17 June 2011 ~ 25 Comments

Gutted and Galled about my Gut! Food Intolerances: A Mixed Blessing

My friend Krista compared it to giving up smoking and my friend Michele compared it to a vision quest, a life-changing rite of passage in some Native American cultures. When my food tolerance test results came in and I realized that from one day to the next I would have to stop eating many of my favourite foods, it was a terrible blow and I quite literally felt doomed (as was reflected in my Facebook status):

A feeling of impending doom. I just got the results of my food tolerance test back – it involves a rotation plan (i.e. cutting out the reactive foods for six months to a year). For me this involves cutting out all milk products (apart from horse’s and camel’s milk!), all gluten products and all egg products. Not much left to eat .

Little did I realise however that within a short time I might actually come to see this as an opportunity – to experience new foods, to eat more healthy, whole food products and to learn a new appreciation for home cooked meals. Before this fateful day, I felt that we already had quite a healthy diet, but as foodies we always enjoyed dining out and trying new things. Suddenly, I felt that my life had come to an end because I’d no longer be able to try new things … but boy was I wrong.

The day I received the results of my ImuPro 300 test, which involved taking my blood and testing delayed reactions to various foods based on my body’s production of IgG antibodies, I was actually relieved because I had been feeling semi-pregnant for nearly six months, and now I finally had an answer. To briefly explain, this particular test reveals intolerances, which are usually delayed reactions, whilst allergy tests involve testing for IgE antibodies and instant reactions. Shortly before the test, I had switched to a new naturopathic doctor because I felt that our thyroid doctor was no longer doing us justice and it was this doctor who finally performed the test.

I have been bloated on and off for most of my life, but it got drastically better as soon as I was put on thyroid meds and after that was a fairly rare occurrence (particularly bad during menstruation). This changed however when I went off the pill, which I wrote about here. This seems to have provoked an imbalance in my body, which then caused me to become severely hypo, so much so that I had to increase my dosage from 1 ½ to 3 grains of NDT (Armour Thyroid). Previously, when on 1 ¼ to 1 ½ grains, my free T3 and free T4 had been at the very top of the range and I had felt fit, but despite hoping that going off the pill would enable me to lose weight and gain energy, I began feeling more tired, bloated and constipated than ever.

The best my thyroid doctor at the time could do was to prescribe me Simethicone, an anti-foaming agent that combines gas bubbles in the stomach into larger bubbles, making it easier for them to exit the body. Sadly, however, this didn’t do a darn bit of good. I tried a couple of other natural remedies such as aloe vera, peppermint oil capsules and some very expensive Chinese herbs, as I was increasingly growing tired of my doc’s propensity to prescribe harsh medicines and I meanwhile prefer natural alternatives whenever possible.

My doctor claimed that the tiredness and bloating I was experiencing were due to low progesterone caused by my body struggling to balance itself since going off the pill. Naturally, it takes the sex hormones time to get back on track when you’ve been giving the body artificial sex hormones for nigh on 15 years. Knowing that certain sex hormones can also cause bloating, this seemed to be a plausible explanation and I decided to be patient and give my body time to iron out its imbalances.

However, things didn’t get any better and despite taking what was for me a monster dose of NDT thyroid hormone, my free T3 and free T4 were at times not even within range! Naturally, I was super worried. I didn’t have any thyroid antibodies, so didn’t necessarily think my thyroid was dying off, but I wanted to know what the hell was happening and was really rather scared.

My doctor kept insisting we come in often for thyroid blood tests, but did nothing to get to the bottom of the problem and I was getting more and more depressed as I looked at myself in the mirror and felt like I was turning into the Michelin Man! To make matters worse, wearing trousers or jeans became intolerable and so I had to resort to dresses and skirts because I couldn’t stand the pinching of my distended stomach. And the “gutting” thing was that I had bought some lovely new Baby Phat jeans just a few months earlier. My stomach was so full of air that I seemed to be bloated 24/7, it was uncomfortable to sit at my computer and eating anything just resulted in me suffering from indigestion and feeling flatulent, constipated and bloated.

It was now almost six months since I’d been off the pill and my body was still not adjusting. Despite requesting that my doctor test my sex hormones to see whether these could be the cause, his ass-backwards response was: “We’ll test them once your thyroid is balanced!” Knowing that food intolerances and allergies such as celiac can also be the cause of such bloating, I requested that my doctor test for these, but was completely fobbed off. I had at the beginning of my diagnosis insisted that he test for celiac (as I was familiar with the close connection between this and thyroid disease), but he just did a stool test and I was given a clean bill of health.

Ironically, I had in the past said that celiac would be my worst nightmare after seeing some of the horrors that my sister-in-law Heide (who is severely allergic to gluten) goes through every time she eats out. Whilst US and UK restaurants are more accommodating in their gluten-free options and labelling of menus, time and again Heide still became ill because both servers and chefs seemed ignorant as to what constitutes gluten, sprinkling croutons on a salad or adding certain forbidden ingredients to a dish off the gluten-free menu! That time we got the whole meal comped – they were seriously embarrassed and so they should be.

I was frustrated and didn’t know what to do. Both my sister-in-law and my personal trainer Dani had recommended colon hydrotherapy (colonics), which plainly put involves sticking a tube up your ass and cleaning out your lower colon with water that is sometimes mixed with other substances such as coffee which are ascribed therapeutic benefits. At this point, things weren’t getting better, my doctor wasn’t helping me and so I was willing to try anything.

I’d previously rejected the idea as the colon hydrotherapist Dani recommended was too far out of town, so that it would have been a hassle to go there – typically, you may need up to 12 sessions over a period of several weeks. On a funny aside, I once watched an episode of Hogan Knows Best where they hired a health guru who forced them to all go for a colonic. They told him they’d only do it if he did it first “to show them how well it worked” and then they ditched him and ran out of the place! Understandably, many people are a bit anxious about getting a colonic and how it’s going to feel, but I can tell you it’s not half as bad as you might think and after a while with my iPod in my ears I just zone out and wait for the water to do its work.

To get back on topic: determined to give this new therapy a try, I Googled for therapists in the Düsseldorf area. I was also rather reluctant to get colonics because my insurance can be bitches about paying for stuff like that, particularly if it is performed by a Heilpraktiker or a non-medical practitioner (e.g. a physiotherapist or chiropractor). So I was quite happy when I not only found a therapist within walking distance of our apartment, but she was also an MD (my insurance tend to give me much less hassle when reimbursing doctors’ bills) with a focus on a wide range of naturopathic treatments, many of which treat gut health and metabolic/weight issues.

Initially, I just intended to go to Dr Gabriele Schaudig for colon hydrotherapy, but meanwhile I am so impressed by this kind and committed doctor that I have switched to her for my overall treatment. She also diagnosed me with candida thanks to my furry tongue. The microbiological stool test she did showed that I was completely lacking in the good bacteria Lactobacillus (despite taking a very good probiotic), but failed to reveal any signs of candida. However, many patients can have candida without it showing up in any tests. As Anita wrote about here, furry tongue is a very common symptom. Recognising this, my doctor put me on a course of Nystatin, an anti-fungal medication (and my fiancé, who has never been treated for candida, but suspects he has had it for years, has also finally been given a course of Nystatin!) My old doctor wasn’t bad, but whilst he did blood test after blood test, he never helped me lose weight or properly listened to my concerns about my bloating. Had he done so, I could have saved myself six agonising months of feeling like a beach ball.

The added bonus with Dr Schaudig is that she doesn’t make us wait for hours, but is still very thorough with her testing and combines conventional medicine with a wide range of naturopathic therapies. Incidentally, she tested my sex hormones. They are normal for me – my androgens (male hormones) have always been elevated, but without any symptoms I see no reason to worry (and neither does Dr Schaudig). Since coming off the pill, my periods have been as regular as clockwork and they started up again without any real delay. Ironically, despite my elevated androgens (these often cause acne in certain patients), my skin is pretty much perfect – this had initially been my main worry as when I had stopped the pill in the past, my neck had temporarily broken out in horribly painful cystic acne. I now suspect that this may well have been aggravated and triggered by my untreated thyroid imbalance.

I finally feel as if I have a hope of getting better. My current treatment regime consists of healing my gut with colon hydrotherapy and various probiotics my doctor has prescribed, taking four different homoeopathic detoxes, getting acupuncture and homoeopathic auto sanguis therapy to boost my metabolism, treating my candida with diet change and Nystatin and eliminating all foods I am currently unable to tolerate. The theory is that if you eliminate these foods for a prolonged period of time, you should be able to reset your body, get rid of the antibodies to these foods (nothing left to trigger them if you are no longer ingesting the offensive substances) and be eventually able to gradually reintroduce these foods.

Each food intolerance in the test was given a rating from 1 (least severe) to 4 (most severe). My most severe intolerances are gluten, eggs and practically all milk products. There are also a couple of nuts, black pepper, mustard seed, leek, kiwi, agar-agar (often found in health food products) and – what is really bad – an intolerance that I share with my fiancé (also pretty severe, but not quite as common as the top ones I just listed): nori (aka red algae, which is the main product used in most sushi). This means no sushi for a certain period of time, which sucks because apart from nori sushi would have been one of the few things that is completely safe for me to eat when we dine out.

For foods with a rating of 1 or 2, I’m advised to eliminate them for three months; for foods with a rating of 3, I’m advised to eliminate them for six months; and foods with a rating of 4 should be eliminated for one year. Not only do I hope to as far as possible eradicate these intolerances, but I also want to avoid them turning into full-blown allergies and I meanwhile believe that my low thyroid levels despite large doses of thyroid hormone may well be related to malabsorption caused by leaky gut syndrome. Of course, candida is also closely connected to the gut! I’ve heard several inspiring stories of people who have been able to either significantly reduce their dosage of thyroid hormone or go off it altogether. I’m not necessarily holding out hope for the latter, but I certainly want to get my dosage down!

You may be wondering how I have dealt with my adjustment to this restrictive diet so far. Well, I’ll tell you. I am blessed with the most wonderful and kind fiancé in the world who is concerned about me getting better and is thus joining me on this diet because he feels it would be cruel to taunt me with things that I can’t eat. He cleaned out the fridge and pantry and the offending foods are now waiting in shopping bags for some lucky soul to take away and consume! The day I found out about my intolerance, we were due to meet with Corey’s friend Krista that evening. I cannot express enough my gratitude for her kind understanding towards me as I attempted to come to terms with what seemed to me to be a curse. We started off at a Thai restaurant, but the waiter was not prepared to tell us exactly what was in the food or to find out from the chef. His excuse was that the chef was Thai and so spoke no German, so he couldn’t possibly converse with me. It didn’t occur to the waiter to interpret for me! That was their loss because we had been very good customers at that particular restaurant, but now we won’t be going back.

After that, we went to a Turkish restaurant that I recently reviewed here. Sadly, I can no longer have most of the appetisers in the picture, but the waiter was ever so accommodating and really quite kind. The fresh fish, salad with lemon vinaigrette and vegetables were pure poetry! That is a place we will definitely be going back to.

The next night, we visited our favourite Vietnamese. We know the owner somewhat and although the ingredients are rarely listed on German menus, we got the waitress to ask what I could and couldn’t have and it turned out really well and was still incredibly delicious – prawn and mango curry on a bed of rice!

Today, I popped into our favourite Italian and chatted to the manager’s wife Patrizia. She invited me to have an espresso with her and I took the opportunity to explain my problem to the new chef (Patrizia usually cooks, but for now she’s having time off due to an operation). The new chef was already familiar with celiac and assured me he could cook me up something delicious, I’m currently getting tested for celiac with a blood test instead of the much more invasive upper endoscopy, but my doctor doesn’t believe I have it because my vitamin levels are excellent and celiac usually goes hand in hand with malabsorption. If I don’t yet have celiac, this would hopefully mean that I could very occasionally still consume moderate amounts of gluten in six months to a year.

The night after visiting the Vietnamese restaurant, we had booked a trip to the South of France, staying in hotels with kitchenettes in case we had problems eating out. We went on a road trip with a beautiful red convertible, gorgeous Mediterranean scenery and quaint farm shops en route. We stopped at many of them and stocked up on tapenades, vegetable and fish dips, homemade soups and oils, vinegars and spices. We even brought back some lavender oil and vinegar and I recently used it to make a divine and rather unusual salad vinaigrette. So much did we buy in France that we actually had to ship most of it back. The first three parcels arrived today and the next are due to arrive in the next few days.

This trip to the South of France came at precisely the right time because it made me realise that there is still plenty I can eat. I’m just best off sticking to organic products, which generally have simple and pure ingredients without unnecessary additives. Whilst organic shopping isn’t cheap, it’s worth it to have yummy stuff to eat. One thing we realised when changing our diet is that we have to make it as varied, interesting and flavoursome as possible so that it doesn’t seem like such a chore. I’ve been posting on my Facebook statuses what we’ve been eating the past few days and also what we plan on using as substitutes in the future:

Just found an online shop that can send me quail eggs – this means I don’t have to cut out eggs altogether because I don’t have an intolerance to quail eggs!
(FYI: egg substitutes are also available if you can’t get hold of quail eggs, which look beautiful and are considered quite a delicacy. Many people have an intolerance to eggs, but this is the one egg I can tolerate).

These are possibly some of the yummiest products I have ever tasted and the vast majority are gluten, dairy and egg free! I don’t care that I have to order them from France. It’s worth it to have something yummy to eat …
www.delices-du-luberon.fr

Just figured out how to order camel’s milk! We’ll be trying mare’s milk for the first time tomorrow. Luckily, we are pretty open to trying new things … it may sound unusual, but if it means I can have milk other than rice milk … (sadly, I can’t get the kind of coconut-based milk I could pour on my gluten-free cereal here – will have to wait for the US).

We’re in the South of France eating our gluten-free cereal with horse milk … I never thought I’d say that:-).

The South of France inspired us to get creative with our food once we got back to Germany:
Lightly grilled Turkish spiced lamb burger topped with chanterelles and sundried tomatoes. Served with dolmades and a side of cucumber and tomato salad with lavender and mint vinaigrette … yum!

Falafel with natural rice and a carrot, elephant bean and pear salad, served with apple vinegar and olive oil dressing with parsley, coriander and mint.

Just found this available at one of my local health food stores. Right now I have to avoid all dairy and most substitutes are soy (bad for the thyroid), so also a no-go. Almond milk ice cream not good either due to slight intolerance. But this one I can eat!
www.boojabooja.com

Eating leftovers from last night: organic marinaded chicken, oven-roasted in a bag with tarragon, rosemary, parsley and salt along with mushrooms, red peppers, green beans and onions. Served with my special sweet potato/carrot mash, prepared with chopped ginger, cinnamon, coconut milk, a dash of maple syrup and mulled wine and finished off with ground cloves.

I am somebody who loves a challenge. I have no doubt that I will get pissed off and fed-up along the way as eliminating foods can be super tough, but with the support of my fiancé, a healthy dose of creative cooking and an open-minded attitude to trying things that are initially unfamiliar, but which may indeed prove to be delicious, I intend to master this challenge and turn my health around. In the process, I am hoping that this diet will help both me and my fiancé to drop some pounds and boost our energy. Corey loves good food as much as I and he is also a passionate cook, so we really do make a great team!

All that remains for me to say is bon appétit! I’d love to hear about your feedback and experiences on this topic. Also, thank you so much to everyone so far for your wonderful support! So many of you have been cheering me on and giving me useful tips and encouragement. Food intolerances (particularly celiac and gluten intolerance) often go hand in hand with thyroid and autoimmune disease and sadly they’re not that easy to diagnose. For instance, until I got tested, I had no clue I had an issue with dairy products, mainly because the symptoms of an intolerance are often so delayed that it can be hard to pinpoint the offending food. For me personally, I wasn’t willing to give up what seemed to me to be whole food groups just because this might help my condition because of course everyone is different. Furthermore, I had a silly misconception about what going gluten-free really meant. In fact, there are more gluten-free grains that there are gluten-containing ones. I’d like to finish by quoting part of a comment I recently posted on the wonderful thyroid forum Hashimoto’s 411. It illustrates just how many interesting alternatives are available when you are faced with a restrictive diet:

I am amazed at how many gluten-free grains there are – according to my list, there are six grains that contain gluten (plus gluten itself) and 16! gluten-free alternatives: amaranth, buckwheat, carob, chestnut, fonio, millet, lupin, corn, manioc (cassava), arrowroot, quinoa, rice, sweet potato, tapioca, teff and topinambur. An interesting selection to say the least and one that also gives me hope because despite all my massive diet restrictions we can still retain some variety.

It’s interesting to me that chestnut can be used to make a powder for a milk or cream substitute and that there are even egg substitutes. The one egg sort I can tolerate is quail eggs and I found a website I can order them from in Germany, so that’s what we’ll be doing so that we can still have eggs in salads, etc. That made me very happy.

When it comes to dairy substitutes, it’s so tough … no almond or hazelnut milk due to a slight intolerance to almonds and hazelnuts, no soy milk because it inhibits your thyroid function, so that doesn’t leave me much choice except for rice milk and chestnut milk/cream powder.

Camel’s milk is apparently available in the Netherlands – there’s even a camel farm there where I can order it from. Mare’s milk is available, but it’s not super easy to find unless you order it off the net. Next thing you know, we’ll be making meat balls with quail eggs and gluten-free grains and washing them down with a mare’s milk milkshake!

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