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CREST Syndrome

CREST Syndrome2014-02-12T03:57:06+00:00
Viewing 11 posts - 1 through 11 (of 11 total)
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  • sophielu
    Participant
    Post count: 6

    I am female 54yo and have had CREST Syndrome for 14 years. Apart from the Raynauds, my main issue is Esophagitis/GERD caused by damage to the LES from the schleroderma. I have been on PPI’s for 13 years (Nexium) ranging from between 20-60mg a day. In the last month I have reduced back down to 20mg and am trying to stop it completely. My problem is that I don’t have a proper functioning LES and always have acid rising. Any help/advise on this condition and what to eat for relief much appreciated.

    Norm Robillard
    Keymaster
    Post count: 438

    Hi Sophie, Thanks for posting. SIBO and carbohydrate malbsorption is not uncommon in systemic sclerosis. If this were the case, the Fast Tract Diet would be a supportive approach that can support your effort to reduce PPIs. If you have SIBO, the last thing you want to do if overfeed the bacteria in your gut bringing on more reflux symptoms. There is also the idea that minimizing SIBO may reduce leaky gut and exacerbation of autoimmune reactions. It’s worth a try.
    http://www.ncbi.nlm.nih.gov/pubmed/18422815

    sophielu
    Participant
    Post count: 6

    Thanks for the prompt reply, which book would be better for me, Fast Tract Digestion IBS or the Heartburn/Gerd one. Also I’ve been told eating a very small potato, raw and grated before bedtime is beneficial, what are your thoughts?

    Norm Robillard
    Keymaster
    Post count: 438

    I would recommend FTD Heartburn. If I had Esophagitis/GERD, the last thing I would want to eat is a raw potato. Some people think raw potatoes or raw unmodified potato starch may actually help SIBO, but given that many people who try this actually get GERD symptoms, I don’t recommend the approach. This is something you might experiment with after you get your symptoms under control.

    sophielu
    Participant
    Post count: 6

    Thanks again, I live in Australia so will try to order an ebook version if available. Had the worst burning/reflux again last night, it’s been four days that I’ve been off the Nexium and I can manage the days with food (as eating seems to help) but I can’t seem to get through the night 🙁

    Norm Robillard
    Keymaster
    Post count: 438

    Great that your getting the book. Reflux is no fun. The ebook is available regardless of location, but we do ship to Australia if you order from this site.

    sophielu
    Participant
    Post count: 6

    Hey Norm, I got the digital version of the book the other day and am keen to start eliminating certain foods to see how I go. I notice in the book though, that you mention in the motility issue chapter that (Crohn’s disease or schleroderma) are outside the scope of the book. Does this mean I probably won’t have any improvement because of existing damage/scarring to my esophagus and LES. As mentioned earlier I have CREST Syndrome (for 13 years now) and I know I have existing damage, I also have Sjogrens Syndrome, so less saliva enzymes to start off the digestive process. I read that long term PPI users have trouble stopping the drug because when they do reflux/Gerd comes back with a vengeance. I tried to stop a couple of weeks ago and lasted about five days, the first two were ok but day 3-5 I was on fire and in the worst pain in my upper chest/throat, the next day I was back taking Nexium. Any other recommendations other than what’s in the book?

    JI
    Participant
    Post count: 180

    Hi sophielu,
    You may need to step down the Nexium gradually. The People’s Pharmacy website has advice on this: http://www.peoplespharmacy.com/2014/02/10/multiple-strategies-may-be-needed-to-get-off-nexium/ They have advice on many health topics at this website.
    I believe that the download of their Digestive Disorders handbook costs $2. You can also do an internet search to find out how others stopped PPI’s. I hope you are feeling better.

    Norm Robillard
    Keymaster
    Post count: 438

    Sophie,
    That statement just means that the diet won’t change the underlying condition – but it will be supportive for the bacterial overgrowth itself. I see JI has a suggestion for stepping down on the PPIs. Check with your doctor, but most people wean off over a period of about a week or two. Being on the diet will help. You could used Tums as a rescue medicine if you need one.

    sophielu
    Participant
    Post count: 6

    Started yesterday, will let you know how I go. Btw I wondering about the FP of a few foods
    -eggs
    -quinoa
    -different protein powders (whey, soy, pea, hemp)
    -chia seeds
    -coconut oil

    Norm Robillard
    Keymaster
    Post count: 438

    Hi Sophie,
    From an old post: Though I can’t trace the glycemic index of quinoa to it’s original source, the quinoa.net site lists quinoa as having a GI of 35. If that is the case, a quarter cup of quinoa (dry) would have 28 grams net carbs and 3 grams of fiber. That would give an FP of about 18 grams.
    -eggs – 0 grams FP
    -quinoa – see above.
    -different protein powders (whey, soy, pea, hemp) – Most have 0 grams FP unless there is added sugar. The FP for sugar is approximately half the sugar grams.
    -chia seeds – Look at the Fiber content which is equal to the FP.
    -coconut oil – 0 grams FP.

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