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01-23-2013, 10:29 PM   #1
GutlessWonder86
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Mthfr & IBD

http://www.mthfrease.com/mthfr/2013/...ative-colitis/

this is a blood clotting disorder that's genetic. I have it and have been told that there is a link between that and having Crohn's & UC.

Anybody else have this as well?
01-23-2013, 10:30 PM   #2
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some MTHFR sites though seem to push their own agenda (products) so I was just wondering if all IBD patients have this or only a select few.
01-23-2013, 10:45 PM   #3
GutlessWonder86
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http://www.mthfrease.com/mthfr/2012/...rol-pills-bcp/

For those who have MTHFR, birth control pills raise a serious risk and I have done the research and it is true. just an fyi for all.
01-24-2013, 11:55 AM   #4
GutlessWonder86
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Anybody else out there with MTHFR genetic mutation??

The moderator of one MTHFR site that all IBD patients have one of the mutations. I have a hard time believing it as some patients don't even have family members with IBD but yet, they are the only one who does.

I just want to know if I am the only person with A1298C, heterozygous (MTHFR genetic mutation) or if there are members who have this or the C mutation.

Last edited by GutlessWonder86; 01-24-2013 at 01:08 PM.
01-25-2013, 12:50 AM   #5
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bump...does anybody else have any type of blood clotting disorder like Factor V, Protein S deficiency, etc. ANYBODY out there?? please answer. ty
01-27-2013, 03:19 AM   #6
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bump
01-27-2013, 08:13 PM   #7
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01-28-2013, 03:33 AM   #8
David
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Paging stateofmind to this thread
01-29-2013, 03:47 PM   #9
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02-05-2013, 02:55 AM   #10
PollyH
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http://www.mthfrease.com/mthfr/2013/...ative-colitis/

this is a blood clotting disorder that's genetic. I have it and have been told that there is a link between that and having Crohn's & UC.

Anybody else have this as well?
I think you misinterpreted what that article was saying. A lot of people have a MTHFr genetic weakness. One variation on this weakness (C677T) is more prevalent in Crohn's and colitis. Yes, this C677T variant is also associated with a blood clotting disorder. However, that doesn't mean you are invariably going to get a blood clotting disorder. It doesn't mean that a person is invariably going to get Crohn's or colitis either. There are a lot of other diseases associated with this variation / weakness, too. It takes other things going wrong in the body for any of these diseases to materialize.

This MTHFr genetic weakness makes it more difficult for the body to turn formyl-folate into methyl-folate. This is just one step in the process of creating methyl-folate. There can also be weaknesses in preliminary steps leading up to this conversion spot. There are a lot of people with at least some genetic weakness someplace along the processing line of creating methyl-folate. I believe I read about 60 percent of the US population has at least some problems here. So, this isn't an inevitable sentence to illness. Lots of people have this weakness, to at least some extent.

Luckily, since you have found out that this is a genetic weakness for you, you can counteract it. This weakness means that on average, your body will be making less methyl-folate than someone else. So, you take a supplement of methyl-folate. It is almost as simple as that.

The problem is, how much do you take? That varies from 1 mg to 15 mg per day, depending on how severe the problem is. Each person is different. However, you never start with 15 mg. Always start with the 1 mg. Watch how it affects you. Make sure you have plenty of B12 with it. Have your doctor monitor your homocysteine levels. You need to take enough methyl-folate, methyl-B12 and P5P (pyridoxal-5-phosphate) to bring your homocysteine levels down to normal. Even then, some people need a bit more of the methyl-folate. If the methyl-folate supplement doesn't make you feel well, then perhaps you need some niacinamide or P5P to go with it. Supplements need balance.

Besides the genetic weakness, there are other conditions in the body which can interfere with your methyl-folate level or use. Too much folic acid could interfere with the use of the methyl-folate. Mercury or arsenic could be a problem. Acetaldehyde created by yeast could be a problem. Since people with Crohn's and colitis generally have more yeast in their intestines, there is most likely a problem here with methyl-folate, even if the person doesn't have this genetic weakness.

The following is something I put together for a SIBO (Small Intestine Bacterial Overgrowth) discussion list. Most of it is applicable to Crohn's / colitis as well.

TYPES OF FOLIC ACID / FOLATE / VITAMIN B9

Vitamin B9 is usually referred to as folic acid, even though folic acid is just the synthetic form of this vitamin. If one were to be more exact, the term folic acid would only be used to refer to the fully oxidized synthetic compound known as pteroylmonoglutamic acid. This is the form of vitamin B9 found in most vitamin supplements and in fortified flour.

The body will try to convert the synthetic folic acid into dihydrofolate and then into 5-formyl-tetrahydrofolate and then into 5-methyl-tetrahydrofolate. Unfortunately, up to 60 percent of the people in the USA have at least some genetic trouble converting folic acid into these various folates. This conversion process can also be thwarted by heavy metals, alcohol, solvents, chemicals, toxins, certain antibiotics or drugs, and the acetaldehyde produced by yeast. Because of these conversion problems, other forms of vitamin B9 have now become available on the market.

If the body is having trouble converting folic acid into a more useable form, then ingesting folic acid may result in a build-up of folic acid in the blood. Some people are very sensitive to this build-up of folic acid and feel better when they avoid all food and supplements that have been fortified with the synthetic folic acid. One possible reason for their sensitivity is that a build-up of folic acid in the blood can actually interfere with methyl-folate (5-methyl-tetrahydrofolate) crossing the blood brain barrier. Methyl-folate is the only form of vitamin B9 that crosses the blood-brain barrier. There it is needed to help create your brain’s neurotransmitters, like serotonin, dopamine and norepinephrine. When the brain doesn’t get enough methyl-folate, one may suffer from depression, migraines, foggy thinking, irritability and many other brain symptoms.

According to Wikipedia,

“Common symptoms of folate deficiency include diarrhea, macrocytic anemia with weakness or shortness of breath, nerve damage with weakness and limb numbness (peripheral neuropathy)[citation needed], pregnancy complications, mental confusion, forgetfulness or other cognitive declines, mental depression, sore or swollen tongue, peptic or mouth ulcers, headaches, heart palpitations, irritability, and behavioral disorders. Low levels of folate can also lead to homocysteine accumulation.[7] DNA synthesis and repair are impaired and this could lead to cancer development.”

Dr. Ben Lynch has a surprisingly long list of things that could be caused by the lack of methyl-folate. This is his list as of December 6, 2012

Autism
Addictions: smoking, drugs, alcohol
Down's syndrome
Miscarriages
Pulmonary embolisms
Depression in Post-Menopausal Women
Schizophrenia
Fibromyalgia
Chronic Fatigue Syndrome
Chemical Sensitivity
Parkinson's
Irritable Bowel Syndrome
Pre-eclampsia
Stroke
Spina bifida
Esophageal Squamous cell carcinoma
Acute Lymphoblastic Leukemia
Vascular Dementia
Bipolar disorder
Colorectal Adenoma
Idiopathic male infertility
Blood clots
Rectal cancer
Meningioma
Glioma
Congenital Heart Defects
Infant depression via epigenetic processes caused by maternal depression
Deficits in childhood cognitive development
Gastric Cancer
Migraines with aura
Low HDL
High homocysteine
Post-menopausal breast cancer
Atherosclerosis
Oral Clefts
Type 1 Diabetes
Epilepsy
Primary Closed Angle Glaucoma
Alzheimer's
Tetralogy of Fallot
Decreased telomere length
Potential drug toxicities: methotrexate, anti-epileptics
Cervical dysplasia
Increased bone fracture risk in post-menopausal women
Multiple Sclerosis
Essential Hypertension
Differentiated Thyroid Carcinoma
Prostate Cancer
Premature Death
Placental Abruption
Myocardial Infarction (Heart Attack)
Methotrexate Toxicity
Nitrous Oxide Toxicity
Heart Murmurs
Tight Anal Sphincters
Tongue Tie
Midline Defects (many are listed above)
Behcet's Disease
Ischemic Stroke in Children
Unexplained Neurologic Disease
Asthma
Shortness of Breath
Bladder Cancer
Anecephaly

http://mthfr.net/mthfr-mutations-and...se/2011/09/07/

One might be able to add Raynaud’s to that list, since folate is low and it is needed for circulation.

WHEN NOT TO TAKE METHYL-FOLATE

http://mthfr.net/taking-folate-and-f...ce/2011/11/15/

According to this reference, if you methionine levels are high, then you might not tolerate the methyl-folate because it could raise methionine levels even higher. If your methionine levels are high, this doctor suggests trying P5P and magnesium first to help bring methionine levels down. Then you may be able to tolerate the methyl-folate.

Some people may have to start slowly, because the methyl-folate may open up microcirculation. When you first open up microcirculation, you may experience some inflammation or uncomfortable reactions.

WHERE TO PURCHASE METHYL-FOLATE AND FORMYL-FOLATE

Formyl-folate also goes by the names of formyltetrahydrofolate, folinic acid and leucovorin (prescription). If you are looking to purchase some formyl-folate, most vitamin supplements call it folinic acid. The other form available as a supplement is methyl-folate. It also goes by the names of 5-methyltetrahydrofolate, and 5-MTHF.

The vitamin supplements using this form call it a whole host of different names. Life Extension calls their methyl-folate product Optimized Folate, and Metagenics calls their product FolaPro. Solgar calls their product just Folate. Nutricology calls their product QuatreActiv Folate. Jarrow calls their product Methyl-folate. Vitacost calls their product Bioavailable Folate. Thorne Research calls their product 5-MTHF. XYMOGEN® also calls their product 5-MTHF. These products contain anywhere from 0.4 to 1 mg per pill.

However, there are a couple of higher dose products if you need them. The price per unit active ingredient is cheaper with these. So, if you need a higher dose, use these instead of taking a lot of the lower dose pills. Neurobiologix sells Methyl-folate Plus and 5-MTHF. Each of these contains 5 mg per pill as well. However, there is also some folinic acid and niacinamide in the Methyl-folate Plus product. (So, it costs a bit more.) When you take into account the dose, these two Neurobiologix methyl-folate products are considerably cheaper per unit than the other products that I’ve seen on the market.

There are two prescription products that contain methyl-folate --- Deplin and Metanx. Deplin is specifically marketed as useful for treating depression. It is a high potency product containing 7.5 or 15 mg of methyl-folate per pill. (Rather expensive.) Another prescription that contains methyl-folate is Metanx. This prescription is used to treat diabetic neuropathy. It contains about 3 mg of methyl-folate per pill along with some other B vitamins in their active coenzyme form.

If you find something else on the market, make sure it is the pure L form, and that it doesn’t contain the D form. Someplace on the label, the product should say L-methyltetrahydrofolate, Metafolin or Quatrefolic.

==========================
Gut. 1999 September; 45(3): 389–394.
PMCID: PMC1727640
Increased prevalence of methylenetetrahydrofolate reductase C677T variant in patients with inflammatory bowel disease, and its clinical implications
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1727640/

Note the research group suggests you take more folic acid. What they should have said was that you should take more methyl-folate, also known as methyltetrahydrofolate.
02-05-2013, 01:08 PM   #11
GutlessWonder86
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my folate levels are fine as well as the B levels. the tests found out that there is definitely a genetic modification an SNP,that is causing my body to throw clots (something was low, can't remember the term but we can't do anything about it, not even taking vitamins or supplements as it is definitely gene related) at any given time. NOTHING can cure it. even on Arixtra, I am still throwing small clots and have to be monitored.

The rest of the results are all within normal range. I either got this from my mother or father as I said before am A1298C, heterozygous. it really stinks. having to live like this but it is what it is. thanks for the information.
02-05-2013, 02:04 PM   #12
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my folate levels are fine as well as the B levels. the tests found out that there is definitely a genetic modification an SNP,that is causing my body to throw clots (something was low, can't remember the term but we can't do anything about it, not even taking vitamins or supplements as it is definitely gene related) at any given time. NOTHING can cure it. even on Arixtra, I am still throwing small clots and have to be monitored.

The rest of the results are all within normal range. I either got this from my mother or father as I said before am A1298C, heterozygous. it really stinks. having to live like this but it is what it is. thanks for the information.
That is the pits. In general, to avoid clot formation, you want to limit your exposure to estrogen and most polyunsaturated oils. (A small amount of fish oil may be fine, but not a lot.) Taurine and magnesium will help the integrity of the platelets. You might be low on taurine and magnesium because of the yeast. Ask your doctor about the advisability of using some nattokinase to help break down clots. If you are a woman, you really need to look at your estrogen / progesterone ratio. The progesterone will protect you from the clot forming properties of estrogen.

Taurine will cause cells to release some of their stored toxins. So, if you wish to try this, always start slowly with taurine to avoid too big a release of these toxins. Probably for this reason, some people with Multiple Chemical Sensitivity have to start with as little as 50 mg per day of taurine. If you try taurine, and it bothers you, try some molybdenum to help convert the taurine into sulfates.

Molybdenum will lower your copper levels. That is usually what is needed, but not always. Molybdenum with pantethine will help your body remove the acetaldehyde created by yeast.

I like your handle. I used to own a car which we affectionately referred to as a gutlesswonder. That was when they first started trying to improve gas mileage.
02-05-2013, 02:04 PM   #13
GutlessWonder86
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I am in menopause. NEVER been on the pill because I knew from my GI that it was dangerous.
02-05-2013, 02:11 PM   #14
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my MD tested my hormone levels and it showed that it was within the range that I'm no longer fertile at all and definitely in menopause. have been for a whole year.

Magnesium was tested to be fine but I do take extra Vit. D as that is 3 points low. I am on chewable childrens vitamin per the MD because my gut is very sensitive. My blood pressure was very high last year but that's under control, stress levels are in check, & my neuro RNNP is helping me get these darn migraines that I get daily under control. I've had them since my stroke 8 yrs ago.

As for the menopause, I don't miss the hormonal Croh's flares which had me admitted to the hospital due to kinked small bowel (GI said it works like a slinky moving food and mine,when my period would hit, would automatically kink and cause an obstruction...FUN TIMES NOT) that would obstruct. I don't miss the cramps or abdominal pain either.

I'll take my day sweats and mood swings over what I went through. Don't miss that part of my life. anyway, do you have MTHFR?? how do you know so much? have a good day.
02-05-2013, 02:15 PM   #15
GutlessWonder86
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Found the info :my cardiolipine levels are low and that's whats' causing the clots. it's a 16. everything else that they ran is normal and my hemotologist told me that is the culprit of my many many dvts.
02-06-2013, 05:26 AM   #16
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Found the info :my cardiolipine levels are low and that's whats' causing the clots. it's a 16. everything else that they ran is normal and my hemotologist told me that is the culprit of my many many dvts.
I will talk about hormones, hot flashes and clotting a bit tomorrow. However, for tonight, I'd like to say a few things about fats in the diet. Reducing the polyunsaturated oils in the diet and increasing the saturated oils (like coconut oil and palm oil) should help anyone reduce the tendency to form clots. It should also help eliminate the migraines.

In your particular case, I found something very interesting about a saturated fat called palmitic acid and the proper functioning of cardiolipin.

"At birth, the baby's mitochondria contain a phospholipid, cardiolipin, containing palmitic acid, but as the baby eats foods containing polyunsaturated fatty acids, the palmitic acid in cardiolipin is replaced by the unsaturated fats. As the cardiolipin becomes more unsaturated, it becomes less stable, and less able to support the activity of the crucial respiratory enzyme, cytochrome oxidase. The respiratory activity of the mitochondria declines as the polyunsaturated oils replace palmitic acid, and this change corresponds to the life-long decline of the person's metabolic rate." - Ray Peat http://www.dannyroddy.com/main/2012/...-for-incr.html

From the above quote, it seems you might be able to improve the functioning of your cardiolipin by eliminating most polyunsaturated oils from your diet and instead eating some saturated fats, especially palmitic acid.

I found a website that listed the fatty acids found in various oils. www.chempro.in/fattyacid.htm From the oils/ fats listed, it seems the best source of palmitic acid is Palm oil. (not Palm kernel oil). You can purchase Palm oil from Spectrum. They make an organic shortening that only contains palm oil. It isn't hydrogenated.
02-06-2013, 08:53 AM   #17
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Just to quickly add to the mention on polyunsaturated fats and the poor effects they can have on health, saw that researchers this week re-examined data from an earlier study examining diets high in polyunsaturated fats and diets high in saturated fats.

Findings were that those consuming high amounts of polyunsaturated vegetable oils where at significantly elevated risk of dying from heart disease.

"New data from old study reveals that reducing saturated fat in favour of ‘vegetable’ oils increases risk of heart attack and can have fatal consequences"

http://www.drbriffa.com/2013/02/06/n...-consequences/
02-06-2013, 02:19 PM   #18
PollyH
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my folate levels are fine as well as the B levels. the tests found out that there is definitely a genetic modification an SNP,that is causing my body to throw clots (something was low, can't remember the term but we can't do anything about it, not even taking vitamins or supplements as it is definitely gene related) at any given time. NOTHING can cure it. even on Arixtra, I am still throwing small clots and have to be monitored.

The rest of the results are all within normal range. I either got this from my mother or father as I said before am A1298C, heterozygous. it really stinks. having to live like this but it is what it is. thanks for the information.
Your genetic inevitability for forming clots might not be that strong. At least it doesn't seem to be that strongly connected to the A1298C. If you get your homocysteine levels under control, perhaps the A1298C isn't that important. Methyl-B12, methyl-folate, and P5P will help you control your homocysteine.

"There are some reports that the MTHFR A1298C can also lead to increased blood clots, but this is much less well established. … MTHFR A1298C, might indirectly affect coagulation. MTHFR is a protein that helps along an important chemical reaction. The A1298C version of the protein does not work very well. This can lead to an increased amount of the chemical homocysteine in blood, and it's excess homocysteine that increases clotting." http://genetics.thetech.org/ask/ask82
02-06-2013, 02:41 PM   #19
GutlessWonder86
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I had the homocysteine levels checked. they are fine I checked my lab report.
02-06-2013, 04:36 PM   #20
PollyH
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my MD tested my hormone levels and it showed that it was within the range that I'm no longer fertile at all and definitely in menopause. have been for a whole year.

Magnesium was tested to be fine but I do take extra Vit. D as that is 3 points low. I am on chewable childrens vitamin per the MD because my gut is very sensitive. My blood pressure was very high last year but that's under control, stress levels are in check, & my neuro RNNP is helping me get these darn migraines that I get daily under control. I've had them since my stroke 8 yrs ago.

As for the menopause, I don't miss the hormonal Crohn's flares which had me admitted to the hospital due to kinked small bowel (GI said it works like a slinky moving food and mine,when my period would hit, would automatically kink and cause an obstruction...FUN TIMES NOT) that would obstruct. I don't miss the cramps or abdominal pain either.

I'll take my day sweats and mood swings over what I went through. Don't miss that part of my life. anyway, do you have MTHFR?? how do you know so much? have a good day.
I don't know if I have MTHFr or not. I've not been tested. However, I have read about it because it is a hot topic in the autism groups. I don't have an autistic individual in my family, but I've found that the autism community has the most advanced information on gut and brain health. Going to their conferences and reading their information is a really great way to learn. I used to have Candida overgrowth, and that is how I got interested in gut health. Fortunately, I've not had the pleasure of Crohn's or colitis.

There is a book you should read called What your Doctor may NOT tell you about Menopause, by John Lee, MD. Among other things, it talks about how a poor ratio of estrogen to natural progesterone can lead to blood clots. (Also, too much estrogen is going to get rid of your folate, B12, B6 and zinc.)

At menopause time, my new doctor wanted to put me on Hormone Replacement Therapy. I refused and found another doctor. I was able to control the hot flashes of my menopause using natural progesterone cream and pregnenolone. (Once in a while, when the natural progesterone wouldn't work, I would add the pregnenolone, and that would take care of it.) Pregnenolone was something doctors used to use for hot flashes before the drug companies came up with their hormone replacement therapy. I never had to use the estrogen that causes blood clots. (You can get the natural progesterone cream and the pregnenolone over the counter.)

Eventually, I had my urine thyroid levels tested and found a doctor who gave me some Armour thyroid based on those test results. (Blood testing is an unreliable way to determine how the body is using thyroid. Urine or saliva testing is better.) The thyroid got rid of the hot flashes and I no longer needed to take the pregnenolone and natural progesterone. This isn't too surprising in that the thyroid helps the body create more pregnenolone and natural progesterone.

Some people have trouble adding in the natural progesterone. There are several possible reasons that I think might be responsible for this.

1) You need sulfates to help transport the natural progesterone and estrogen. Perhaps the person is low on sulfates.

2) You need methyl groups to help process the hormones. Perhaps the person was low on methyl-B12 or methyl-folate.

3) The liver must get rid of excess hormones and the downstream byproducts of these hormones. Perhaps the liver is over-taxed.

4) Small Intestine Bacterial Overgrowth means there is too much bacteria in the small intestine. Sometimes this bacteria creates an enzyme called beta-glucuronidase. This deconjugates the hormonal products the liver has dumped into the intestines. Then these products can get reabsorbed. It essentially is like trying to bail out a boat, with someone else pouring some of the dumped water back into the boat. It doesn't work well. Calcium-d-glucarate would counter this problem by inhibiting the beta-glucuronidase enzyme of the bacteria. However, if you try this, start very slowly with the calcium-d-glucarate. Gradually work up to 3 pills with each meal. Later, when you want to stop, gradually work your way down. I read where one person had to start with 1/10th of a pill, but eventually, this really helped her health. If you start too quickly, there may be an abrupt change in hormone levels. This can start a migraine.

5) Estrogen encourages yeast growth, but natural progesterone does not. They have shown this in a study of rats. The ovaries were removed, then they gave one group of rats estrogen and the other group of rats natural progesterone. The ones given estrogen got a yeast infection. The rats given natural progesterone did not. However, people have noticed that when they first take the natural progesterone, sometimes there is a flare of yeast growth. I suspect this is because when you give progesterone, the estrogen starts to come out of the cells, mainly in the sulfated form.

I'm somewhat concerned that you feel your folic acid levels are fine. Folic acid may be fine, but methyl-folate might not. You need the methyl-folate for opening up blood flow in the brain. Proper blood flow in the brain has a lot to do with migraines. Folic acid actually interferes with methyl-folate getting into the brain. Only methyl-folate crosses the blood-brain barrier. Some people with these MTHFr variations not only take some methyl-folate, but they find that they do a whole lot better by eliminating all the folic acid in their supplements and fortified food supply.

Migraines.

They have noticed a spike in omega-6 linoleic fatty acid in the blood just before a migraine starts. Fatty acids are released under conditions of stress. Stress can be psychological, low sugar, no sleep, etc. If the fatty acids stored in your body are mainly polyunsaturated, then this is going to cause cells to leak some of their serotonin into the plasma. When the serotonin is not inside cells, this causes the blood vessels to constrict. As the serotonin dissipates, the blood vessels open up again. This is when the pain starts. So, one of the things you want to do is avoid polyunsaturated oils. I had a friend who said that each morning she would get a migraine. I asked what she was eating for breakfast. It included flax oil. (Flax oil is polyunsaturated.) I suggested that she cut out the flax oil. She did and the migraines stopped.

One of the other things you want to do is improve the integrity of your platelets. When the platelets stick together they release serotonin and increase blood clotting. Here is an easy way to remember what is going on. When you cut yourself, your body has to stop the bleeding. It does it by reducing blood flow to the area and forming a scab. The serotonin released after a cut helps your body do this. The serotonin in its free state shuts down blood flow, and it tells the body to create more fibrin to form a scab (like a clot) to stop the bleeding.

I mentioned previously that taurine and magnesium can help improve the integrity of platelets. I forgot to mention that pantethine can also help the integrity of platelets. (That is pantethine, not pantothenic acid of pantothenate.)

You have probably heard that fish oil can help with migraines. Well, maybe, but fish oil might only be a good idea if you are restricting the other polyunsaturated oils. The fish oil makes the platelets more slippery, so they don't stick together as easily and release their serotonin. Yet, fish oil is polyunsaturated. So, too much of this could be a problem. (There are things in fish oil besides the polyunsaturated oils.)

If you change your diet and hormones, be sure to get your protime / clotting information tested on a regular basis. You don't want to be taking too much heparin. Discuss with your doctor what you are doing and why.
02-06-2013, 10:28 PM   #21
GutlessWonder86
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not allowed to take ANY type of hormone estrogen or progesterone. I've had over 5 clots in my lifetime.
02-06-2013, 10:29 PM   #22
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AND the 12" clot on my brain that caused my stroke 8 yrs. ago. Hormones are a HUGE NO from my primary MD, GI, GI surgeon, neurologist, and hematologist. Risks outweigh the benefits. Also I remember Sterling Hill saying to me that those who have MTHFR, hormones are a death sentence and women who have any mutation with this can NOT take any kind of hormone.

I sort of knew they were dangerous anyway years ago when my GI told me that they cause clots in IBD patients when they flare as their blood tends to become "sticky" when there is inflammation is present in the body. IBD inflammation is around 50% increased risk and then add ANY kind of hormone birth control and it's well over 75%. When I threw my 12" clot I knew I didn't contribute to it by taking the pill. At that time, Crohn's was blamed for the clot and stroke until I hired my hematologist who nailed MTHFR dx on the first blood test.
02-06-2013, 10:34 PM   #23
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I meant to say my folate levels are fine. B12 levels are fine. B vitamin levels are really doing great.
02-06-2013, 10:40 PM   #24
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I was told to avoid any kind of soy, green tea, no dark green veggies--may romaine lettuce 2x a week but a very small portion, no garlic --not even garlic bread or anything with garlic in it (I love cooking with it), no soy milk as it will interfere with my treatment. I get my clotting time/levels checked every 3-6 months. it was just tested 3 months ago and seeing as I'm on Arixtra, it's within normal range.

also, with my gut, I have to peel fruit, no nuts, no shredded wheat, no roughage, no corn, no cabbage, etc. I love chicken, fish, antibiotic free and hormone free beef/chicken.
tuna sometimes but packed in fresh water.
10-13-2014, 09:45 PM   #25
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I don't know if I have the genetic mutation but im going to try Deplin. If that helps I may indeed have the mutation. Not sure who could check this since it's likely a specialized blood test.
10-14-2014, 12:35 AM   #26
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The MTHFr test is part of the 23andme tests. Or you can probably find out where to get the tests separately at the website www.MTHFr.net

There is another thing you can do to keep estrogen levels low and progesterone levels high. There is something called an aromatase inhibitor. This inhibits the conversion of progesterone and testosterone into estrogen. The drug company version of this currently costs $500 a month. It is often used for cancer treatment. However, there is a herbal form of it that costs $50 a month. You can get these herbs from Chi's Enterprises in a product called Myomin. (There are other aromatase inhibitors on the market. I'm just not familiar with their efficacy.) Even if you have decided never to mess with natural progesterone and pregnenolone, an aromatase inhibitor might be something to consider. It may be able to help you with your blood clotting problem.

Of course, keeping your liver in good health, making sure you have enough thyroid and sulfates are also going to help you keep your estrogen levels in check. One more weird fact. If you take too many bioflavonoids, that can interfere with your liver's ability to get rid of estrogen. The liver uses the same pathways to get rid of the bioflavonoids (phenolics) as it does to get rid of estrogen (another phenolic).

I would like to correct something. I had read at the Deplin website that only the methyl-folate form of folate will cross the blood brain barrier. That isn't true. Folinic acid will also cross and can be helpful. (Folinic acid doesn't contain methyl groups. Sometimes you don't want too many extra methyl groups.) They have recently found that kids on the autism spectrum will often have folate receptor antibodies. (Test for this currently costs about $100.) When those are present, high doses of folinic acid can be quite helpful.
10-14-2014, 08:02 AM   #27
nogutsnoglory
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I am waiting for my 23&me results. I'm assuming this would be part of the raw genetic data. Do you have a site you recommend to interpret the results?
10-14-2014, 06:04 PM   #28
PollyH
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My daughter used Genetic Genie to interpret the 23and Me results. However, since then, more websites have appeared. I can't tell you if any of those are better. Do a search on genetic interpretation.
10-14-2014, 06:31 PM   #29
nogutsnoglory
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That's the one I was planning on using. How can these sites operate when the FDA won't let 23andme interpret?
10-14-2014, 08:23 PM   #30
PollyH
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It doesn't make a lot of sense. However, we can be grateful we have some help with interpretation.
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