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Trying A New Approach Since No Improvement In Sx

WakeupNurse

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WakeupNurse Newbie
WakeupNurse
Posted

OK so I've always had GI problems but never thought that I had Celiac, call me naive but I just always thought a 6 minute digestive track was normal. Then about 2 months ago I abruptly starting having continuous D, nausea, loss of appetite, tachycardia, weakness, worsening symptoms of my dysautonomia- to the point that I've required weekly IV's and have lost +30 pounds. After about 3 weeks they ran the celiac blood tests and they came back negative, however my progressive thinking doctor knew I could very well still have it. So...I went gluten & casein free and still no improvement, actually my condition has worsened as the majority of my weight loss and symptoms have been since then because I can't eat and what I do goes straight through! All of my labs are fairly normal and they're at a loss.

So I had a test called a CRT (computerized regulation thermography) done. The results showed that I still had SEVERE food allergies and fermentation and that my gut was indeed the source of all of my problems. (have multiple other health issues too)

He put me on the Specific Carbohydrate Diet and gave me this book called Breaking the Vicious Cycle. It is very restricting, does not allow any grains at all, no sugar, no potatoes, no rice, no corn. Basically meats, and most fruits & vegetables. Apparently there have been drastic results with people with Celiac & all sorts of IBD's that have been unresponsive to the other treatments.

So I was wondering if anyone has tried this diet because I know I've seen from this site that a lot of you continue to struggle with symptoms even after going gluten free? Even as restricting as it is I'm going to give it a 100% attempt because I've been so sick I've had to go on medical leave because I can't walk across the room without blacking out! Any feedback would be appreciated!

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CarlaB Enthusiast
CarlaB
Posted

I've heard good things about the diet, but if you're not consuming dairy, it will be difficult.

Are you taking a good probiotic? That really helps with digestion.

Are you sure you're 100% gluten-free? Gluten can be hidden in various places.

Some of us have other health problems in addition to the gluten intolerance. If you're not getting better and are 100% gluten-free and 100% allergen free (from the foods you personally are allergic to), then maybe there's something else going on.

Good luck in feeling better!

gfpaperdoll Rookie
gfpaperdoll
Posted

Hang in there with the SCD diet, with no dairy !!!

that is the way I basically eat with a few treats of corn & rice. I have been gluten-free 3 years & very healthy.(gluten light for 10 years before that - thinking allergies)

If you are desperate for something later on, I recommend Lundberg Rice Chips.

In the meantime just enjoy the good foods that you can eat., & know that you can add some things in later.

Did you clean out your kitchen? got rid of the teflon pans, wooden chopping board, porous stuff like that?

Double check what you are eating. My sister thought she was using a non dairy creamer - wrong - it was lactose free - NOT dairy free.

One word of caution, a lot of us have a problem with soy. Even if you do not I would not start drinking soy milk etc.

Between almond flour & coconut milk - you can make check for some recipes for treats. But I totally encourage you to stick to the basic plain foods for a bit.

Also, did you give up sodas? artificial sugar? I think those are totally not good for you.

I also have eliminated most corn syrup - check your jam (you can use it to season a chicken breast) & get the ones that are fruit only with no added sugar.

Please do not eat the gluten free crackers & things - I cannot tolerate them & I think they are all cross contaminated in some way - plus I just do not feel my best with grains on a daily basis.

& watch out for white potatoes, some of us have a problem with them & the nightshade family.

Good Luck

dlp252 Apprentice
dlp252
Posted

I tried it for a couple of months (probably not nearly enough time to give it a good trial). I did see a little improvement, but in the end I discovered that I had MANY more intolerances to food than I could have imagined, and even an elimination diet didn't help as much as it could have because some of the foods that are considered "safe" were some of the ones I was intolerant to.

I KNOW we have at least a couple of people on these boards who were helped a lot by the SCD diet, but I don't see them post a lot, so it may take a while for them to see this.

WakeupNurse Newbie
WakeupNurse
Posted
  • Author

Donna- how did you finally figure out what all of your intolerances were? Going gluten & casein free was nothing compared to actually doing the SCD by the book. It's REALLY tough not to have any of the contrabands!

Oh well I'm so miserable now in my current state I guess it doesn't really matter how restrictive a diet is because I can't really eat anyway! Wow, first time in my life I've had this problem....

  • 2 weeks later...
sarah ruth Newbie
sarah ruth
Posted

Hello, I am very new to this forum, but I have tried the SCD and it's worth trying. There are so many websites dedicated to it, and many yummy cookbooks, but unless you've got crohns/colitis I think it's primary usefulness is as a healing diet. This also helps it from being overwhelming!

I know the chapter where she outlines the beginning diet is very spare, but it's really where you should focus. Fill your freezer with bone broths (www.westonaprice.org is great for tips), make the 24hr yogurt (I have a yogurmet maker and the yogurt is infinately better and more digestible than anything at the stores), make a soup every two days or so, make juice gelatin, buy some local honey, take coconut oil, and just eat very plainly and see it you are helped by it. Going gluten free has been tremendously beneficial for me, in that I no longer feel like I'm actively falling apart, but the SCD felt very healing - I'm planning on going back on it soon for a spell since the doctor-suggested gluten challenge was brutal.

www.pecanbread.com is primarily for kids but has many gluten-free/CF recipes

www.scdrecipe.com

www.breakingtheviciouscycle.info

  • 2 weeks later...
nama shivaya Explorer
nama shivaya
Posted

I've been eating veggies/fruits & poultry/fish now for over a month and I have to agree that IT'S HARD! :huh:

The up-side to this is that my gut is healing. I can tell. I also started taking a pro-biotic (gotta get the refrigerated kind and check the label for ingredients), and am taking Glutamine to help with the gut-healing process (my integrative doc recommended it.)

I was trying to eat rice with my meals, but don't seem to be tolerating it very well. I sneak a bit in here and there, but it just doesn't "feel right."

My doc wanted me to avoid red meat (for my MS), and I found I am feeling even better w/o it.

For me, it's a bit of trial and error finding "little things" I can inject into my diet to keep it interesting. For a while, I didn't even want to eat, but now have regained a normal appetite.

Sending positive diet vibes your way!

Nama

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Nancym Enthusiast
Nancym
Posted

SCD without dairy is very similar to the Paleo diet I follow. I've never been healthier, even with 2 autoimmune diseases! Grains are recent introductions to the human diet, as is dairy, and I don't think we're fully adapted to them. The same is true of plants in the nightshade family.

A bit of ingenuity and cooking skills (and googling recipes) and the diet won't seem so limited. :)

oceangirl Collaborator
oceangirl
Posted

SCD without dairy is very similar to the Paleo diet I follow. I've never been healthier, even with 2 autoimmune diseases! Grains are recent introductions to the human diet, as is dairy, and I don't think we're fully adapted to them. The same is true of plants in the nightshade family.

A bit of ingenuity and cooking skills (and googling recipes) and the diet won't seem so limited. :)

I am almost a month into the Paleo diet as well with the exception of some rice krispies at breakfast which I don't THINK bother me. Also, the fructose in honey is a killer for me and I do eat some turbinado sugar in peppermint tea. I'd had a bad couple months after 6 months gluten-free and about 10 gluten-lite and this is the best I've felt. (Except a bit hungry) I'd like to use the yogurt from the SCD but I haven't been having dairy and it's excluded from the Paleo diet. I figured if after a month there was no change, I'd stop. Now I think I'll continue for awhile to see if I can improve some more. Right now I also exclude (besides gluten): Dairy, corn, soy, honey, potatos, sweet potatos, tomatos, chocolate... I basically eat: Fish (mostly salmon and tuna), red meat, a LITTLE chicken (it's suspect), summer squash, homemade rice milk (I know, not paleo), tons of bananas, butternut and winter squashes, garlic, shallots, a little lettuce, carrots, a little white wine- geez, that's about it! I react horribly to beets and can't digest them (which is weird; I thought they were supposed to be easy to digest!) Anyway, if you are continuing to have trouble, I think the SCD or Paleo is worth a try. I wish very good health to you!

lisa

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