Elemental diet throws food sensitivities into sharp relief

[Meg Davidson]

Good luck with sorting out your diet Julie - it must be so worrying having limited your diet so much to now be reacting to things that used to be safe.
I am also battling with adding real food back into my diet I'm afraid. I assumed I could go back to the (heavily) modified SCD I was on before, but I must be reacting to something iin it because a week after my disastrous trial with cheese I still have quite a lot of symptoms and I had none on the elemental diet. It's mostly amine related I think.
In frustration I suggested to my wonderful dietician that I should go back to the elemental diet until things settled down, but she advised against it. I'll quote from her reply:
'Only use the elemental diet supplement to get your caloric needs met. A couple of papers (C grade evidence) suggest the longer the client continues on elemental diet the more sensitive they may become. So please keep challenging yourself.''
Yikes. I didn't know that. Cort and Lissa, that will be important information for you too.

 

[Cort]

Good luck with sorting out your diet Julie - it must be so worrying having limited your diet so much to now be reacting to things that used to be safe.
I am also battling with adding real food back into my diet I'm afraid. I assumed I could go back to the (heavily) modified SCD I was on before, but I must be reacting to something iin it because a week after my disastrous trial with cheese I still have quite a lot of symptoms and I had none on the elemental diet. It's mostly amine related I think.
In frustration I suggested to my wonderful dietician that I should go back to the elemental diet until things settled down, but she advised against it. I'll quote from her reply:
'Only use the elemental diet supplement to get your caloric needs met. A couple of papers (C grade evidence) suggest the longer the client continues on elemental diet the more sensitive they may become. So please keep challenging yourself.''
Yikes. I didn't know that. Cort and Lissa, that will be important information for you too.

No kidding! The body is so weird but then again detoxification can do some crazy things and I assume that anyone on an elemental diet or doing fasting doing some heavy detoxification.

Does she mean you should keep eating all sorts of foods? I wonder if you should actually start having a little cheese every day in order for the body to desensitize itself?

 

[Meg Davidson]

Hi Cort

Does she mean you should keep eating all sorts of foods? I wonder if you should actually start having a little cheese every day in order for the body to desensitize itself?

Hi Cort
Cheese is the least of my problems. Right at the moment, even the RPAH elimination diet with no amines at all, or even the modified SCD diet, both of which I used to be well on, are giving me problems and I'm not sure exactly what the culprit is. That means the traditional 'challenge' scenario is out the window. I can't 'challenge' myself on new foods when I haven't found a baseline where I feel well.

So yes, she's using the word 'challenge' loosely. She's talking about reintroducing small amounts of carbs - starchy vegetables and brown rice. These may have been feeding the SIBO bacteria but the fact remains that previously (before I went on the SCD) they didn't cause any GI symptoms, but now they do. Go figure.

 

[Cort]

Hi Cort



Hi Cort
Cheese is the least of my problems. Right at the moment, even the RPAH elimination diet with no amines at all, or even the modified SCD diet, both of which I used to be well on, are giving me problems and I'm not sure exactly what the culprit is. That means the traditional 'challenge' scenario is out the window. I can't 'challenge' myself on new foods when I haven't found a baseline where I feel well.

So yes, she's using the word 'challenge' loosely. She's talking about reintroducing small amounts of carbs - starchy vegetables and brown rice. These may have been feeding the SIBO bacteria but the fact remains that previously (before I went on the SCD) they didn't cause any GI symptoms, but now they do. Go figure.

You know what Meg I would shoot Courtney Craig an email - she knows all about these diets - she uses them in her clients and herself. She may have a different perspective - http://www.drcourtneycraig.com/blog/

It sounds like amines are not the whole story. If its detox that's the problem - you might want to take some powdered charcoal or other substances to mop the stuff that got released in your system. Even fiber can help. Vit C, E and glutathione might help. Courtney would probably know better.

Life is full of surprises isn't it. You're feeling better and then you're feeling like crap! Some of my worst periods were right after I felt the best...It's just WEIRD......

Good luck!

 

[Issie]

I have a fish story too. Fish starts to degrade the second it is caught. It is one of the highest histamine causing foods you can eat. If it isn't properly frozen and fast - there could be a reaction to those of us that are sensitive. I even tried off the boat, from the fisherman, but my husband didn't put in the freezer - but refrigerator for over night ---- fast and bad reaction. Thankfully, I knew after several bites to stop eating it. Hubby knew it too. He only needed two bites. He is nearly as sensitive as me.

I have to vote for the Whole Food Vegan diet. I was wheelchair bound and barely living and now I have a life. I still have "flares", but they are less than before and even with them - I can usually function, although somewhat limited. My latest trials of new things are greatly helping me. I'll write more when Im more certain that they don't backfire after a few weeks. But, today has been a week into - and I felt great. So hoping it keeps going in that direction.

Issie

 

[LondonPots]

This has been a really interesting and eye-opening thread. Thank you all so much for sharing what you've learned. Back in 2013 I did a week long juice fast then reintroduced foods, probably not as slowly as I should (by food group rather than any other plan). I did this on my own as I didn't have a nutritionist or even a Dr that would agree that food might be playing a role in my FM symptoms. It helped though and in the end I discovered that my body hates gluten, and doesn't really like eggs or dairy either. It's not a fan of processed foods in general. I did really well on a modified Paleo diet for a while and then this last year or so my gut has been reacting more and more to more and more things. It's not liking most FODMAPs (but a few are ok), nuts kills it, and inflammatory foods (nightshades, etc) don't do well either. Uncooked veggies, including my juice, give me terrible gas . It's so frustrating to feel like I'm going backwards after I did so well for so long.

I wonder if The Low Histamine Chef might have something for you - she takes the line that you just can't keep excluding things from your diet, but instead eat lots of anti-inflammatory foods, herbs etc: http://thelowhistaminechef.com/histamine-safe-ferments/
It's the angle I'm following now.

 

[CountingMySpoons]

I wonder if The Low Histamine Chef might have something for you - she takes the line that you just can't keep excluding things from your diet, but instead eat lots of anti-inflammatory foods, herbs etc: http://thelowhistaminechef.com/histamine-safe-ferments/
It's the angle I'm following now.

Thanks Penelope. I'll check it out.

 

[Meg Davidson]

It's a month since I finished the three week course of the elemental diet and since there has been interest in my experience I thought I should let you know how I was getting on. It's been a pretty rough few weeks because in my ignorance I re-introduced real food in a way that my body did not appreciate. Early on it seemed I was more sensitive to amines than previously. Also, no matter what I ate I was getting smelly flatulence. This really depressed me. It seemed a real step backwards because this hadn't been a problem in the past as long as I avoided FODMAPs.

I really didn't know which way to turn. I couldn't go back to the elemental diet for fear of making my sensitivities worse, and my previous list of 'safe' food wasn't working for me any more. Restricting my diet even more to identify the new sensitivities wasn't an option, I decided. Since getting rid of SIBO was the main goal I decided to return to my last 'safe' diet that I'd felt well on, which was the Specific Carbohydrate Diet minus FODMAPs and high amine foods, and to introduce other foods slowly.

To my great relief it seems to be working. At last most of the amine-related neurological symptoms (brain fog, depression, anxiety, visual disturbances and swimmy head) are starting to clear. As soon as I started on low-dose erythromycin, which helps small intestinal motility, my bowel function became much more normal. My dietician has a young family and we joke that she deals with poo at home and talks about poo all day at work too ... all I can say is I had forgotten what normal poo looks like and it is a revelation. Very happy on that score. The flatulence seems to be much better too. So I guess the SIBO has had a severe knock back.

I have started reintroducing refined sugar, maple syrup, brown rice, gluten free flour, buckwheat, quinoa and potatoes in small quantities with no ill effects that I can see.

Thank you, Penelope, for those very helpful links about histamine intolerance. Ms Ykelenstam's advice about anti-histamine and anti-inflammatory foods is very helpful (although I wish she included a list somewhere on her website. I guess she wants us to buy the books ... I might just do that.) I've been eating as many of those as I can - and to my joy find I can get away with broccoli even though it is on the 'amine' list. Another completely unexpected result is that the pain in the muscles of my forearm, which I have had for about three months and thought was an overuse injury, has suddenly resolved. Being a sceptical being I am not jumping for joy yet, but it is an interesting coincidence.

One thing that has not abated is the strange buzzy feeling in my body. This has been with me for years. I haven't been sure whether it was a Vit B deficiency or an amine-related diet thing. I now know that it's diet. It disappeared after a couple of weeks on the elemental diet and came back immediately when I ate the tuna. Getting rid of that and feeling as good as I felt on the elemental diet is my holy grail. Right at this moment I'd say I am about 75% there.

 

[Lissa]

Thanks for the update Meg! I have another appointment with my ND today to discuss a plan as to whether I'll dive into the elemental diet for my recent SIBO flare ups.

I also just got my 23&me results back (and thanks to Genetic Genie) -- I've discovered that I have one of the MTHFR mutations. Hopefully I'll find out more at my apt today.

Looks like I may possibly have some thyroid stuff going on now too... Which had always been somewhat of a joke in the past. Every doctor always says "have we checked your thyroid lately" and results always come back completely normal! This time though I think for whatever reason things have shifted and my numbers are off. First time in 20 some years of hearing it -ha! So seriously--- why now I wonder?! What's my body up to this time?! Ever a mystery this CFIDS thing...

Luckily I'll find out more soon! Thanks again for your invaluable input Meg. It has given me food for thought on this big decision!

 

[Cort]

I wonder if The Low Histamine Chef might have something for you - she takes the line that you just can't keep excluding things from your diet, but instead eat lots of anti-inflammatory foods, herbs etc: http://thelowhistaminechef.com/histamine-safe-ferments/
It's the angle I'm following now.

Have you read Yasmin's story? It is the most amazing story....She was a top journalist - really top!

I’m an-ex journalist with over 10 years research and international news production experience for 60 Minutes, CNN and the BBC, so believe me when I say, I know how important the facts are. Not only do I back up each claim on my site with numerous studies, I also make sure to get out there and put my journalism background to good use, by interviewing the histamine/mast cell/mastocytosis/inflammatory field’s leading medical experts, best selling authors and healers.

How did I get here? In 2008, after 20 years of being misdiagnosed with everything under the sun, I became so ill that I was forced to quit the career of a lifetime. I’d seen 68 doctors by this point and had been misdiagnosed with: recurrent sinusitis that required surgery, multiple sclerosis, lupus, hepatitis, lyme disease, kidney failure, liver failure, leukemia, ovarian cancer, breast cancer, uterine fibroids, endometriosis, chronic urinary tract infections, bladder cancer, diabetes 1 & 2, STIs, pelvic inflammatory disease, brain tumor, bipolar disorder, generalized anxiety disorder, unipolar depression and borderline personality disorder. I had two operations (one of which proved completely unnecessary) and was told I needed another six, which I refused.

_____________

Just over a year on a high nutrient, histamine balanced diet rich in antihistamine and anti-inflammatory foods has given me my life back. I am now the healthiest and happiest I’ve ever been (and I have the blood test results to prove it.). I believe that elimination has its place, for a very limited time, but the goal should always be to re-introduce high nutrient foods as soon as possible (or not eliminate them in the first place). I found that the more I robbed my body of vital nutrients, the less able it was to function normally, the worse my histamine/mast cell induced inflammation became, and the more fearful my body and brain became of all foods, not just inflammation causing ones.

She is smart too

I do not believe that a standard low histamine diet, will, under any circumstances, heal what ails us. To focus on histamine or salicylates or fructose, is, to quote the Brits, not to see the wood for the tress. Ultimately we’re dealing with inflammation. A low histamine diet consisting of freshly deep fried sweet potato fries with hamburgers with yeast and ketchup free buns, 3000 calorie carob bars with white sugar, root vegetable “potato” chips, gluten free cup cakes, tomato free wheat pasta, etc, while snubbing bananas, avocado, grapefruit and other higher histamine, far higher nutrient foods, just ‘aint gonna do it sadly. This lifestyle is about cleaning your body from the inside out. Going low histamine but eating the same old crappy stuff is barely going to help control symptoms, let alone heal. (Book a consultation if you’d like a little help).

 

[Cort]

It's a month since I finished the three week course of the elemental diet and since there has been interest in my experience I thought I should let you know how I was getting on. It's been a pretty rough few weeks because in my ignorance I re-introduced real food in a way that my body did not appreciate. Early on it seemed I was more sensitive to amines than previously. Also, no matter what I ate I was getting smelly flatulence. This really depressed me. It seemed a real step backwards because this hadn't been a problem in the past as long as I avoided FODMAPs.

I really didn't know which way to turn. I couldn't go back to the elemental diet for fear of making my sensitivities worse, and my previous list of 'safe' food wasn't working for me any more. Restricting my diet even more to identify the new sensitivities wasn't an option, I decided. Since getting rid of SIBO was the main goal I decided to return to my last 'safe' diet that I'd felt well on, which was the Specific Carbohydrate Diet minus FODMAPs and high amine foods, and to introduce other foods slowly.

To my great relief it seems to be working. At last most of the amine-related neurological symptoms (brain fog, depression, anxiety, visual disturbances and swimmy head) are starting to clear. As soon as I started on low-dose erythromycin, which helps small intestinal motility, my bowel function became much more normal. My dietician has a young family and we joke that she deals with poo at home and talks about poo all day at work too ... all I can say is I had forgotten what normal poo looks like and it is a revelation. Very happy on that score. The flatulence seems to be much better too. So I guess the SIBO has had a severe knock back.

I have started reintroducing refined sugar, maple syrup, brown rice, gluten free flour, buckwheat, quinoa and potatoes in small quantities with no ill effects that I can see.

Thank you, Penelope, for those very helpful links about histamine intolerance. Ms Ykelenstam's advice about anti-histamine and anti-inflammatory foods is very helpful (although I wish she included a list somewhere on her website. I guess she wants us to buy the books ... I might just do that.) I've been eating as many of those as I can - and to my joy find I can get away with broccoli even though it is on the 'amine' list. Another completely unexpected result is that the pain in the muscles of my forearm, which I have had for about three months and thought was an overuse injury, has suddenly resolved. Being a sceptical being I am not jumping for joy yet, but it is an interesting coincidence.

One thing that has not abated is the strange buzzy feeling in my body. This has been with me for years. I haven't been sure whether it was a Vit B deficiency or an amine-related diet thing. I now know that it's diet. It disappeared after a couple of weeks on the elemental diet and came back immediately when I ate the tuna. Getting rid of that and feeling as good as I felt on the elemental diet is my holy grail. Right at this moment I'd say I am about 75% there.

I'm glad you're doing better Can you say how you determined that high amine foods might be bad?

 

[Lissa]

A quick note to report back here... I finally decided to dive in and start the Elemental Diet. I'm 6 days in and I think things are going OK so far. It's certainly not any fun whatsoever but I'm plugging on. Fingers crossed that it trounces the SIBO!!!

I'd be happy to share details if there is any interest. I've been keeping a log and tracking things... Results, symptoms, flavor experiments, helpful hints to make it all seem a little easier. (I've been doing the homemade recipe recommended by Siebecker...). Much of it has been gleaned from various random sources online, or I've been winging it in desperation and made some good discoveries.

This is all handwritten for now but when I'm up for it I intend to compile a digital version that would be easier to read. It may be a while though. I haven't exactly turned any major corners yet!! Hanging in there for now... And determined to make it to the end!

 

[Meg Davidson]

Hi Lissa, congratulations! And good luck.

It's about time I logged my more recent experiences as well. I'm now three months post-end-of-elemental. Things were pretty rough at the start and I worried I had added some extra food sensitivities and was still coping with more flatulence than I would have liked. I haven't had a repeat hydrogen breath test so don't know what is happening inside me with any certainty, but I can report that I am really very well, eating mainly fresh meat/fish/eggs, vegetables minus the ones high in amines, and a limited amount of carbs. (I can eat wheat! Just not a lot.) Limiting sugar so candida doesn't take hold and eating a lot of antihistamine, antibacterial, anticandida food - oregano, turmeric etc. My 'meds' include Gastro Relief (a probiotic safe for those sensitive to amines), Candaid (caprylic acid and pau d'arco), low dose erythromycin and fish oil.

My bowel motions are much more normal than they were. Yup, at a guess I would say the SIBO has taken a big hit. However it seems my leaky gut is still leaking. I am still intolerant to all the FODMAPs except dairy (which was never a problem to begin with) and I'm still suspicious of amines.
Cort - in answer to your question about how I identified amines, I went on an exclusion diet 18 months ago and all hell broke loose when I reintroduced amines - terrible migraine. Now if I go over threshold eg a few tomatoes on top of a piece of chocolate the previous day, I get a headache, malaise, brain fog, fatigue and low-grade depression that takes a few days to clear. That's nothing. I used to feel like that, and worse, nearly all the time.

My life is very different now. I've recently bought myself a Fitbit and started exercising. I've been going out and exercising for 20 mins at a time with my heart rate up over 120bpm, 2-3 times a week for a month now AND I HAVE NOT RELAPSED. I have had long periods in the past when my CFS was in remission. Often I get better for no reason I can see at all. This time I'm pretty sure it's sorting my diet out that has made the difference.

 

[Lissa]

Thank you Meg! Your info has been so helpful! I've been plotting how to start back on food when the time comes. I'm intending to be as careful as possible.

Had a rough night last night... Not much in my tank today. Will try to write more later.

Thanks again for all your advice!! I'm so glad to hear you are doing so much better!

 

[Lissa]

PS... Meg- have you tried a rotation diet yet? That helped me with leaky gut a few years ago. Just a thought...

 

[Meg Davidson]

Hi Lissa

I hope you're feeling better today. Congratulations on sticking with it.

I don't know much about the rotation diet. I know you mentioned it before and found it hard work and a lot of planning. I guess I am doing a sort of loose, unofficial rotation diet. I'm rotating the carbs and eating small amounts of different amines every day. Haven't been brave enough to try the biggies like tinned fish or soy sauce yet though.

Don't get too worried about reintroducing real food. My dietitian said my bad experience was nothing she'd come across before, and she'd checked with her colleagues all over NZ and they were stumped too. This is a new field of medicine, obviously, and we are the pioneers. But yeah, she said her other patients could go straight back onto a normal diet with no problems. Then again, she did give me that advice about some studies indicating food sensitivities could increase with prolonged elemental diets.

What made you decide to go for the homemade elemental diet? What does it taste like?

 

[Lissa]

Hi Meg!

Thanks for the support! Much needed on the tough days for sure. Super wiped out today but digestion seems more settled. Still having some bouts of major bloating, but today was the first day it wasn't terrible by dinner time. I'm hoping that is progress!

Funny - I had felt a wee bit better, slightly more energy yesterday morning, but totally tanked in the middle of the night. Woke up with nasty heartburn, super bloated, and wicked case of the runs. Fun times. And being that I'm almost a week in, I was just too exhausted to deal well. (I'd had the same thing happen a few times already with no particular pattern--- got thru ok, but this one was extra special!). I'm hoping I'm over the hump now. Exhausted but better today.

I couldn't get the brand you recommended - all that is available here is the Vivonex. I researched it online and found that everyone said it was absolutely wretched. Plus it was going to be in the $600 range-- insurance won't cover it here. (Sigh.... Yet another case of getting screwed by The System). Then add to that- it is made with GMO corn and soy amongst a boatload of who knows what. Ugh. Corn and soy have been no no's for me for a while. I can't imagine that doing me any good.

So I chose Siebecker's homemade recipe which is very basic. A very specific amino acid blend, an MCT oil, honey or dextrose, a bit of salt, and a specific multi-vitamin. Made straight up its really pretty nasty but I have tinkered to make some improvements. I've been adding a little flavoring -- vanilla, almond, orange are the best so far. My husband just got home from the store -- his mission was to find some more flavors! Yay!!

As for the rotation diet, it's theory is simple --- you can eat items during one day, but whatever you eat you don't have again for 3 days. So for instance I came up with a system where I always ate x,y,z veggies the same day I had chicken. Then a,b,c veggies the same day as beef.... Etc. (make the letters stand for whatever veggies you like). If you eggs Thursday, you don't eat them again till Sunday. But you can eat as many eggs as you want all day Thursday. Ditto rice, ditto everything really. (This was before I was also dealing with SIBO- so quantity obviously applies now). I guess it gives your system time to adjust and stop recognizing foods as a threat- which can happen if you eat them every day, all the time.

That's a short version for you anyway! I have grocery bags to explore for my flavor treats!

 

[Cort]

Hi Meg!

Thanks for the support! Much needed on the tough days for sure. Super wiped out today but digestion seems more settled. Still having some bouts of major bloating, but today was the first day it wasn't terrible by dinner time. I'm hoping that is progress!

Funny - I had felt a wee bit better, slightly more energy yesterday morning, but totally tanked in the middle of the night. Woke up with nasty heartburn, super bloated, and wicked case of the runs. Fun times. And being that I'm almost a week in, I was just too exhausted to deal well. (I'd had the same thing happen a few times already with no particular pattern--- got thru ok, but this one was extra special!). I'm hoping I'm over the hump now. Exhausted but better today.

I couldn't get the brand you recommended - all that is available here is the Vivonex. I researched it online and found that everyone said it was absolutely wretched. Plus it was going to be in the $600 range-- insurance won't cover it here. (Sigh.... Yet another case of getting screwed by The System). Then add to that- it is made with GMO corn and soy amongst a boatload of who knows what. Ugh. Corn and soy have been no no's for me for a while. I can't imagine that doing me any good.

So I chose Siebecker's homemade recipe which is very basic. A very specific amino acid blend, an MCT oil, honey or dextrose, a bit of salt, and a specific multi-vitamin. Made straight up its really pretty nasty but I have tinkered to make some improvements. I've been adding a little flavoring -- vanilla, almond, orange are the best so far. My husband just got home from the store -- his mission was to find some more flavors! Yay!!

As for the rotation diet, it's theory is simple --- you can eat items during one day, but whatever you eat you don't have again for 3 days. So for instance I came up with a system where I always ate x,y,z veggies the same day I had chicken. Then a,b,c veggies the same day as beef.... Etc. (make the letters stand for whatever veggies you like). If you eggs Thursday, you don't eat them again till Sunday. But you can eat as many eggs as you want all day Thursday. Ditto rice, ditto everything really. (This was before I was also dealing with SIBO- so quantity obviously applies now). I guess it gives your system time to adjust and stop recognizing foods as a threat- which can happen if you eat them every day, all the time.

That's a short version for you anyway! I have grocery bags to explore for my flavor treats!

Thanks for sharing Lissa, Please let us know how the elemental diet goes. Have you had any trouble sticking with it?

I'm all in favor or rotation diets - they were highly recommended to me years ago.

 

[Lissa]

Thanks for sharing Lissa, Please let us know how the elemental diet goes. Have you had any trouble sticking with it?

I'm all in favor or rotation diets - they were highly recommended to me years ago.

I haven't done a formal "tips" write up yet, but I intend to when I have more energy and brain power. Soon I hope!

It is indeed a very difficult regimen. I've been 100% faithful with no straying. Early on it just seemed like if I can get one down, then I can get myself to do another.... With the aforementioned flavor tweaking though. Then there is also a mindset-- why risk screwing it up by cheating and then having to start over from the beginning? THAT makes me shudder - and control my urges to eat real food.

The hardest part is having food around- especially when my husband is eating. I've conquered it by drinking my Yuk Shake before he even starts any cooking. Then I'm done by the time he's eating his meal. And believe me - the Yuk Shakes are nasty enough to lose your appetite for anything by the time you get to the bottom! I can actually sit in the same room with him while he eats, but I can't sit at the table. That was too hard to watch. The other day I told him, "Oooooh Honey, you make me want to masticate!" Hahahaha!!

 

[Cort]

I haven't done a formal "tips" write up yet, but I intend to when I have more energy and brain power. Soon I hope!

It is indeed a very difficult regimen. I've been 100% faithful with no straying. Early on it just seemed like if I can get one down, then I can get myself to do another.... With the aforementioned flavor tweaking though. Then there is also a mindset-- why risk screwing it up by cheating and then having to start over from the beginning? THAT makes me shudder - and control my urges to eat real food.

The hardest part is having food around- especially when my husband is eating. I've conquered it by drinking my Yuk Shake before he even starts any cooking. Then I'm done by the time he's eating his meal. And believe me - the Yuk Shakes are nasty enough to lose your appetite for anything by the time you get to the bottom! I can actually sit in the same room with him while he eats, but I can't sit at the table. That was too hard to watch. The other day I told him, "Oooooh Honey, you make me want to masticate!" Hahahaha!!

Your Yuk shake