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Tim Kastelle

My thoughts are with the two of you Joe.

Joe McCarthy

Tim: thanks for your kind words of support.

Agatheb

Have you looked into this? http://freakonomicsradio.com/the-power-of-poop.html

Joe McCarthy

Agathe: I was not formally familiar with fecal transplants (aka transpoosions), but following the the link you suggested to a 20-minute Freakonomics radio segment - complete with transcript and several interesting reader / listener comments - about The Power of Poop, "a couple of gutsy investigators [Thomas Borody and Alex Khoruts] willing to go to a dark place", offers an interesting new avenue to explore.

It's interesting that gastroenterologist Thomas Borody is from Sydney, offering yet another example of innovation relevant to intestinal disorders (and, perhaps, multiple sclerosis) arising in Australia. Alex Khoruts was co-author of a recent, somewhat more scholarly, commentary on Therapeutic transplantation of the distal gut microbiota [Mucosal Immunology, (2011) 4, 4–7].

Thanks for the tip!

Ria

Some random comments:
Joe, you mentioned Amy's recent reaction to strawberries - how very disappointing for her :-( I wonder if it's because these are very high in salicylates and amines? Amy's reaction to the potato bake may have been because of the type of potatoes used - the 'safest' ones to use are peeled, white potatoes (peels of many and fruit and veges are very high in natural food chemical). All other potatoes, including sweet potatoes, are moderately high in salicylates, and thus can be problematic.

If FODMAPs are a problem for Amy, it's a given that lactose is because it's the D for Disacharrides. Lactose-free milk is recommended in the FODMAP diet so you don't have to go completely dairy free - is it available where you are? In Australia you can buy lactose-free milk, cream, and ice-cream.

Since starting the Failsafe Diet, I too have been having hypersensitive reactions to many foods that I used to eat in abundance. Apparently this is very normal and the hypersensitivity begins to settle over a weeks. For me, the hypersentivities that have remained are related to foods I only now realise I am chemically sensitive to - oats (which were my every-morning delight, winter and summer) and the quinoa which I replaced it with. Both of these grains now cause severe and very painful mouth ulcers and overwhelming waves of tiredness an hour or two after eating them.

The sea salt and cracked pepper chips Amy reacted to, check ALL of the ingredients against the list of problematic additives here:
http://failsafediet.wordpress.com/the-rpah-elimination-diet-failsafe/

Ria

Joe, I feel for you and Amy and the very difficult path you've both endured. It is wonderful that Amy has such a supportive partner - your empathy, compassion, intelligence and capacity for critical analysis is a unique combination. And though I don't know either of you, I suspect Amy has these characteristics too, and so no doubt she is a wonderful partner too.

I read your post with great interest. After a life time of daily diarrhea and continual weight loss, my husband was only really diagnosed with fructose malabsorption. As a family, we too are now exploring the FODMAPs diet and have the very difficult task of balancing it with the Royal Prince Alfred Hospital (RPAH) Elimination Diet more commonly known as the Failsafe Diet.

Ria

Here are some excellent resources on the Failsafe Diet, but PLEASE NOTE, if you are on the FODMAPS diet, there are many foods in the Failsafe Diet that are not 'safe' for your particular condition and vice versa.

RPAH Elimination Diet Handbook
I can't recommend this book highly enough - it's $22AU and worth every penny
http://www.sswahs.nsw.gov.au/rpa/allergy/resources/foodintol/handbook.cfm

Succinct but VERY comprehensive - includes list of foods and additives to avoid
http://failsafediet.wordpress.com/the-rpah-elimination-diet-failsafe/

Introduction to the 'how' of the diet
http://www.sswahs.nsw.gov.au/rpa/allergy/resources/foodintol/sed.cfm

The development of the Failsafe Elimination Diet (research and clinical trials)
http://www.sswahs.nsw.gov.au/rpa/allergy/resources/foodintol/development.cfm

Food additives list - the problematic ones to avoid
http://www.fedupwithfoodadditives.info/information/additives.htm

The 'mother' of all websites for food intolerances
http://fedup.com.au/

Ria

People who are sensitive to natural food chemicals are usually also sensitive to one or more of the common FOOD ADDITIVES. If you seem to be reacting to a store-bought product (or a medication) but can't work out why, it might be one of the additives causing the problem.

Below is a link to the 350 food additives permitted in Australia and New Zealand.
The 'number codes' may not be consistent across different countries, but I think the names probably are.

About 50 food additives are likely to cause adverse reactions. They are marked in RED bold with “AVOID”

Other Additives in RED should be used, if at all, with caution.

Other additives are unlikely to cause reactions (though this not true for every individual ie citric acid can be problematic for some). This includes anti-caking agents, bleaches, emulsifiers, mineral salts, propellants, food acids, sweeteners, thickening agents, vegetable gums and vitamins.

http://www.fedupwithfoodadditives.info/information/additivesall.htm

Joe McCarthy

Ria: thanks for your kind support and additional information. I've gone through and added embedded URLs to each of the links you'd shared, to enable other readers to more easily explore the resources you suggested (though I haven't had the opportunity yet to fully explore them all).

I have read a bit about the RPAH Elimination Diet, and noticed the rather small intersection of foods that are "safe" for both FAILSAFE and low-FODMAP diets. Our dietician - who I believe has taken the RPAH training - has raised the issue of salicylates and amines a few times, so they are among the many considerations on our radar. And we are increasingly vigilant about reading and interpreting the lists of ingredients for the foods she does eat.

Amy has recently succeeded in adding a few foods that are low-FODMAP "safe" to her diet, and has gained a few pounds. We're still not sure whether fructose malabsorption is the primary or a secondary factor in her digestive disorder(s). Some recent consultations with doctors and other health professionals have yielded new [partial] possible explanations, and we have a few more consultations on the horizon that may reveal more. I hope to post an update on what we've learned in a few weeks.

Thanks again for sharing what you've learned, and we wish you and your husband all the best as you navigate the challenges of your individual and collective digestive health odysseys!

Frederique

Thank you for this. As a former colon cancer patient who also was diagnosed young and who is struggling with odd, painful and sometimes debilitating GI symptoms, i appreciate the lead.

Best of luck to Amy, and continued persistence and courage in the search for lasting improvement. And i would like to underscore your support for Amy as well as her courage and determination. My experience is that when doctors don't know what a patient has, they tend to downplay the symptoms. Lack of diagnosis tends to cause a similar reaction in the patient's entourage - if it was real, there would be a diagnosis right?

So i wanted to say it's great that you are a supporter and not a doubter. And thanks again for sharing.

Joe McCarthy

Frederique: thanks for your kinds of words of support.

Amy's digestive health odyssey has continued along often unpredictable and inexplicable paths. In re-reading my last response to the previous comment, I realize that I have not yet followed through on my intention to post an update ... so I will simply reconfirm my intention here.

Meanwhile, I wish you all the best on your own journey toward greater health!

Theadora

Hey Joe and Amy,

My name is Theadora, I was diagnosed with Fructose Intolerance last year when i was 19 years old. I understand everyday is a struggle. Self control seems to be my biggest challenge. Tonight I decided to google it to see if any one out there would have any sort of blog and then i found this. Some days im just so fed up, the pain is too much for me. Once you take the sugar its irreversible and you have to wait until the symptons are gone. I look like a 4 month old pregneant women my stomach bloats so much. I would love to know amy how you get through everyday?, i feel like its unavoidable.

Theadora

Joe McCarthy

Theadora: thanks for sharing some of your story here. Given that Amy seems to be tolerating some FODMAPs, we increasingly suspect that some other disorder(s) - with similar symptoms - may be the actual cause of her ongoing problems. Her most recent and currently most promising treatment support has included acupuncture and other non-traditional (or non-western) approaches and practices. Most days continue to be challenging, and we keep hoping that significant improvement is just over the horizon ... but sometimes that horizon seems very far away. Unfortunately, we haven't yet stumbled on a set of "best practices", but we keep hoping some will emerge, and will share them when we discover them. Meanwhile, we send you our best wishes for rising to meet the challenges you are facing!

Karen Zaorski

I'm so glad that I stumbled upon your blog post about Amy's health issues. I too was diagnosed with FM last summer. 6 wks later after struggling with the low FODMAP diet I was tested for SIBO which was positive. I have since had 2 Rafaximin treatments (several months apart) and seem to be doing better along with the continued low FODMAP diet. Yes, this diet is certainly restrictive, but I'm feeling so much better and actually feel as if Ihave my life back...GI-wise. It's not perfect by any means but it is significantly better. I have gained my weight back....and then some. Last month I connected with Kate Scarlata, RD (outside of Boston). You and Amy may want to connect with her as she recently participated in FODMAP training in Australia. She had the latest changes in food testing and was extrememly knowledageable about FM and SIBO. I left with so much new information, a diet plan and a shopping list. She has great modified recipes on her website as well. I recently began taking a probiotic which is FODMAP safe. It's Culturelle - Health and Wellness Formula. She also recommends Pure Encapsulations Multi t/d as a safe vitamin supplement. Thank you for highlighting your wife's journey. Wishing you and Amy many blessings! Karen

Joe McCarthy

Karen: thanks for your kind words, and for sharing some of your own experience and the resources you've found useful. I've read a few things by Kate Scarlata, and have found them very informative. I had not heard of Culturelle before, so it's good to know about an alternative. Wishing you all the best on your own journey!

colon health

No matter how the researchers cut it, patients participating in screenings had higher cure rates across the board. Furthermore, the higher the stage of cancer, the more effective were the screenings. Five-year survival (rather than cure rate) showed similar rates.

Emine Kumcu

Last night I bought strawberies to make daiquiri for a gathering at a neighbor's house this Friday for the opening ceremony of London Summer Olimpic games. I ate perhaps three strawberies and I am dying of abdominal pain today. I have been to the ER twice and each time I was told all I had was gas! They took an X ray and it showed all the bubles in my bowels. I knew I had gas but why was I having it to the extend to send me to ER! No explanation.

I know now I have fructose mulabsorption. One day I had nothing but iceberg lettuce and grilled chicken. I was sick the next 24 hours. That is when I went on the Internet (I had allergic family, knew how to do muscle tests we learned in Japan) and searched for iceberg allergy and that is when I came accross in a forum somebody suggesting to check fructose mulabsorption.

Since then I have been very careful with foods that are high in fructose (I had to give up 6% soy milk) and had been doing very well until last night. I got up with an extreme pain this morning and I still have pain almost 15 hours later. If I have glucose right after I eat something and feel that there was too much fructose, it would help me. But perhaps all of the fructose is already in the bowels, no matter how much glucose I took today, it made no difference.

I grew up on fruits and vegetables in Turkey. Yet, I don't remember being sick. I am not going to give them up but I don't want to be sick either. Now, what I do is make green smoothies, put oats, barley etc type of grains at the bottom a Ball/Mason jar, add green smoothies (usually 60% vegies 40% fruits) and on top add plain Turkish yogurt that I make at home, top it with nuts and seeds. Eating this type of raw foods has helped me tremendously. I was not having any problems until last night when I ate strawberies alone.

Thanks for sharing your wife's experiences. Everything helps, scientific articles I read but others' experiences and what works for them is what helps me!

Gary

Thanks for sharing your wife's issues, as hard as I thought I had it, mine was nothing compared to yours. Ever since 1982 I have had diarrhea which was at first shocking, then after about a year it calmed down, but over the last 10 years or so it has worsened. I was informed at the time it was a stomach infection. I have been bloated and I thought there was a growth in my stomach, but that was nothing compared to the diarrhea though. I work on a different building site each day and i need to make sure there is a toilet onsite or a McDonald's or else, no control. This would be almost every morning and possibly a couple of times during the day. Late last year I finally discovered with 2 Hydrogen tests that I am both Lactose and fructose intolerant. I also get indigestion a lot due to a hiatus hernia, about 2 years ago I have controlled it with a Nexium tablet each day. A dietician gave me the normal instructions but I also removed all sugar, wheat, legumes and breads from my diet. I went cold turkey, I used to love my chocolate, icecream, onions etc. I also add a desert spoon of fish oil to my new regime (mainly to help my torn shoulder tendons) which may assist but I don't really know. I am living mainly on fish, red meat, eggs, rice cakes and slowly increasing my veggies and salads. The outcome so far is I seem to be cured to a great extent. I can now have my morning cappuccino, go out to a restaurant (once per week or so) and eat anything without issues. Well 95% of the time that is. I consider this a near-cure. Interesting to see how I am in the next few months. I also have had high cholesterol for over 20 years, i have stopped my Zocor, I will get it checked in the next few months and see if this has come good as well.
I hope my experiences can in some way help someone else reading from your site.

Joe McCarthy

@Emine, @Gary: thanks for sharing your journeys. It is encouraging to read that you have both progressed beyond the dark night of the soul (and gut) and are doing better. I hope the positive trends continue.

cath

Do you think fructose is really bad for us? Reading from your article and others comments scares me. This is not an easy problem because most foods we can buy has high fructose corn syrup on it.

Joe McCarthy

@cath: I don't believe fructose is bad for most people, but it is bad for some. I also believe that the widespread use of high fructose corn syrup is a significant health issue; perhaps the current US drought will prompt a search for alternatives.

HW

Hi Joe/Amy: have you heard of the Specific Carbohydrate Diet? http://www.breakingtheviciouscycle.info/
I'm trying it out and I'm also restricting fructose. I've noticed some improvements. Hope things work out!

Joe McCarthy

@HW: I have heard of SCD, but Amy has not tried it. I'm glad that you are noticing some improvements, and hope that trend continues!

Mandybohlken

I have been diagnosed through a hydrogen breath test to have Fructose Malabsorption. I have found that I have the same dietary restrictions as your wife does. People often do not understand and cannot comprehend what it is like to have this condition. The food restrictions are endless, I have found that I cannot "reintroduce" foods into my diet like most medical professionals suggest that you can over time, and this means that you have to accept that for the rest of your life you can no longer experience the joy of eating out, cooking and gardening like you used to, and simple family get-togethers and workplace potlucks become a true emotional and physical struggle and therefore are no longer fun. No one can understand the depth of the emotional depair that this condition brings unless they have it themselves. There is no simple list to follow, each case is unique, and it is not as simple as avoiding fructose - one must avoid sugar, fructose, gluten, dairy, peanuts, caffeine, vegetables, fruit, grains, carbs, it goes on and on. "Fructose-free is not enough, gluten-free is not enough, sugar-free is not enough". Something must be done to help us. I don't know why there isn't more research being done to help with FM, but I never seem to find anything new that is actually useful to me. I find your aricle to be "spot-on" in describing what this condition is like and what you can actually consume, which is so little. Thank you for writing this and please continue to do so.

Joe McCarthy

@Mandybohiken: While FM may not be directly life-threatening, I agree that it is severely lifestyle-threatening at a breadth and depth that is not readily comprehended by anyone who has not had to live with such restrictions. I wish you all the best in adjusting to the restrictions and exploring new, substitute channels of fun and joy!

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