An Introduction to My Personal Story
& to the World of Gluten-related Disorders:
When a friend really isn’t a friend at all, but instead turns out to be a foe… it usually becomes very obvious, at least to those who care about us. Because as the signs & symptoms of inflicted harm come to light, the foe becomes exposed… usually, that is… but not always.
There are times when it can be very challenging to discover the true cause of trouble… especially when the relationship being dealt with proves to be highly complex & far-reaching… which is how it came to be in my own situation [“relationship”] with gluten*! …harm unrecognized far too long because the connection between my various ailments and to having a gluten-related disorder was not obvious [not typical].
Plus, it was very reasonable for me to accept other legitimate explanations for the various progressive issues plaguing me.
So, in all honesty, I never believed that banning gluten from my own life would make any difference for me in any way,
for any number of my symptoms…
But there was one symptom on my list (namely fatigue) that I had been trying to improve relentlessly with various diet interventions—to no avail! …Fatigue kept coming to knock ever more; with “brain fog” cropping up to strike as well. So my frustration grew along with it, which is what ultimately led me that summer’s day (8/8) to consider trying yet another dietary tactic. And since I didn’t ever expect to find an actual “dysfunctional relationship” [gluten-sensitive disorder], I simply felt it wouldn’t hurt to go gluten-free for a few days as a trial, mostly out of curiosity.
Though [please realize] I absolutely do not recommend doing what I did… because any/all suspected gluten-related disorders should first be properly investigated and diagnosed [ruled-in/ruled-out] prior to going gluten-free, for a number of good reasons…
Not doing so in my case has truly complicated things for me in my “break-up” with gluten! But since I didn’t think I needed to be gluten-free, I went ahead and broke protocol & simply decided to give life without gluten a sudden whirl, starting August 8th; unfortunately without first ruling out Celiac (an autoimmune disease) which needs to be done while gluten is still present (within diet, that is)… So let’s just say I was a.) SHOCKED and b.) THRILLED to very quickly see I was wrong… I did need to be freed from gluten after-all!
Because, not only was I not hit by brain fog, ALL MY OTHER SYMPTOMS either improved or disappeared! And then, 1 month later after my break-up, when I once again encountered my old friend gluten accidentally at a wedding [so hard to avoid there!]… the pain surely returned, relating to another one of my symptoms, but now more intensely(much!) and lasting nearly a week.
So you may then wonder… How didn’t my doctors seem to notice any such “red flags” for me, especially these past 12 months when I had visited a few times with various complaints [which even led me to getting MRI + other testings]? …Isn’t there a clear, well-defined picture (clinically speaking) of this potential “foe” who is able to harm certain susceptible individuals? …No, and no—because so much of the information on all of this is still rather new & emerging [with LOTS yet to be discovered/understood]; therefore, the picture (recognition) of its “face” is expected to improve , as is understanding & awareness, so that more & more doctors will then know what to look for, and how to address it more effectively.
Still, it remains complicated because the “face” [the clinical manifestations] of an actual gluten-related disorder, i.e. celiac disease versus other non-celiac gluten sensitivity, is finally being labeled a clinical “chameleon” [thanks particularly to the expert research of Dr. Alessio Fasano]… MANY signs & symptoms, which can also be associated with other types of disease/disorders [unrelated to gluten], that is, these “signs” are not unique to gluten disorder(s) only… So it really isn’t practical nor wise (and even potentially dangerous at times) to simply blame gluten for any/all of symptoms without having proper medical work-up [Note: In addition to other possible etiologies, a food intolerance/allergy (e.g. wheat allergy) or FODMAP issue could also be to blame for such various things instead]. However, it is important to realize that gluten disorders can/do affect much more than the gastrointestinal tract; going well beyond the gut; encompassing a very broad spectrum as well…
Able to affect any/all bodily systems, tissues & organs… from head (even hair) to foot!!
“Immune cells armed by the exposure to gluten can leave the intestine and target specific organs or areas, such as the brain or the joints, which leads to local inflammation. This mechanism can create conditions that explain the almost bewildering array of clinical symptoms caused by gluten in genetically predisposed people.”–Dr. A. Fasano [founder of Center for Celiac Research]
Truly, from head to foot—and everywhere in between! …which may be indicated within the presence of:
… chronic diarrhea ∼ chronic constipation ∼ abdominal bloating ∼ abdominal discomfort/pain ∼ lactose intolerance ∼ unintentional weight loss ∼ recurrent nausea &/or vomiting ∼ skin rash/dermatitis ∼ mouth sores/angular cheilitis ∼ fatigue ∼ brain fog ∼ depressed mood ∼ anxiety ∼ migraine headaches ∼ joint pain ∼ muscular pain ∼ tingling in extremities ∼ loss of balance/coordination ∼ hair loss ∼ hearing loss ∼ dental enamel loss &/or discoloration ∼ unexplained osteoporosis ∼ infertility ∼ miscarriages ∼ unexplained high liver-function enzymes ∼ unexplained vitamin/mineral deficiencies (e.g. low vitamin D; calcium) &/or anemia (low iron, B-12, or folic acid)… and even more! A “big picture” view surely required.
Yet it remains especially important to not jump to conclusions & simply assume gluten is to blame for each/all of these issues when they arise/exist—because it may not be, and we wouldn’t want another vital aspect to our health to go unaddressed or disregarded over time.
And then, even if gluten does turn out to be at fault at certain times, much more still needs to be taken into consideration, particularly in relation to knowing which type of sensitivity one has… Because the particular way a gluten-free diet must be implemented, and the long-term consequences, can be extremely different depending on which gluten-related disorder is involved.
“We know that in celiac disease there is a genetic component… [and] that a mistake in the diet can not only have immediate consequences, but… cumulative problems… And most important, we know that celiac disease will never go away. Conversely, we don’t know if gluten sensitivity [non-celiac] has a genetic component… [and it actually] may have different thresholds of gluten reaction; [which, unlike celiac] these conditions can change in the same person over time… [plus, in regard for non-celiac sensitivity] we don’t know whether there are long-term consequences.” –Dr. A. Fasano [Gluten Freedom, 2014, p.37; founder of Center for Celiac Research]
…Hence why simply assuming & self-diagnosing/self-treating can further complicate things, especially over time. Therefore, pursuing a proper medical investigation into such signs/symptoms is certainly + strongly recommended.
Phew… for an “introduction to my personal story & to the world of gluten-related disorders”, there’s surely is a lot to chew on in this post! So before you start feeling far too filled up with it all, let us conclude for now and return for more another time!
*By the way, about this friend/foe named “GLUTEN“: this is the name of associated related proteins [unique cereal prolamins] found in wheat (as gliadin), barley (as hordein), and rye (as secalin), resistant to gastrointestinal break-down. The forms of wheat (and therefore gluten) include: spelt, kamut, faro, durum, bulgur, and semolina; plus triticale–a hybrid of wheat and rye. Gluten is a common ingredient within many processed and restaurant food items.
Note: Avenin in oats is a slightly different protein so therefore usually tolerated for majority with gluten sensitivities (though only in a limited amount); yet since oats are cross-contaminated with wheat during processing, only those oats clearly & appropriately labeled “gluten-free” are recommended for use within gluten-free diet plan. [PS: Personally, I have chosen to also say farewell to my daily bowl of hot oatmeal–even the gluten-[gliadin] free ones which I still do accept, though, in a lesser amount as an ingredient within other gluten-free products. ] …
[8/8/2014, an unexpected wave goodbye to gluten for me that day, my friend-made-foe]
Please stayed tuned for more to come!
©2014.–The Way to Nourish for Life. Note: For caveat, please see “About“. [Image Sources: Wheat pic from WikimediaCommons ; Angel/devil Google clipart source unknown.]
The Way to Nourish for Life! 