Recently, I had some blood-work drawn to determine if I had the auto-immune disease Celiac Sprue. Those labs came back with a negative Celiac panel. However, it doesn’t mean that I am not a Celiac. It means I was negative at the time of the test for certain antibodies.
The lab tests did reveal that I am deficient in a variety of essential nutrients. Which points to a mal-absorption issue with the most likely cause being Celiac. The doctor also reviewed my past labs and found that I have been deficient for some time in a variety of nutrients.
There is one test that could give me a definite diagnosis – a endoscopic upper GI biopsy. I opted (at this time) to not undergo this test. Partly because the test is a tad expensive but also because I would have to continue to eat foods containing gluten for another two months* in order to undo all the healing that occurred while I was eating gluten free for the past year (previous to my self-induced torture of ten weeks of consuming gluten – six weeks prior to the blood-work and four while I waited to consult with the doctor) .
I chose to be satisfied with the diagnosis:
“Gluten intolerant with a chance of Celiac.”
Okay, so that isn’t what the doctor said exactly. I do have a firm diagnosis of Gluten Intolerant but Celiac was neither ruled out or confirmed. The technical diagnosis is non-celiac gluten intolerant or (NCGI).
I may never know if I am a true Celiac but with the severity of my symptoms and the established evidence of mal-absorption, I will be living like I was diagnosed with full-blown Celiac. This is a decision my doctor fully supports. She put it is as such, “With the severity of your symptoms you should consider no amount of gluten ‘safe’.” She even did air-quotes.
The option to keep making myself sick in order to get a diagnosis just seems unwise, especially when I already know how to feel better.
*Also to re-run the Celiac Panel.
What does that mean in my daily life?
It means that my environment needs to be 100% gluten free. It requires me to be paranoid not only about my food, but with how my food is prepared. It means I will become that person in the restaurant asking a million questions about how the food is prepared and what ingredients are in it. It means I have to buy gluten-free cosmetics and lotion and sunscreen. It means I have to wash my hands if I touch anything that contains gluten. It means Steve has to wash his hands and face if he eats gluten before he touches me.
What happens if I consume gluten?
Gluten intolerance isn’t an allergy that triggers a histamine response. I won’t have an obvious and dramatic reaction to gluten as someone with say a peanut allergy does. I will not swell up or break-out in hives but the reaction is just as real. It is something I feel immediately, like a wave of fire passing over my brain – you will not be able to see it. If you don’t know my situation you probably will have no idea it is even happening.
Gluten intolerance and Celaic produce an autoimmune response. It is the same-system ones’ body uses to attack a virus to kill the evil illness causing invaders except that for some reason a NCGI or Celiacs’ autoimmune system will also begin to attack healthy tissue. My body essentially will begin to start attacking itself from within. Within a short amount of time I will start to get a headache. It will take about a week (maybe two) before my body completely ceases antibody production – so my body will continue to damage itself for well after ingesting gluten. For a week I might have a myriad of symptoms ranging from forgetfulness and mood swings to every. single. stomach. issue. known. to. humankind as my body rights itself.
The jargon term for the accidental consumption of gluten is “glutened”.
Here is a compilation of possible symptoms Celiacs (and NCGI) people have:
Of the above symptoms I have in the past two years experienced over 40 of them with varying severity. In the “Behavioral” category I have experienced 12 out of the 14.
Why am I practically writing a dissertation on the subject?
Because gluten is in more than just bread and pasta. It is in cosmetics and lotion and over-the-counter meds, like generic Tylenol, and is in soy sauce and a number of bbq sauces and in Play-doh and sometimes it feels like it is hiding everywhere just waiting to rear its ugly head. Even microscopic amounts of gluten can set off a reaction. In other words gluten-free toast toasted in a toaster which normally toasts regular toast will also toast my brain. *evil grin at my own tongue twister cleverness*
Basically, cross-contamination is and will be a huge issue. I might seem like I am just being overly picky, or demanding, or being a diva. I am not…the disease is just a p.i.t.a. (translation for those not up with the lingo: pain.in.the.arse) (side note: waaah “pitas” – something else I can’t eat)
My tortillas can’t touch flour tortillas or any surface in which a flour tortilla has ever resided…and my bread cannot be toasted in your toaster but will have to have its own little pan (which I will most often bring along).
I don’t expect anyone to re-order their lives for li’l ole’ me (unless your initials happen to spell E.G.G.) like in situations where I might, oh, come to stay at your house for a few days while road-tripping through Texas…or even when I visit for a potluck, picnic or bbq. I will bring my own munchies and/or cook for myself (or everyone if you desire/just want a break from cooking/want to try my food because it is so freakin’ awesome).
Just keep in mind that if I wipe your counters down it isn’t because I think you are a lousy housekeeper; it just my being paranoid about the evil microscopic gluten particles that might still be inadvertently lurking about.
I am also certain your sesame-chicken really is the bee’s-knees but will have to decline because of the wheat containing soy-sauce. I will decline seemingly normal and safe foods – like bacon… regular bacon isn’t gluten free…neither is sausage…or lunchmeat…or the majority of processed foods.
More on the lengths one has to go to to prevent cross-contamination here in this wonderfully concise blog post from Accustomed Chaos.
What can I eat?
I will continue to enjoy the vast majority of the foods that I love such as meat and veggies and fruit and grains like rice and quinoa and eggs and dairy. I enjoy a variety of rice and quinoa pasta products that are very reasonably priced. They also make a whole bunch of gluten free junk food – cookies, brownies, chocolate covered pretzels, etc. There are even gluten free ice cream cones now. They all cost about $100 a box, just kidding, but they are all a bit pricey. In perspective that is a good thing; it means that cookies and such will solidly resume their place in life as an every once in a while treat.
Please, please, please don’t be disheartened if I ever turn your gluten free goodies down.
The gluten free label doesn’t necessarily mean they are gluten free enough. I have to trust the brand and please know I have done a large amount of research on the subject – partly through trial and error. More on how some “gluten-free labeled” foods aren’t gluten free enough can be found here.
I don’t want to discourage anyone from trying and will be sincerely touched and feel loved and understood when anyone makes any effort on my behalf. Understand any refusal will be based my own experiences, research and possibly even paranoia.
Chocolate? This is one of those areas I will have to be careful with. I can no longer have Reese’s Peanut Butter Cups…or Snickers…or 3 Musketeers…or any commercially manufactured in mass, candy bar. I can eat chocolate; it just has to be gluten free…and there are plenty of high quality chocolatiers that make safe chocolates.
Beer? A point of some debate in the gluten free world…yes some beer is gluten free all on its own…some is not. I will pass on it if offered – even if it is labeled as gluten free largely because I still have a reaction to it.
Tequilla, Rum, Whiskey, Vodka, Wine? Most liquor is a-okay. Woohoo! I will forgo them though as I heal and like everything else it will be trial and error to find the right fit.
Corn tortillas and chips are also okay…but once I get all the gluten out of my diet, there is also a huge likelihood that I am going to jump firmly on the non-GMO bandwagon. Food dyes, they are also on the hot seat. I will save those soap-box rants for another day, however.
And about that bacon…thankfully there are gluten free options on the market. Hallelujah, all is not lost! It too is pricey at about $7/half pound(ish). It does go on sale though and I will be greedily stocking my freezer full…because, well, it is bacon.
Note: This post was part of a facebook note and email I wrote to family and friends as a way of giving a heads up to everyone as to the the what and why of my decision to officially go completely gluten-free. I decided to share here as well because I have had so many “I eat gluten-free” related misunderstandings like “it is a fad” or “a little bit won’t hurt you” or “you used to eat it without any problems.” Guaranteed someone you know is dealing with this or some other disease that on the surface seems odd and when one has a health issue of any kind it is always nice if others approach with patience, understanding and hopefully empathy. Celiac and gluten intolerance is a disease that much like diabetes requires a complete overhaul of one’s diet but substantially differs from Type-2 diabetes in that there are no medications to take to fix it and it cannot be cured, reversed or exercised away…it is forever.