Breaking The Vicious Cycle

[cozynana]

I am new here and wanting to know if anyone else is eating the foods out of the "Breaking the Vicious Cycle" book. I have had Celiac symptoms my whole life, stopped eating gluten in 2000 on my own and just diagnosed in Jan, 2011. My whole digestive system is a wreck and my Dr found out I have other cross reactive foods that caused me to stay sick. I am off of all grains (including rice), raw fruit, and eating mostly plain meat, veggies except potatoes, corn, and peas, I can have raw honey, bananas, and some nuts. I am much better, but wonder when I will be well enough to try adding some of these items back in. Anyone else experiencing extreme reactions like these? I also wonder if our own home grown beef that is fed grain is not giving me some trouble. I have been very ill for over two years and will do anything to get well. I am 53 and have too much to do yet to stay sick. I still have bad days and have other issues like trigonitis with interstitial cystitis symptoms and am in full blown menopause because of hysterectomy for precancerous ovaries and uterus. Between the hormones going crazy and food issues my life has been turned upside down. Words of wisdom, sage pieces of advice, etc would do wonders for me. Also would like to hear from others with mulitple autoimmune diseases that seem to go with celiac. Any name of good Celiac books would also be appreciated. Just read Dr Peter Green's book and found out tons about celiac disease I don't think my doctors even know. Informative and good, but sorry the medical profession really doesn't have concrete answers or cure.

[psawyer]

Please have a look at the topic here about the SCD. It has a lot of good information about the diet suggested by the author of that book. Towards the end of the discussion, it goes off topic into things that have nothing to do with the diet.

[mamaw]

Hello & Welcome

I do not follow theSCD diet so no help from me there. But I will tell you I have multiple autoimmune disorders & my list is growing.

I only eat grass fed beef, organic free range chicken, wild caught fish ...

home grown veggies . I can & freeze most of our food...I'm very sensitve to foods, enviro allergies,perfume, smokes, gasoline, all the morphine family & many othr drugs.

Without going to an allergist I eat limited amounts of certain foods.ie: brussel sprouts I only eat three maybe once a month.Don't love them but they are a healthy food ....You could try limiting the amounts of the offensive food & go from there.

You are correct most doctors know little or nothing about celiac.. It is an autoimmune disease so no cures except follow the gluten-free diet & be very strict....celiac for me is the best disease to have ! Why? Because you can control the disease without any chemo, radiation, deadly drugs.And after you heal most have a healthy happy long life.....

Hope you feel better soon...

blessings

mamaw

[lizard00]

I did it for a bit. There were foods that were on the 'no' list that didn't bother me, and foods on the yes list that did... so in the end, I think you have to do what works for you. Seems that in the book, there is about a 3-6 month waiting time after beginning the diet to reintroduction of some foods.

I, too, try to eat as cleanly as possible. Grass fed beef, organic, free range chicken, local vegetables (ok, I don't grow them myself, but I know the folks that do!) I have been gluten-free for 3 years, and there's still times where my gut hurts and I can't figure it out. I can't eat a lot of raw veggies, which is hard for me because I do love them. As far as lettuce and "salad stuff" goes, romaine is about as exotic and I can go!!! And I don't do too much grain, either.

Overall, though, there really isn't anything unhealthy about the SCD. It was just super hard for me to give up potatoes! When I first went gluten-free, I had a handful of foods that didn't bother me: chicken, banana, potatoes. There may have been a few more, but that seemed to be what I ate for a few weeks. I slowly added stuff back in, one at a time, and kept a food log so I could figure out if anything was bothering me.

Wish I had more words of wisdom!

[WhenDee]

You've been given more good advice here already than I have, just adding this:

This is definitely a condition where you have to be your own #1 advocate! My last US doctor was the first to take me seriously (not accuse me of making it all up in my head) and he sat in his office, completely stumped, saying, "I really think you have an autoimmune problem related to your digestive system" - but it NEVER occurred to him to consider Celiac's! So close, so far...

Not to mention knowledge of gluten-related problems is growing almost daily. I guess a doctor would have to basically specialize in it to stay current. So we have to specialize in it ourselves!

Best wishes for you in finding out everything - and quickly, too.

W

[Mish-Mash]

I appear to have had celiac symptoms all my life (iron defiency anaemia, joint pains - operation on 1 knee - umbellical hernia at 14, stomach problems, mental confusion, really bad memory, really short, no energy, ect.), and have been in and out of hospital now for 6 years (I?ve just turned 19), and 2 years ago, my mum and I decided to go gluten free, and within days I was like a new person we were all so chuffed! But then about 3 months later, all the problems seemed to be coming back, and all the dcs wpuld do is prescribe me more meds, and when they finally did the intestinal biopsies and bloodtests, they did them when we were going gluten-free! (The dc said that this wouldnt change the results ). Then in one year, I hade renal colic 3 times, recurring problems in my joints again. We then discovered I had a candida issue, so took up a diet for that, too, and hings began to get better, but then dropped again! Now we finally have our gp on board (he always just thought we were a nuissance going in with one problem after another), and he's got us going up to a really good dc who treats him for his chrons, and she's had to start from square 1 again. So a few weeks ago I had to eat normally for a few days (they didn't want to do any longer as I have a severe reaction), to re-do the blood tests and biopsies, and I've now been in bed for 2 months, almost unable to move because of bone pain in my legs, though no dc ever found anything in the xrays.

When we found the SCD we started it almost right away, and though I've only been on it a week, my sight has got alot better (part of the reaction makes my sight go really dim and fuzzy), but the bone pain just won't go away! any suggestions would be greatly appreciated!

K

[domesticactivist]

Our family is doing the GAPS Diet which is based on SCD. The main difference is that there is a lot less sugar involved. Also, there are defined stages of the diet, which you are supposed to move through as your body adjusts to each one, slowly adding one new food at a time. I think there is more focus on probiotic foods as well.

As I understand it, it's not about whether specific foods bother you (though of course extreme reactions shouldn't be ignored). It's about healing. It's about which foods are damaging to the gut and which foods are restoring health and super easy to digest, and restoring healthy gut flora.

Foods on the no list generally have a reason for being there Open Original Shared Link

and even if you don't feel a reaction attributed to a specific food, it may be causing damage or raising the actual load of what you have to deal with.

As for the bone pain I do believe that can be an autoimmune thing caused by celiac. My son is the celiac in the family (dx by gluten reactions and genetics, didn't do biopsy or blood test) and one of his most severe presenting symptoms was/is arthritis and bone pain. They tested for everything under the sun EXCEPT celiac when he was in the hospital - all negative. Eliminating gluten did take away those symptoms, and they come back right away if he is glutened.

However, eliminating gluten didn't fix all his problems, which the GAPS Diet is clearly doing.

As for recovery time - it's a process. The longer the damage has been there, the longer it is likely to take to heal. It sounds like you have a lot of severe symptoms that have persisted for years - that will likely take a proportionate amount of time to go away.

The SCD/GAPS Diets say that it often takes adults 2 years to get to a healthy gut. If I were in your shoes, I would take the Intro slow, be patient with any die-off symptoms, and give it a real try.

[jenngolightly]

I am new here and wanting to know if anyone else is eating the foods out of the "Breaking the Vicious Cycle" book. I have had Celiac symptoms my whole life, stopped eating gluten in 2000 on my own and just diagnosed in Jan, 2011. My whole digestive system is a wreck and my Dr found out I have other cross reactive foods that caused me to stay sick. I am off of all grains (including rice), raw fruit, and eating mostly plain meat, veggies except potatoes, corn, and peas, I can have raw honey, bananas, and some nuts. I am much better, but wonder when I will be well enough to try adding some of these items back in. Anyone else experiencing extreme reactions like these? I also wonder if our own home grown beef that is fed grain is not giving me some trouble. I have been very ill for over two years and will do anything to get well. I am 53 and have too much to do yet to stay sick. I still have bad days and have other issues like trigonitis with interstitial cystitis symptoms and am in full blown menopause because of hysterectomy for precancerous ovaries and uterus. Between the hormones going crazy and food issues my life has been turned upside down. Words of wisdom, sage pieces of advice, etc would do wonders for me. Also would like to hear from others with mulitple autoimmune diseases that seem to go with celiac. Any name of good Celiac books would also be appreciated. Just read Dr Peter Green's book and found out tons about celiac disease I don't think my doctors even know. Informative and good, but sorry the medical profession really doesn't have concrete answers or cure.

I follow the SCD diet. I'm 11 months in and feel fantastic! I was really sick before doing the diet and missed a lot of work. Now, I'm healthy but I have a very restrictive diet and have to make my own food. You get used to it, though. If you find that you are having problems with food other than gluten, I recommend an elimination diet. SCD is very hard to follow, so if you aren't totally dedicated, you should try something else. There's lots to choose from.

[Mari]

I've used the food lists from the SCD for about 4 years and it has been very helpful. Some alternative and herbal remedies have also helped a lot and those programs and remedies kept me going for all the years I was undiagnosed. It has been helpful to do herbal parasite cleanses, I did not realize that the worms and other parasites living in me were interfering with my healing. Nor did I realize that my bile system was clogged with gallstones and some other parasites, especially flukes. Soft gallstones do not show up in most of the most used medical tests. People's first defences against getting parasites are a healthy digestive system which produces good levels of acid in the stomach and the immune system. Celiacs have problems in both areas so may acquire parasites more easily than other people. People and especially Celiacs who work with animals or live around animals are at risk for getting their parasites. Tho the regular parasite exams are often negative there are tests available at (Company Name Removed - They Spammed This Forum and are Banned) Labs and Diagnostech Labs that are much more sensitive. The Enteric Effects Panelt at (Company Name Removed - They Spammed This Forum and are Banned) will give a profile of the organisms in the intestine and show imbalances.

[nick joyous]

I appear to have had celiac symptoms all my life (iron defiency anaemia, joint pains - operation on 1 knee - umbellical hernia at 14, stomach problems, mental confusion, really bad memory, really short, no energy, ect.), and have been in and out of hospital now for 6 years (I?ve just turned 19), and 2 years ago, my mum and I decided to go gluten free, and within days I was like a new person we were all so chuffed! But then about 3 months later, all the problems seemed to be coming back, and all the dcs wpuld do is prescribe me more meds, and when they finally did the intestinal biopsies and bloodtests, they did them when we were going gluten-free! (The dc said that this wouldnt change the results ). Then in one year, I hade renal colic 3 times, recurring problems in my joints again. We then discovered I had a candida issue, so took up a diet for that, too, and hings began to get better, but then dropped again! Now we finally have our gp on board (he always just thought we were a nuissance going in with one problem after another), and he's got us going up to a really good dc who treats him for his chrons, and she's had to start from square 1 again. So a few weeks ago I had to eat normally for a few days (they didn't want to do any longer as I have a severe reaction), to re-do the blood tests and biopsies, and I've now been in bed for 2 months, almost unable to move because of bone pain in my legs, though no dc ever found anything in the xrays.

When we found the SCD we started it almost right away, and though I've only been on it a week, my sight has got alot better (part of the reaction makes my sight go really dim and fuzzy), but the bone pain just won't go away! any suggestions would be greatly appreciated!

K

I've just turned 23 and can sympathise with some of the health issues you are having, the joint pain is definitely something that i can relate to, my blood tests kept showing a high ESR, which the doctors puzzled over for years. They eventually sent me to a joint and muscle specialist who told me i had juvenile arthritis which turned into rheumatoid. Might be an idea to test for that?

[YoloGx]

I did it for a bit. There were foods that were on the 'no' list that didn't bother me, and foods on the yes list that did... so in the end, I think you have to do what works for you. Seems that in the book, there is about a 3-6 month waiting time after beginning the diet to reintroduction of some foods.

I, too, try to eat as cleanly as possible. Grass fed beef, organic, free range chicken, local vegetables (ok, I don't grow them myself, but I know the folks that do!) I have been gluten-free for 3 years, and there's still times where my gut hurts and I can't figure it out. I can't eat a lot of raw veggies, which is hard for me because I do love them. As far as lettuce and "salad stuff" goes, romaine is about as exotic and I can go!!! And I don't do too much grain, either.

Overall, though, there really isn't anything unhealthy about the SCD. It was just super hard for me to give up potatoes! When I first went gluten-free, I had a handful of foods that didn't bother me: chicken, banana, potatoes. There may have been a few more, but that seemed to be what I ate for a few weeks. I slowly added stuff back in, one at a time, and kept a food log so I could figure out if anything was bothering me.

Wish I had more words of wisdom!

Hi Lizard,

Just read your post here. I too was on the SCD for a while. It helped a little but then again not really. From your list of "good" foods that you gave above, I wonder if you don't have salicylic acid sensitivity. SA is not just in aspirin -- it is in a lot of fruits and vegetables and herbs -- especially in the skins. I was making myself sick eating all these wonderful healthy vegetables and herbs!

Bananas, peeled white potatoes, and chicken often are staples for the low SA diet. Unfortunately for me I seem to be sensitive to fructose. However the rest follows closely to the low SA lists.

I am finding I can have maple syrup with no problem. Whereas honey is a no no (though for SCD its a yes!). Shows we are all different. I recently heard that SA sensitivity occurs 1 in 100 people. Often times there are nerve complications -- so it relates with ADHD often. For me it made it so I couldn't sleep, my nerves would burn and tingle and make me jumpy literally. I also got and get eczema like symptoms from it as well as hives -- which no one fully diagnosed but I finally figured out. It can also make you confused and/or depressed. Benedryl helps against flare ups, but its better to just eat a low dose SA diet. You can Google it and find SA lists online.

I have had to go to the extreme of having spring water rather than filtered water, since most charcoal filters are made with coconut, which is high in SA.

If this seems like its you, I highly suggest you try investigating it. It really has helped me a lot. I actually have a larger diet now in the sense I can eat most gluten-free grains now (except corn) and can actually eat some sweet stuff using maple syrup. I made the discovery that I have had SA sensitivity rather than candida overgrowth and/or a complete grain sensitivity which I thought I had previously. It is a hassle but as said worth knowing if you have it. It takes a while getting the accumulated SA out of your system, but again it is worth it.

Unfortunately there are no tests for it; just symptoms and trial and error.

Good luck!

Bea

[lizard00]

Hi Lizard,

Just read your post here. I too was on the SCD for a while. It helped a little but then again not really. From your list of "good" foods that you gave above, I wonder if you don't have salicylic acid sensitivity. SA is not just in aspirin -- it is in a lot of fruits and vegetables and herbs -- especially in the skins. I was making myself sick eating all these wonderful healthy vegetables and herbs!

Bananas, peeled white potatoes, and chicken often are staples for the low SA diet. Unfortunately for me I seem to be sensitive to fructose. However the rest follows closely to the low SA lists.

I am finding I can have maple syrup with no problem. Whereas honey is a no no (though for SCD its a yes!). Shows we are all different. I recently heard that SA sensitivity occurs 1 in 100 people. Often times there are nerve complications -- so it relates with ADHD often. For me it made it so I couldn't sleep, my nerves would burn and tingle and make me jumpy literally. I also got and get eczema like symptoms from it as well as hives -- which no one fully diagnosed but I finally figured out. It can also make you confused and/or depressed. Benedryl helps against flare ups, but its better to just eat a low dose SA diet. You can Google it and find SA lists online.

I have had to go to the extreme of having spring water rather than filtered water, since most charcoal filters are made with coconut, which is high in SA.

If this seems like its you, I highly suggest you try investigating it. It really has helped me a lot. I actually have a larger diet now in the sense I can eat most gluten-free grains now (except corn) and can actually eat some sweet stuff using maple syrup. I made the discovery that I have had SA sensitivity rather than candida overgrowth and/or a complete grain sensitivity which I thought I had previously. It is a hassle but as said worth knowing if you have it. It takes a while getting the accumulated SA out of your system, but again it is worth it.

Unfortunately there are no tests for it; just symptoms and trial and error.

Good luck!

Bea

Thanks! I'll definitely check into it. Right now I'm looking into a possible low stomach acid situation, which seems to run in my family. But as I still am having some stomach issues, I'm willing to look at anything. Right now, it seems like most things make my stomach burn and feel really heavy after I eat, which is why I'm exploring the low HCL thing. I'm almost to the point where I'd rather be hungry than eat... and I know that is really not good.

Thanks for the advice!

[Kim69]

I can sympathize. I was seeing a therapist because I had actually purchased liquid forms of food such as v8 juice and sustagen. It seemed that all food made me feel ill. Her advice was to eat the food I had been told i could eat (gluten-free low FODMAP diet, no bananas) while continuing to investigate further reasons for pain and gas. She said it was self defeating to try to guess and wonder all the time "what have I eaten that has made me ill"? I am also a wanna be vegan and since being diagnosed Coeliac I have gone back to chicken, fish, eggs and dairy purely to get better.

It's hard though! Right now I have abdominal pain while for

three days while on a work trip I was good. The pain

began at the airport at the start of my journey home. Hmmm. Perhaps I need to go back to the therapist!

Its like we have to be detectives! I will research the diets mentioned above. Thanks for the posts!