The Full Story

More and more people have been asking me health related questions lately: either questions about my history with food intolerance or Coeliac disease, questions about the symptoms I experienced and the tests I underwent; questions about the GAPS diet which I’ve been following for nearly 2 months now, its rationale and its actual impact on my condition. Most of the time, these questions seem to arise from people who are suffering “unclassified” yet consuming symptoms, and don’t know to whom to turn anymore, what doctor they should see, or what tests they should do. They simply want to know what could be causing their problem, and do something about it. But this quickly turns out to be an arduous quest, in some cases, a real Sisyphean endeavour.

I feel that these people are becoming more numerous. More and more often, I hear someone complaining about their health: be it gastrointestinal problems, weight issues, skin conditions, sensitivity of sorts, unusual fatigue, migraines, recurrent illness, depression… The list is long, and includes complaints so common that most people relate to at least one.

The problem is that most of the time, symptoms lie in between conventional medical “specialties”, which either fail to track down the root of the problem (misdiagnosis) or to address it in an effective and sustainable way (mismanagement). And when people still feel unwell, they have to reach out for answers on their own, perchance reach out to each other to bridge the gaps left by poor awareness, limited resources and medical (mal-)practice. It is understandable, even the best doctors can be, at times, perplexed by some of their patients’ cases. The only way to prevent this is to raise enough awareness amongst people, so they’re able to acknowledge their symptoms, understand medical reports and recommendations in order to establish a healthy proactive relationship with their doctor.

When I was myself puzzling out my growing number of symptoms, it felt as if I was running into one dead-end after another. In the maze of medical custom, I had the joy to deal with humane and understanding doctors, but also faced the most offhand and conceited ones (the kind that openly understates your condition, yet makes a very profitable business out of it). I also ran across know-it-all practitioners who threw at me recommendations so erroneous I even wondered if they were joking (“Nah, don’t worry about traces of wheat in your food, it’s no problem for coeliacs. But don’t you eat buckwheat and millet because they contain gluten.” REALLY??!?).

So anyway, in the end, I was able to put the pieces of the puzzle together by myself. Turned out to be a much larger puzzle than I thought; no wonder why specialized MDs have a hard time seeing the bigger picture: they are limited by the blinders of their own specialty and tend to forget that the human body is, after all, one entity…

I will narrate, in this post, the full version of my case with gluten, but you will quickly realize that it doesn’t just stop there: this mucho controverted protein is seldom the only problem…
You will find in this post a detailed record of my symptoms and diagnosis, and I will try to walk you through the detective work that I undertook in that respect.

If you’re looking for testimonials or information about intolerance to dairy, Coeliac disease, leaky gut and gut dysbiosis, this reading will hopefully be of interest to you.
If you’re just curious about these matters, I hope this lengthy post will at the very least be an eye-opener, so you stop taking your health for granted.
If you’re a fan of Dr. House, there is a good chance that you will enjoy this read, even if you don’t care much for the topic!

Chapter 1: The Onset

When I first realized something was wrong, it was almost a year and a half after my daughter Karma was born. So far, things were seemingly all right: I had spent an amazing pregnancy, delivery was relatively ok (except that we had to go for an unplanned C-section because the umbilical cord was wrapped around the baby’s abdomen), and recovery was flawless. I quickly resumed my activities, and took on swimming on a daily basis. I was energetic almost round the clock, and enjoying motherhood to a great extent.

During the full year while I was breastfeeding, I was on oral contraceptives (progesterone mini-pills that do not interfere with lactation), and the lack of period was a normal occurrence. But when the amenorrhea (absence of menses) remained up to 5 months after I weaned off Karma, I decided to stop the mini-pill and go back to the regular one I used to take years ago. When, I made the switch, the periods soon reappeared, accompanied by several kilos of extra weight, a general sensation of bloating, and a hint of blues. I changed contraceptives again, trying a lighter dosage pill considered to have very little side effects, but to no avail: mood was still off, and I felt like a balloon. So I decided to drop the whole affair, and simply discontinue oral contraception, with the hope that things would revert to their normal state. And that never happened.

Chapter 2: The Plot Thickens

I waited a month or two but my body did not want to readjust; something was going on. I didn’t feel quite well in general, and was starting to feel seriously stifled by the bloating, which was always worse in the evening. I was eating relatively healthy, and was training in capoeira and swimming consistently – all of which usually helped me recover or maintain sound health and weight. I decided to see a specialized dietician, who performs non-invasive bio-resonance tests, to detect a possible food intolerance I was unaware of, that could cause these problems. In addition, I was set to shed the extra weight I had put on during the whole pill switch, so a weight-loss program was also highly welcome.
The test showed that I was intolerant to cow milk, veal (since it feeds on cow milk), honey and some sort of shellfish with an un-memorizable name. I had veal only once in my life, and never ever had a taste of that mysterious shellfish; I don’t know how one can test “positive” for foodstuff they never had… but looking at the bright side, it meant that I would have absolutely no problem eliminating those 2 items from my diet! On the other hand, I was a big cheese and ice cream eater, and relied mainly on honey in baking and to sweeten herbal teas.

The first month I stopped cow milk products and honey, I felt somehow worse: my abdomen bloated as soon as I drank my first cup of water in the morning, and I suffered extreme hunger episodes and a crushing fatigue, that could have very well been the effects of the low-calorie diet I had started to follow. Yet, I wanted to be on the safe side, so I discussed the situation with my family doctor and we decided to run few tests (blood, urine and stool).

The blood test showed nothing my doctor found significant. Nevertheless, I couldn’t help but notice an elevated level of lymphocytes (which could signal an infection or a chronic inflammation), some irregularities in the biochemistry section (low triglycerides, high cholesterol, low HDL, and high LDL) which my doctor said we would address in due time. Since there is a history of thyroid disorders in the family, I also ran an endocrinology test to check the thyroid activity, and it showed normal results. Otherwise, both the urinalysis and the parasitology stool test came back normal. Still, since some parasites don’t show in standard stool tests, my doctor suggested an antibiotic blitz, hoping to see the bloating reduced.
I was a bit puzzled by the blood test results, especially the lipid panel figures (we ARE conditioned to fear the word “cholesterol”, aren’t we?). My diet was, objectively, extremely poor with fats: I never ate fried foods, used only minimal amounts of vegetable oil for cooking, and a drizzle of olive oil in my salads, bought almost systematically “low-fat” products when the alternative presented itself, and avoided anything that contains trans and saturated fats. Also, while looking into dairy substitutes, I had started to consume more and more nuts (which supposedly help maintain healthy cholesterol levels) in the form of nut milks and cheeses. I honestly couldn’t see where I got that cholesterol level from… It is only later on that I came to understand that cholesterol is produced by our own body, and is not, as most of us think, the direct result of a “cholesterol rich diet”. It’s often our body’s natural response to an ongoing inflammation, and it has been proven that its level is disturbed by contraceptive pills (known to affect the liver functions) as well as a diet of processed foods, sugar, refined grains, unsaturated fats… in short, all that gives our modern diet its wicked je-ne-sais-quoi!

The dietician assured me, when I reported my symptoms, that what I was suffering from was a normal drawback of detoxification (my body would be releasing the toxins it had stocked when it was exposed to the offending foodstuff).

A month into low-calorie diet and “detox” (no cow milk, honey, etc…), the prognosis started to look more joyful: I reached (or should I say exceeded) my weight loss goal, and suffered no more bloating. My period, for some reason, had stopped showing up (dietician supposed it would be the result of rapid weight loss, even though 4 kg in one month are not that drastic). Anyhow, that did not hinder my elation during the two months of summer. Until things started to get gloomy again with the advent of fall.

Chapter 3: The Grand Huit!

That’s when it started to go down the drain real bad. Within a month, I saw my health slumping again, with an array of symptoms that started to seriously worry me:
– Massive hair loss: that put postpartum hair loss to shame.
– Extreme fatigue: it started with low energy and general laziness. My endurance during physical activity was noticeably decreasing, and I was going out of breath quickly. After a while, I couldn’t get myself to go to my (most valued) capoeira classes anymore, and I reached a point where I felt I was constantly burdened with another 200 kilos, I could barely move around.
– Decreased muscle tone and coordination: I observed that, while training in capoeira, my muscles were getting weaker, as if they couldn’t bear much effort anymore. I hit limits in stretching, and an increasing number of moves became painful. Also, my movements started to feel less coordinated and flowing. I had to put a great deal of concentration to learn new sequences, as if I couldn’t register movements in what I call “physical memory”, on which my body usually relied to integrate new moves. In medical jargon, this condition is referred to as ataxia. I have stopped capoeira since november, and that’s what I miss the most in my life.
Flabbiness: fine, I really like my breasts small, but isn’t thirty a bit early for them to be saggy??! Not just my breasts, my whole bust and shoulders seemed to have “shrunk” and lost heir firmness. I was certainly happy to have retrieved my ideal weight, but there was something about my morphology that wasn’t the same, that wasn’t me anymore.
Geographical tongue: I had noticed this strange pattern on my tongue a while back. It is a benign condition, characterized by a map-like appearance on the upper surface and sides of the tongue, that may indicate a problem in the digestive system.
Bloating and flatulence: I have been pregnant in my life, and I know what it means to have a balloon-like appendix in the middle of your body, but believe me, it is nothing compared to abdominal bloating. Without exaggeration, my belly reached the size it had in my 6th month of pregnancy, and felt as if I had hippopotamuses triplets when it came to compaction. It made sitting uncomfortable, breathing difficult, and clipping my toenails almost impossible. To say nothing of the flatulence nightmare, which may have been fair grounds for divorce!!!
Body pains: what started as heavy legs soon became shooting pains in the most common of daily moves: whenever I flexed, carried Karma, walked on the street (or from one room to another)… At the end, it evolved into constant pain in all my lower body, even when not in motion; in addition to the back pain caused by months of abdominal distention, which my very dear osteopath was able to relieve a bit.
– Amenorrhea: it lasted, all in all, for another 5 months, during which I had a check-up at my ob-gyn (including ultrasound and hormonal blood tests for TSH, prolactin and FSH) all of which provided no explanation for the absence of period.
Intermittent itching episodes: which had been recurrent in a sporadic way for over a year. There was absolutely no sign of irritation, rash, secretion,… nothing but that excruciating itching. Doctors said that what causes pruritus is often unknown, and that people learn to live with it. I was prescribed a corticoid cream that would help relieve the itch (which I was uncomfortable using, so I didn’t do it consistently).
Peripheral neuropathy: that’s when your extremities start tingling, then going completely numb. It could happen any time of the day, for a few minutes or up to an hour or two. I found it wise to take it easy on swimming, especially on cold winter days. I was afraid that the numbness was caused by some vascular problem; and you do hear lot of stories about people drowning because “they had a sudden cramp and no one was there to save them” (the beaches are not exactly crowded in winter, are they?).
Brain fog: that would manifest in an impossibility to concentrate, faltering short-term memory and a general mental laziness that made the mere thinking about my condition hard enough.

With all those growing symptoms, it became imperative that I sought medical attention.

I raised the likelihood of newly emerged intolerances to the dietician whom I was still seeing on a monthly basis, but she judged the hypothesis to be very improbable. She also, finally, dropped the theory of rapid weight loss as the cause of lack of menstruation and prompted me to consult with my ob-gyn.
The ob-gyn, after running all the exams I mentioned above, concluded that the body sometimes “takes a break” for reasons that are beyond our comprehension. Since the tests showed nothing, there was no reason to worry yet, and it was too early to take any action.

I decided to see a gastroenterologist. My first visit was wrapped up by a pat on my shoulder and a faux-empathetic “Go home, you’re very pretty and look wonderful. There’s nothing wrong with you”. WTF.
He suggested, without much conviction, that we take the investigation step by step, and the procedure sounded reasonable enough for me. We started with a full abdominal and pelvic ultrasound (which showed no irregularities in any of the organs). Second came a blood test, consisting of standard hematology, chemistry, and endocrinology (including nutrients levels). Even though the doctor found the results normal, again, I was bothered by some figures: lipid panel still out of balance, low sodium, vitamins B12 and D, as well as deficient ferritin. I was eating the most balanced and richest diet of my life, where were all the nutrients going?…

Meanwhile I had been doing some research on my own, and was starting to suspect that my problem was caused by gluten, and that I could possibly have Coeliac disease. The more I learned about this auto-immune disorder, the more things made sense: all my symptoms, even though seemingly disparate, could be result of malnutrition, which is the main consequence of Coeliac. I started to have misgivings about the dietician’s rejection of a possible newly emerged intolerance: notwithstanding the fact that I had tested negative few months back for gluten intolerance, things could have changed.

The last step the GI proposed was to run an endoscopy and colonoscopy. In parallel, I had come to know that screening for Coeliac was possible: the two most common methods are blood testing and intestinal biopsy. The latter is generally more reliable, as some blood tests can sometimes give false negative results. The intestinal biopsy, which examines the condition of the gut, resolves the matter when it reveals the atrophy of the villis (microscopic finger-like protrusions that cover the epithelial lining of the intestinal wall) caused by Coeliac, and typical of this disorder. I took the opportunity of the scheduled endoscopy to request an intestinal biopsy from the doctor, right before the procedure. Also, I took advantage of the intestinal cleansing I had to perform for the colonoscopy to “stay clean”. I decided to keep away from gluten till I get my results, and see if there would be any difference. And there was.

A week later, the biopsy reported “duodenal mucosa with severe villous atrophy and increased intraepithelial lymphocytes, consistent with Coeliac disease”. Which was translated by the GI specialist in an expediting “habibti, ente 3endek meshkle ma3 el 2ame7” (“you have a problem with wheat, dear”).
That’s what I call medical vulgarization taken to offending levels.

The last test the GI specialist asked for was an immunology blood test to confirm the Coeliac diagnosis (and to rip off extra money, the biopsy being conclusive enough). I had to go back to eating gluten to perform these tests, that measure the immune system’s response to this protein when it is ingested.
The two tests I took were:

  • tTG IgA: tTG (tissue transglutaminase) is a protein found in most of the body’s tissues. IgA (Immunoglobulin A) is an antibody that normally helps in fighting off various threats (viruses, bacteria, toxins,…). To put it in a simpler way, the tTG IgA is an “anti-self” antibody, so a positive tTG IgA blood test indicates the body is creating antibodies to its own tissues.
  • Anti-gliadin IgA: this is an “anti-gluten” antibody, gliadin being one of the main types of proteins that constitute gluten. It is found in significant levels in most Coeliac disease patients (some individuals are IgA deficient and will need additional testing).

At the end that week I took on the “gluten challenge”, on my 31st birthday, I bid farewell to bread, wheat, oats and all those delicious gluten containing foods I always loved, because I knew what was ahead of me.

Several tests are available for Coeliac diagnosis, including genetic screening. The combination of the two tests I took, in addition to the biopsy, were enough to confirm my Coeliac diagnosis: I hit the jackpot, yay for me!…

Chapter 4: The Final Loop

I had started the gluten-free diet right after I made the blood test, before the results were even issued. When January came and the holidays commotion was over, we proceeded to clean our kitchen like never before: we did our best to eliminate all traces of “gluten” products and activity (after all, this kitchen has witnessed roaring baking days…). Today, we live in an almost gluten-free house, except for the couple of items Diran likes to eat, kept in restricted places, and handled with much caution to avoid contamination.

After a few weeks of living gluten-free, the bloating started to diminish and my energy picked up. To my biggest joy, my periods came back and the hair loss decreased dramatically. Slowly, my extremities recovered their normal tactility. I stared to feel alive again. I was happy I was able to be active: I had a lot on hand. Discovering gluten-free cooking was an exciting prospect, combining it with a cow milk free diet made it more challenging, and ensuring it was all highly nutritious turned it into a real tour de force.

Even though my general condition got better after I stopped gluten, I never felt I regained my full health. I kept on doing research about Coeliac, delving in all aspects of this autoimmune disorder to learn more about problems associated with it and ways to improve my condition. I soon became aware that Coeliac has much deeper implications than what’s commonly acknowledged, and found the holistic outlook on this disease way more well-founded than mainstream western medicine. I familiarized myself with the pros and cons of gluten-free diets, and came across the SCD (Specific Carbohydrates Diet) as well as the GAPS (Gut and Psychology Syndrome) diets. I began giving the latter a serious consideration.

With the beginning of spring, I started to feel the bloating worsening again, and I realized that my body pains were never really gone. I imputed that to the lack of proper exercise over the past months, and decided to pay a visit to my osteopath. As I wrote in a previous post, she was the one to stress that the metabolic setback causing my problems may not be resolved solely by a gluten-free diet. Upon her advice, I decided to get proper medical assistance, and went to see an endocrinologist who doubles as naturopath. You can imagine my surprise when I found out that he was also a certified GAPS practitioner! After thoroughly discussing my history, test results and current state, we settled that action must be taken to rebuild my gut lining and restore a healthy intestinal flora. What I was primarily suffering from are two conditions named “leaky gut” (abnormal gut permeability), and intestinal dysbiosis (faulty intestinal flora), both of which commonly coexist with Coeliac disease. It is hard to say which triggers the other though, since leaky guts pave the way for food sensitivities (molecules, like gluten, seep outside the intestinal wall, and are perceived by the body as toxins) and could trigger Coeliac. In return, Coeliac damages the gut wall, making it even leakier. In the same fashion, the lack of friendly bacteria (also affected by gut wall damage) compromises the digestion process, thus creating lots of “undigested” food in the gut on which the pathogens (“bad” bacteria) are happy to thrive. The toxic load resulting from this overgrowth is one of the factors that set off intolerances, autoimmune disorders as well as a number of psychological and psychiatric problems, as seen in autistic children for example.

As you see, this is a vicious circle where poor digestion correlates with defective metabolism, of which Coeliac disease is a visible manifestation.

The GAPS nutritional programs aims at achieving the following:

Rebuilt the intestinal wall to seal the leaky gut and reinstate proper food absorption: the diet is very rich in animal proteins and fats, which provide the building blocks to regenerate the lining cells. Bone broths as well as meat, chicken and fish stock are a staple in the GAPS diet. They are both highly nutritious and extremely digestible, providing the body with valuable amino-acids, minerals and vitamins while offering the digestive system the chance to rest .

Restore a balanced intestinal flora by reducing the amount of “bad” bacteria and increasing the “good” ones: the protocol suggests that when we avoid foods that we are unable to completely break down (because of dysfunctional digestion), we decrease the amount of undigested food particles in our gut, and are able to deprive the pathogens of their sustenance. Starches, which are metabolized to disaccharides (such as grains, complex sugars, and starchy vegetables), specifically feed the pathogenic microflora. By eliminating those, we “starve” the “bad” bacteria out and reduce the noxious overgrowth taking over our gut. Additionally, it is imperative to repopulate the intestines with beneficial flora, and to do so, one has to eat a diet that’s very rich in probiotic foods (mainly fermented stuff), and supplement with probiotic tablets at therapeutic doses.

The GAPS diet can be seen like a rehabilitating and detoxifying cure, that starts with stocks and soups and progressively introduces other foods, one after the other, making sure the body’s tolerating each one well. Most people are surprised to see that, once their gut starts to heal, it becomes possible for them to eat food they had previously been intolerant to. Wasn’t I “intolerance to cow milk”? I now realize how ill-defined this statement was, as there are plenty of different components in cow milk that can cause an intolerance: is it the lactose? is it one of the 30+ proteins in it?… The GAPS diet follows a very structured outline to introduce dairy that allows you to grasp what constitutes milk-derived products and identify which part in it you could be intolerant to. End result: I have been eating homemade yoghurt, sour cream, kefir, butter and ghee without a single symptom of intolerance for over a month now.

This goes to prove that, as suggested earlier, merely avoiding the food you’re intolerant to may not necessarily address what created that intolerance in the first place, and the simple elimination of offensive foods is not enough to eliminate the risk of developing other food sensitivities or more serious disorders. If you look around, you will realize that a great deal of people who start with a minor intolerance, sooner or later develop multiple intolerances and/or allergies, and end up going into one elimination diet after the other.
Unfortunately, the list of intolerances is often more likely to grow than to recede if the core problem is not dealt with in a sustainable way. In the manner of paranoia, this inadequate defensive mechanism tends to escalate (sometimes exponentially) if not tamed at the root.
What’s also unfortunate is that the increasing factors that bring about such extreme defensive responses are becoming a standard of our modern environment.

Chapter 5: How Long Is The Tunnel?

What may have taken years to “incubate” is not likely to be undone in a measly few weeks or months, let’s face it. I have been unwell for nearly two years, and struggling over the last one. I can tell that I’m going through is a life-changing journey, that’s sometimes turning out to be pretty steep, and I’m hoping to currently be on my way to durable recovery. I have been on the GAPS intro diet for more than two months, and my health started to dramatically improve shortly after I started the program: my energy level is better, and my body pains are completely gone. In the first week, the bloating almost disappeared and my body seems to have adjusted to its ideal weight… and is not flabby anymore, so I look more like myself. I regained my coordination and feel less weak, not enough though to resume my normal activities (capoeira being on top of the list). I am hoping to believe that the worst is over, and that the closing chapter will not be too distressing. The past few weeks, I have been experiencing “die-off” symptoms that are pretty pronounced (revisiting bloating, hair-loss, itching, late period, and heavy legs, as well as new symptoms like abdominal pain and horrendous underarm odor and breath).

Before embarking on the GAPS diet, I tackled with my doctor a number of possible “parallel” problems I could have, which may require to be addressed specifically: the digestive system is, after all, one complex mechanism, and seldom does something go wrong without affecting other functions; in fact, such “conditions” generally settle in hordes. That being said, it is not to exclude that my stomach, pancreas, liver or kidneys are also undergoing some difficulties, but things should either clear up or clear tout court, and I expect to be able at some point to see where I stand. Hopefully soon.

Photo credits in this post:
http://www.cartoonstock.com
http://www.knowabouthealth.com
Ron Leishman http://clipartof.com/

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10 thoughts on “The Full Story

    • I don’t know if “fascinating” is the right word, but what’s coming out of it certainly is 🙂
      Thanks for your message and hope to see you soon!

  1. Sand, this is very interesting. A real life case of the illnesses that the “Paleo Solution” talks about (he also says that beans and legumes – including peanuts- contribute to leaky gut). If you can’t find the book in Lebanon, I’ll lend it to you when I return in September. Just let me know.

    • Yes, I definitely need to explore the paleo, and will do some reading, if not soon then in september by the latest 😉
      I am certain that the carbs and grains contribute to the leaky guts, my guess is that both the carbs and some proteins are to be incriminated. This is why sprouting and fermenting (or at least soaking) offer a better way to eat those foods, as it breaks down complex sugars and proteins into simpler ones. Doesn’t the paleo diet promote this idea as well? well, that’s if you really need to eat grains in the first place…
      Glad to hear you’ll be back soon 🙂

      • Alright, I’ll remember to bring the book. Paleo does not recommend any grains or legumes, not even fermented. The damages they do to the body are not worth it. But now that I’ve been eating Paleo for a while, I don’t miss any of those foods and don’t crave them at all. Of course, ice cream and chocolate are always attractive (though I don’t crave them anymore), so we allow ourselves to cheat once every week or two.
        By the way, the “Paleo answer” is better than the “Paleo solution”, but they talk pretty much about the same things.

  2. Habibti! Read this although we had talked about it…didnt know the extent to which you had gone through. I hope you recover fully and return to your beloved Capoeira. I am sure they miss you 🙂 You are a super smart capable loved woman and you will be FINE. Big hugs.

    • Thanks for your lovely words Hingli! Yes, this (epic) post retraces all the story, which I tend to abridge when I tell it in person :S
      Dunno about being smart and capable, but being loved DEFINITELY helps 😀

  3. Thank you for sharing your story. When an adult describes how he/she felt before diagnosis, it gives me an insight about how my boy must have felt before, without being able to communicate his condition. But thank God he was diagnosed. And you are lucky too. It’s good that you persevered till you found the reason that what making you feel bad!

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