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?
I 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.
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!
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.
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???
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?
So happy for you, Jennifer. I am going to check into this further for myself. Thanks for sharing this personal triumph in your life. Prayers for continued wellness.
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 : )
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.
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!
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.
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
Is this the same gene that the university of Chicago celiac disease center has identified?
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
Almost forgot, think my colostomy wafer has gluten. Called Coloplast last week, called w/reminder msg this week. Still no call back.
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!
Thank you for sharing this information. I hadn’t heard of it. I am happy you are feeling better. I wish I could find a Dr. who knows about this.
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?
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.
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.
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
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…
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!