TOPIC:

My first thread was posted a few weeks ago here:

www.pdsa.org/forum/6-general-itp-discussion/15181-20-year-itp-crossroad.html

I decided to go on a a radical diet change and a large part of that is a "gluten-free" theme. There is also a detox component to the diet I am on, and I will update what I am doing in the postings that follow.

But to start the thread, I am becoming more and more convinced that gluten intolerance may explain some of the mystery behind so many automimmune diseases. I think it will be become particularly important for many of us with ITP.

I know from reading many threads here that a number of posters are not keen on natural remedies. I can understand the skepticism. But I feel I have no choice but to go down this route and find out once and for all if there is an alternative option through diet (and natural remedies). My goal is to find a way out of my recent condition (stuck on prednisone with low platlet counts - first time since splenectomy in '94) without having to resort to a third or fourth line of treatment (and new untried drugs).

BTW, I read Joan Young's book (Wish by Spirit). The bottom line is that she changed her lifestyle and her diet radically. The theme is the same for me.

The article below talks about trying a gluten-free diet for two weeks and then seeing if there is a change. I don't believe you can promote a major change in two weeks, particularly if this is a condition that has been with you for many years. I think Joan discovered this and it is a major point to take away from her book.

My naturopath has set as a primary goal the elimination of "yeast" (aka Candida albicans) from my system with this gluten-free diet. This can and will likely take months.

cheers,

john


www.associatedcontent.com/article/5946064/the_connection_between_gluten_intolerance_pg2.html?cat=5


The Connection Between Gluten Intolerance and Low Platelets

How Thrombocytopenia, ITP and Gluten May Be Related

If you've been diagnosed with thrombocytopenia or idiopathic thrombocytopenic purpura (ITP),gluten intolerance could be causing the low platelet count. Learn more about how what you're eating could be affecting your blood count before considering a splenectomy.

What is Gluten Intolerance?

Gluten is the gluey protein found in wheat, barley, rye, oats and spelt. A person with gluten intolerance is unable to digest this protein. The undigested protein sticks to the intestinal walls where it is treated as a foreign invader by the body's immune system. This creates a "sensitivity" or "intolerance".

The next time gluten is ingested, the immune system goes to work fighting off what it believes to be a harmful invader. In those with an undiagnosed intolerance to this protein, the immune system is continually in "fight" mode, which begins to cause a host of autoimmune problems. After years or decades of this, the physical and mental health of the sufferer is usually in pretty bad shape.

What Are the Symptoms of Gluten Intolerance?

Symptoms range from mild to extremely severe. The most common symptoms are as follows:

Chronic abdominal pain, especially after eating
Chronic diarrhea
Gurgling intestines
Chronic yeast infections
Flatulence
Eczema
Chronic sinusitis
Depression/anxiety
Brain fog/learning difficulties
Autism/aspergers syndrome

How Could Gluten Intolerance Affect My Platelets?

Though many conventional doctors do not agree with the gluten/low platelet connection, studies show that those with celiac disease or gluten intolerance are more likely to have decreased platelet counts. This food intolerance is also sometimes related to a condition called leaky gut syndrome, which can trigger strange autoimmune responses throughout the body, including low platelets. In a person with leaky gut syndrome, the lining of the gut is more porous than it's supposed to be, allowing undigested particles of food to leak into the blood stream, causing body-wide inflammation and allergic response.

What Are My Options?

If the symptoms you've read above sound familiar, it would be best to try a gluten elimination diet to see if an intolerance is what is causing your discomfort and low platelet count. Even if the only symptom you are experiencing is depleted platelets, trying the elimination diet may prove to be just the answer you need. If gluten intolerance is not the culprit, you've lost nothing in trying.

For two weeks*, eliminate the following from the diet:

Wheat pasta
Wheat bread
Baked goods
Candy
Frozen, Canned or Processed Foods
Beer/malt liquor
Fast food
Condiments that are not labeled gluten free

For two weeks, eat the following:

Organic meat, chicken and fish
Organic vegetables and fruit
Potatoes
Brown rice
Rice pasta
Millet or rice bread
Grain-free lunch meats
Gluten free breakfast cereal
Water
Organic fruit juice

After the two weeks is up, reintroduce gluten back into the diet. For example, prepare whole wheat toast with cream of wheat cereal. This way, you will get enough of the grain in your system to accurately test for a reaction. If symptoms return, you'll know the cause. Remove gluten from the diet completely and consult with a nutritionist or naturopath who can further guide and assist you in a gluten free lifestyle.

* It is important to note that if the only symptoms experienced are low platelet count to follow this diet for one month and then have your blood re-tested to see if there has been any improvement. Remember, it may take several months for the gluten to get out of your system completely, especially if the condition has been ongoing for years or decades. Blood platelet levels may not rise right away. Keep at it for a few more months.

Do some research on gluten free living and the wide variety of tasty foods you can substitute for traditional, wheat-based fare. If nothing else comes of it, substituting processed foods with whole foods will help your body be better equipped to handle having a low platelet count and may be just the ticket needed for it to heal!

Sources:

www.glutenfreesociety.org/gluten-free-society-blog/anemia-and-low-platelets-linked-to-gluten-exposure/

www.easy-immune-health.com/could-gluten-sensitivity-cause-itp-low-platelets.html

www.easy-immune-health.com/Gluten-Sensitivity.html

www.ncbi.nlm.nih.gov/pubmed/18365906

Mid-May I visited Dr. Drake, an experienced MD who truly believes in the naturopathic route. She is battling to keep her license as she is under scrutiny from medical watchdogs. She is the type of doctor I have been looking for to help me. Below is my first ES Teck System Scan and diagnosis.

Here is a quick info link on the ES Tech System:

sites.google.com/a/chilopass.hu/chilopass-en/eis-esg-vizsgalat

Here is a summary of my first ES Scan report below.

I've attached the file. There is more to the analysis than is shown in the attached file. Other notables were an indication for H. Pylori (Dr. Drake requested a test at a Testing Lab be done to confirm asap) and that PSA levels were above normal. In this first diagnosis, my homeostatis score was considered low at 16.

N.B.

Results meaning
Maximum Score = 30
Very Good = 27-30
Good = 24- 27
Normal = 20-24
Warning = 17-20
Low = 10-17
Poor < 10

cheers,

john

---

ESTECK Status Report
WARNING!
The ES Teck system does not replace any medical examinations.
The ES Teck system should be used as adjunct or screening.
All results should be considered in the clinical context of the patient's case history, symptoms, known diagnosis, current medications, treatment plan and therapies. Final status report is the sole responsibility of the practitioner.
Subject ID Practitioner
First/Last Name: John Address:
Weight : 180.0 Pounds
Height: 5 Feet 9 Inch Title:
Biofeedback Specialist
Base Office
www.feelrighthealth.com
Feel Right Health Centres
Date of birth: 12-4-1959
Gender: Male

Telephone / Fax / E-mail: 905-727-8883
Measurement conditions Name : J. Sargent / Deb Drake
Examination performed at: 5-19-2011 14 : 09 Physician’s notes:
May 19 2011. Chief complaint: ITP with platelet antibodies causing autoimmune disease in circulation causing poor blood circulation and sticky arteries with increased peripheral vascular resistance. The gut inflammation and colon congestion would likely be improved with reduction of gut dysbiosis which grow on past heavy metals and mercury toxicity, which bind thyroid and adrenal hormones and stress the circulation. The brain blood flow is great but the kink in the C1 vertebrae may be impairing the lungs, colon and peripheral circualtion and may be assisted with a Cranio sacral massage or chiropractic manipulation. The use of prednisone as an immunosuppressant can foster the growth of fermentation of yeast in the gut, which grows worse in splenectomized patients due to the missing peroxidase enzymes from the spleen. This might be helped with the addition of peroxidase rich foods like horse radish, radish, pears, and antifungal foods like grapefruit, cherries, rice, turkey, broccoli, and other foods listed in red on the Diet sheet provided. The addition of probiotics rich in vitamin K might greatly improve the platelet function and colon flora, which will reduce the circulatory stress. The elevation of cortisol due to prednisone use may cause stress related weight gain and insulin resistance, causing elevation of lipids, blood pressure and stress. The elevation of PSA may have to be checked by family doctor due to the elevation of prostate indicators, but this may be only the overgrowth of yeast in the colon and prostate and may improve significantly with the addition of a colon cleanse with high fibre, more minerals and probiotics. The tightness in C1, mid thorax of T1-T5, T8 over liver, and T10 over kidneys, and lumbar L1 L2 over colon need to be mobilized, possible with massage or chiropractic care. Stretching and yoga breathing may improve the lung and oxygen function. The use of Ionic foot bath may greatly reduce stress with the exit of past heavy metal toxicity impairing your immune system. The addition of detoxification ZEOLITE 13 drops twice per day in water will help the exit of toxins stored in the lymph tissue affecting the platelet health. The reduction of bone marrow fungus or YEAST with the herbal tea PAU DARCO might improve the blood development and subsequent oxygen carrying capacity. Follow up in 4 weeks for repeat scan, while performing the diet and detox strategeis.,

Homeopathic options self selected:
VISCUM ALBUM X3 ; IPECACUANHA X4 ;
LOBELIA INFLATA X3 ; ADRENALINUM X6 ;
Registration method: A1 (67,0,100,100,0) N1 (59,0,100,100,0)
Examination performed with a ES Teck Sensors Analyzer Manufactured by L.D Technology. ISO 13485 Owner/Operator Number: 9097859. Establishment Registration Number: 3006146787. CE 0535 Class IIa. 510k number K102166 and k102442 Class 2 and EC 0535. ES Teck sensor is accredited as electrical equipment type BF according to the standards EN 60601-1-1. CEM according to the standards EN60601-1-2
Clinical context
Symptoms :
Medications :
Daily Activity Level:
Moderate: walk 20 minutes a day / 1-2 hours sport a week
Systolic / Diastolic pressure: 130 / 80
Reason for consultation: Signature of the practitioner :

---

Here (see attachment) is the diet plan that I followed after the May 19th visit. We did not start with all the supplements right away, but did first focus on the Colon Cleanse, Probiotics, Zeolite, Spirulina Algae, Vitamin D. I already take fish oil regularly.

I adhered strictly to the no sugar, no caffeine, no alcohol (no street drugs ) regime. Mornings have been typically a boiled egg, cooked oatmeal or a very low sugar rolled oat cereal, with either prunes, dried apricots or nuts and some plain yogurt on occasion (greek style is the best IMO).

Lunch is heavy on vegetables either as a salad or munching on raw veggies (avocados, cucumbers, broccoli etc.) with canned salmon or tuna, or some feta or fresh mozzarella for protein. For carbs, a brown rice based salad has been a good option as has Quinoa. If you are not familiar with Quinoa, I would check it out.

N.B. en.wikipedia.org/wiki/Quinoa


The diet has been heavy on fish (cooked fish at least 2x per week), turkey and NO chicken as prescribed, some lean steak and on occasion lamb. No deep fried anything.

I've been avoiding all breads, wheat flours, and gluten based products.

I made a point of eating as many of the foods highlighted in red (see attached file) which were chosen for their high Peroxidase content. These foods help to make up for the lack of my spleen.

I have been drinking plenty of water and various herbal teas including Pau D'Arco, Dandelion, Peppermint, and various green teas.

The big changes that I noticed in the first three weeks of this diet were:

(despite 40 mg predisone)

1. Good regular bowel movements,
2. Much better sleep (could only manage 5 hours, now sleeping 8 more often than not,
3. Lost some weight,
4. Felt much less bloated, pressure within my gut subsided - this was not a condition I was aware of,
5. Tension in my mid to upper back disappeared which is a long time problem (I now attribute this to inflammation from my digestive system)
6. Energy and mood swings were much more balanced.

So all in all, I felt much better with this diet despite the fact I was taking a good dose of prednisone. That in itself was worth the challenge of taking on this diet.

I had a follow up visit June 9th. My Homeostasis score improved to 20 in three short weeks. I can't convert the report to the right Word format for attachment. I'll try at a later time.

I had a test for H. Pylori done but the result is stuck in the mail (due to mail strike here in Canada). An indication came up again for H. Pylori and an abnormal PSA level.

As a followup to the original list of supplements, here's a list of what I am taking after my June visit:

1. Probiotics (Lactobacillus Acidophyllus and Bifidus, multi strain, high potency 15-50 billlion friendly bacteria per cap twice or thrice per day between meals)

2. Spirulina (contains 88 vitamins, minerals, amino acids and essential fatty acids in one whole food for complete nutrition)

3. Digestive Enzymes (take 2 caps with each meal to improve breakdown and assimilation of foods, especially after 50 years old with low stomach acid )

4. Lecithin Nerve Support (1200 mg three times per day with meals)

5. Fibre (Psyllium 1 tbsp with 8 ounces of water at bed or more powerful herbal cleanses for Colon Cleanse)
6. Zeolite: (13 drops twice per day in water as a mineral known for detoxification properties to remove gut dysbiosis, pH disturbances and acidosis forming residues)

7. N-Acetyl Cysteine (500 mg twice per day for liver cleansing)

8. 5 HTP (Hydroxy tryptophan 100-200 mg twice per day supports ascending colon serotonin stores in lymph nodes and assists peristalsis and depression.)

9. Digestive HerbalTeas (Dandelion Root, Milk Thistle, Golden Seal, Pau D’Arco. For constipation, consider temporary use of Peppermint, fennel seed, cascara, senna leaves, Kava Kava, Buchthorn, and Rice brain oil (Gentle Fibres Brand Rice Laxative)

10. “Clean” Colon Cleanse or Yeast Buster Kit or Milk of Magnesia for evacuation.

I'm taking all of the above except for number 7. Fish oil, liquid Vitamin D, and a Calcium/Maganese/Zinc supplement are being taken as well.

John I can't see it in the above, probably just missing it - if it is in one of the .doc you posted I don't open files from people I don't know: what is your platelet count - what has this done for it?

Also I remember you saying your count gets worse with stress and I mentioned it might be a good idea to learn ways to deal with your stress. Have you taken measures to do so?

hi Melinda,

Ah, so what happened to my platelets? I was about to get to that. I've been trying to attach the last file without success.

My platelets were at 250 the last time I posted in May (3rd week). I agreed with my GP and Dr. Drake to taper off the dosage from 40 mg. Well I was 4 weeks into this and about to go to 15 mg. when my platelets crashed again. I tested at 7 last Thursday and of course I had the usual signs ie. blood blisters in my mouth, petechiae, and low energy.

I met with my GP and we agreed to bump up my prednisone back to 40 mg and see if things stabilize. They have and I will be going for another CBC tomorrow.

So no joy just yet. I shouldn't be surprised. But it does tell me I am in for a real battle as I have never seen this in my 20 years with ITP. In the last 3 months, my Platelets have gone from 250, to 4, to 250, to 8, to 250, to a recent low of 7. They are climbing again as symptoms have disappeared.

As for stress, that has changed dramatically and was even picked up in the ES Scan. I am in a much better state right now and I will make a point of taking it easy this summer. The kids and I spent 4 days at the cottage this past weekend and I plan to do more of the same every chance I get in the weeks ahead.

I will report any changes to diet, platelet results, and ES updates.

cheers,

john

John, in one of your early postings, oatmeal is one of the cereals that is listed as having gluten, but you do include it in your diet. That was confusing to me.

Do you know of vegetarians who have tried the gluten-free diet with success? I'm not quite a vegetarian, but I eat almost no meat--and a little fish.

Interesting route you are going. I've done all of it so I won't comment as everyone is different. I did want to comment that it takes 30 days minimum of gluten free to get the proteins out of the body's cells. Also, oats are technically GF but are frequently processed on equipment that has had gluten go through it. Depending on one's sensitivity, it is recommend that those that are truly gluten intolerant should use only GF oats. Bob's Red Mill sells them as does Azure Standard.

I would definitely encourage you to look into classical homeopathy as a natural treatment. It is what ended up healing our son.

Seems like you have good help along this journey. That is key!

best wishes

hi karen,

Here is the Canadian Celiac Associations's Gluten-free Diet guidelines:

www.celiac.ca/EnglishCCA/egfdiet2.html#allowed

Cross-contamination is always a risk. I have worked in the flour milling industry so I know full well how this can happen. Contamination of oats with wheat products can occur anywhere from the farmer's field through to the milling plant. However this is tightly manage for Celiac certified products.

www.informaworld.com/smpp/content~content=a938090418~db=all~jumptype=rss

Bear in mind the diet change I am instituting is a complete elimination of gluten from my diet. I have gone from eating, toast, bran cereals, pita bread, homemade pizza etc. to nothing in terms of flour based products. So the net change is something like a reduction in gluten intake of +99%. I do my best in terms of choosing foods that have a low risk of containing gluten, but this is not always easy. Try this diet and you will see what I mean.


Here's a word on the acceptability of Grains and other foods:

www.celiac.ca/Articles/Fall1990-1.html

Recent studies have indicated that pure uncontaminated oats can be used in the gluten-free diet with care. Please read the Professional Advisory Board statement re oats.

Here's a word on contamination:

www.celiac.ca/Articles/PABoats.html

Also note the comment on Quinoa:

Quinoa

Quinoa (pronounced keen-wa) has been grown and used as food for centuries by inhabitants of the Andes region of South America. Botanically quinoa is not a cereal but the fruit of the plant Chenopodium quinoa which resembles lamb's quarters and pigweed. It is a member of the goose-foot family Chenopodiaceae, so called because of the shape of the leaf. There are no data to indicate that gluten occurs in plants of this family. There is therefore, no basis for concern about the use of quinoa by persons with celiac disease. An undocumented report indicates that quinoa has been given over a period of several months to a number of persons with Celiac disease with no "untoward" effects.

Quinoa is a very nutritious grain and therefore a very useful alternative to wheat, rye, barley and commercial oats in the diet of celiacs. It is markedly higher in protein, fat, fibre, calcium and iron than most cereals. Its relatively high content of lysine and sulphuramino acids makes it a good supplement to rice and corn as well as to soybeans. Quinoa is reported as having a nutty flavour somewhat like wild rice.

As for the benefit of this diet for vegans (ie. already not meat eaters), the fact that you likely have a low trans fat intake is good. The diet promotes good oils like olive oil (low trans fat) over virtually everything else. But gluten is targeted for elimination here, is the main culprit (if there is substance to this idea of gluten intolerance vs autoimmune diseases), and most vegans would likely be consuming gluten in their diets unless they are specifically trying to avoid it.

cheers,

john

hi patti,

I quote Deborah Drake from her intro letter to the diet plan:

How Long will this take? Remember, it takes years to develop an overgrowth, promoted by sugar, antibiotics, steroid hormones, anaesthetics, processed foods, smoking and alcohols. So it may take a while to remove the backlog. The yeast growing cycle of 12 weeks predicts a full three months of detox is needed to remove the colony from its destructive, magnesium stealing, lymph node serotonin depleting, hormone scavenging ways. After the yeast is gone however, you can enjoy better metabolism, weight management, mood control, and hormone stability.
Deborah Drake MD

My sail is set and we'll see where we end up later this year.

cheers,

john

Here's an interesting article on gluten intolerance and the mechanisms leading to autoimmune thyroid disease. Note how the problem starts within the gut and progresses from there.

The article makes one thing clear. If there is a gluten intolerance issue here for my ITP, a gluten free diet will likely be a life long prospect.

I also liked this bit:

When I first read Dr. Fine’s research, I was astounded by the implications. It suggests that 1 in 3 Americans are gluten intolerant, and that 8 in 10 are genetically predisposed to gluten intolerance. This is nothing short of a public health catastrophe in a nation where the #1 source of calories is refined flour. But while most are at least aware of the dangers of sugar, trans-fat and other unhealthy foods, fewer than 1 in 8 people with celiac disease are aware of their condition. I would guess that an even lower proportion of people are aware they are gluten intolerant.

thehealthyskeptic.org/the-gluten-thyroid-connection

The gluten-thyroid connection

In the first article in this series, I showed that hypothyroidism is an autoimmune disease in 90% of cases. In this article we’re going to discuss the connection between autoimmune thyroid disease (AITD) and gluten intolerance.

Several studies show a strong link between AITD (both Hashimoto’s and Graves’) and gluten intolerance. [1, 2, 3, 4, 5] The link is so well-established that researchers suggest all people with AITD be screened for gluten intolerance, and vice versa.

What explains the connection? It’s a case of mistaken identity. The molecular structure of gliadin, the protein portion of gluten, closely resembles that of the thyroid gland. When gliadin breaches the protective barrier of the gut, and enters the bloodstream, the immune system tags it for destruction. These antibodies to gliadin also cause the body to attack thyroid tissue. This means if you have AITD and you eat foods containing gluten, your immune system will attack your thyroid.

Even worse, the immune response to gluten can last up to 6 months each time you eat it. This explains why it is critical to eliminate gluten completely from your diet if you have AITD. There’s no “80/20″ rule when it comes to gluten. Being “mostly” gluten-free isn’t going to cut it. If you’re gluten intolerant, you have to be 100% gluten-free to prevent immune destruction of your thyroid.

So how do you find out if you’re gluten intolerant? Unfortunately, standard lab tests aren’t very accurate. They test for antibodies to gluten in the bloodstream. But antibodies in the blood will only be found in cases where the gut has become so permeable that gluten can pass through. This is a relatively advanced stage of disease. Blood tests will miss the many milder cases of gluten intolerance that haven’t yet progressed to that stage.

Stool analysis is far more sensitive, because it detects antibodies produced in the digestive tract that aren’t yet escaping into the bloodstream. Using this method at Entero Lab, Dr. Kenneth Fine, a pioneer in the field, has found that up to 35% of Americans are gluten intolerant.

In addition to the stool analysis, Dr. Fine’s lab uses a cheek swab to test for the genes connected with gluten intolerance and celiac disease. People with HLA DQ genes are more likely than the general population to have autoimmune disease, celiac disease and gluten intolerance. Dr. Fine’s research shows that more than 80% of Americans have one of these gene types.

When I first read Dr. Fine’s research, I was astounded by the implications. It suggests that 1 in 3 Americans are gluten intolerant, and that 8 in 10 are genetically predisposed to gluten intolerance. This is nothing short of a public health catastrophe in a nation where the #1 source of calories is refined flour. But while most are at least aware of the dangers of sugar, trans-fat and other unhealthy foods, fewer than 1 in 8 people with celiac disease are aware of their condition. I would guess that an even lower proportion of people are aware they are gluten intolerant.

One reason gluten intolerance goes undetected in so many cases is that both doctors and patients mistakenly believe it only causes digestive problems. But gluten intolerance can also present with inflammation in the joints, skin, respiratory tract and brain – without any obvious gut symptoms.

As much improved as Dr. Fine’s methods are, they aren’t perfect. In some patients with autoimmune disease, their immune system is so worn out they can no longer produce many antibodies.

Hashmioto’s, the most common autoimmune thyroid condition, is primarily a Th1 dominant condition. I’ll explain what this means in further detail in a future article. For now, what you need to understand is that in Th1-dominant conditions, the Th2 system is suppressed. The Th2 system is the part of the immune system responsible for producing antibodies. When the Th2 system is severely depressed, the body’s ability to produce antibodies is impaired. The levels may be so low that they won’t show up on a test. So, even if you have gluten intolerance, your test for gluten antibodies may be falsely negative if you have Th1-dominant Hashimoto’s.

This is why I recommend that you avoid gluten if you have AITD, regardless of whether tests show an active antibody response. This is especially true if you have one of the genes (HLA DQ1,2, or 3) that predisposes you to developing gluten intolerance. In my opinion continuing to eat gluten when you have a confirmed autoimmune condition simply isn’t worth risking the immune destruction it could cause.

In fact, the more I learn about gluten and its effects on the body, the more I think we’d all probably be better off not eating it. Mark Sisson has written extensively about the dangers of gluten and gluten-containing grains, so head over there and have a look if this is new to you. The short version: foods that contain gluten (both whole grains and flours) contain substances that inhibit nutrient absorption, damage our intestinal lining, and – as I’ve described in this article – activate a potentially destructive autoimmune response. What’s more, there are no nutrients in gluten-containing foods that you can’t get more easily and efficiently from foods that don’t contain gluten.

The good news is that if you have AITD and are gluten intolerant removing gluten completely from your diet will dramatically improve your health. It’s not easy, but it’s worth it.

john,
you are definately on the right track. i hesitate to give you the following explanation because i know the attacks will come, but ill give it anyway and see if it interests you. now, keep in mind, volumes have been written, so, for the sake of not boring you, ill boil it down to a few sentences.

the human body in its current form is approx 2.5 million years old. for that entire time except for the last 10,000 years, the diet was nomadic. greens, fruits, seeds and the ocassional raw meat.
10,000 years ago, the human race moved from nomads to farmers, and for the first time grew crops, and cooked them. before that, they didnt eat wheat, rice, etc, because you cannot chew and digest raw grains. well, the human gut (intestines), evolved on that previous 2 million year old nomadic diet, not the cooked grains diet, so that the digestive enzynmes encountered something they were never designed to work on. its really no different than trying to run your car on diet coke rather than gas, it wasnt designed for it. so in reality, gluten intolerance and celiac disease, are not really diseases at all, they are just the bodys reaction to something foreign, ie, cooked grains. there are many variations of this diet, called sometimes the caveman diet. now, even if you try that, there is such a thing as healing the damage already done.
really, if you get a book on, for example the caveman or paleolithic diet, as i did, you'll find it leads to a second book, then a third, and you'll then realize there's so much to learn, and so different from your doctors understanding, it will make your head spin. then, the problem that you encounter is that, almost like somebody scripted it to be a tragic novel, everything you'll find out is the opposite of every drug commercial and doctors advice.
ok, so, this idea is going to be attacked. you'll just have to decide for yourself. the reason i run with this idea myself is that when i was first diagnosed, i kind of kept asking my hemo all these questions about his treatments and alternatives. his answers were, to me, humorous, because he basically said "we dont know what causes itp, we dont know how to cure it, but pay no attention to the man behind the alternative medicine curtain".

I was recommended to try a brown rice diet.
Is brown rice gluten-free?
Has anyone try this? Is it of any help for low platelets?

One thing I will never, ever understand.....how and why people pull something off a grocery store shelf (LOADED with chemicals)and consume it with the attitude that our government says its ok, so it must be!!!!!
Oh, don't get me started!!!!!!!!!

John and Freckles: Do you have a recommendation for anyone just starting down the gluen-free path? Books maybe?
Thanks.

Why would you think you'd be attacked for that? Come on - even the skeptics (including me) have common sense.

My daughter, who has Graves, has a big problem with digestion and is trying different diets. A bland diet is working best for her so far.

Disagreeing with an idea is not the same as attacking a person.

Recently there have been a number of postings about approaches I disagree with but the posters have carefully stated that this is their experience, their opinions, and been generous with advice and citations and support. I think that's great.

I believe changing my diet has sustained my ITP remission. I was having severe gut problems and discovered eventually I had fructose malabsorption. I changed my diet to address this (a lot of changes), a colonoscopy showed healed tissue, and I've been in remission following Rituxan for 3.5 years now. I feel a ton better too, and can get to work without running home to go to the bathroom several times. This isn't a scientific explanation but how I think about it is that if my gut is irritated my immune system could be in an uproar. There is a link between inflammation and lupus and other immune disorders, and one approach is to address inflammation.
Erica

Why would you think you'd be attacked for that?

Because that is the way he is.

And come on - when has the government said a food "off a grocery store shelf (LOADED with chemicals)" is ok? I will check the box of cookies I just bought to see if there is a government seal of approval on it.

I think we just need to quit attacking the government, the pharmaceutical companies, those
who want to take a pill, those who don't want to take a pill and get on with a life for heavens sake!

Lindy,

I was recommended to try a brown rice diet.
Is brown rice gluten-free?
Has anyone try this? Is it of any help for low platelets?

I don't think one should just try a brown rice diet. I would look for gluten free alternatives and brown rice is one of them. So is Quinoa, and oats as far as I can tell. See the list of foods advocated by the Canadian Celiac Association that I linked in an earlier post.

I have been roaming the grocery and health food stores the last few weeks trying to figure out what I am going to eat that is gluten free. There are a lot of brown rice based snack foods (eg. prepared as chips) that look and taste quite good.

One thing I have been doing is preparing a 1 cup or so of brown rice every few days. I make a vegetable salad (using the list provided on my diet sheet) with olive oil and lemon juice. It sort of comes out like Tabbouleh when I add a lot of parsley.

cheers,

john

hi freckles,

Thanks for your post. I continue to look for evidence and I will look for a book or two. Do you have one in particular as recommend reading?

BTW, I should mention that when I went back to my family doctor and explained that I was seeing a naturopath and had started a gluten free diet, he simply stated:

No one should be eating gluten in their diet.

I was surprised at his statement. This came after an earlier discussion where I suggested I wanted to look into food allergies/intolerances. We didn't get far because he did not believe any lab testing would reveal conclusive results. That was when I decided to take the route of a finding a MD qualified naturopath. I like my family doctor, but he wasn't going to get me to the next level of understanding the underlying health problems I am facing.

cheers,

john

John wrote:

Lindy,

I was recommended to try a brown rice diet.
Is brown rice gluten-free?
Has anyone try this? Is it of any help for low platelets?

I don't think one should just try a brown rice diet. I would look for gluten free alternatives and brown rice is one of them. So is Quinoa, and oats as far as I can tell. See the list of foods advocated by the Canadian Celiac Association that I linked in an earlier post.

I have been roaming the grocery and health food stores the last few weeks trying to figure out what I am going to eat that is gluten free. There are a lot of brown rice based snack foods (eg. prepared as chips) that look and taste quite good.

One thing I have been doing is preparing a 1 cup or so of brown rice every few days. I make a vegetable salad (using the list provided on my diet sheet) with olive oil and lemon juice. It sort of comes out like Tabbouleh when I add a lot of parsley.

cheers,

john

Great to know brown rice is a gluten-free alternative
as I quite enjoy eating brown rice.
Will read up on the link for other alternatives.
Thanks John.

In the last 3 months, my Platelets have gone from 250, to 4, to 250, to 8, to 250, to a recent low of 7. They are climbing again as symptoms have disappeared.

My CBC platelet count was 205 on June 24th, up from 7 on June 16th. Now taking 35 mg. Prednisone and will hold it around 30 mg. for a few weeks until I progress further with the diet plan.

The lab result came in today for H. Pylori. It was negative. That is one less thing to worry about.

I had another follow up visit today. My Homeostasis score improved to 22, from 16, in 8 weeks. I hope this report attaches successfully this time. The diet has improved my health in several ways, notably most aspects are within normal ranges now. The natural benefits of diet thus far are better sleep, better digestion (and no constipation or bloating), and good weight control as I am back to the same weight as when I started on prednisone 4 months ago. Again I do not feel like I am currently taking 30 mg of prednisone as I do not feel the side effects. So as my wife says, what's the downside to what you are doing? The downside is no sugar, no caffeine, and no alcohol, but I am getting used to it.

While the public lab test for H. Pylori was negative, other parasites are a question mark (eg. worms, flukes etc.). An indication still came up again for H. Pylori and an abnormal PSA level. Note that this diet, through high probiotic doses, should resolve any bad bacteria issues within the gut such as H. Pylori (if a problem) in the long run.

To the last list of supplements (posted here after my June 9th visit), new additions are:

1. MSM (Methylsulfonylmethane)

2. NAC (N-acetyl cysteine)

3. Vitamin B complex

4. High Potency Probiotic (Super Bifido Plus Probiotic) 61 billion colony forming units per capsule (two per day) versus the 11 billion per capsule (six per day)

There was an indication that vitamin K was still abnormally low, so we are aggressively upping the probiotics. I expect to be on the current regimen for at least another month or two. I should add that none of my naturopath consults or supplements are being covered by OHIP (Ontario Health), so the $$ are starting to add up. But in for a penny, in for a pound!

cheers,

john

P.S. Here's a summary of Dr. Drake's comments if you cannot access the report.

Physician’s notes:
July 7 2011
Great improvement in Homeostasis score from original 16 (concern) to now normal at 22 after aggressive probiotics, colon cleanse for possible parasites, and enzymes along with anti-candida diet rich in peroxidase foods. This greatly improved oxygenation, has improved the general adaptation and overall picture of health, with obvious lowering of gut inflammation. While improved the gut, prostate and peripheral circulation are still left needing more cleaning for another month or two for suspected flora shifts towards parasitic and fungal overload which may be affecting the bone marrow and platelets, causing a histamine reaction and contributing to the allergic potential and wheezing. The resumption of high dose prednisone to contain low platelets from ITP may cause more yeast growth. So be sure to continue high dose probiotics and antioxidants while adding more minerals to ground the electrical field and stabilize. Continue prednisone until the root cause of digestion inflammation determined and the platelets normalize under normal medical care. Client reports H. Pylori serology testing is negative but the pancreas and upper gut still seem inflamed needing further attention. The gut lining, being still inflamed, needs more SULPHUR (esp. since red lines on skin indicate low sulphur , the cleaning substance, antiparasiticagent which may also restore back joint discs to alleviate the spinal stress that may be impairing gut peristalsis.
For Sulphur add garlic, onion, mustard, apricot, or turmeric and consider the use of NAC 500 mg twice per day for liver sulphur and for joints and gut, use sulphur in the form of MSM 2-4 gram 4 times per day for 1-3 months.

New additions: Add more antioxidants and minerals, continue enzymes and repeat colon cleanse, continue yeast diet, continue prednisone for now until stabilized. Continue enzymes and probiotics (50 billion twice per day).

C:\fakepath\John July 7 2011.doc

Can you post the name of the probiotic you're using?

hi patti,

Switching to "Super Bifido Plus Probiotic" (requires refrigeration) versus Nuriche ProB HSBO Probiotic Blend.

Glad to see your family is doing so well. I should add that I originally thought this was just going to be primarily a diet change. I can start to see where this effort will likely lean to more homeopathic methods.

cheers,

john

What is a homeostasis score? I googled it but couldn't find anything that clearly defined it.
Erica

hi Erica,

See post #16326. I successfully attached the ES scan report on that day. I haven't been able to do it since. In the report, see the section that reads as follows:

The homeostasis score provides a fast overview of a patient’s homeostasis processes and responses with the key regulatory mechanisms, to understand the patient’s potential adaptation to lifestyle, disorders, diseases or current treatment. or any factors (temperature, stress…)
• Depend first of all from Genetic
• Could be affected by lifestyle/diseases/ treatment
• Decreased with age.

The healthy subject is not identified as such simply because he does not have any disease, but because his homeostasis score is acceptable and therefore his body can adapt and remain healthy when challenged. The homeostasis score cannot be used as diagnosis.
Results meaning
Maximum Score = 30
Very Good = 27-30
Good = 24- 27
Normal = 20-24
Warning = 17-20
Low = 10-17
Poor < 10

On this same page, there is a graphic just below that ranks various factors 1 to 5. I don't know what the weighting is nor what each category involves entirely.

This is the way it looked in May.





I know that the "ANS Class" refers to the Autonomic Nervous System.

Here's the current homeostasis as reported today in a jpeg file.





cheers,

john

Thanks, John. We are currently using VSL#3 but I would be thrilled if we could get a cheaper one with the same high amount of bacteria count. :-P Yep, it all adds up after awhile.

In response to your view that you will end up leaning more homeopathically, I'll give you my .02 worth. We spent 3+yrs trying to heal our boy via diet and supplements. What I learned through all of that and then on into homeopathy is that naturopathy (what you're doing - diet/supps) can help to support the body, bring some of it back to more normal, etc. but it does not heal. The only thing that I've ever found that actually heals at a cellular/molecular level is the homeopathy. We spent $15,000 over 3yrs just in ND's and supplements on our boy (not even counting the food) and accomplished nothing more then keeping a serious disaster at bay. Not that that wasn't good (avoiding disaster that is). But it didn't bring us what we wanted, which was healing. I won't tell you what we've spent homeopathically (trust me when I say not even close to the 15K) and my boy is actually healthy today. Healed in so many ways. And not just his platelets coming up (although obviously that's a big deal to us!). But his food allergies being gone, his mineral absorption becoming normal (they were always soooooo low), he's growing again, etc. So, that was our experience with those two methods. Our family has used other stuff (chinese medicine, indian medicine, etc.) but those are the two we used the most.

One thing to consider about the gluten. Because of how gluten grains are processed and breads made, it seems most people are allergic to gluten these days. Our boy's allergy was BAD. It was beyond extreme. HOWEVER, one of the things my ND found in the last year of working with him during the ITP stuff is studies that actually showed some people require gluten to keep their gut flora balanced. This ended up being the case for our son. While we were GF (just over 3yrs) we kept chasing horrible gut bacterias on him. Every time we would get one under control another would pop up horribly out of balance no matter how much probiotics we used or probiotic foods we tried. Once the homeopathy had healed his gluten allergy to the point where he could eat it again we all of a sudden stopped having issues with bad gut bacteria gone out of control and his gut was actually able to start healing. At first he "needed" gluten with each meal. But more and more as he healed and his body balanced out it wasn't necessary at every meal. But for him, being GF was a very bad thing. So just watch your gut bacteria to make sure you're not one of those people that has to have it. Gluten actually functions as a method of keeping gut bacteria in balance for certain people.

Glad you're feeling better! Diet definitely makes a huge difference!

patti

hi patti,

Thanks for your comments. I get the "healing" part of what needs to be done and I got a sense of that reading Joan Young's book. As the issue of parasites has come up, we had a run with a Biofeedback technology today. I don't have time for details right now as I am packing for Boston.

Anyway, we'll see where we get to in the coming weeks.

cheers,

john

John, I went on a very strict candida diet over 6 months ago, and it is my personal belief that diet and nutrition as part of a whole approach to health and wellness is critical. It has been about 5 to 6 months since my last blood test, which showed my count at around 110 (over the last 2 years it goes from 100 to 130).

But like you I have felt so much better. In the "new" forum, I posted how I have cleared up my digestive issues, my skin problems, my brain fog, my tiredness/drowsiness, my sinus/congestion problems, and so much more. I did it by eating fresh meats and vegetables, nuts, and some rices and beans mostly. Lots of anti-fungals, and pre/probiotics and vitamins/minerals. I just recently added (some) fruits back in. But I avoid all any any type of sugar, alcohol, wheat, dairy (except eggs), gluten (but not oats, as they are not really glutenous like wheat), caffeine, vinegar, processed foods, artificial sweeteners, and yeast.

I am kind of looking forward to my next blood test to see if this diet has helped. While I was only diagnosed with ITP last month, I was doing the diet to get rid of my candida (which many doctors don't even believe exists). Personally, I think they are quacks. Why would all my problems go away by eating healthy and using antifungals? Hmmm.

I am here to learn what I can about ITP from those that have been dealing with it for longer than me, and to hopefully find some natural ways to help improve my platelet count.

There are others who believe in the natural approach. I have read too much about the tons and tons of side effects of these so-called wonder (steroid-based) drugs. Besides, steroids help contribute to leaky gut syndrome which very well could be a cause of lower platelet counts, so to me it is counter intuitive to use something that is supposedly helping when in fact it is doing the opposite.

I know I may be met with some criticism and/or skepticism, but I can't argue with my body and how well it has responded to being healthier.

Joe

Joe I'm really glad you have a good high count - my lab wouldn't even consider you as having ITP. However - as to the "so-called wonder (steroid-based) drugs", I was put in a remission thanks to them. At the time I was diagnosed, with a real low count not in the 100k, the only treatments were a splenetomy and the so-called wonder drug. No I didn't like being on prednisone but it gave me a long remission without giving me leaky-gut and was not "counter intuitive" and it did help not "supposedly helping".

Yeah I'm delighted your eating habits and life style are making you feel great - but with a count of 100k+ please do not come here and knock those of us who have had to do something about our low low count. We all do what we have to do.