Food Qs from newly self-diagnosed AS patient

Posted by: goodphyte

Food Qs from newly self-diagnosed AS patient - 12/13/19 01:32 PM

Hi! I'm new here and just getting familiar with the site. I'm so grateful to have found a resource that helps me explain my condition to friends and family as well as find ongoing support. I won't go into my whole background here, but based on the progression of my symptoms, precursors, and my HLA-B27 gene, I'm now comfortable saying that I am fighting AS, though I don't yet have a rheumatologist's 100% diagnosis (my appt is still 2 weeks away). I am on day 8 of the AIP diet, and then plan to follow a low starch/paleo approach.

My questions are this:
- Has anyone found success reducing starch content in root vegetables by pre-soaking before roasting? What about sprouting nuts? I'm already grain-free but really looking forward to reintroducing a wide variety of nuts.
- Should I go on medication (Mobic) to slow progression of joint damage or will this further damage my gut microbiome?
- Is anyone else in a position like mine where the practitioner is reluctant to diagnose until ALL AS symptoms are present? For example, I don't have eye issues currently but I'm now experiencing bilateral SI pain (and associated glute and hip flexor issues because of limping, always worse in bed and in the morning), pain and tightness along my right ribs such that deep breathing is hard, and a variety of other preexisting conditions in alignment with a diagnosis of autoimmune disease. Not to mention the HLA-B27 gene.

I'm sure I'll have more questions; thanks for reading and being part of this really reassuring resource!

Stacy
Posted by: Kellybells

Re: Food Qs from newly self-diagnosed AS patient - 12/13/19 07:46 PM

Hi goodphyte and welcome!

Early on I tried soaking carrots to remove the starch (like you do with fries). But starch is only released from the cut surface, not the inside, so while it might help with carrots (which are fairly low starch to begin with) it probably won't do much for potatoes, parsnips or sweet potatoes. They'll still be too starchy to eat.

Fortunately, there are some very low starch root vegetables: rutabaga, celery root, beets and carrots. Roasted rutabaga "fries" are a winter staple and mashed rutabaga and celery root makes a superior topping for shepherd's pie.

Keep in mind that starch content varies, so I test with iodine. Starch varies because frost turns some of the starches to sugar. Problem is, there's no way to know the harvest date. So this year I went the extra mile and grew my own root veg to harvest after frost (some of them are still in the ground even now!)

As for having a hard time getting a diagnosis, that's a common story here. When my test results came back negative (which is not uncommon) my rheumatologist actually dismissed me with mindfulness pamphlets. Fortunately, by that time I had found this forum and the NSD and I've never looked back.

Diagnosis was only important to me as a path to a (natural) solution so I just gave up. I was never going to take their drugs anyways because of the side effects and risks, and they have nothing else to offer.

And it hasn't been necessary anyways, because NSD has done wonders. My joints not only stopped getting worse, they've improved. But that's just me...you'll have to decide for yourself.
Posted by: gbash

Re: Food Qs from newly self-diagnosed AS patient - 12/14/19 07:26 AM

Hello,

I also self diagnosed after years of being dismissed by my GP. My own research (in the very early days of the internet), finally revealed that my symptoms fully lined up with AS. My symptoms were worse in the mornings and relieved with activity (once I battled through the pain), only to be worse after I then cooled down. Just getting out of bed was painful. Most of my pain was in my hips and ribs. I also didn't have eye problems. I would get horrible spasms in my ribs that would even make breathing painful at times (intercostal neuralgia).

A rheumatologists then confirmed the AS, which was now almost 20 years ago. My rheumy put me on Enbrel, which worked wondrously until it turned out to be causing me a lot of nerve damage after 4 years. Sulfasalazine turned out just to upset my stomach, I had little recourse. The pain was even worse than before Enbrel. That's when I tried the low-starch diet, which reduced the pain levels and made life worthwhile again.

Keep in mind that what works for one person may not work for all. I have not had any problems with carrots (in moderation), but other root crops do cause me problems. The low or no-starch diet requires a lot of trial and error. I took about a year to find out what all affected me. At first, my diet was quite bland and disheartening. I then figured out that almond and coconut flour could be used to make many baked goods that I had been missing. Almond, pecans, and walnuts all seem to be fine. Those are not actually nuts but drupes, which are low in starch content.

Good luck!

--Greg
Posted by: DragonSlayer

Re: Food Qs from newly self-diagnosed AS patient - 12/17/19 10:03 AM

WELCOME, goodphyte:


MOBIC is an NSAID and cannot slow progression (it is not a DMARD) and can in fact increase symptoms and damage, long-term. If You haven't used it yet, I hope You will never require any of these drugs! Dr. Mercola suggests taking borage seed oil and we need quite a dosage: 6g or so to avoid the morning stiffness, and please take the EVOliveOil by teaspoonful 10X or more daily especially before each meal.

Good for You trying diet; The NSD and Diet Forum here is an excellent resource.

Quote:
- Is anyone else in a position like mine where the practitioner is reluctant to diagnose until ALL AS symptoms are present? For example, I don't have eye issues currently but I'm now experiencing bilateral SI pain (and associated glute and hip flexor issues because of limping, always worse in bed and in the morning), pain and tightness along my right ribs such that deep breathing is hard, and a variety of other preexisting conditions in alignment with a diagnosis of autoimmune disease. Not to mention the HLA-B27 gene.


Do You think that permanent skeletal damage is a reasonable price to pay for a diagnosis? This is benign neglect where doctors wait-and-see what nature does to us to do their work for them! Ask any AS - "specialist" "How can I PREVENT damage, especially the characteristic SIJ fusion?" They usually do not have an answer, but MAYBE biologic drugs will slow down the process so that, instead of fusion in 8 years, it will happen in 16 years!

Carol Sinclair NEVER had fusion in 8, 16, 40 and more years because she had to fix her IBS related to "pre-AS" first; we should each be so lucky! Please check out the San Antonio notes in the AS and RA Papers section, I think; Item number (5). Good start for NSD is her "The IBS Low-Starch Diet."

Again WELCOME to the restoration of Your
HEALTH,

John
Posted by: goodphyte

Re: Food Qs from newly self-diagnosed AS patient - 12/23/19 03:54 AM

Thank you so much for all these thoughtful responses! You give me hope! I'm 19 days in to the AIP diet (lots of bone broth, tons of greens), and look forward to bringing back eggs, nuts and other things to make the LSD/NSD diet feasible for me. I hate knowing that yes indeed I'm going to have to say adios, for the most part, to my beloved sweet potato, but am grateful to learn that carrots and beets should be less of a problem, especially fall/winter crops.

Thank you thank you thank you!