If I had a dollar for every time some “desperate for answers” soul has asked me, ” WHEN WILL I FEEL BETTER?  I’M A VIGILANT GLUTEN FREE EATER SO WHY DO I STIL FEEL AWFUL!”, I would be a very rich lady. It makes me so very very sad that I cannot give them a clear answer. And it’s not because I don’t want to give them an answer. I do my best to go through their daily diet to see where they may be getting hidden gluten and discuss the necessity of giving up dairy and other possible allergens as well, if they haven’t done so already.

Yet I know in my heart that even the most careful of celiacs sometimes, or for some ALL OF THE TIME, still feel BAD.

I know this because I’m one of those people.

It is said that a celiac eating a strict gluten free diet will lead to the villi around the small intestine to heal within 6 to 18 months and thus being able to absorb nutrients again and feel better.

REALLY?

cryingI have banged my head against the wall pondering over why this wasn’t true for me. My gut should be healed by now; its been 5/6 years since my diagnoses!!! I’ve pleaded, cried, begged and demanded for someone, ANYONE, please tell me WHY I’m still not feeling well.

I’m gluten, dairy, soy, corn, refined sugar, and egg free who eats only organic, eats mostly lean protein and vegetables and only eats my own baked items in moderation. I am aware of hidden gluten in such things like some (not all) toothpaste, carmel coloring and tea bags. My shampoo, lotions, face cream all gluten free and safe.  I even have my fiance on alert to what he has eaten before he tries to kiss me. An exhausting way to live but to feel well I WILL DO IT.

Yes I work my tail off and there is stress (stress being an absolute vampire to your immune system). Running the store front Bakery, the new 13,000sq facility, that is now shipping goodies all around the country, the constant advocacy that I am happy to do (daily FACEBOOK updates…join me there), planning a safe gluten free, dairy free, soy free wedding (a nightmare in and of itself that I will share in future posts) and the 24/7 endless, take no break, constant vigilance it takes to eat clean and stay safe in this less than understanding climate is not only absolutely exhausting but heart wrenching when at the end of the day you still feel just AWFUl!!!!

DEEP BREATH

My doctor and dear friend, Dr Patrick Fratellone, has told me of his own frustration with my health. He has tried everything with me, from liquid supplements and IV vitamin and minerals to Bee venom and acupuncture treatments. They all help for awhile but yet my blood work still comes back not so good.

WHY??????

The hair loss, my thyroid showing aggravation, the sallow skin, and the overall feeling of something being off. I actually could feel the lack of nutrients in my body and even wound up in the ER one evening from tremendous swelling in my neck and jaw?????? Leaving with yet another question mark and a prescription in hand for a non generic steroid (generic drugs usually contain filler which is most likely gluten derived) of which they had NONE in this NYC hospital.

FRIGHTENING!

One crazy bust afternoon I received a quick text from Dr Fratellone and said my latest blood work came back and I have a missing gene called MTRFR that could be an answer; it’s associated with chronic disease.  HUH I thought?  I first thought he was joking at first as I thought I had heard it all at this point.  Especially through all my research for answers. Not to mention those initials, MTRFR, reminded me of not so nice phrase – Mother Fu@$er. I though how appropriate I have a missing gene and its called Mother Fu@$er.

Makes sense (total sarcasm).

Of course I started researching immediately. Sure enough there it was, MTHFR.  Actually the full name is METHYLENETETRAHYRDOFOLATE REDUCTASE GENE OR ENZYME. Thats a mouthful. 

So what does this all mean? Basically – and these are broad strokes folks – it’s a mutation that prohibits the body from converting folate into usable methylfolate.  Which means that the body does not break down heavy metals and toxins, causing high levels of mercury and lead in your system. Your body also doesn’t break down folate vitamins properly, leading to increased risk of coronary heart disease and dementia. Glutathione (which is the body’s chief antioxident and detoxifier), is also poorly converted.

This all raises your risk for fatty liver disease, increased inflammation, increased free radical damage and produces less SAM-e, which leads to depression. Because of this mutation, there is an increased risk of cancers, stroke, IBS, and about 50 other wonderful things. This has been related to leukemia, vascular disease, depression, schizophrenia, down syndrome, miscarriages and even autism.

CRAZY HUH? And how come I’ve never heard of this before??

When I finally digested all this and realized I’ve had a missing link in my genes/enzyme SINCE BIRTH I thought, REALLY? NO one picked up on this?Moving on…

I finally got on the phone with my doctor so he could explain why this is so important for everyone, especially a celiac. He thought this could be the reason why my liver enzymes are constantly coming back high and my gut isn’t healing, therefore making me unable to properly absorb more nutrients.  He put me on a Methylated B12 and Methyl Folate vitamins immediately. I was an obedient patient, as always, and started the vitamins immediately hoping for results but expecting nothing.

At this exact time, my sister, another celiac, and two other celiac friends were also diagnosed with this gene deficiency as well. Coincidence? Maybe, I don’t know. Is there a link between celiac and this missing MTHFR?

The answer to that question? I’m sure it does as so many other conditions do. Can I be sure? No.  What I can be sure about is though is that within a week of taking these vitamins I noticed a difference, a BIG difference.  My skin suddenly seemed more alive and less sallow than in recent months. My hair didn’t look as dry and stopped falling out at the rate it had been. That weird numbness I had been having (defined as a severe vitamin deficiency) had suddenly disappeared and I felt more awake than I had in years.

BUT WILL THIS LAST??????

Fast forward to three months later…

I can absolutely say this has been a GAME CHANGER for me. Of course everyone is different but I can say out of the 4 celiacs (myself include) that were diagnosed and actually took the vitamin, 3 felt an improvement. Seriously folks this “missing link” maybe can change your life!!!!!!

I know us celiacs and others living with chronic disease understand all too well what it’s like to live in discomfort and even constant pain. It just becomes “the norm”, something we just come to accept and we move through life with…a 300lb weight attached to our backs everyday.  It may not have to be that way. This could be a huge factor in your health!

As I’ve said above, there is a lot to understand about this missing gene/enzyme, much more than I am ever equipped to explain. You must go to a doctor who not only understands this condition but is capable of treating it properly as well.  Believe me, it just might be worth another hopeful trip to the doctor.

I encourage you to Google MTHFR and read a listen to others dealing with their journey with this condition.  I can promise you they will sound all too familiar.

Be Well.

~ Jennifer

This Post Has 61 Comments

  1. Barbara

    Hi there,

    interesting. What could help as well is to go on a fodmap diet and see if one gets better. Our daughter (though not celiac, but “only” wheat- and lactoseintolerant and then some more….) suffers from IBS, only began to feel better after she also cut out all fodmap containing food for some time. She then introduced one after the other slowly back into her diet and now she knows more or less what else she cannot tolerate. She feels much better now!

  2. Sabrina

    Wow, this is my story exactly. It’s very reassuring to see it wasn’t all in my head! Within a week of taking the vitamins my eyebrows grew back and I had 100x more energy. Amazing huh?!? Thanks for sharing your story.

  3. Kara S

    Hmmmm that’s interesting! I may have to look into it. So glad it’s helping you. I could use some help right now too haha.

    Also, I totally thought you were writing Mother Fu@$er in the title of your post. I was like, um, really??? :)

  4. Michael

    Jennifer, I am in the same boat, going even further with diet and lifestyle and not doing as well as you, having dropped legumes and cruciferous and only nightshades that have been fermented . I have been listening to all the functional medicine type summit podcasts, and hearing about the MTHFR gene from Ben Lynch and others. I have decided that is probably my problem and am in the process of shopping for the safest methylated B12 and folate. Can you recommend a brand?

    1. Loretta M

      I know you were wondering what brand Jennifer’s doctor had put her on… but in the meantime I thought I’d let you know what my naturopath had prescribed to me a few months ago.

      I’ve been taking the AOR brand “BioFolate” which contains borh 5-Methyltetrahydrofolate (1 mg) AND Methylcobalomin B-12 (2.4 mcg) per capsule… and which says clearly on the label that AOR Guarantees that the product does NOT CONTAIN wheat, gluten, corn, nuts, peanuts, sesame seeds, sulphites, mustard, dairy, soy, eggs, fish, shellfish, or any animal byproducts. http://www.AOR.ca

      I’m allergic to many things, so I find it to be a comfort that it states the absence of the major allergens so specifically.

      Hope this helps.

  5. Annalise

    I share your story too Jennifer – my kids have it also and it has answered a lot of questions for me – your article made me laugh because we have been calling it the mother f*#ker gene in our family too! After much research and having always been passionate about natural health I decided to become certified as a health coach so I can help there who are dealing with this diagnosis – it’s a very complicated path we have to navigate to get it all right! Thanks for sharing : )

  6. Susan

    I read that you eat a “lean” diet and don’t eat eggs. I’m wondering why since the science behind “low-fat” is totally false. It was based on bad science and has been promoted for decades. I’m gluten free (celiac) but I eat free range, local eggs and local, grass fed beef. I also eat uncured bacon and cheese. I feel better than ever before. My bloodwork is excellent and I’m in my late 60′s.

    1. Gisele Lamarche

      I too function much better high fat –lots of ghee, organic lard & olive oil …but hopefully adding in these specific B’s will help also –as I have more food reactions every year!

  7. Gisele

    I can’t afford gene testing so on the advice of my ND/former boss/friend suggested I do an elimination challenge –so I removed ALL vitamins that contained folic acid from my regimen & then after 3 weeks – I took one folic acid tablet & in under an hour I had the most intense panic attack of my life ( I’ve never had them before -so at the time I actually thought I was dying!!) Very scary!! So I replaced all my b-vitamins with ones containing folate not folic & I too feel much better!! Kind of astounding how one nutrient can cause that much havoc!! I wonder if iodine is also implicated?( As I had a really funky reaction to one tablet of that as well!? tho as I said I can’t afford formal testing …GF/df for 15+ years…working single mom –still trying to heal & determined that eventually I WILL!! :-) gisele p.s. thank you for all your wonderful articles & information – I very much appreciate it :-) blessings!

    1. Sarah

      I had issues with iodine as well, and I believe it was due to selenium deficiency. I couldn’t even handle using iodized salt for just a few days! I was left with scary symptoms that sent me to the emergency room. However, I can take a multivitamin with 100% RDA of both iodine and selenium and feel fine. I can even add iodized salt on top of that without problems.

    2. Barbara

      If you can’t afford the genetic blood testing, there is a saliva test available at 23andme for $99. Still not inexpensive, but to have the answers… It tests for much more than MTHFR.

  8. Ed Stull

    I am excited at the prospects that await the folks afflicted by this debilitating affliction. Your blog and mission in life is an amazing story! So happy the Actor is employed again, in addition to the nurse/entrepreneur whose success is also notable! Of course, I cannot thank God ever enough for the answered prayers on all your behalfs…. You remain vigilant, showing that you were exactly the woman needed for this Holy Crusade…. Be happy and blessed on your upcoming wedding day, for you deserve it all! Those of us who have watched and prayed and come to appreciate your forbearance are so proud of you, and we will continue to support you in our daily meditations. You are loved by many! Ed

  9. suzy koerner

    Lactose intolerant since 1995. Dx in hosp for 3 days. Unbelievable pain/nausea. Just found GF, end of May 2014. Never heard anything bout GI or celiacs before. Early Sept a friend said, you have to read this book. I think you have celiacs disease. Wow! Jennifers Way. God Bless & God Speed. In process of bloid test, have broken thyroid all this year, way too high, way too low. Was dx w/thyroid in 1988. Thought it was going to stay under control! What a mess. Doc kept saying it’s not thyroid when i was freezing even in summer, exhausted. First do no harm!?!? Thank God for God! Thank u Jen & all people helping. True, people leave/abandon. A couple/few good ones stay. I just found this site and celiac foundation. Need all the help i can get. This year, what a disaster! Peace & Love

  10. joanne

    I just learned how important it is to NOT take folic acid (the synthetic version of folate)and why high levels of folic acid in blood work may point to a reason for many problems. We are told to take all these vitamins, but unless the person telling us knows the difference between folic acid and folate, and the fact that some people just plain can’t convert folic acid into what it needs to be converted into, we could be doing ourselves a lot more harm than good. I also was recently informed about the need to get a certain kind of vitamin D test, and if you take D3 supplementation (should never take D2), you should also be taking a vitamin K2 (not K1)along with it, as well as magnesium and, possibly vitamin A. Of course, all of these need to be taken under the supervision of a “knowledgeable” physician/naturopath/dietician, which can be very difficult to find. Thanks for the post. It has reminded me of something my somewhat less than sharp functioning brain had read about a few years back. MTHFR, indeed!! Hope this is the key that you needed to regain your health!

  11. Kari

    This is all very interesting. I would love to try the supplement you spoke about but I can’t seem to find one that is certified gf as well as corn free. (I have a corn allergy also.) Which brand are you using?

  12. robert

    While I am not discounting that people who have Celiac Disease may be deficient in certain vitamins because they have some gene… the issue is so much more complicated than a missing gene. Normally, people who have Celiac Disease don’t know it and they suffer for years with the disease while experiencing a whole host of symptoms. And over that period of suffering and time… they continue to eat foods containing gluten that can result in a worsening condition in their intestinal tract called, “Leaky Gut”. And when a “leaky gut goes undetected and unaddressed…….. it gets worse over time and then causes a variety of symptoms and conditions on its own. One of those conditions is the malabsorption of foods and vitamins in the intestines. This malabsorption then results in further deficiencies and / adverse symptoms even though the person finally changed his or her diet. And even when a person eliminates all gluten products for months… the symptoms can still persist if the gut is not healed. In fact, it can take a long time to heal a leaky gut (i.e. 6 months to a year) even when a person is properly diagnosed and is gluten-free for months. And when the Leaky Gut is not properly diagnosed or is left to heal on its own without supplements…. the conditional only worsens.

    They are a variety of products that can be used to resolve the symptoms and heal a “Leaky Gut”, but if a person cheats and has some gluten it negates any healing that could have taken place. One good healing supplement is from APEX ENTERGENTICS called, “Repairvite K-63″. This has 2500 mg of L-Glutamine which can greatly aid the healing process. And person also needs a good probiotic. If the gut has some infection, medications may even be required and or an arsenal of vitamins / supplements. This is where a good Holistic Doctor and / or Practitioner who performs muscle testing and nutrition can aid the person with Celiac Disease.

    Other factors in the gut could also be present that are not allowing the gut to heal and thereby resulting in adverse symptoms. For instance, a person could also have developed an overgrowth of bad bacteria in their intestinal tract (i.e. Candida) and / or could also have parasites. And a person who has “Leaky Gut” for awhile almost invariably develops other Autoimmune Diseases like Hashimoto’s Thyroiditis, etc. which further complicates the healing process. A person who has untreated Celiac Disease could also develop an imbalance with hormones, experience adrenal fatigue / exhaustion and / or have thyroid issues. While testing for Hashimoto’s Thyroiditis is relatively easy with the correct blood tests, the other conditions could be far more difficult to diagnose for the average allopathic doctor. As such, it is just not that simple to say a person continues to suffer with symptoms of Celiac Disease because they have some gene.

    Furthermore, a person who suffers from Celiac Disease may not simply be allergic to “Gluten” and gluten derivatives. They may also have CROSS SENSITIVITIES to other NON-GLUTEN products. I know what you are saying… I already can’t eat anything…. THERE COULD BE MORE FOOD RESTRICTIONS??? Unfortunately, the answer is YES. There is a company called, Cyrex Laboratories (http://www.cyrexlabs.com/CyrexTestsArrays) that performs Gluten-Associated Cross-Reactive Foods and Foods Sensitivity Tests. The tests that are most important for persons who have Celiac Disease or who are gluten intolerant are Assay 4 and Assay 5 tests. Once these tests are performed, a gluten sensitive or intolerant person can know the additional foods that are causing the body to respond to foods it believes are gluten. And when these additional foods are removed from the diet… a person’s BODY can then truly begin to heal by finding homeostasis.

    Celiac Disease and Gluten insensitivity is a huge field that is wholly unknown but beginning to effect more and more persons each day. Because there are relatively few persons working in this field and researching causes / effects of gluten, reactions of the body, a complete and extensive list of foods that each person can safely eat without reaction and tests to truly understand a patient’s condition…. it is left to the patient to find the answers. As such, it takes a lot of time, effort and energy. And with the list of GMO products growing each year…. it makes it even more difficult for people to know the answers. But my belief is ……. ALL DISEASE BEGINS IN THE GUT… and disease can proliferate in the gut with people who have Celiac Disease simply because they don’t know what they have and what to eat. And what is worse… ALLOPATHIC DOCTORS don’t know either. Listen to your own body. Then heal the gut… and find out about cross reactive foods. Don’t cheat… there are plenty of substitutes for gluten products and the list is growing every day. And if you follow this advise.. you will be well on your way to heal your body and feel better. Taking a few vitamins like Methylated B12 and Methyl Folate vitamins is not going to hurt you. But if your body is not absorbing foods and vitamins correctly… you will definitely be wasting your money and wondering WHY ME????????????????? Good luck and God Bless You. My prayer is that you find the answers and heal.

  13. Jennie Gall

    I have been gluten-free since 1988, a verrrry long time now. I then went on to eliminate refined sugar, dairy products, eggs, etc & went vegan. All of these things were miraculous for years. And I did pretty well, as did my kids who were raised free of gluten, refined sugar, yeast, milk, etc., & I can tell you that by the ages of 2 & 4 years old onward until teen years, THEY NEVER GOT SICK OR IRRITABLE. Before going gluten-free, they were irritable, whiney, crying, sinusitis, hurting in ways their age could not articulate.

    But then menopause, for me, hit 5 yrs ago. Everything changed again. And now I am back at Square One. My adrenals are exhausted. My thyroid is sluggish but no lab tests can pick up any abnormalities. Allergies have intensified again since moving to a big smoggy city in California. So therefore my immune system is enraged with literally everything & nothing & anything that I eat, breathe, smell, taste, touch (even the carpet bothers my skin!).

    So a year ago I tried 80% raw organic foods, with only 20% cooked foods for dinner so I could sleep thru the night without blood sugar crashes wakening me. I did well. Then summer hit & more smog & California’s drought. So I went 100% raw blended greens & vegies with limited fruits of special purposes, & I THRIVED ! I have never felt so good !

    Then I added Atlantic seaweed from Maine Coast Sea Vegetables (see their website)(Pacific seaweed is suspect after Fukushima nuclear accident for any seaweed & fish). I use their iodine capsules, two a day, & I FEEL AWESOME. I tried a liquid iodine but I just get nothing from it. I LOVE DULSE, KELP, hijiki, nori, etc. I crave them. And I digest them. And I feel FULL for the first time ever. Satisfied. Can anyone who has been gluten & allergen free for 26 years say they are SATISFIED with what they eat these days?

    I have since learned that I am retaining heavy metals in my tissues, which I knew, for when I added wheat grass & seaweed, it was known that metals would start to come free & be cleansed from the body. I am not done with this issue yet, but it is interesting that this new issue with folate versus folic acid gene seems to fit my own situation just this summer.

    So, kudos to you, Jennifer, for doing the research for us ! When I can ever afford health insurance, I will get tested for this. I do have a good naturopathic doctor who is helping me with these issues. I will take this to her.

    And, Jennifer, I have to say that those double chocolate chip cookies did not last an hour in my house ! I ATE THE WHOLE DAMN BAG IN LESS THAN AN HOUR ! Omigod, the best ever ! I have not tried the pancake mix yet. Hopefully this weekend. For I am now allergic or intolerance of eggs now (or maybe I just don’t have something to digest them anymore?), so I use soaked flax & chia with banana or dates to hold thin crepe pancakes together. It works. Although I do best when keeping ground flour products to a minimum, even gluten free.

    It seems that we “GO FREE OF” everything until there’s nothing left but water to “eat”, & even that is suspect now ! This is an immune issue.

    But my best success has been with naturopathic mucilaginous (slippery) herbs, iodine capsules from Maine Coast Sea Vegetables plus dulse, kelp, all seaweed & their yummy sesame kelp bars, & 100% raw organic foods. At 56, the less I “eat” the better.

    I pray your journey can be helped, especially if you have children whom I raised two healthy intelligent wonderful kids who thrive. As for menopause throwing me another stumbling stone…I’m still going herbal & iodine & seaweed for every vitamin, mineral, amino acid, phytonutrients, trace minerals, & easily digestible soaked, sprouted organic nuts & seeds.

    It’s a process. Let’s keep sharing. Cuz I’m 26 years into this & just got thrown a curveball with menopause. Now Jennifer tells us about this MTHFR…which I just love her honesty & sounds like cussing, for in this GF business, there can be a lot of cursing. So refreshing ! Keep it up, Jen, keep it up ! We’ll find a cure yet !

    P.S. Another issue is answered by the movie “LORENZO’S OIL”. Anyone seen it? It has some incredible points to consider for those of us with the same gene as autism, schizophrenia, down’s, etc.

    1. Gisele Lamarche

      I too got “kicked in the backside” by menopause –I had raised my kids SCD & had slowly just started some packaged but gluten free stuff back in diet –when whammo –menopause upped food reactions a ton — I am now low fodmap, no sugar, no yeast :-( eating has lost most of it’s joy … I wish was a meal replacement pill that I could take & never look inside a kitchen again!! … but back to protein & veggies it will be!

  14. Mitchw

    My personal experience is that gluten free foods aren’t good enough for me. Once I crossed over into eating the most minimally processed foods, exclusively, the world changed. No more tiredness, no more asthma, no more depression, no more fog, no more itching. How do I do it? Think, roasting my own coffee, certain brands of salt and whole peppercorns, only fresh spices, no milk or dairy except a sole brand(and only limited amounts), only certain whole chicken brands. I can go on, but it freaks people out to much. Here’s a freaky fact; when I asked Peter Green of Columbia U. how his patients were doing, he said 1/3 staid the same, 1/3 still got worse, and 1/3 got better(whatever this meant). Perhaps there are some Celiacs that simply need to be on a very very low gluten diet, beyond what FDA considers GF.

    You have my email, Ms. Esposito

  15. pdw

    This is too funny… no, not your journey, or the name of the gene or anything. And I have heard of it before, and knew there was a connection to Celiac disease, but not about the vitamin regimen.

    What is funny is that I was reading this article on my RSS feeder, in my “Celiac” category. And after reading through it, I thought: “I wonder if this would help Jennifer Esposito, whether she’s ever had this test…” Then I navigated to the article and saw whose blog it was on. LOL.

    So glad you have seen an improvement, and I really hope you continue to feel better. Off to look at the vitamins…

  16. suzy

    When i leave the ostomy wafer off i feel so much better but i need an alternative to the wafer and pouch. Please, somebody send me a gluten free brand, company name for a colostomy appliance. Begging here!

    1. Loretta M

      Check ostomy.org – they have a long list of distribution companies that may know the precise differences between the different types of wafers…

      I am also extremely sensitive to the components in medical appliances, so now, before changing appliances or undergoing a medical or dental procedure, the Dr. gives me samples of the choices of materials they could use on me, and I tape little pieces of them to my forearm using hypoallergenic “Hypafix” tape for 48 hours (if I can stand it that long.)

      I hope you find an alternate wafer – the ostomy.org site says there are many different types.

      Good luck!

  17. Nancy

    If you’d like to determine your status for this MTHFR gene/enzyme, get a personal genomics test done by 23andMe Ancestry or Family Tree DNA. You do not need a Dr to order the test but you will need one to create a health/lifestyle plan. More importantly, there are other genes that Genome wide research has associated with Celiac Disease. You can learn what your status on those genes are, by using the Livewello Application here: https://livewello.com/snps/library?action=preview&index=417820&for=demo
    This application is even more beneficial if you have received your raw data results from any of the companies above. This can help you and your Doctor explore how your status plays a huge part in your metabolic cycles.
    Personalized medicine is indeed the future of healthcare. Good for you Jennifer!!!
    https://livewello.com/genetics

  18. Tori

    Hi Jennifer,
    I do not struggle with gluten intolerance but having been a naturopath for quite some time, truly empathasize with you and emphatically applaud your mission. There’s an article I just read and think a spot light really needs to be put on the EVIL of Roundup and similar poisons. Keep being awesome and doing what you’re doing!!

    Why the Use of Glyphosate in Wheat Has Radically Increased Celiac Disease
    http://articles.mercola.com/sites/articles/archive/2014/09/14/glyphosate-celiac-disease-connection.aspx?e_cid=20140925Z1_WNL_art_1&utm_source=wklynl&utm_medium=email&utm_content=art1&utm_campaign=20140925Z1&et_cid=DM56490&et_rid=670060330

  19. joanne

    Thank you for posting the link to that article. It needs to be shared far and wide. I am in Oregon, and the pro GMO people are flooding our airwaves with lies. People with Celiac have to be so careful about what they eat, and more research should be done to find the cause of Celiac. The article speaks of one chemical, but it is probable that most chemicals used on foods are the cause of many health issues, including Celiac. GMO foods have been developed for extreme tolerance to no less than 9 other chemicals besides glyphosate. So please, eat Organic only and help pass labeling laws in Oregon this November. The campaign needs all the help it can get. Sorry this post is not on the subject of the MTHFR gene, but maybe the problem with genetic defects is 100% linked to our food supplies being so contaminated with chemicals.

  20. Ashley

    Thank you for this post. I have celiac and also have this gene mutation. This gives me even more reason to continue on my supplements (I was recommended the same ones by my Dr.). I get so weary sometimes. Your life story from your book is so similar to mine, I cried my way through it, and it is interesting about this gene as well. I too wonder if it contributes to celiac…

  21. Debi

    Hi Jennifer,
    I just finished reading your book. Thank you from the bottom of my heart. I haven’t been diagnosed with Celiac but I certainly have major issues with gluten, dairy and soy. Plus, I have severe multiple chemical sensitivities, environmental allergies, thyroid issues. So eating and going anywhere is really tough. Take heart. I get everything that you’re saying loud and clear. (You go girl) I think the hardest part is when your family and friends are not very understanding to what your going through or that they think YOU need to see a therapist. (I’m not saything any bad about them) It’s more like I can’t go to your house and hang out with you because you wear so much cologne that I can’t stand up straight. However, I’m the crazy one. Anyway, knowledge is power and thank you again for sharing your story and what you learned about getting a proper diagnois. Have a great day!

    1. Tiffany

      Hello Debi. I am just seeing your comment now on jennifersway.org. I, too, have multiple chemical sensitivities and didn’t know if you have had any luck with foods and easing your sensitivities or if you have found a good doctor?

  22. Christina

    Oh my GOSH! Thank you, thank you, thank you! I was diagnosed with MTHFR several years ago and having been taking methyfolate regularly. I felt better, but was still so TIRED. I read your blog and went out and purchased some methyl B12. I cannot describe what ONE WEEK of taking this supplement has done for me. Two days ago, I noticed my skin had changed. For the first time ever, I had color in my cheeks (I am usually EXTREMELY pale). This morning, I woke up WITHOUT an alarm. I wasn’t yawning all day at work. I have energy and it is almost 8 o’clock (UNHEARD OF!). This has changed my life. Thank you, thank you, thank you!

  23. Jo

    I too was diagnosed with the MTHFR genetic mutation. I took methyl B-12 and folate for many months. Suddenly, I began having neurological problems all over again. I kept telling doctors that I thought the B vitamins were actually making it worse. Everyone kept saying, no you need to take these. Finally, I went online and saw an article by Dr. Lynch, who said that the standard protocol for MTHFR was methyl B-12 and folate but he was finding more and more of his patients couldn’t tolerate the standard protocol. Bingo! I cried all over the place. When I finally insisted on someone testing my B vitamin levels, they were way too high. I found a new doctor who had been to Dr. Lynch’s special training on the mutation and have been seeing her ever since. She told me that me that there are two types of mythalation — either over or under. People who under trap the toxins. It was great to get some answers and be affirmed but after sixty days, I’m still having a lot of gut, adrenal and neurological issues. I am somewhat better but it is a very slow and frustrating process.

  24. Donna

    Thank you Jennifer for steering me in the right direction. I have been in chronic pain for three years…major back surgery for herniations at T11-12 and S1-2. I have since been through many medications causing severe reactions and then diagnosed with neuropathy, neurotoxicity, MS (not definitively), insomnia, mental fogging, memory problems, mood disorders, menstrual disorders, hair loss and most recent Celiac Disease.

    I have just received my lab work stating that I have the Heterozygous C677T Mutation. All I can say is Jennifer you are the reason why this will be a game changer for me as well. I look forward to starting to heal my pain…

    Thank you and God Bless!

  25. Justin Carr

    Jennifer, I’m so happy for you that you have found a breakthrough in treatment and are feeling much better. Thank you for sharing your experience as it can help many others, possibly including myself.
    I just brought this topic up with my rheumatologist but he doesn’t have a lab to test for this specific type of MTHFR but he ran the more common test which relates to blood clotting issues, which I don’t believe that I have. He was wondering which lab could run this test. If anyone knows of a major lab that does, please let me know. I’d prefer one that accepts insurance but anything would be helpful. Thanks in advance.

    1. Justin Carr

      So my results came back POSITIVE for the more commonly tested mutation of the MTHFR gene so it is likely now that I have both. I’m starting treatment immediately and should finally start feeling better after decades of illness.
      Thank you so much for bringing this topic up, Jennifer!!! I wish that I could repay you for this breakthrough. I guess ordering from your bakery would be a start. Thank you soooooooo much. I can’t wait to feel better..

      1. Donna

        I wish you luck in healing. I also am just starting treatment. What is your doctor prescribing you? Mine is putting me on L-MethylB6B12 (which is a combo of the Methylfolate and B12 plus P5P. Also gave me niacin to take in case I get over methylated to break the symptoms. He told me to start very slow and only take 1/2 of the 1mg of Methylfolate for the first week. I am so excited to have it be a game changer for me.

        Keep in touch!

  26. Marla

    Hi Jennifer,
    I just recently asked to be tested for the MTHFR after a lifetime of chronic inflammation, fatigue, migraines, extremely painful menstrual periods, depression, seizures, hypothyroidism, food sensitivities, diagnosed as mercury poisoned, Irritable Bowel, cystic acne, nerve damage, painful joints and sore muscles. The most recent symptoms happened as I entered Menopause with constant hot flashes and extreme nightly sweats. I read about the connection between B vitamin deficiency and hot flashes. THEN I read more about thge MTHFR and seemed to connect the “dots” all of a sudden.

    I asked my Dr. for the test and it cam back positive for the “677″ mutation. I just started with the methylated B vitamin therapy and what a change!! I feel like a different person. I have not had a single hot flash, night sweats are gone, many of my other symptoms are diminishing. I am told it takes a few weeks for the body to get better, but after only 1 or 2 days, I am already seeing VAST improvement.

    I am thrilled to find this out. Many Dr’s over the years have labeled me a hypochondriac, psychosomatic, etc. At the age of 8, I was so depressed and in so much pain, I told people I truly did not want to live. This was in the late 1960′s and the answer was to put me on Barbituates, Phenobarbital, severe mind-altering drugs and then lock me up in a mental ward for a year of me life. I have always sought help, but until now nothing was clear as to why these problems have persisted. NOW I KNOW!!! We need to do everything we can to get the Medical Community to wake UP!!!

  27. Rachael

    I was diagnosed with celiacs a couple years ago, I am very careful about it. I also have terribly low levels of all vitamins including b12. My dr put me on all vitamins and b12 shots. I started getting acne like breach outs. After five weeks I had to stop , the acne hurt so bad and didn’t heal,just got worse. So dr had me try every type and form of b12, same reaction with them all. I have two of the mthfr gene mutations, I am wondering if deplin will make me break out as well or if there is some connection in all this. Any thoughts?

    1. A

      Methylfolate and b12 gave me such horrific acne it destroyed my beautiful face. I had lovely skin, now I have a face full of cystic scarring. I’ve been a recluse for the past year and made 2 suicide attempts. The supplements were ok for a week or two then made me horrendously ill, sent me to ER twice. This is not a simple fix, it is in fact extremely complex and huge risk of side effects. One year later I am still physically suffering and cry every time I look on the mirror. Some ppl do well on these supplements, but they are too easily prescribed and they make some of us very ill. Drs should at least check homocysteine, b12, and folate before prescribing. I was like a lot of ppl here, thinking I had found the answer and excited to get better. Now I am utterly devastated and will never feel beautiful again.

  28. Nona Mills

    I had (C677T) genetic testing which indicated 2 genetic variants or polymorphism (MTHFR). I was placed on generic for Metanx. It didn’t work. Then, I started paying for my own Metanx because my insurance would not pay for it. I have all kinds of diagnoses which now include Non-Small Cell Lung Cancer. I am 57 years old, but I move and have the energy of a 95 year old. My joints are in bad shape. I have Hypothyroidism, Fibro, Asthma, IBS and Arthritus. I will ask for Celiac Testing next week. I had food allergy testing which didn’t show anything. I didn’t realize it is more than a wheat allergy. Thanks to you being on Fox News maybe I will finally get some relief. Thanks for the info on Celiac. Maybe it will help other members of my family too!

  29. Audrey

    I also have celiac and have been feeling awful. I was recently diagnosed with MTHFR after almost going into liver failure. While in the hospital and after I was referred to 4 specialists…you know who figured it out? My herbalist at a cost of $265…the amount charged to my insurance to find nothing….almost $18K. Amazing. I am continuing to feel better everyday…its a process. I have only been on the vitamin B 12 and other supplements for about 8 weeks – I am still improving but as of right now I can consistently say that I feel better most days than not. I wish you luck in your health and look forward to your posts.

  30. p.

    Hi Jennifer, Thank you for this post. I have gluten intolerance and a messed up gut, which hasn’t improved dramatically from gluten removal (although accidentally eating gluten definitely makes me sick, rash, diarrhea, etc) I recently learned I have two copies of the mthfr c677t. Taking methylfolate & methylcobalamin definitely helps my mood, seems to help with my gut as well. How are you doing these days? Can you tell us which supplement you take? I know you cannot endorse any particular supplement brand–maybe just tell us the ingredients without stating brand name? Thank you. Be well, and keep doing what you’re doing!

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  32. Anna Van Hoek

    My daughter who is now 10 was diagnosed with Celiac in Dec 2010 and has been gluten free since Jan 1, 2011. In March of 2015 due to other medical issues, we had a ton of blood work done and there it was “MTHFR 677 mutation”. I started researching it and started asking many celiac FB group admins if they can ask the group about anyone with celiac having this mutation. Of course none of them did but I also brought it up to the GI who thought it was very interesting and said he would definitely look into it. I was just sitting at my desk and decided to Google it and found this blog. The puzzle pieces are surely starting to come together.

  33. A

    I WOULD ADVISE CAUTION for anyone seeking MTHFR treatment. Deficiency of the MTHFR enzyme can be a real serious problem, but not everyone with MTFHR polymorphisms will actually develop a measurable deficiency. If your blood tests are normal, then you probably don’t require treatment. You risk overtreating, which can cause some serious side effects.

    It is important to have a doctor who will know which blood tests to order (folate, homocysteine, etc) and who will look closely at your individual blood tests. The main known issue with MTHFR problems is that it can cause folate deficiency, which leads to high homocysteine, which leads to cardiovascular problems. Low folate is also dangerous for neurological health/neural tube defects. Beyond these issues, the connections between MTHFR and other diseases are still being studied.

    If you have MTHFR polymorhpisms, and have demonstrable deficiencies and abnormal blood test results, then it is appropriate to supplement to the point of filling the deficiency. This needs to be done carefully, however, because not everyone will tolerate the same supplements, there is a risk of interaction, and a high risk of serious side effects if done inappropriately.

    The danger is that naturopaths have jumped on the bandwagon and are marketing MTHFR protocols for “detox”. Does anyone really think naturopaths are qualified to treat genetic issues? They make grand promises to treat diseases that have not yet been studied in the context of MTHFR. They encourage patients to believe the medical community is conspiring to keep this information from patients, but it’s really that the science simply isn’t ready yet. Naturopaths have a conflict of interest because they are selling a product. Ben Lynch, for example, sings the praises of methylfolate and methylcobalamin because that is what he sells. To him, cyanocobalamin and folic acid are poison. Yet many people (myself included) respond to these forms and have violent reactions to methyl Bs.

    I want to warn my fellow celiacs from the harm I suffered from MTHFR supplements. I am celiac. I went to an integrative medicine doctor before I had a celiac diagnosis. I was sick and had multiple deficiencies (including B12, which I was unaware of at the time). I tested homozygous for A1298C and she began me on a protocol of high doses of methylfolate and methylcobalamin, without checking folate and B12 levels first. My homocysteine was normal. The side effects of the supplements were horrendous. It triggered hypokalemia (low potassium) and caused my SIBO to worsen. Folate and B12 can actually feed SIBO bacteria, so go cautiously. The SIBO caused swelling, bloating, joint/muscle/skin pain, fatigue, confusion, irritability, and SEVERE, SEVERE CYSTIC ACNE. I now tolerate weekly cyanocobalamin muscle injections just fine, but tablets are a problem.

    Too much folate can also worsen an existing B12 deficiency. Since my underlying absorption problems weren’t fixed (because the naturopath didn’t know what she was doing), and the SIBO bacteria was poaching the B12 in the supplements, I was still deficient in B12. I developed neurological damage, cognitive decline, and psychiatric problems. It was harrowing. My Hashimoto’s worsened as well. I continued to be very sick for a year after stopping the protocol. This fueled my desperate search for medical care which resulted in my celiac diagnosis.

    Note that the worst of my side effects were a 3-4 months in. It’s possible to feel great for a while, then reach overdose and go quickly downhill.

    When I reported the bad side effects to the naturopath, she blamed it on “detox” and encouraged me to stick with the program and add more supplements to “open more pathways”. She lacked a fundamental understanding of what she was prescribing and the ways folate and B12 work in the body. She had a legitimate medical license, but was getting all the MTHFR stuff from the heavy marketing done by naturopaths like Amy Yasko and Ben Lynch, who make their money selling tests and supplements and speaking at naturopath gatherings. They have no accountability and do not need to distinguish fact from fiction. Lynch’s MTHFR.net and the Phoenix rising forums are full of people like me, suffering an unexpected roller coaster of side effect from MTHFR protocols and wondering what the heck is going on. This stuff is serious in the wrong hands.

    I am not saying that no one should ever take methylfolate or methylcobalamin. Some people truly do need it, and will respond well to it. Those needs and responses can be measured via lab tests. I am only saying to beware of the fad misinformation that is being spread about MTHFR on the blogosphere. The link between genetics and disease is extremely complex. Beware of easy fixes or promises.

    The best source for an MTHFR overview for the layperson is https://www.sciencebasedmedicine.org/dubious-mthfr-genetic-mutation-testing/

    1. Lori

      When I first started methylfolate, methyl B12 , P5P B6, B2, and NAC. I had a violent reaction. I felt anxious, high blood pressure, severe chest pain, shoulder blade pain and right arm pain. I thought I had a stroke or heart attack. I started with too high of a dose. I went to doctors for EKG, blood work and Echocardiogram. Everything was ok. My cells released a lot of toxins. I have both 677 and 1298 gene. I have both celiac genes. I have been off gluten, dairy and soy for five years. I have hashimotos which is in remission. I continue with B vitamins in much smaller doses. I started sleeping deeper. My brain fog and chronic fatigue went away. I did more research and now also take TMG, Curcumin, krill oil, selenium, drink coconut water for potassium and eat Himalayan salt full on minerals. I feel great. I have one new thing my DH celiac rash is back but I am ok with that because I feel mentally and physically better. Even my IBS is better. There is a light at the end of the tunnel. I thought I was going to have to go on disability or was getting Alzheimers. So don’t give up. I am up to 2 mg of methylfolate a day. I will continue to increase it.

    2. Loretta

      Your detailed comment has really helped me to understand some of the symptoms/problems I’ve been having: I’d never heard of SIBO before and the symptoms seem awfully familiar. I will look into it more. My physiatrist specialist really dumped on me for taking “folate” – but he didn’t know there was a difference between synthetic folic acid and the methylfolate/methlycobalamin I am taking. My family doc injects me wirh 1 g of B-12 every 2 weeks, which has really helped some of my symptoms, but I am going to check into the balance between the two that you mentioned. My naturopath is one of the properly trained naturopaths who doesn’t ever jump on bandwagons, so I am lucky in that at least. I wish it wasn’t so difficult to coordinate between the different specialties… thanks for giving me some other avenues to investigate.

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