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!

25 Responses to “Gutted and Galled about my Gut! Food Intolerances: A Mixed Blessing”

  1. Jyl Milner 17 June 2011 at 7:45 pm Permalink

    Thank you so much for sharing what you’re going through food-wise. While I haven’t (yet) been tested for food intolerances, I did change my eating habits 2 months ago thanks to a book recommended by a friend with fibromyalgia and CFIDS (Prescription for Nutritional Healing), which was written by two dietitians. Whatever it is I’ve left out or am emphasizing in my diet, I feel much better than I did before I started eating this way. My husband, like your fiance, is very supportive and also cleaned out the cupboards and fridge for me!

    I wish you the very best in your journey to health. Your tales of the south of France and your discoveries there make me jealous – so much of Europe sounds like heaven to me!

    Your friend in Arizona,
    Jyl

    • Sarah Downing 17 June 2011 at 8:07 pm Permalink

      Hey Jyl,

      Thanks for your sweet comment. I’m VERY glad that you are doing so much better since you changed your diet. It’s a huge hassle, but I think in the long-run it really is worth it. It’s still early days for me, but already my bloating has gone down quite a bit. If I’m noticing some improvement after around 10 days, I’m thinking I should be noticing quite a lot of improvement after say three months.

      I’m happy for you that your hubby is also super supportive. We really are very lucky! Both Corey and I are passionate travellers and foodies, so this has been a bit of a blow, but as I said in the article it means that we are getting to rediscover new and different foods.

      Are you planning on getting the food intolerance test done in the future, or are you just doing the elimination diet? I think the test can be quite expensive if your insurance doesn’t pay for it.

      Wishing you continued improvements in your health!

      Love,

      Sarah

      PS: We are lucky to have all this access to some of the yummy European cuisines. I will miss some of that when we move to the US at the end of this year.

  2. Bernadette 17 June 2011 at 8:20 pm Permalink

    Wonderful post Sarah!! I wish I could have written my journey out as nicely!! As you know I have done some of the same things as you (testing,healing leaky gut, etc) but I didn’t see mine in a positive light. (I was also very very ill at the time) So it’s great to see your perspective!!! See it as a challenge and approach it that way! Love it!
    I hope you have the great results I did…it took about a year to be able to tolerate some of my favorites again and I am now treating yeast (my 1st doc didn’t)but I feel so much better!!
    Glad to hear your fiance is so supportive too…I need to get mine on board, I am sure he has a yeast issue too.
    Anyway, loved reading this..good luck with it all and keep us posted!!!

    • Sarah Downing 17 June 2011 at 8:56 pm Permalink

      Hey Bernadette,

      Thank you for your kind comments. It amazes me how similar our situations are and it is a great comfort to me to know that I can share my experiences with you and also turn to you for advice because you are obviously extremely knowledgeable on this subject.

      Keep up the good work and good luck with getting your fiancé on board too. I will be sure to keep you posted on my progress. Make sure you do the same!

      Love,

      Sarah

  3. Lori 17 June 2011 at 9:31 pm Permalink

    Sarah, you have come so far already. I love that you are looking at this challenge in a positive way. Your story is very inspirational. You’re amazing as always and I’m so glad Corey is on board and so supportive, as I know this makes all the difference when faced with such a challenge. I haven’t been very successful in coming up with great tasting alternatives. All your examples of what you’ve been eating sound so delicious!

    I’ll be watching for your status to read: “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! 🙂 (big smile)

    Love,
    Lori

    • Sarah Downing 17 June 2011 at 10:08 pm Permalink

      You are too kind, Lori. I know there are so many like me who have gone through the same things, but I wanted to write about my story in detail to raise awareness about food intolerances and how they can impact our health. Corey’s support certainly does make all the difference.

      I’m glad you like the sound of what we’ve been cooking. You should try out some of the ideas. Tonight, we made a trio of fresh fish marinades in different fruity vinaigrettes (mango, passion fruit, rapsberry). I served it with a Mexican potato salad, made with boiled potatoes, guacamole, yellow peppers, black olives, tomatoes and a mango vinaigrette. I would have done a chili vinaigrette, but our friend doesn’t tolerate chili, so I thought I’d try something different. Then I decided to make dessert with some leftover coconut milk we had in the fridge from making last night’s sweet potato/carrot mash. I slowly heated the coconut milk; added some fresh pineapple and banana; spiced it with ginger, cinnamon and ground cloves (would have added nutmeg, but I have a slight intolerance to that), a dash of Glühwein (German mulled wine) and a dash of maple syrup. It was quite delectable. Before, I had stopped cooking because I had little energy left, so Corey was doing most of it, but now I am once again regaining my energy and feel like being creative in the kitchen once again. We make a good team:-).

      Wait for that status – I may just do that – I’m ready to try anything (well almost!)

      Love,

      Sarah

  4. Arlene Heggen 18 June 2011 at 5:21 am Permalink

    Hi Sarah! It was good to read your story and identify with many of your experiences. I’m 5 years with no gluten and feel so much better. I know you have to read every label! I am also intolerant of dairy, but have found many substitutes that I think are yummy. (My girls say, “Ya, Mom, if you think it’s good it must taste like cardboard!”) Our 2 yr old grandson has the same food intolerances.
    It’s great how many new food products there are out there the last couple of years…….people are catching on. It does irritate me that they charge 4 times as much for non-gluten!
    Anyway, thanks, and keep up the good work! love, Arlene in Montana

    • Sarah Downing 18 June 2011 at 6:50 am Permalink

      Hi Arlene,

      You’re Heide’s aunt Arlene, right? I remember your name from her page:-). Thanks for your comments. I’m so glad you are feeling better as a result of giving up gluten. It’s sad to hear that your two-year-old is already having problems too. I’ve read a lot about the toxins in our environment and foods making us more prone to illness and allergies these days. I remember Heide mentioning something about the lake in Montana. I wonder whether there is a connection. I’m glad there are more gluten-free products available, but like you I also wish such products were cheaper:-). I try to cook fresh, but you still need the adjunct products either way.

      Take care of yourself and thanks again for commenting! It’s in part thanks to your niece that I aleady knew quite a bit about allergies when I was diagnosed. In my case though, with a bit of luck I may actually be able to tolerate some gluten again – the jury is out yet on whether I have celiac. I’d like to stick as much as possible to a gluten-free diet at home just because it’s healthier (even if I ever do tolerate it again), but it would be nice to have something with gluten in it if I need to when eating out without having to worry about the nasty side effects. Stomach issues suck big time!

      Wishing you continued good health!

      Love,

      Sarah

      • Arlene Heggen 18 June 2011 at 5:05 pm Permalink

        OhMyGosh! Yes, I’m Heide’s Aunt Arlene! She is such a sweetheart and has suffered so long.
        I’ve often thought about growing up on Flathead lake………we were surrounded by cherry orchards which were sprayed with wicked poison each year. We also got our water from the lake, which would’ve had the poison also. Anyway, the spray could certainly be a precursor to immune system problems………I’m sure we were on overload!
        I also was going to mention that I’ve been told that buckwheat is not gluten free…. Thanks for your reply and brightening my day! =0)
        love, Arlene

        • Sarah Downing 18 June 2011 at 5:11 pm Permalink

          I’ve seen how much Heide has suffered, Arlene, and it make me very sad. As you probably know, I am Steve’s brother’s fiancée. I’m also not sure whether you knew, but Heide and Jessa are responsible for the wonderful site artwork:-).

          I remember Heide telling me about that lake and also that many people who grew up around there are now sick. That’s so wrong that something like that is allowed to happen.

          As for buckwheat, I’m not sure who told you that, but I think they were misinformed – buckwheat (despite the name) isn’t even a kind of wheat. I also just ate some bread from a gluten-free brand that was made from buckwheat and I know that Heide is a big fan of buckwheat pasta, but hell it certainly gets confusing figuring out what you can and can’t eat, doesn’t it?:-)

          Check out this link on buckwheat, it should explain it a bit more:
          http://glutenfreecooking.about.com/od/glutenfreeingredien2/p/buckwheatisgf.htm

          Love,

          Sarah

          • Cynthia 20 September 2011 at 5:58 pm Permalink

            Im also in Montana, in Great Falls. Ive never been to flathead lake but i heare abotu it all the time.

          • Sarah Downing 20 September 2011 at 6:01 pm Permalink

            Wow, even now it’s reputation precedes it …!

            Love,

            Sarah

          • Sarah Downing 20 September 2011 at 6:01 pm Permalink

            Wow, even now its reputation precedes it …!

            Love,

            Sarah

  5. a 18 June 2011 at 10:04 am Permalink

    i checked and the stuff i take is called omniflora n. it contains lactobacillus gasseri and bidifido longum.
    thanks for the nice dinner last night. 🙂

    • Sarah Downing 18 June 2011 at 10:06 am Permalink

      Thanks, A. I remember you mentioning it. Those two seem to be in most probiotics, I think. I’m glad it’s helping.

      Love,

      Sarah

  6. anita 19 June 2011 at 12:04 am Permalink

    ah yes. i’ve traveled this road for many years now. at first, the consternation and frustration of this diet is a bit overwhelming. then, a few months in, when the improvements come, it’s like awareness dawning.

    two years down the road, it’s simply my daily thing. i’ve developed my routines, and try to stick to it as carefully as possible. mistakes are painful. overall, my health is worth more than any pastry, pasta or pizza slice!!

    you’ve got the right attitude girl. it will be worth it in the end.

    • Sarah Downing 19 June 2011 at 12:36 am Permalink

      Overwhelming is the right word, Anita. I am hoping that down the line I’ll be able to reintroduce some of these foods – whilst I see the benefits of abstaining from at least gluten, gluten-free, egg-free and dairy-free does not afford me much flexibility and it would be nice to be able to consume these foods now and again without having to worry. For now though I’m being strict about what I eat and I hope it pays off. I was told at the beginning that as my body detoxes I might experience a worsening of my symptoms and on a couple of days I’ve experienced bloating and cramps for no reason despite eating as I should. Are you familiar with this “Herxing”? According to the literature, it’s only supposed to last 10 days, but Heide mentioned it could last for up to three weeks.

      Love,

      Sarah

  7. Heide 22 June 2011 at 2:29 pm Permalink

    I can honestly say I had no real clue I was alergic to wheat, just the cronic unwell I blamed on all the standerd causes. But once I gave gluten up on trial when I learned my aunt had discovered her intolerance, wow what a difference. However it took four more years to diagnose and treat the thyroid , and at last I am feeling like I will recover!!! I think it also has taken time for my body to heal, I was being considerd for lupus and MS when I went off gluten in 2005. Now I am on 60mg armor and slowly increasing the dose as the doc re tests monthly to be sure I havent gone way over in numbers. It is slow , but I can say my hair isnt falling out in clumps, my tummy isnt as unpredictable, and I actually have good days!!! For me the combo seems to be the fix, armor and gluten free. I am so greatful to my aunt Arlene who was brave to start the path of gluten free and for sharing her story with me. I also choose as much organic and simple foods as I can and find the world to be open to new experiances instead of closed by my depenance on the wheat.

    • Sarah Downing 22 June 2011 at 2:41 pm Permalink

      Heide, I know how tough it has been for you with the celiac. The good news is today I found out that I don’t have the hereditary “celiac” gene, so I don’t have an increased risk of getting it despite the fact that my dad has it – I haven’t inherited this. Also, the test did not show any signs of celiac, so that my doctor is confident that I do not have it and may in 6 months to a year be able to eat at least some gluten again.

      I can’t express my happiness that you are beginning to feel better. When I was first diagnosed, the penny dropped and I realised that you almost certainly had thyroid disease too. I am very glad that you fought to get that diagnosis and that you’re even on the right meds now. I know you are impatient to find the right dose, but isn’t it brilliant to feel like for the first time in years you finally have hope?! I didn’t realise you were experiencing sooo many improvements. This truly is excellent news. I remember before I was diagnosed and how terribly sad I felt for you when we were at Gayle’s and everybody seemed mad at you for staying in bed. It broke my heart. Little did I know that a while later I would experience some similar symptoms, including but not limited to the Epstein-Barr. Some of what I have experienced has been so similar to you, although I think I was lucky that in me it was caught earlier. However, I am also incredibly lucky that I can learn from your experience, your love and your encouragement. I couldn’t ask for a better sister-in-law.

      Your aunt Arlene is wonderful too and I am happy to have met her, albeit only virtually.

      Love you!

      Sarah

  8. Cynthia 20 September 2011 at 6:03 pm Permalink

    Hi Sarah,

    Had to come back and read your article again. So help me understand this… once tested for celiac and if it comes back negative it could still mean you have it? or vice versa? Im starting the gluten elimination diet today and so far its been 4 hours that ive been gluten free and feel great. No running to the bathroom which means I have time to get work done. I dont know know if i have any dairy or egg allergies but I do know that I cannot drink whole milk, it has to be fat free.. basically watered down. Eggs just make me really gassy. So i may try that next. Although im not ready to give up my milk cause i love my lattes! yesterday i foudn a raspberry vinagrette saled dressing that is gluten free and oh my its delish! The thing that i noticed is that gluten free is SUPER expensive! Love your articles! 🙂

    • aj 20 September 2011 at 6:53 pm Permalink

      hey cynthia and sarah,

      i’m jumping in here, even tho i don’t usually. sarah is really knowledgable on this topic, surpassing even me, and i’ve been gluten free for a few years now!

      i’m sure she’ll have a lot of good info to share with you re: your question. i can tell you, i had many many of the symptoms you’ve described here, and getting better was a combo of several things. cutting back on the dairy, cutting out gluten, and addressing the candida i had developed. (i’ve got lyme disease and have taken gallons of antibiotics, which help, but let candida run rampant) you can have gluten sensitivity, and NOT be celiac. i also have hashi’s, like sarah, and food allergies tend to go with that. i am not full celiac by birth. as far as gluten free foods, well, if you’re eating real, whole foods, and not processed cellulose laden treats, then you’ll find it’s affordable. the secret is to eat real food. the less “manufactured” stuff you consume, the better you’ll feel. i know there are a lot of great gluten free items, but many of them are little more than processed junk. a cookie filled with fat and sugar is just as bad with or without gluten… you know?

      good luck, it’s a tough adjustment, but so worth the effort.

      aj

      • Sarah Downing 20 September 2011 at 7:04 pm Permalink

        Hey AJ,

        Thank you so much for sharing your valuable perspective on this. You flatter me! I often think of you as more knowledgeable than me on a lot of health-related issues. You’ve certainly had to research a shitload considering what you are up against … I wholeheartedly agree with your point about wholefoods and have heard this mentioned time and again. Many people actually express concern that gluten-free processed foods are often higher in calories than their gluten-containing counterparts. For me, buying organic has been the only way to go, but that’s mainly because I have no other way to find a good variety of gluten-free foods in the normal supermarkets. That said, I’ve learned a lot along the way and I do appreciate the way organic foods contain fewer and purer ingredients. When you’re trying to heal your gut, you really don’t want to be putting the crap in your body that is contained in a lot of foods and sadly we often fail to realise it until we take a packet or tin out and look on the back. Corey was so shocked when he cleaned out our pantry and realised the crap that was in some of our foods (particularly the American ones that he had brought home because he missed them!). Our house is a gluten-free zone now save for some gluten-containing cereal for Corey because the gluten-free stuff is just too damn expensive. Yes, that is also so true – when you have a diet free from allergens, your grocery bills do go up, but on the other hand it could potentially make your restaurant and doctors’ bills go down, so there is always a pay-off (as Anita explained so convincingly:-).

        Love to you both (soooo bloody stressed this week, but am holding out until Saturday when we are going to Bermuda!),

        Sarah

    • Sarah Downing 20 September 2011 at 6:56 pm Permalink

      Hey Cynthia,

      Sadly, it’s not that simple. I had a stool test for celiac and I have also had blood testing, all of which were negative. However, the IGG antibodies test I had for food intolerances showed that I have a 3/4 intolerance to gluten. Celiac and gluten intolerance/sensitivity are not synonymous, but gluten intolerance (which is far more common than full-blown celiac) can actually lead to celiac, which is an autoimmune disease.

      I’m glad you are feeling so much better already – it is certainly very motivating to carry on the diet, isn’t it? It does sound like you may have issues with eggs and milk too unfortunately, but I understand if you want to do one thing at a time to prevent it from becoming too overwhelming. Some people with egg intolerances report that they are fine eating free-range eggs and luckily I can do quail eggs. Eggs make me gassy too and it’s no fun!

      I don’t blame you for not wanting to give up your lattes, but be aware that there is a wide range of milk and other dairy substitutes available for those who can’t tolerate dairy – millet milk, rice milk, coconut milk … The So Delicious brand from Turtle Mountain is supposed to be really delish!

      Raspberry vinaigrette does sound yum! Enjoy experimenting and don’t be afraid to compare tips with others – you can potentially learn so much from people who have been on this diet for a while.

      Thanks again for supporting my articles:-). You’ve always been so encouraging.

      As for answering your questions about gluten and testing, I urge you to watch this video – it helped me understand a lot of things when I was first diagnosed: http://towncenterwellness.com/resources-products/gluten-free/what-is-gluten-sensitivityintoleranceceliac-disease/.

      Love,

      Sarah

  9. Peta 17 April 2014 at 10:00 pm Permalink

    Hi Sarah,
    I am about to get the Imupro300 test done and have been doing some reading (thanks for a great informative article). I have already cut what I can figure to be “trigger foods” from my diet. Before doing the blood test do I need to reintroduce these foods or can I keep eating without gluten and diary and still get an accurate result?
    Peta


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