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Positive For 2 Copies Mthfr C677t Mutation.


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16 replies to this topic

#1 thundersweet

 
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Posted 11 September 2008 - 03:42 AM

I have two healthy children. Never any problems until about 2 years ago. Over the last 2 years, I have suffered two m/c. One at 8 weeks and an even more devastating one at almost 16 weeks. I delivered my 16 week at home. My doctor did some blood work and I tested pos for 2 copies of the c6677t mutation. My homocystine (sp?) is normal. She was not real concerned about it other than to say when I became pregnant to immediately start taking 81mg of aspirin and 4,000 of folic acid.

I am not celiac as far as I know. I do however think I am gluten intoloerant. My only symptoms are mood related. I am much better on a gluten free diet. I have only discovered this about 2 weeks ago so I am new to this diet. I e-mailed my doctor to see if there was any correlation between gluten and this gene mutation. She kinda blew me off saying that if a gluten free diet made me feel better, then continue. She did not offer any testing or anything even though I asked if there was some kind of testing available.

I am just wondering if anyone has any information about this gene and its relation to gluten intolerance. I have tried for the past year to get pregnant with no success. Hoping a gluten free diet might allow me to become pregnant in the near future. I want to loose another 40 pounds first if possble. My first child was conceived on a low carb diet. I think my son was but I can't remember. I am having both of my children do a gluten sensitivity test through Enterolab. Should get those results back in 2-3 weeks. I plan to do myself after I get back from our 2 week vacation at the end of September.

Any info on this gene mutation and how it related to diet would be appreciated.

Thanks,
Sandy
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#2 RainyZ

 
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Posted 11 September 2008 - 06:02 PM

I do not know the correlation, but I too have the same gene mutation. I only have one copy though, so it is not as bad.

I take aspirin and also Folgard (by prescription) along with my prenatals. It is good that you take folic acid, but you should also take B12 and B6 as well.

My first was conceived and born with no issues. I lost two in between to m/c. Both around 8 weeks. When I got pregnant again, they did a bunch of tests and told me about the mutation. My doctor told me that the mutation can cause miscarriages because of the high clotting incidence of people with the mutation. Our bodies can handle the clots because they are small, but our babies can't. She told me that my m/cs probably saved my life since most with the mutation die young from strokes, etc. I am pregnant now - not yet 7 weeks and crossing my fingers to get past 8... I saw the heartbeat the other day, so I feel good about that. The two m/cs, I had ultrasounds around 8 weeks just before m/c and didn't see heartbeats.

The mutation has something to do with the way our bodies deal with homocysteine. It is thought that B12 does most of the conversion process, so a diet higher in meat proteins theorectically will keep your homocysteine levels low, which is good. High homocysteine is thought to be a risk for cardiovascular disease. So, if you eat meat, even with the gene mutation, you have less chance of your levels being high.

My youngest has Celiac's. She is not yet 2. I breastfed her well over a year and didn't introduce gluten until after 9 months. Through the process with her, I found I have issues with gluten as well. We had some bbq the other day and I wasn't sure about the meat, but we ate some. She has had her gluten poop since then and I have had the usual brain fog and sugar cravings.... It is horrible. I am so out of it and I can't stop eating. It is a fight to stuff myself with veggies versus grabbing sugary stuff. I just want to lay on the sofa and I don't think it is the pregnancy. I gained a great deal of weight with both pregnancies and am convinced now that it was the gluten.

I've talked with my doc and she has no issue with eliminating gluten. I may also eliminate white sugar (and yeast) too. I had bp issues with my last and I don't want to go through that again. I am already considered high risk because of my age.

Good luck to you! I think you are wise to consider a gluten free diet. However, I didn't lose weight because many of the replacement products are higher calorie... my bad! :lol:
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#3 thundersweet

 
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Posted 12 September 2008 - 02:13 AM

I wonder if I need to be more concerned about this mutation. My doc does not seem concerned at all. Maybe because I am not pregnant at this time. She told the MTHFR gene was only a real probelm IF I also had high homosystine levels, which I don't. I would think she would have wanted me to take steps "before" I got pregnant.

I am curious though about the connection to gluten. Could it be that when consuming gluten, our bodies do not process the b vitamins and that we need to consume large quantities to absorb enough? I am not clear on why I am supposed to take so much folic acid AFTER I become pregnant. I am assuming because I am not absorbing it. And why did I not have any troubles with my first two? They were 3 years apart. They are 4 and 7 so my last child was born 4 years ago. Could it be at time wears on, I have done more damage by consuming gluten and now it has become a problem? One of these days I may test to see if I am celiac. I do not think I am a true celiac, just gluten intolerant. My doc just totally blew it off as no connection.

Good luck to you during this pregnancy!

Sandy
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#4 Rachel--24

 
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Posted 12 September 2008 - 04:54 AM

From what I understand MTHFR mutations are associated with autism (as well as a significant percentage of the population). People with MTHFR defects are more susceptible to toxicity.....they are less capapable of excreting mercury and other toxins.

It can lead to a shortage of glutathione....resulting in increased levels of heavy metals and other toxins in the body.

I've never heard of any connection between this gene and gluten intolerance....although food intolerance (in general) is extremely common in people who have difficulty excreting heavy metals/toxins (i.e. the autistic population).

MTHFR Dysfunction: (Methylene TetraHydroFolate Reductase)

This enzyme, as has been previously discussed, functions to donate a methyl group to folic acid in order to make 5- methyl tetra hydro folate, the active form of folic acid. 5-methyl tetrahydro folate then donates its newly acquired methyl group to the vitamin B12 molecule turning it into methyl B12 (AKA methyl cobalamin).

This is accomplished with assistance of yet another methyl passing enzyme (methionine synthase), which immediately grabs the methyl group from the B12 molecule and attaches it to homocysteine, thereby converting it into methionine, a vitally important amino acid. The end result of these rapid chemical reactions is an increase in methionine and a consequent decrease in homocysteine, a potentially harmful amino acid.

When insufficient amounts of methionine, an essential amino acid, are not being created due to dysfunctions in the MTHFR enzyme (or the methionine synthase enzyme), a great many biochemical abnormalities may, and often do, result.

For example, methionine is necessary in the manufacture of cysteine, one of the amino acids found in glutathione. With insufficient cysteine, not enough glutathione is made. SAM (S-adenosyl methionine) is also made from methionine and is another important methyl donor.

Glutathione is an extremely vital substance that helps combat free radical damage in the body (i.e. it is an antioxidant). It activates a variety of enzyme systems (including the metallothioneins) and is a premier detoxification agent in its own right (it removes mercury and other toxic metals).

Defects in the MTHFR enzyme (that activates folic acid) cannot be overcome by providing folic acid, however if the active form of the folic acid is provided (5 methyl tetra hydro folate), or folinic acid is substituted, then the mutation may be successfully bypassed


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Rachel

#5 ShayFL

 
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Posted 12 September 2008 - 04:56 AM

If you go gluten-free, dont bother with the tests as they will not be accurate. You must be consuming a good amount of gluten for at least 3 months (based on what everyone reports) for the tests to be accurate.
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GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

#6 RainyZ

 
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Posted 12 September 2008 - 11:59 AM

Don't let the autism post by Rachel scare you. The statistics on autism are two to six children out of 1,000. However, the C677T variant is extremely common: 13% of the general population are homozygous and 42% are heterozygous. Some estimates are higher on the incidence and there are other variants as well. I was only tested after repeat miscarriages, so if there is no reason to test someone, they may never know. I also had a healthy baby prior to the miscarriages....

My personal opinion is that we don't hear much about it because there is no drug to treat it. I was told to take baby aspirin each day and a folic acid/B6 and 12 supplement. No money for drug companies there.

I am going to speak to my doctor about the spec. carb. diet. I seem to have issues with so many foods that taking all grain, yeast and white sugar out may be the place to start. I have also been disappointed with the nutritional quality of replacement foods and am going to stop buying them.

I want to be well and I also want my baby to be well. :)
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#7 Rachel--24

 
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Posted 12 September 2008 - 03:45 PM

Don't let the autism post by Rachel scare you. The statistics on autism are two to six children out of 1,000.


The info. was not meant to scare anyone.....its just one of the things that has come to light with the research that has been done. Personally, I feel its better to be informed. I'd rather know of any possible risks ahead of time....but I do realize that not everyone feels the same.

If I had been aware of my own vulnerabililities I would not be sick today....and the issues that I have are very similar to what is found in the autistic population.

Also, the rate of autism is much higher than what you posted. Here are the state rankings from 2006-2007.....and since then the rates have continued to increase.
http://www.fightinga...te-rankings.php

The average incidence of autism today is 1 in 150.....its about the same rate as Celiac and people consider Celiac to be quite prevelant.

In some states the rate is 1 in 94 boys being diagnosed with autism.

Again. the info. isnt meant to scare anyone but some people may want to be informed about these things. I wouldnt dismiss autism simply because (as of right now) I do not have a child who is autistic. I am aware that there are a great deal of parents out there who are dealing with this......and the studies show a higher prevelance of the MTHFR mutation in the autistic population.

You can find the actual pecentages here.
http://www.jpands.or...l9no4/boris.pdf

My own doctors are treating autism and this is one of the gene mutations found in many of the kids. Most of them have at least one form of MTHFR gene mutation. The more genetic mutations an individual has....the more susceptible they are to damage from heavy metals.

I dont have children yet.....but since I'm going through this myself.....I do want to be informed. The info. is out there for anyone who chooses to research it.

The statistic of 2 to 6 out of 1,000 is WAY outdated......its not accurate.
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Rachel

#8 thundersweet

 
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Posted 16 September 2008 - 04:03 AM

Thanks so much for that information! I definitely will doing more research!

Sandy
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#9 mkm

 
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Posted 20 October 2008 - 08:47 PM

Cerefolin NAC contains 5.6 mg of L-methylfolate, 2 mg Methylcobalamin, 600 mg N-acetylcysteine. - does not contain yeast or gluten. http://www.cerefolin.com/PackageInsert
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#10 RachelSkates

 
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Posted 05 November 2009 - 08:03 AM

I am very interested inthis post.

I have one copy of the C677T mutation.

My pregnancy went well with folic acid. I am since divorced so I have not had any other pregancnies.

However, I have been dxed with autism in the past. I also am very sentitive to gluten and my Dr was "betting the farm" that I had celiac. Too bad I did not get that in writing! Haha. It turns out I do NOT have the celiac gene!! We were both blown away. However I had some Igg reistered even though I Have been off gluten for 1 1/2 years so he is assuming that I am quite sentive to gluten.

Well, this is a very interesting thread.

I look forwward to any other comments on the subject.

I am very concerned about the poster who said we are more likely to die from stroke etc? I thought that was with TWO copie and not just one?

I am learning more of this daily and hope to understand it better because I would not want to pass this on to my kid. Is this something I can pass on?
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#11 kellylynn

 
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Posted 05 November 2009 - 08:18 PM

I have at least 1 copy and my dr. put me on the cerefolin nac mentioned above. I'm actually also on a mild chelation treatment for metal toxicity. I didn't know the two were related. Thanks for the info!
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#12 Sunshine24

 
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Posted 17 January 2010 - 01:49 PM

Not sure if this helps, but I too have one copy of the MTHFR gene (although homocystine levels ok.) I was tested after my 1st miscarriage (via IVF #1, have done 8 IVFs all together due to unexplained infertility, now I know it's Celiac.) He told me to go on Folgard and a baby asprin before we started the next IVF round since the gene affects how my body aborbs those vitamins...I haven't been succesful, but now I know to go gluten free and try again!
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-Started TTC 4 yrs ago on my 30th bday. Unexplained infertility. 7 IVFs with my own eggs, 3 more IVFs with either donor eggs, surrogate or both.
-4 miscarriages including a devastating one at 20 weeks.
-Dx w/ celiac disease via bloodwork, endoscopy, biopsies, gene panel in 1/2010.
-Was told this was why we lost our son at 20 weeks; told to go gluten free asap and try again in 6 months.
-Very active in the infertility world, have lobbied in DC twice for infertility healh insurance, adoption tax credit, etc.
-Celiac disease testing will now be my new crusade. If fertility docs test for other autoimmune diseases in their workups, WHY are they not testing for this??

#13 sonear

 
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Posted 24 January 2010 - 03:03 PM

You can accurately test if you have not been eating gluten. You can do the stool based test from Enterolab.com without having eaten gluten in months. It is much more accurate than the blood tests. I got a panel where they do a gene test and an antibody test. When my gene test came back showing two copies, it proved that my child has at least one copy of it too (as well as my brother and both of my parents). That is very valuable information!
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#14 sonear

 
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Posted 24 January 2010 - 03:08 PM

I have at least 1 copy and my dr. put me on the cerefolin nac mentioned above. I'm actually also on a mild chelation treatment for metal toxicity. I didn't know the two were related. Thanks for the info!


Can you tell me more about the "mild chelation therapy?" Thank you!
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#15 barilla

 
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Posted 09 March 2010 - 02:47 PM

I have one copy MTHFR and I also have Factor V Leiden, which is a blood clotting disorder. I only found this all out because I have had 3 miscarriages in a row. As soon as I get pregnant again I will have to go on Lovenox, baby asprin, and Extra folic acid, B6 and B12. I take the B vitamins now because my homocysteine levels were high, but a recent blood test indicates the level is now normal. But I still need to be on extra B vitamins for life. Also, coffee and black tea increases your homocysteine levels. I have eliminated coffee and black tea and now only drink herbal teas. I have one perfectly healthy girl who is now 4. I had her before I experienced any of my miscarriages. It took over a year to conceive my daughter… this was while I was eating gluten because I didn’t find out I was celiac until 4 months after I had my daughter. I’m not sure if there is a correlation with the MTHFR and celiac, but I definitely have both. I know that many people who have Factor V Leiden also have MTHFR. I’ve been talking with others on different pregnancy message boards and so many people swear by lovenox. Many have had multiple miscarriages and finally when they are on Lovenox they are able to carry the baby to term. There are many success baby stories with lovenox.
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