. This past spring she went 3 months on broth!!! Had to slowly add solids after such a long flare-up. Just a thought, I don't know enough about intestinal troubles to say, but I did not hear it mentioned (unless leaking gut is the same thing).

These are just some food for thought ideas that occured to me. (I really don't like to be yelled at either :( ) but wanted to share my thought incase they might help.

:D Sandy O
Posted by: Melissa_J, Friday, September 22, 2006, 5:44am; Reply: 11
I can totally agree with you that celiac disease is rough.  My complications are different from yours, but certainly stubborn.  Healing takes far too long when you're not a kid anymore.

I don't have much to offer that hasn't already been offered, other than that.  Slippery elm is nice, I second that suggestion.
Posted by: italybound, Friday, September 22, 2006, 8:06am; Reply: 12
q, just ran across this:

"Helicobacter pylori (H. pylori) infection. - these bacteria live in the stomach lining of many people, usually without any symptoms. It causes inflammation of the stomach lining (gastritis), ulcers
Pernicious anaemia - this affects the lining of the stomach and results in vitamin B12 deficiency."
"There may be internal bleeding appearing as blood in the vomit, or black, tar-like, faeces, or the bleeding may be so slight as to pass undetected, and the patient goes to the doctor with iron-deficiency anaemia."
This site suggests Chron's disease:

or was it the lining of the intestines you were speaking of. It's 3 AM right now, so my mind is a bit tired. :-)
Posted by: ISA-MANUELA (Guest), Friday, September 22, 2006, 8:31am; Reply: 13
:o whisper..whisper..whisper...c o l o s t r u m outta Swicherlandli :D ;D  for O's ;)
Posted by: Melissa_J, Friday, September 22, 2006, 4:49pm; Reply: 14
Yes, I've had h. pylori a few years ago and had the black tarry stool.  They can test for it now with a breath test, which is probably pretty inexpensive compared to blood tests.  I don't know how easy it is to treat without Rx drugs, since I went the antibiotic route.  It worked, but had lots of side effects, so I'd try the natural route next time.  Occasionally I take a few things as preventatives if my tummy starts to get irritable.  Colostrum is one of those things that always sits well with my stomach, like dandelion and slippery elm...very gentle.

Anybody know if colostrum has any trace of casein in it?  I'm now absolutely casein free in hopes of helping my intestines heal.  I've heard about goat colostrum as well.
Posted by: Lloyd, Saturday, September 23, 2006, 12:14am; Reply: 15
Looked in LR4YT today and pulled out a couple more things.

Along with Slippery Elm, you might also consider Marsmallow Root and Sho-saik-to which are similar in effect.



Also, more for H.Pylori but also helpful with C. Albicans and gastric is Thyme, Oregeno, and Rosemary. Add them to your broth along with the ginger, to taste.
Posted by: italybound, Tuesday, September 26, 2006, 2:19pm; Reply: 16
q, just ran across this as I was searching for something else:
"Hepatic adenoma. This benign tumor originates in the hepatocytes the main type of liver cell. In most cases, hepatic adenomas don't cause signs or symptoms, but occasionally you may experience abdominal pain, a mass in the abdomen or blood loss. You're more likely to develop this type of benign tumor if you use birth control pills, but simply stopping the pill often causes the tumor to shrink. "
That is an exerpt from this article:

Posted by: queueball (Guest), Sunday, October 1, 2006, 4:28pm; Reply: 17
I can't reply to all the posts right now.  Football is on.  It is part of my stress relief therapy.  Visualized exercise, since I can't handle real exercise.

As I have said elsewhere, and which should be obvious, with chronic anemia, I cannot exercise.  I can barely walk around much of the time.  Hemoglobin, at last check, is 6.1.

I have been taking bladderwrack, in one form or another, for over a year for H. Pylori and Candida.  Also Komucha tea, which is supposed to have similar properties as well as providing many beneficial elements to the G. I. area.

Much of the rest of your many suggestions I either already do, or I cannot find or afford.

I stayed on the broth fast only four days.  It is not a real fast, so the craving for solid food does not go away as it does around the third day on a real fast.

There has been no sign of blood in my stool since I broke the fast, eight or nine days ago.  I am beginning to feel a bit better.  Abdominal pain much relieved as well.

As for stress relief, as I have pointed out, I kicked out my alcoholic son in June, and am having not further contact with him.  This was my major source of stress.

The other major source of stress is trying to figure out what is wrong with me and what to do about it, and then to find sources for the remedies, and so on.

After finding out my hemoglobin was down to 6.1, I panicked for a while, and then I had a revelation:  I really don't feel bad enough to be at 6.1, based on past experience.  I must have adapted somehow to being severely anemic.

So, what I have decided, against the advice of everybody, EVERYBODY, is to do nothing.  I will stick with dietary remedies, the Blood Type Diet and Celiac restrictions, BUT, I am taking no more supplements for now, and am discontinuing the iron injections.  This is a major stress relief.

Every time I get my hemoglobin up a bit, using supplements or injections, I start bleeding again.  This should tell me that maybe I should leave my blood alone.  My blood count, and therefore my blood pressure, can get only so low before the pressure on whatever is bleeding is reduced to the point where clotting can kick in.

In other words, I should listen to the wisdom of my own body, have faith in the course of healing or disease it will follow, and be patient and diligent in my diet, and quit farting around with harsh and overly strong "remedies", which seem to be having negative effects.

I have even cut out the cayenne and bladderwrack.  Somewhere I remember reading or hearing that taking any herb long-term without a break can cause that herb to have the opposite effect.  This may have been my error with cayenne.  I have become paranoid about the bleeding, and religious about cayenne.  It did do the job of stopping bleeding at one point.

Also, I cannot afford any more prescriptions or supplements, which is another source of stress.  I have to live on $3000 till May.






Posted by: KimonoKat, Sunday, October 1, 2006, 5:28pm; Reply: 18
We'll be thinking about you queueball.  Please check in via the library when you can.  Many of us are hoping you continue to improve and will look forward to your updates as you have the opportunity to check in.
Posted by: Victoria, Sunday, October 1, 2006, 6:01pm; Reply: 19
Thank you for updating us on how you are doing.  KK is right, a lot of us are pulling for you..  We rejoice for each of your small successes.
Posted by: Lloyd, Sunday, October 1, 2006, 10:43pm; Reply: 20
Best of luck, Q.

Pulling for you.

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