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.
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!!!!
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.
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.
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.