When Is Enough Enough?

[India]

Hi all,

I posted a message a few days ago about an elimination/rotation diet I've started to try to identify extra intolerances. I had lots of good advice and I'm looking into those things but in the meantime, I'm looking for advice about if and how I should continue this horrible regime.

I've been increasingly tired and brain-foggy for the last couple of months but on this diet, I'm completely wiped out and spending most of my time lying on the sofa. Also, um, I'm visiting the bathroom even less often and I'm worried about missing nutrients and losing weight, though I'm eating quite a lot. And now I'm getting a cold too.

I have a busy job and spend a couple of hours a day commuting. My husband has his own health problems, so I need to do a lot of the work at home. I also have joint and muscle problems and I'm not keeping up with my exercises and walking so I'm starting to feel really sore. I really can't carry on like this

My doctor thinks the tiredness is depression but he thinks my brain fog and memory problems are depression too, so I've pretty much given up on him. My next dietician appointment is next May, but all she said about my other intolerances was 'poor you'. I'm in the UK and rely on our national health service so they're all I've got.

What should I do? Keep going with the elimination diet or quit? What foods are ok to eat? I began with turkey, spring greens, sweet potato, beets, brown rice and olive oil; then lamb, pears, carrots, white rice and sea salt; no supplements etc. I had a few sodas at the start (not clever, but I needed energy) but I've cut those out and I've not had soda withdrawal problems before.

I've know of the SCD diet but don't know how I'd have any energy at all without some carbs. I've also read about the FODMAPs diet which suggests avoiding different foods altogether. Keeping a food diary hasn't helped in the past because I bloated whenever I eat.

I wouldn't care what I had to eat or not eat if I could just feel better

[chasbari]

I might end up being terribly non specific here but here goes. Going through various stages of recovery I eliminated almost all but a few foods. Got to feeling better over time. Amazingly so, in fact. But, still had this raging hunger and really had a difficult time sustaining energy throughout the day. Felt extraordinarily tied to home in order to be close to the quantity of safe food to get through a typical day. Relied heavily on fruit as well as eggs and other protein. I was following, for all intents and purposes, the paleolithic diet per the Loren Cordain book, FWIW. Getting stronger but the raging hunger would not subside and then I noticed bloating and gassiness creeping back in. Went cold turkey off fruits (oh, purple cow moment.. Turkey.. I stay vigorously away from poultry .. turkey and chicken.. have an aversion to it as I noticed early on it actually causes a lot of problems and weirdly doesn't taste good to me anymore.) As a result of dropping fruits my weight and energy levels stabilized and my dull gut ache and gas seemed to disappear over night. I gained a bit of weight and energy and was able to function better through the day. I am still waiting for my gastro appointment to test for fructose issues. In the meantime, after a month of no fruit, I slowly began to add a bit back in. A banana a day, then some fresh pineapple and a little of this or that. I went overboard with Lara Bars when I discovered them, finally. Went back to no fruit for several days to see if things would re-stabilize. It didn't make sense to me that removing what seemed to be a major source of calories would be beneficial to me and yet it ended up doing just that. I still have a very short list of safe foods and my diet may seem boring to the outside observer but.. that is what works for now and I will live with it. I eat a lot more protein than I ever imagined I would and that seems to be the key to all else stabilizing for me. It allows me to have sustainable energy throughout the day and I can go for hours away from my food now without the panic attack of low energy when I was so reliant on too much fruit. Long and rambling but hope this adds perspective to your search.

[sb2178]

Are you getting enough total calories and fat? I found that to be more challenging on the elimination diet that might be expected. I really need 25-30% fat (think 500-750 cal/day or 5-7 T fat from foods that contain fat with fat sources) to function well, even when I'm less active. Can you try adding in sunflower seeds or something, or watch your oil intake more carefully?

Of course, it was also most helpful once I started absorbing it ;-).

It also took 10 days to see the GI difference, and I didn't change my base until that point. The fatigue took longer to resolve -- truly back to normal after 8-10 weeks but back to functional after about 3-4 weeks.

[Katie B]

Hi India,

I'm going through a similar thing although my situation is a bit different. I followed the SCD diet in the past and it worked for small intestine bacterial overgrowth but the last bout I got in May did not clear up on this diet. It turned out I have c difficile and now have colitis, however, during this whole process I've adopted the low FODMAP diet. I find it's more balanced than the SCD diet and the fructose in the form of grape juice, apples, pears and the honey allowed on the SCD diet are apparently highly fermentable foods according to the low FODMAP diet. I've done a consultation with a dietician in Australia via Skype and she was really helpful: www.dietsolutions.net.au - they along with Sue Shepherd are the ones involved in the research done at Monash University.

I'm also working with a GI dietician here in Canada to figure out what I can eat while I have colitis. I can only tolerate 15 - 20g of carbs at one time and have to wait 2.5 to 3 hours before eating more. I'm not eating any fruit at the moment but am supplementing with a product called Vivonex T.E.N. Unlike Boost and Ensure it doesn't contain a ton of hard to digest sugars and is quickly absorbed into the intestine so bacteria don't feed on it (I still drink it slowly).

It's difficult to do these things on your own and I would highly recommend using dietsolutions or Sue Shepherd's company (although it takes a long time to book with them and I didn't find them as helpful).

I have a detailed pdf I could send you regarding which are "safe" and "unsafe" foods on this diet - there's a lot of conflicting info. out there because the research is so new. If you're interested let me know and I can send it along. Again, though it's difficult to tease out on your own - I would have never known about the carbohydrate load and would have kept eating as much rice as I wanted. There's also a fructose load so if you eat a 1/2 cup of berries you might be fine but a full cup could spell trouble.

Hope this helps a bit. In terms of the foods you listed above I'd avoid the pears since they are proven to ferment.

Good luck - I know it can be frustrating especially since many people offer different points of view but hopefully my situation can provide some insight.

[Katie B]

p.s. I was really constipated before and am now watching how many calories I'm getting from fat and have to space this out as well (as fat slows everything down). I can even forward you my meal plan if you're interested - it has approx. 2200-2300 calories per day and I'm not feeling tired (although I do miss fruit!).

[India]

Hi there and thanks. I worried about my calorie intake, especially as I've lost weight within this week. I think that since I switched from turkey to lamb, I've had enough fat and calories but I'm starting to feel ill at the thought of any more of that, because it's such a greasy meat. I also would like not to eat another piece of sweet potato for a very long time! The tiredness isn't like the usual hungry-grumpy-need-food tiredness, more like... I dunno, wearing a really heavy weight and having treacle in my brain. Hard to describe... and very hard to live with.

Could I ask how long you'd been gluten free before starting your diet and what your base foods were?

[GlutenFreeManna]

How long have you been doing the elimination diet? I felt tired and like I had a cold coming on for the first week or two. The first few days were the worst. By the end of week two, however I felt better than I had in years. I think everyone is different in how long it takes to get over the withdrawal period. If you have been feeding your body mostly processed food for all your life and then you switch to whole foods all of the sudden it is going to take some time to adjust. If you used to drink soda regularly, then the withdrawal from the sugar (or artificial sweetener) alone (not to mention caffeine) can cause you to feel run down. I did my elimination diet for a month before adding new foods in, but I had a TON of junk food vices to overcome. Some people can do it and feel good after only a few days, but I wanted to make sure I really felt good before adding new things back in. So if you have only been on this for a few days, give it a little more time before you give up.

[India]

Today is day nine, but there have been those pesky sodas. I don't think soda withdrawal is a problem, as I'm constantly trying to give it up and I don't usually have this kind of problem. But - I know it's junk and I am quitting it. I don't really eat any other junk food - I used to have chocolate but I gave up dairy a week or so before I began the elimination diet.

I guess I've just lost faith in this whole process, because it's been a really terrible week. I've been sick for over 18 months and nothing ever, ever seems to improve and this has been the worst week of all

[India]

Hi Katie, I'd be really glad to receive this info from you - thank you so much! I'm a little cautious about posting my email address but there's a link to it on my profile. I've been reading about the FODMAPS diet so it's really interesting to hear your experience of it. I also asked my doctor this week to refer me for a SIBO test so this could be really helpful. Cheers x

[Skylark]

Gosh, the lamb/pears/white rice did the trick for me.

With all the bloating maybe FODMAP is the thing to try. Both your lists have problem foods for fructose malabsorption, the brown rice on one list and pears on the other. If you swap your pears for greens right now and stick to white rice it will tell you pretty quick if it's fructose. You'll still have carbs from the rice.

I think SCD does allow simple sugars, and your body can make energy from fats as well as from sugars.

Has your thyroid been checked? Your symptoms sound like mine when I got hypothyroid this spring, especially the sluggishness, brain fog, and memory problems.

[India]

I've had my thyroid checked twice in the last year and apparently it's fine - thanks for thinking of this though.

I read in several places that lamb and pears would be good base foods (I chose lamb somewhat reluctantly because it's horribly expensive here in the UK!). I'm coming round to the idea of carrying on with the diet so I think I will do a version with only FODMAP allowed foods - so, as you suggest, the pears will have to go. How my poor sweet tooth will ache...

[Lori2]

Don't worry--your sweet tooth can be tamed. Six months ago, if I ate one cookie, I wouldn't stop until I had eaten a dozen (or two). Today I can serve cookies and ice cream to guests and not even care--except to wonder if they wouldn't be better off not having any either.

[oceangirl]

India,

Full disclosure: I was skimming reading this so I may have missed something, but, I think you may need to start from the ground up and just go to a a VERY few trusted, simple foods with your elim diet, keeping a detailed and careful food log, with symptoms (it can take a year or more for patterns to emerge, sorry to say...) and add ONE WHOLE FOOD back in a time while logging it and symptoms. If it is useful, I am over 5 years into this diet and my food log and the elimination diet have been invaluable on countless occasions even as I sometimes felt like any damn food made me sick! That said, I am HIGHLY sensitive to gluten, have had other intolerances emerge, and consequently eat almost nothing but whole foods on a modified paleolithic diet with the exception of dairy.

For over 2 years after diagnosis I was gluten, soy, fruit, nightshade, corn, legume, dairy, egg, nut and rice free- like others, I lived on air. I ate: whole chicken, organic beef, cooked greens and squashes and sweet potatoes, some raw sugar and soon added bananas in. While meager and boring, this diet helped while I healed. I have now successfully added, nuts, dairy, some fruits (low fructose ones) and tomatoes (a nightshade) successfully back in.

I still keep a food log for when things go awry and it is over 5 years old!

Discerning what the precise problems are with this disease takes inordinate patience and vigilance. HOWEVER! If you continue to see lack of improvement, you really should seek further medical advice.

Feel well and be well,

lisa

[GFinDC]

You are really just starting the elimination diet so don't give up yet. you aren't going to figure things out by throwing a lot of new foods into your body. That would just confuse things. It would be better to substitute one of your current foods for some other food.

[burdee]

Hi India,

I'm going through a similar thing although my situation is a bit different. I followed the SCD diet in the past and it worked for small intestine bacterial overgrowth but the last bout I got in May did not clear up on this diet. It turned out I have c difficile and now have colitis,

How are you treating the c-diff? I was diagnosed with that in May 2009. Because my naturopath didn't initially give me an effective drug treatment, I had several recurrences of that bacterial infection, even though I switched to vancomycin, which is much more effective in killing c-diff. Finally I learned about tapered and pulse dosing with vancomycin. I followed the recommended tapered and pulse dosing program and eventually eliminated c-diff. I've had 2 different stool tests this year. Both were negative for c-diff.

I didn't change my diet much to accomodate or prevent the colitis, because I was already abstaining from my diagnosed allergens. 'Starving the bacteria' by eating less carbs or sugars definitely does not work for c-diff. However there are a few natural botanical treaments that work on initial infections. Tapered and pulse dose treatments are the only proven effective way to eliminate recurrent c-diff infections.

[India]

Part of my problem is that I just don't know what any of my safe foods are. I feel bloated and unwell every time I eat. I'm also blessed with a raging appetite so I need to inflict this on myself at least every couple of hours.

I've had to swap a couple of my base foods because I just can't face eating them again. Even the thought of more sweet potato makes me feel sick and eating so many carrots started to produce a horrible aftertaste. To top things off, I now haven't been to the bathroom in almost five days.

I'm trying to stick with the diet but still feeling wretched and getting quite down about it. I have to say that the thought of a five year elimination diet makes me feel like life wouldn't be worth living, the way my life is already shrinking.

So sorry to be a baby. I feel at my wits' end.

[oceangirl]

India,

You misunderstood me- I have felt well 90% of the time over these past 5 years; the food log simply helps root out culprits as you go adding new foods. I eat almost all veggies and fruits, fish, nuts, sugar, some rice, some potato, some egg, dairy foods, Enjoylife chocolate, even coffee sometimes- lots of greek yogurt- blah, blah blah... and have for over 3 years. Find something that works, maybe plain chicken. ( Are you cooking ONLY whole foods you make yourself?) maybe some banana, maybe some well-cooked butternut squash to start and see how you do. Soda has high fructose corn syrup, a horrible offender of intestines so it needs to go completely. NO PROCESSED FOODS. NO SUBSTITUTE FOODS. ONLY FOOD THAT GROWS IN GARDENS, ON TREES OR SWIMS IN THE SEA OR WALKS ON LAND.

Perhaps you've really done this. If you have and you have seen NO improvement whatsoever, you really ought to get a second medical opinion.

Peace and good health to you,

lisa

[oceangirl]

Oh yes, I almost forgot- over the years on this board I've noticed that some people (myself included) have had issues with carrots, particularly initially; you might want to take them out for now.

lisa

[ravenwoodglass]

Part of my problem is that I just don't know what any of my safe foods are. I feel bloated and unwell every time I eat. I'm also blessed with a raging appetite so I need to inflict this on myself at least every couple of hours.

I've had to swap a couple of my base foods because I just can't face eating them again. Even the thought of more sweet potato makes me feel sick and eating so many carrots started to produce a horrible aftertaste. To top things off, I now haven't been to the bathroom in almost five days.

I'm trying to stick with the diet but still feeling wretched and getting quite down about it. I have to say that the thought of a five year elimination diet makes me feel like life wouldn't be worth living, the way my life is already shrinking.

So sorry to be a baby. I feel at my wits' end.

If you can find an allergist to help you out with the elimination diet it may help a bit. I never would have been able to do mine on my own. It can be a long process but in my experience it was months not years. The doctor will be able to give you a good starting point so you are getting the nutrition that you need and are consuming items that are the least likely to cause you problems. Do ask when you call the allergists office if they do elimination diets as not all do.

[India]

Thank you for this suggestion. I think this is something I am going to have to look into. As I live in the UK and rely on our National Health Service, I would have to pay private fees, which are very expensive - but this may be something I have to try.

[India]

Hi Lisa and thanks for your reply. I'm afraid I was feeling really low when I replied previously - it's just that the idea of constantly challenging food and feeling the effects for so long sounded terrible. But I could happily settle for feeling well 90% of the time, so thank you for this I just love food and cooking and I hate the way this has taken over my life, and my husband's, and the effects it has on my work and my friendships. I just want to be able to think about something else (being able to actually think would be pretty good in itself. This message has taken -forever- to write). But if the tiredness and brain fog and GI problems would improve, I wouldn't mind what I eat.

I ate pretty healthily before going gluten-free so for the last seven months, I've cooked almost everything from scratch using whole foods (except for the energy sodas - now gone completely; as are the carrots, because an unpleasant aftertaste was developing).

Part of my weariness is that it's a physical strain because my husband often can't help and I have other health problems, including neck and arm pain if when I chop, stir, etc for too long. I also live in a big city and travel by public transport, so carrying around all this food is also physically difficult. Between that and fatigue, I'm hardly going out now except for work.

It's difficult to get a second opinion because I rely on the UK health service so I see whoever they send me to, though I may beg my doctor for another referral. I've had to call him this morning for help with the C, because I've tried everything and it's getting pretty bad after two weeks of the elimination diet. TMI, sorry And sorry to complain so much on here - but I go to work every day trying to pretend I'm coping because I don't want anyone to know how bad things are. But I am persevering

[oceangirl]

India,

It can be overwhelming, especially when starting out- believe me, most veterans will tell you there is quite a learning curve! And having to work while sick is the worst. Before I was diagnosed I don't know how I got through 2 years of being REALLY sick (I am a special education teacher in a high school program for students with emotional and behavioral disabilities) but I guess I got through it. Every day I wondered if I would get through til the end of the day and there is NO down time in my program!

Figuring out a few foods that work and then cooking and packing them ahead of time helped me. Now I have it down just as writing what I eat takes no time and I barely think about it because it's just second nature. But this took time to happen. I think what most veterans want to impress on those new to the diet is not to get discouraged as it really does take time. I'm sure there are those who can just take out the obvious gluten, replace it with other stuf and do fine, but, in my experience reading this board for 5 years, that is the exception and not the rule.

Hang in there, it will get better. But remember, if you are religious with your food and product choices and you see no improvement, demand another look. Ravenwoodglass' idea about seeing an allergist is good. Also, if acupuncture is included in your health plan, it really helps with anxiety; I've found it hugely helpful.

Feel better,

lisa

[oceangirl]

Oh yeah, and I do know "stuff" has 2 "fs" not one! Sheesh! (I hate improper spelling, can you tell?)

lisa

[GFinDC]

Hey India,

In the USA we have product called milk of magnesia that is great for clearing up constipation. Might be worth a shot if there is something similar there.

Another thing to think about it is the fiber in your diet. You could add some pysillium husks or flax seed meal to your rice or other foods to boost the fiber. Just a teaspoon though, don't over do it. And make sure you are drinking plenty of water too.

If the soda you were drinking was caffeinated, then your body is going to have to adjust to not having caffeine in it. Caffeine can affect your gut just like the rest of your body. So things may have slowed down due the caffeine being gone.

I think it might be good for you to try just a little caffeine also, say a cup of tea once a day. Stay off the soda though, you don't want to be addicted to that.

Anyway, lots of ideas, maybe one of them will help.

[ravenwoodglass]

It's difficult to get a second opinion because I rely on the UK health service so I see whoever they send me to, though I may beg my doctor for another referral. I've had to call him this morning for help with the C, because I've tried everything and it's getting pretty bad after two weeks of the elimination diet. TMI, sorry And sorry to complain so much on here - but I go to work every day trying to pretend I'm coping because I don't want anyone to know how bad things are. But I am persevering

Have you tried prune juice? If not give it a try. If you are literally not having a bowel movement how long has it been and how much pain are you in? If you are having small movements that is one thing but if your not passing anything you need to get that referral pronto as impaction can be a real problem.