(from SCD listserve)
Yes, you may have seen my name cross your screen, but only a few times. I
tend to be a quiet watcher. I once wrote how the diet turned my existence
around in less than 24 hours. I knew the morning of April 6th 1997,
something was wrong. Actually, very different, not wrong. Back then my mind
could not sort things out to well. I had given up in March 1997. After
numerous resections, I had given up, no food, only water. And taking any new
medication that was said to show promise of treatment was off line, I would
do that no more. In 1982 I had been to the best Doctor in the world for
Crohn's and he had said "if its a treatment then the medication only masks
the disease, if its a cure then the problem will go away, if not, you
probably will return one day to a doctor like me". He was a surgeon. I knew
I was starving to death, really (5'10 and near 115 lbs). Then there was a
phone message, from the book store, my order was in(BtVC).
I sat at the table the morning of April 6th, truly confused. For years I did
not sleep through the night (always got up every couple of hours to go the
bathroom). I always had cramps and a bloated feeling, never had an appetite.
I was confused, and almost refused to believe that something so simple could make a difference. I had slept the whole night, gone were the cramps and bloating. And I even awoke on my stomach, had not slept on my stomach in decades. My wife looked at me and asked how I felt, well, "tired, fine and
While she looked in the back of the book for something to fix, I located the
bag the book came home in, I wanted the receipt. It is stapled to the inside
front cover. Dated 04/05/97 10:34 AM, cost $18.35 tax included. That was the
first day, a lunch, a dinner and very large change in life. Imagine the
amount of money you could have saved my insurance company in 1990 (over
$300,000.00). Life went exceptionally bad that year, and I was given the
"you need to make your final arrangements" line. My blood system went septic due to complications.
To Elaine of Heroes & Champions or at least the way I view them. Heroes are individuals who show determination in an event in time. They are often but a flash in time. Champions have dedication, perseverance, and an invisible hand that can reach out and lift the fallen time and time again. To you Elaine, I say thank you. A true Champion you are. I had fallen so very hard and your book pointed to a different direction, never down. I purchased your new book, but alas I gave it away. It is in the hands of a Apprentice Chef at a ski resort in Colorado. Who knows, maybe some day they will offer a SCD fare on their menus. We did have a most enjoyable dinner, and I could here a comment or two like, "If I fix it this way my dad can eat it". It is very difficult to get any one in the medical world, or the CCFA to acknowledge the SCD. So, go in the back door educate the Chefs of the world. again - Thank you Elaine.
to All sorry for the long post.
If you are ill, stick to the diet, if you are healthy, the same and then:
Change the World
Crohn's 1982 (diag.)
SCD - April 5th 1997 (Day One)
You asked - "By the way, how long is too long for one to be on prednisone?"
any time is to long, I was on it for 18 months, my right hip needs to be
replaced someday. Yes a big risk is osteoporosis and the others are cheap in
You didn't ask about Pentasa - "almost killed me it did". I went to Canada
and brought it to the US before it was approved in the States. According to
the drug company the FDA (and 40 million dollars in testing) required the
packaging, and dosage per unit changed. Well, six months later it was
released in the US. I went from a struggling 125 lbs to 117 lbs in 4 days.
Fortunately, I was to sick to even take pills and I knew if I went to the
doctor he would head put me in the hospital again. I took nothing and ate
small meals (prior to the SCD). Managed to get my weight to 125 before my
He had a royal fit when he found out I quit taking Pentasa with out telling
him. You see he had 282 patients on Pentasa and only one wasn't dying on
him, me. When I called the drug company and suggested they call him, they
were quite rude, then I told them about the actual documented fact of 282
patients. They called me back 2 days later and were very polite and
suggested they would like my medications back for examination.
SCD - I started on the diet April 5th 1997. I was on no medication,
vitamins, or food supplements and had lost weight down to 117 lbs and was
going fast. Prior to that day I tried to eat everything to put on weight.
I have also, followed this diet fanatically. Once past the "3 month flare"
it will be something else that will cause a flare, the diet by itself will
not cause an issue. I once had some very nice moist chicken, didn't know
that that bird had been stuffed, had a bad 4 days, I did.
Today I feel fine, though I can make the little monsters wake if I eat the
wrong thing. I prefer that they sleep, so I watch what I eat. It takes time,
and with the diet I have more time in a day, 18 hours without a nap. Today I
weigh a well balanced, healthy 161 lbs.
Change the World
SCD - April 5th 1997 (Day One)
My concern is that you will have surgery before all other avenues have been thoroughly explored and exhausted. I would like to offer a slightly different perspective that I developed on my own journey.
I am now on the scd but I still have my colon in tact after many years. 5 months is not long in UC terms.
I have come to believe that my UC has a psychosomatic element - my body making representations for things that the mind cannot bear to think about. AND that the surface skin of the colon is like the skin of the lungs. Asthma and excema are inflammation of the skin as is possibly ulcerative colitis.
For this reason I think that although I suffered very intensely for 12 months I didn't die. If you are feeling strong here is the story.
About 7 years ago, in my early 30's I was diagnosed with UC. M and B in stool were my only symptoms when I went to the doctor and was put on asacol and prednisolone. by the end of a few weeks I was very much sicker. They upped the dose. I made no improvement. Finally, I was in so much pain that they were worried I had a toxic megacolon so they told me to pack my bag and go to casualty. However I was waiting for my boyfriend to get home from work to accompany me. He got held up and while i was waiting I called the local alternative health clinic. I went to see a homeopath and was given something and later fell asleep at home. I never got to hospital.
I kept seeing the homeopath. For 12 months I lay on the couch, housebound and bedridden, bleeding and bleeding and screaming with pain. And incontinent of course, wearing nappies. But I stopped the traditional medications because they weren't helping and because I wanted to observe what my body was doing.
Yes there was a risk I would die, bleed to death. But I never felt I would. And I kept getting through it. And I would sit up all night, night after night, jam myself into an armchair padded out with hotwater bottles, and have my feet on one and another on my abdomen.
Now at the same time as all this, I was still seeing my psychotherapist who I had been working with for 4 years. To cut a long story short, my psychotherapist must have eventually worked out that there might be a connection between the psychotherapy work and my physical illness. Suddenly, one day, she told me we were ending the therapy and there would only be 3 more sessions. This is unheard of in traditional psychotheraputic practise. I was furious and devastated.
But, almost over night, I started getting better. Seemingly a miracle.
7 years after this spectacular remission I started getting some symptoms again about 6 months ago.
However this time, after speaking with my doctor and realising that no progress had been made in the thinking about this dis - ease I was going to be on my own. After nights of tireless searching on the internet, I found the scd and have been doing it for about 5 months.
Yes I still am incontinent sometimes if I make an unknowing mistake on hte diet. But I am not bleeding, I am not in pain, I have no mucous. I feel amazing now after getting used to the food and learning how to cook.
I am making some progress talking about the unbearable aspects of my life experience, putting words to things that are unspeakable. My new psychotherapist who's approach was very mindful from the start about my tendency to somatise - use my body to say stuff, has been working with me for 6 years.
On the psychosonatic aspects you might be interested in the work of Joyce Mc Dougall 'Theatres of the Body'. There might be other books, a bit more modern, but I dont know.
But I think my particular body is a very raw and fragile thing which is why I cant eat complex sugars.
It is a hard and slow journey and has taken up years of my life. But I am very glad I didn;'t have surgery.
I am sending you my love Amir.
Several people on this list are having severe food sensitivity issues, so to them I offer the following synopsis of my experience (long-sorry):
I was severly ill after the birth of my son in '92, with allergies, asthma, & chronic fatigue. My life history included chronic sinusitis, with copius amounts of antibiotics and antihistamines. During pregnancy I had to take antibiotics continually due to bladder infections. As I was getting sicker and sicker; the medications I was prescribed were getting scarier. I was unable to take care of myself or my family, let alone work.
I tried lots of doctors. I found out I had IBS and a bum gallbladder. One doctor discovered I had life-long food allergies, leaky gut and yeast overgrowth. I've been on elimination diets, yeast diets, Ultra clear sustain, I've eaten every supplement, had acupuncture, cleanses, colonics, movement therapy, psycho therapy, stess management, you name it.
Finally in '98 the doctor treating my leaky gut learned of a new treatment that desensitizes the body to allergens. I have been succesfully treated for corn, soy, wheat, milk, eggs, garlic, gold, animal hair, ragweed, pineapple, chocolate, honey, etc. The treatment is called "NAET" and it combines muscle testing & acupuncture. I don't know why it works, but it does. Yes, it's a "woo-woo" science. If interested in finding out more, it's all over the web, including doctor referrals.
I gained weight back, was able to go back to work, my skin cleared, I felt GREAT! However, last winter the D returned, eczema started (I thought it was chiggers, initially), and this summer I went back to my doctor and found out I had become sensitive to cow's milk and grains again. Why? Because I never healed the leaky gut!
I have again been treated for cow's milk and have gone on the SCD diet with the hope that this will finally heal the leaky gut. I want to be well. I may never go back to grains, as I believe I never did digest them well and I feel so much better without them (In the past I avoided wheat and corn, but still ate rice, millet, oats, etc.)
I don't trust acidophilis supplements--I've spent lots of good money on them in the past only to find out that when the brand was tested, the bacteria was not alive. I eat the yogurt, and "kosher" ferment my own pickles and sauerkraut. I learned to live-ferment food from the web. I made goat yogurt until I could eat cow's yogurt. I'd try EM right now if it was allowed on the SCD diet.
As for antibiotics, they are not allowed in my house. I have successfully treated my family's upper respiratory infections with echinacea and bee propolis for ten years now. As my intention is not to prescribe or diagnose, I'll let you guys decide if you want to know the dosage I use and the brand names I've found worth a damn.
My son was also allergic to cow's milk (throat clearing, chronic ear infections, stinky breath, feet and armpits). I had the treatment done on him at age
7. His allergy has not recurred.
I know several people who have had great success with NAET. On the other hand I have one friend that had NAET treatments that she swears never did a thing. I am inclined to think her practitioner just didn't do it right.
I don't usually stick my neck out and offer info on my "woo-woo" treatments, but these have helped me and they might help some others. The man that initially told me about bee propolis said that it will "cure" any infection in the body, no matter where. I have only used it for upper respiratory, but I wonder if it could be beneficial for "lesions" in the digestive tract?
The only warning I give is that people who can't tolerate honey should be careful when trying propolis. However, I was allergic to honey when I first tried it and did not have a reaction.
I know Elaine says to wait until your symptoms are all gone for a year before trying a food you were allergic to, but if the the body can be desensitized to allergens, then people can eat more nutritionally, stop losing weight and therefore get better faster.
I hope this info helps at least one of you. I hope I didn't overstep too much. By the way, I've been SCD now for 5 weeks, off grains for 6 weeks, and my digestion is noticably better, and the eczema almost totally gone. Thanks to all for the wonderful recipes--they've helped so much!
Good luck all! Elise Michigan
My 11 year old daughter has UC, but we are all on the diet. I have had really non-typical type of migraines that are very debilitating (daily). I also had very severe vertigo with my migraines. Anyway, enough of that ... I have been seeing a chiropractor (after several months -- began to see improvement). Then after starting this diet with my daughter ... I can't believe how much better I am feeling with migraines and vertigo. I truely believe the majority of my health issues came from years of eating foods that my body couldn't digest. I do think my migraines are also related to hormones, but I must say the chirorpractor and the diet have done wonders. I no longer have to take any medications ... and I'm beginning to see light at the end of my tunnel!!! There was also some research that came out a couple of years ago...relating migraines to low iron (anemic state)...? Not sure if this applies to any of you..but it certainly worked for both my mother and daughter to be put on some vitamins to help restore iron levels.
Migraine or http://www.ithyroid.com/migraine.htm
Hi Lynne, thank you for writting to me, I was diagnosed with croh'n desease in 2000, I have CD located in the illeum, MY doctor prescribed me Pentasa, I was in Pentasa for 2 years I felt wonderful, I used to take 8 pills a day, 250mg.each, until one day put me in the hospital so sick, it was affecting my lever, the pain was so severe that I start that moment taking tylenol, I developed hepatitis due to a medication, no viral hepatitis, so the doctors in the hospital determined that Pentasa was causing problems to my lever, so they took me off it, that's the reason they don't give me anymedication anymore, before I knew about the scd diet, when I used to have a flare up I used to do like almost the scd diet bymyself, chicken soup, gelatin, tea, no fruits, no sugar for 3 or 4 days, it will go for a year, I used to take care of my diet, so when I found out about the SCD diet all made sense to me, I have another flare up in June, I had to go to Emergency with pain, and diarrea, But because of my history with Pentasa the specialist my Dr. decided just to prescribme CIPRO, for 10 days, I feel better since then So in June at the same time, I found out about the diet, I coment with my dr. and He said if this diet work for me, He told me go ahead, so here I am just with the diet I am doing good!, I can't complain!, whenever I have a question I posted in the Scd list, and all of these wonderful people help me, to whom I am very grateful!, I found out the other day, that it is not medication available to treat Crohn's desease, all the medication for crohn's has been made to treat Ulcerative Colitis, but because the symptoms are similar, the Doctors, prescribe the same medications for crohn's, I don't remember wich website I came across but I remember reading this, I may be wrong I don't know, I don't know much about Ramicade, I don't know if this droug is ment for crohn's suferers, but I will find out in the near future, I will do more reserch, well I hope this help, Take care, If you have any question, you are free to ask,
Love, Anita. CD.2000 SCD june 03 No meds.
I am not sure if this will help, but our son Jack is 13 and has CD for almost 2 years now. He was on Flagyl and a doctor also told us he would be on meds forever. But we found an SCD friendly doc and now Jack is off all meds. His perianal fistula is closed completely and he is functioning very well. He missed 70 days of school the last two years, but now has missed none so far. Hope this helps in your journey.
A year ago and two weeks ago, I was admitted to the ER with an acute case of Crohn's colitis. I weighed 90 lbs., was running multiple fevers in excess of
104 degrees F, had D to the tune of 32x/day, had lost 2 pints of blood and could barely walk.
After eleven days in the hospital, they gave me a choice: I could stay and receive more aggressive drug therapies (the 60mg of IV prednisone they had me on wasn't making a dent); or I could go home and "see what happened". I went home. The next day, I talked my friend through Whole Foods on his cell phone, making him read me every label on the items I needed to begin the SCD. With the last of my strength, I made the soup and some homemade gelatin. And each subsequent day, I built on the little ground I had already gained until two weeks later, I was able to go to my doctor without lining my pockets with weights to cover the weight loss.
Within one month, I was able to do my laundry by myself again. Within three months, I was able to get back to work. Within five months, I was off all of my medications.
In the past year, I have had one flare, brought on by hormonal birth control. I went on all my meds again, but this time I was able to wean myself off of them in a mere four weeks--I was now that healthy.
A year later, I still can't eat raw fruit with abandon but I can travel and not get sick. I haven't had bread or pasta or any other illegal but I can work, socialize and sleep through the night. My world of acceptable restaurants has shrunk even as my ability to be out and about with seemingly boundless energy has increased. I've accomplished things I never dreamed I could twelve months ago. I've helped friends, acquaintances and total strangers find this diet and changed their lives, too. I've learned patience (oh, boy, have I learned patience) and as a result, am more tolerant of quirks in myself and others. This diet didn't just give me back my life; it gave me a totally new one, richer than I ever could have imagined.
So when people tell me how hard it must be to be on this diet with all of its restrictions, I smile and think to myself, "What restrictions?"
I've never been freer in my life.
Thank you, St. Elaine. Thank you, Rachel. Thank you, all of you wonderful people on this list who get up every day and fight the good fight.
CD - 1.5 years SCD - 1 year no meds
I started the diet almost one month ago. I have been on blood pressure medication for years and had readings on the normal/high normal side. The last couple of days I have had a light-headed feeling and so took my blood pressure and it was 116/69. It hasn't ever been that low - yahoo! Does the SCD diet affect blood pressure? If it keeps on at this rate I will be able to reduce or possibly go off of my blood pressure medication. Wow! This is exciting and worth sticking to this diet if only to keep off of those medications. Still a struggle with my UC but I notice I am much, much more regular than I was a month ago! I am one of those UC's that was constantly constipated for days at a time to the point of painful discomfort and nausea so everytime I go I am a happy camper. AND I am even eating cheese which I would never touch before because of constipation problems!!!!!
Hey there, my name is Rob, I'm 25 years old, I live in Suffolk County, and I have been suffering with severe allergies, severe eczema, concentration problems, hyperactivity, and digestive problems all my life and my father has Chron's disease which he has been suffering from for almost 25 years. On top of that my 20 year old sister had Arthritis problems 2 years ago and was diagnosed with IBS.
From the age of 3 months old on my medical records show problems with eczema and constipation, which have plagued me off and on for my entire life. Throughout growing up I had times when I would experience gas and abdominal distention, but it would always go away after a day, the symptoms too insidious to alert the doctors. Concentration and behavioral problems plagued me up until puberty. After that the concentration problems continued, and continue to this day, but the hyperactivity subsided. I have also been plagued off an on with insidious digestive problems, fatigue, and disfunctional behavior patterns. The concentration problems and fatigue were bad enough that I failed miserably my first time in college.
On top of that, when I was 18, I became a vegetarian, believing the propaganda of vegetarian, vegan, and "animal rights" groups which has turned out to have absolutely no medical substantiation. Upon becoming a vegetarian my digestive problems got pretty bad, I was having the worst gas pains that I had ever had along with Constipation, spastic colon, and yellow stools. After cutting out milk and severely restricting cheese, the problems subsided, but all of the other problems remained, and I pretty much gave up on my health, stopped forcing myself to exercise, and began drinking heavily and smoking with the attitude of, "Well I'm going to feel like shit anyway, so I might as well do what I want." After a year and a half of that it started to catch up with me and I started to show symptoms of hypoglycemia, and my eczema started to get pretty bad. At the time I had no health insurance, so I couldn't really go to the doctor, but I did quit the smoking and heavy drinking, and I started to feel a little bit better, but I still always had this lingering feeling of sicklieness. I was always having hot flashes, mild anxiety, and sweating all the time, and I had this feeling like I was infested with some kind of parasite . In the summer of 2000, my allergies came back worse than they'd been since I was like 11 or 12, I started getting some really terrible eczema, including nubular eczema (round raised lesions), and really bad digestive problems. I had insurance at the time, but my HMO doctors ignored everything besides the eczema, and their only answer was the same steroid creams that they've been giving me since I was little and which no longer work on me. I was going to the toilet around 5 times a day, and it was usually yellow, bulky, watery, and mucusy, but not loose, and my bowel movements were almost always incomplete. I moved to seattle around this time and found a free accupuncture and natual health clinic for youth. This was the first time that anyone ever insinuated that all of my problems might be tied together and linked to my digestive system. They took me completely off dairy, and put me on essential fatty acids, a popular digestive supplement called Robert's Complex with digestive enzymes, multiplex with B-12, probiotics, vitamin C, and vitamin E. The B-12 helped with the fatigue but did not end it, but I did feel a lot better. I also was going for free 1 hour accupuncture sessions twice a week, and it worked wonders. I went religiously and all of my problems subsided.
However, when I returned to New York in February of 2001 I no longer had access to a free accupuncture clinic, or the free supplements. I was working like crazy, and all of the problems came back even worse. I started to buy the supplements, but the problems still got worse. I was having terrible indigestion, gas pains, and spastic colon, and I was getting sick all the time, constantly having a cold, or flu, or terrible allergies, and I had eczema everywhere, including over my eyelids. I also started to have frequent major sleep disturbances, where I would be up all night and sleep all day, and my performance at my job became terrible. (fortunately, I had a federal job) Ofcourse the doctors still offered me no solution, and since I wasn't puking my brains out, didn't send me to a gastroenterologist, and since I'd seen my dad go through his third surgery when I was 15, and still not be completely well after it, I didn't really want to go to one anyway. I got laid off from my job and went back to school in the fall of 2001 I kept my grades up, but my health continued to deteriorate. I started to feel hypoglycemic again, and on top of that I had gained a lot of weight, and for the first time in my life was well over 200 pounds.
I managed to find a holistic medical practice where the the two practitioners have an MD and an NP, allowing them to take medical insurance, and I started seeing them in November 2001. They immediately tested my stool using the Great Smokies Diagnostic Laboratories Comprehensive Digestive Stool Analysis test and found that I had no Lactobacillus growth at all, although my E. Coli, and Bifidobacterium were at +4. I also had Terrible Candida infestation, that included not only Candida albicans, at the level of +4, but also Candida parapsilosis, Candida tropicalis, and Trichosporon species. They also had my blood Immune Globulin tested using the Metametrix IGG 90+4 food antibodies test, and it turned out that I was severely allergic to soy, the staple of my foolish vegan diet, moderately allergic to wheat and dairy (including Casein), and allergic to a number of other things due to the soy allergy. They also did the celiac blood test. My Tisue Transglutaminase came out as 18, just below positive, and my Gliadin AB IGG and IGA came out at 25, a weak positive, making the results inconclusive.
They immediately put me on Nizoral pills for 2 months to clear up the Candida, Metagenics UltraDophalis DF NCFM Acidopholis powder, UltraInflamX (a natropathic anti-inflamatory medical food supplement), Megagenics Extra Strength EPA/DHA, and I went on a strict elimination diet which I have followed religiously and never cheated on. No Soy, Dairy, Wheat, Rye, Casein, Peanuts, Almonds, Mustard, or Peppers, and I cut out all alcohol and sugar because of the Candida and severly limited the fruit. I also started eating fish and eggs again right away. Within 2 weeks of not eating any of this stuff I felt amazingly better. My eyelids and face went back to normal, I became less bloated, the hypoglycemic symptoms subsided, and I started to loose weight. My digestive system also started to function more normally, and I was having more normal and less frequent bowel movements. The cold and flu like symptoms also went away, and for the first time in a long time I started to feel a bit healthier. After a month, the painfull crater like sores on my feet, which were caused by the Candida, were gone. Still I would have mild digestive flare-ups a few times per week, and I started to get fairly constipated, and still had a bit of eczema, so I also cut out all gluten, and then cut out quinoa because it seemed to always give me indigestion. The doctors, upon my request, also refered me to a gastroenterologist so that I could get an intestinal biopsy to rule out Celiac's disease. At the time I felt like I would almost be relieved if I found out that I had Celiac's disease because from what I had read it seemed to have a simple answer, "cut out all gluten, and within 3 years you will be in perfect health." Anyway, I went to the gastro-enterologist, and the Nurse Practitioner sat me down, asked me about my symptoms, and then looked at the lesions on my legs. He said, "that looks like Dermatogenic Chron's" My heart literally dropped to the floor. Having seen my father terribly ill from Chron's growing up this was just as bad as if a doctor had told me that something looked like cancer. (My dad has been relatively well since his last surgery although he takes a ridiculous amount of immunosuppresive drug and they do have side effects, including terrible arthritis, which he takes other drugs for.) I then asked the NP in the gastro office what they would do if I had Chron's and he said, "set you up on medications and lifelong treatment." He wrote me down the website for Remicade, and then the gasteroenterologist came in. She asked me a bunch of questions, didn't listen to my answers, ridiculed the diet that I was on, and scheduled me for a colonoscopy and an upper endoscopy. I felt that she was treating me like a piece of meat, and I didn't trust her. At the time I was also scheduled to move in with a girl in The Netherlands two months later, and having a long term chronic illness on record was not something that the Dutch Immigration and Naturalization Division would have looked favorably upon. I decided that I would continue with the elimination diet and wait to get the tests until after I had obtained a residence permit. I also, at the Holistic Doctors' advice, added dried fruit to my diet to take care of the constipation. They switched me from UltrainflamX to Allergy Research Group's Permavite a glutamine supplement, and added Metagenics Spectrazyme digestive enzyme supplements. At this point I also added regular fruit back to my diet, and I switched from the Ultradopholis DF powder to UltraFlora DF capsules that contain even larger amounts of acidopholis, as well as large amounts of B. Infantis (now renamed B. Lactis).
I continued to improve, and over the summer, the moveing in didn't work out, so I wound up traveling around BeNeLux and Scandinavia. At this time I added red meat back into my diet, and have been eating it ever since. It was very hard keeping the diet. I had to fill up two bags of food whenever I came upon a healthfood store, and drag it around with me everywhere. This was a pain, as when I had traveled in the past I always just ate cheap takeout. On top of that, due to my problems with soybean oil, the only restaurants that made stuff that I could eat were expensive, traditional, fancy, "meat and potatoes" restaurants, and equally expensive sushi bars and european chinese restaurants. But I maintained strict discipline. (There were two times where the Chinese restaurants snuck a bit of soy oil in my food which I had ordered steamed, even after I had explained that it makes me sick, and I felt it on the toilet the next day) By the end of the summer, when I returned to New York, I was down to 160 pounds and I looked better than I'd ever looked in my life. I started to develop arthritis symptoms in my knees and ankles, and completely alleviated that by cutting out the nightshades that I was still eating (potatoes, and tomatoes). I decided to do the last semester that I needed for my associates degree, and I managed to get straight As and even write, direct, and produce a silent short film in the process. However by the end of the Semester I was back up to 170 lbs. (Due to my former job finally cutting my medical insurance and having to go back on my mother's which would only last for 2 more months until my 25th birthday, I was still unable to schedule a new Gastroenterologist, colonoscopy, or biopsy)
In January, some of my symptoms started to return. I had indigestion about twice a week, although less severe, but it often times included lots of very thin and hard to expel stool. my eczema started to flare up a bit more often, and my fatigue, sleep disturbances, and concentration problems came back. I had no medical insurance, and therefore it wasn't affordable to see the doctor, and I was planning to move over to Europe as soon as I got the papers together. I wound up slipping into an old pattern of fatigue, poor sleeping habits, and altogether disfunctional behavior until the spring. I wasn't packed for the move at the start of the summer like I had planned, and I wound up cancelling my summer travels. Also, my allergies, eczema, and some of my digestive problems started to come back a little. I have been extremely frustrated since January, because I feel like I am doing nothing but religiously monitoring my health and my diet, yet I am still sick most of the time, yet I'm a hell of a lot better than I was when I started on the elimination diet. I believe that if I hadn't received treatment for the candida, natropathic medicine, and the elimination diet, I would be on some serious allopathic medication by now.
On July 1st, my family health plus finally kicked in. I went back to the doctor, and they redid the Comprehensive Digestive Stool Analysis to see how I had progressed. (I also wanted to get another food allergy test, but it is no longer available in New York State because the State Government decided to make the test illegal.) The CDSA results showed all of the Candida strains to be completely gone except for Candida Albicans, which was at +1, below pathenogenic levels. However, I still don't have any Lactobacillus growth at all, the E. Coli has gone down from 4+ to 3+, and the Bifidobacterium from 4+ to 2+. On top of that the "non-pathogenic" Streptococcus bacteria that were already in my intestines have all multiplied, I have lots of new strains of Strep, and the worst thing is that I have a very high level of a pathogen known as Staphylococcus Aureus. The whole thing made no sense to me because I have been taking such large doses of both Acidopholis and B. Infantis. On a good note, over the 18 month period my intestinal PH went up from 5.4 to 6.2, and I had improved levels of Triglycerides and Long Chain Faty Acids, and lower levels of Chymotrypsin. My doctor told me that there are a number of theories that Chron's is actually caused by bad bacteria that damage and inflame the lineing of the intestine, and she prescribed me a 3 week course of Cipro to kill the staff bacteria, along with Diflucan to prevent re-growth of the Candida. Unfortunately, due to an allergic reaction, I had to stop the Diflucan. Anyway, while researching anti-fungals I came accross the SCDiet, and I immediately went out and got the book and also read through the healing crow website and a number of the links to paleolithic diet websites. Everything completely made sense, and now I understand why everything was helping but not working completely. I have met a few other people over the past year and a half who have also been following this elimination diet that I have, and they all have had similar results. It helps, but it doesn't completely put their problems into remission, and they have frequent but short flareups. They still feel sick most of the time, but better than they have in the past. For me it has felt like everytime I fix one thing, something else starts to go wrong.
I wish to start the Selected Carbohydrate diet right away, as I have the feeling that if the cycle that I'm currently in continues, it will eventually lead me to drugs and possibly surgery in the long term. On the other hand, if I can get my intestinal flora in balance, I might be able to go back to living a normal life. I feel that now is the right time to do it as we are currently in the process of killing off the bad gut bacteria with anti-biotics, and at this time I am fortunate enough to already be eating and able to handle all of the foods which the diet does allow except for the dairy products, peanuts, and almonds, making the transition less difficult. This diet might even be easier than my current one as it requires less purchasing of expensive "special food", such as gluten free / soy free pasta, bread, and cereals.
I've heard so many times words to the effect of: '....it took you a long time to get this ill, and it takes a long time to get better too!!' And it's true. 5 weeks is not long enough. I believe the evil bugs can survive for that long without their dose of starch and complex carbs!! I don't think 5 weeks was enough time to judge SCD. I have been on it now for over a year and my only flare came 2 days after indulging in pizza and a praline. I had thought that since I had felt so good, surely I could eat just alittle something non SCD..........well, I was wrong! Within 2 days, I was feeling sick again, then pain, then medications. Definitely not worth my momentary indulgence. My doctor commented on how surprised he was that he only saw me once last year........and that once, was my fault. You may have been lucky enough not to see any problems from your indulgence this time but it may not always be that way. SCD does work, I hope you will give it a chance to work for you too.
This list was an instrumental part in me being able to get my life back. I tried SCD (or I thought I tried it) years back and it 'didn't work'. One really needs the idea of the book and the strictness of the diet to be properly explained. The support and carefull guidance absolutely needs to be there on the ones way to recovery. My second time with the diet started just over a year back - after 10 yrs of desease, surgeries and medications I've been medication free for many months now and very busy leaving my life. Without this list, I would not have had the confidence to put my daughter on the SCD diet, right at the time of her probable CD diagnosis. I would have seen no option but listen to a doctor and put her on prednisone. I opted to try the diet which has worked 99 percent complete in getting rid of stomach pain and bloodwork deficiencies in a few months. A new doctor this week at one of the most prestigious Boston hospitals indicated that the reversal was like a miracle--- without medications. He even questions the diagnosis. So.. my message is this-- Those who have worked hard to retain this list and Elaine-- thank you. For just one of these experiences like mine--- of which there are many--- you ought to feel that your life and efforts are so incredibly worthwhile. How few are the people who can feel this.
There are alternatives out there that do work and that diet is of critcial importance in many illnesses even when we are informed to the contrary. Last week ( remember i wrote in and let off steam to you all!) i was informed by my GI doc that there is no scientific evidence to prove that diet plays any part in colitis and that any evidence is anecdotal and not based on double blind testing etc is not considered evidence at all.
I KNEW the doctor was wrong when he said forget the diet and start taking the meds ( even though i am currently symptom free). Please, i'm not putting down doctors here because in of course they do a fantastic job in most cases and without them where would any of us be ? But i wanted to say that when i knew that I was right and that the doctor was wrong i was so grateful to Elaine because pre SCD i would not have had the courage of my convictions to listen to what my heart (and my bowels!) were actually saying over the opinion of a doctor whom i would have held up as infallible demi god!
So thanks again Elaine. And to all the newbie SCDers - if it is working, you're definitely doing the right thing - so keep at it!
From Elaine: Whatever and whoever the forces are out there which would rather die than ever put the blame on carbs, this is exactly the pattern that is always followed to "death do us part." It created the entire 50 years of wasted, destructive money, time, and lives when it came to heart disease and, thus, was born the cholesterol myth! It was what perverted the original SCD diet (and many are obtaining Dr. Haas's book and have read my history of celiac) and introduced the GF diet which has kept people alive but not well. This is the pattern of what has been happening in this world of medical politics. If you have not read the Wall Street Journal article written within the last year, altho it is very mild in many aspects, it tells you why that doctor gave the "scathing" reply about "it hasn't been researched."
The following is letter sent by Theo Colborn PH.D. to Dr Peter Green of Columbia Presbyterian Med Center in New York City:
Dear Dr. Green, All four of my children were born with Celiac disease. At age 2 & 1/2 the oldest was extremely ill even though he'd been placed on a gluten free diet by a pediatrician who had diagnosed his problem as celiac disease. By late 1952 his health had deteriorated seriously when we discovered Drs. Sidney & Merrill Haas who immediately put him (and his newborn sister) on a disacchride-free & complex sugar free diet. After 5 days on the diet for the first time in his life he passed a solid stool and slept through the night.
Our last 2 children also presented the same symptoms shorty after birth. How ell I remember the hours spent boiling milk with CASEC powder and the many times it foamed up, boiled over, and made our home reek of scorched milk. By the time our last child was born, Sidney Hass had passed away and we had to find Merrill who had semi-retired to Peekskill. Most important, after only a short time on the Haas diet my children became as healthy as their peers. Today, my children (age 37 to 47) have no overt celiac symptoms and are productive, well adjusted adults.
In my case, at age 45 (in 1972), following an IV with Inferon (iron-dextran) prior to a hysterectomy, I began to have severe hypertensive attacks, myalgia, and diarrhea and colonic distress when I ate pork, including lard. By age 53, a great deal more than pork distressed me. It never occured to me that I was experiencing the same symptoms my children experienced in infancy. I was diagnosed with stress syndromw and irritable bowel syndrome and told to change my life style and eat more grains and roughage. The latter, of course made me worse. I had one colonoscopy, sigmoidoscopy, and ultrasound examination after another, which revealed nothing.
At age 58 I saw a gastroenterologist who suggeted that perhaps I had celiac disease based on my children's history. Unfortunately, withing 2 weeks of that examination I was scheduled to move 2,500 miles to Washington, DC to take a new position. As a result, I started again trying to fina a physician in DC who would work with me rather than prescribe medications and tell me to remove stress from my life. My original degree was in pharmacy and I did not want to get on the antacid, antispasmodic, tranquilizer treadmill. I got no help from searching the medical literature about celiac disease either. The gluten-free diet was useless. And except for continuing to eat potatoes and rice (in order to sate my appetite) I ended up on the Haas diet. This was not adequate and about 2 years ago my health deteriorated so much, I thought I might have to retire. Because of flatulance, diarrhea, and severe vaginitis and cystitis it was impossible for me to work around others, travel, and eat outside my home. In addition, I had wasted to 100 lbs and was fatigued, had trouble consentrating and was in constant pain.
Then one day, I was in a used book store and saw a book called "food & the gut reaction" by Elaine Gottschall. I must admit that I was skeptical because she was a dietician (Elaine wants me to clarify that she is a cellular bioligist). I could not believe what I read. She was RIGHT on. I came home & removed rice & potatoes from my diet. In 4 days I had my first solid bowel movement in 25 years. I also slept for 8 hours uninteruppted for the first time in years. I had forgotton what it was like not to suffer from and be distracted by bowel & bladder urgency. The color came back to my cheeks. I managed to put on 15 lbs, and my energy was fully restored. I am taking the time to write this because I am truly concerned about all the children with celiac disease who are chronically ill.. They do not have to be chronically ill. I have attended several local celiac society meetings and watched the chldren. These children will never be able to reach their fullest potential while on a gluen free diet. The good news is that it only takes about 3 years on a restricted carbohydrate diet to restore the childrens health so that they are sympton free and remain that way, I plead with you to try this simple approach to controlling and reversing celiac disease. You should expect success if you enlist patients and parents who have the discipline to maintain constant supervision over their children's diet and who have the intelligence to understand simple organic chemistry. I realize that it is harder today to restrict children to a diet such as this with all the prepared foods on the market and the faster pace of life. However, both my husband and I worked while raising our children. We made tremendous changes in our lifestyle to accomodate our children, but in doing so we succeeded in restoring their health. At that time it did not seem like such an inconvenience as we watched our children blossom. When they cheated on their diet, or relatives allowed them to cheat, we all had to pay for their misery. All I can say is that it was well worth the extra time & effort. My children still have excellent dietary habits and avoid prepared sugar/starch-rich products on the market.
In my work I often get letters from people who describe themselves as victims. Most of the letters are filed away agter I send them a thankyou note for their interest in my work and encourage them to continue the efforts to improve their lives. Consequently, I hesitated sending this letter to you. In the end I decided I must--- because I cannot stop thinking about all those children at the celiac meetings with their strained faces and miserable dispositions. They deserve the good fortune my children and I found via the restricted carbohydrate diet. They do not have to remain chronically ill. I often see adults whom I am certain would benefit from this diet but I am certain they would not have the discipline to follow the regime; On the other hand, I can no longer count the number of people whom I have convinced to try this diet and who have had their health restored, including women with diagnosed Crohn's disease who had no hope of ever regaining their health. Only the best to you in your endeavor to create awareness about celiac disease and doing something about it. With deep respect, Theo Colborn