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#518024 - 01/07/18 04:16 AM Re: AS and stiffness in the morning [Re: Robin_H]
Frederick Offline
Second_Degree_AS_Kicker

Registered: 03/28/06
Posts: 241
Originally Posted By Robin_H
[quote=Kellybells]

This is supposed to be a positive and supportive space. Yet your posts on the subject of diet are neither respectful nor constructive. Please just stop.


Perhaps it is the truth that you find difficult to take. My posts aren't intended to be respectful nor constructive just informative. With suffering A.S. for over 55 years this is just how I find things to be. Surely I am permitted my freedom of speech as much as anyone else. If you wish to keep this site to just the one point of view then perhaps the best thing for you to do is to forget about freedom of speech and ban off the Forum.

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#518025 - 01/07/18 07:02 AM Re: AS and stiffness in the morning [Re: Frederick]
Kellybells Offline
Journeyman_AS_Kicker

Registered: 01/21/17
Posts: 110
Loc: Toronto, ON
Originally Posted By Frederick

My posts aren't intended to be respectful nor constructive just informative. With suffering A.S. for over 55 years this is just how I find things to be. Surely I am permitted my freedom of speech as much as anyone else. If you wish to keep this site to just the one point of view then perhaps the best thing for you to do is to forget about freedom of speech and ban off the Forum.

No, your posts on diet are not informative. You offer no evidence, no research, nothing other than your uninformed opinion and ongoing disparagement. Calling NSD "witchcraft"and "mumbo jumbo" is not informative, it's offensive.

There are rules of conduct for this site. And you violate them every time you post about diet. We are all doing our best, in the way we each choose, to deal with this awful disease. If you can't be respectful of other community members' treatment choices then stay silent. Please stop.



Edited by Kellybells (01/07/18 07:51 AM)
_________________________
Suspected SpA. HLA B27, xray, u/sound, blood tests all -ve. Ancient history of plantar fasciitis, SI joint pain, knee arthritis. Recent history of tendinitis, neck pain, debilitating finger pain and stiffness (especially mornings). No diagnosis, no meds.

2010 - stopped eating dairy
2012 - stopped eating wheat
2014 - stopped eating all grains
Jan 2017 - discovered NSD - 98% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner

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#518026 - 01/07/18 09:37 AM Re: AS and stiffness in the morning [Re: Boxer]
WendyR Offline


Registered: 12/23/08
Posts: 5230
Loc: BC, Canada
I think we can all appreciate the opinions of others but KA is a support site and we love this place because of the diversity of others. We all have different opinions, lives and treatment plans. Keep this in mind when posting.
_________________________
Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil

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#518037 - 01/08/18 05:07 AM Re: AS and stiffness in the morning [Re: WendyR]
Frederick Offline
Second_Degree_AS_Kicker

Registered: 03/28/06
Posts: 241
Originally Posted By WendyR
I think we can all appreciate the opinions of others but KA is a support site and we love this place because of the diversity of others. We all have different opinions, lives and treatment plans. Keep this in mind when posting.


So I hope my opinions are as appreciated as those of other members.

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#518063 - 01/13/18 12:20 PM Re: AS and stiffness in the morning [Re: Frederick]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21326
Loc: Upstate NY
Originally Posted By Frederick
Originally Posted By Kellybells


The stiffness in the morning is definitely because of inflammation.
Yes I can agree with that


If your pain and stiffness overall have improved but you are still getting morning pain it could mean you are eating foods you should not be eating.
There is no proof that diet has any affect re. A.S. Why do you suppose it is that Rheumatologists don't recommend diet as a treatment for A.S.



Actually, there is quite a bit of literature that talks about food sensitivities, leaky gut, autoinflammatory / autoimmune disease. My rheumatologist is a strong believer in this.

I had a naturopath order blood work, and with IgA / IgG testing, it was determined that I was highly sensitive to the protein casein (found in milk).

I did a lot of reading and discovered that they believe just as many people have a sensitivity to cow casein as to gluten.

And this made a lot of sense to me because when my stomach was at its worst, and I kept a food / symptom diary, only a few foods made me feel a lot worse, mostly anything too acidic and dairy....so I avoided the foods that made my stomach more inflamed, including dairy.

Now I eat only goat or sheep cheese (and not sure if I'm only sensitive to cow casein or to goat and sheep casein too, so I eat goat and sheep dairy in very small amounts and no cow dairy).

My gastroenterologist tested me for celiac: IgA/IgG antibody testing, HLADQ gene testing, and biopsy of the start of my small intestine, all negative. So for me, its not gluten, but casein that is the biggest culprit.

Also, my rheumy had me do IgG / IgA testing for S. cerevisiae (Bakers yeast, that used in beer and bread). I thought he was crazy, but then I read, and discovered that a large percentage of those with crohns are sensitive to this yeast. And my results came back positive that I too am sensitive to this yeast, so I also limit yeast products like bread, pizza crust, etc...actually pizza in general since I can't have the crust or the cheese...I have my eye on making a cauliflower crust one of these days, using goat or sheep cheese, but too, I think tomato sauce / tomatoes bother me too, so maybe pizza is just off the table.

Not sure how I feel about the "no starch diet", but since a lot of people here swear by it, I just stay out of it, since for me, it would just be opinion.

So for me, diet has helped, but just not enough. Maybe all those years of damage to the gut just takes a long time to heal?

Too, they've put some children with autism on casein free, gluten free diets, and it has helped them.

I do think diet can help a lot of people with a lot of conditions, but teasing out what foods we are sensitive to, can perhaps be a challenge. I think the first step is getting IgA/IgG testing done..that's what they do for celiac disease, against gluten...think it should be standard for other common "allergens" as well.

This is a slightly different idea than the "starch free" diet, but I think an equally valid one to explore...food allergies / sensitivities.

Too, I find I do well with certain foods and not so well with others....my gut seems to need prebiotics and probiotics (in the form of foods and pills).
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

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#518064 - 01/13/18 12:26 PM Re: AS and stiffness in the morning [Re: Boxer]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21326
Loc: Upstate NY
Stiffness in the morning? I think its the inflammation that leads to fluid in the joints and its the fluid that makes joints feel stiff and in my case, sometimes too loose as well...or so say my chiro and doctors..that's why I "overrotate" my SI joint, and why my ribs subluxate....my chiro can feel the fluid in my joints at times....

so, inflammation --> fluid -->stiffness

As for diet, see my longer response above:

for me, I'm highly sensitive to casein, at least cow casein, so I am largely dairy free.

Also, I'm sensitive to S cerevisiae yeast, so limited bread and other yeasty foods.

I had IgA / IgG antibody food and yeast testing done.

Also had IgA/IgG antibody testing, HLA DQ gene testing, and upper small intestine biopsy done for celiac...for me, gluten isn't the issue, but casein, yeast, and maybe egg is, so I avoid those food items.

I'm kinda low starch anyway due to the diabetes, but its really the dairy and yeast that I think are my biggest problems....I have real proof for the dairy doing a number on my gastritis, so assuming its a problem in general.
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

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#518065 - 01/13/18 12:59 PM Re: AS and stiffness in the morning [Re: Boxer]
jackson Offline
New_Member

Registered: 04/13/17
Posts: 16
I still like you, Fred. i think a lot of rheumatologists don’t talk about diet because they were trained to diagnosis and treat with drugs. Also, they probably size up the majority of their patients and conclude those patients would not be willing or possess the will power to make hard dietary changes. Maybe there’s also a fair amount that think there is no correlation.

I loved your long post, sue. I think like you and your rheumy do. I also tested for the same dietary irritations as you and celiac gene positive as well. Acidity was also a problem. Finally giving up my beloved coffee was the final game changer to a happy gut.

It’s taken time and I’ve had a setback or two but once I got my diet down I’ve been able to enjoy a largely drug and pain free quality of life with a good range of motion relative to the fusion I have.



Edited by jackson (01/13/18 01:02 PM)

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#518066 - 01/13/18 10:28 PM Re: AS and stiffness in the morning [Re: Boxer]
Boxer Offline
Member

Registered: 08/29/12
Posts: 35
My diet worked for me for aproximately 5 years.
I kicked Gluten, Lactose and legumes Out of My diet an IT worked great for me
I was thinking about my Last months and i saw that i was a little Bit lazy about it.
Now i stay realy strict With my diet since 1 Werk but i need nsaid actually. I Hope IT will be better soon. Now i try to kick nightshades also because maybe they Trigger some inflamations now.
I don't know how Long it Takes To get "clean" but i Hope my diet will Work for me again.
Pls Stop writing Something that nutrition does Not have any effect. For me i am 100% Sure that nutrition is very important For me. But actually nsaids are also very important.

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#518069 - 01/13/18 11:24 PM Re: AS and stiffness in the morning [Re: Sue22]
Robin_H Online   content
Second_Degree_AS_Kicker

Registered: 09/13/15
Posts: 215
Loc: Hubei, China
Hi again Sue:

You eat goat and sheep cheese. Are those hard or soft cheeses? Are there cow-based cheeses that you can eat and if so are they soft?

Soft cheeses have less mold/yeast produced micotoxin in them in comparison to hard cheeses. Since you are sensitive to Baker's yeast perhaps you have a sensitivity to moulds/fungi in general for some reason. You were tested for HLA-DRBQ gene which is being used to check for detoxification pathway defects that exist in some people. But I got it -- you definitely can't tolerate the casein in cow's milk which makes the presence of mould byproducts irrelevant.

A better question would be, "do you find a difference in tolerance between hard and soft cheeses when eating goat or sheep cheese?"

It was more than 15 years ago that I finally started to realize that I would feel, pain, fatigue, toxic, body anxiety and brain fog a few hours after eating potatoes, corn and pizza; however I noticed the symptoms ten years earlier but could not correlate them with anything. I speculated as to if it was a lactose intolerance or a problem with grains/gluten. Since potatoes are not a grain I discounted the idea of gluten but I could be wrong since now that I have stopped eating breads I no longer have a tightness that runs up my esophagus. I had that tightness from around the age of 25 (after a flood) until a year after moving to Asia.

Obviously for potatoes it is either the starch (obviously now) or the compounds in it due to it being in the nightshade family of plants that cause symptoms in me. Not all nightshades are equal. However, the crust and cheese in pizza can both have micotoxins in common. I suspect that I developed a sensitivity to grain after mould/fungus/yeast set up shop on my gut and body.

I am quite fixated on the idea that it was mould illness that was the first major insult to my gut that set up a long-term, unrecognized condition that initiated low-level symptoms of spondylitis that my GP labeled as fibromyalgia. They were reversible warning symptoms that I had for 20 years. Not until the next major insult did I begin to see the likely relationships between environmental and symptomatic history. Now it feels like I have crossed a point of no return. If I only knew in 2012 what I know now then I believe that I could have avoided recent damage and even been 100% symptom free at most times.

We probably start with very few hidden triggers that over time do damage and we end up with a lot of new triggers/sensitivities and complications. I speculate that fungi are a major suspect for a large portion of people which open up the gut to many small-time criminals that are considered common and non-pathogenic. Fungus has a bad attitude and can be a bad influence on the normally well behaved guests. Fungus is a tough guest to throw out of the house and once fungus breaks the house rules the rest of the guests start throwing a party!

Regarding the "feeling" of inflammation: Besides the obvious crackling in joints and changes in the collagen connective tissues there are the overlooked fluidity of the Extracellular Matrix and the health of the lymph system. Ancient Ayurvedic medical practices regarding food, gut function and vitality are now gaining backing by science. Essentially, the gut is everything! Almost! Air is important too! I think that contaminated air was the first primary, chronic pathway into my body. For eleven years it was in a water damaged building. Not long later it was in a chemical plant. Food is not so chronic if we don't eat the same, abusive foods and drinks everyday -- indulge only on special occasions.

Thorough testing in nutritional status, food allergies, heavy metal buildup and other signals, during checkups for early illness detection would be ideal for prevention. The technology is there through micro-arrays and databases of the human metabalome but medical practice is more than fifteen years behind research. If the use of those tools was extensive then they would cost pennies in comparison to the very expensive and labour intensive techniques used in many labs..

Reducing toxic build up while being at rest is not easy when we have lived enough years to have collected a lot of gunk from the environment. The division between our "selves" and the world gradually blurs after we are born until we are truly one with the universe again -- essentially dirt! Pardond my philosophical digression... I feel like I am being eaten by my microbiome before I am even dead!

If you don't keep moving the bugs will think that you're dead and decided to eat you!
_________________________
HLA-B27 neg; Mis-diagnosed with fibromyalgia in mid-20s.
Vague AS symptoms in 20s and early 30s (no diagnosis).
During age 47 (2015) from NSAID use developed complete axial inflammation (started from from skull and progressed down to sacrum). Included psoriasis. Trigger in scull was reverse blockage in a SCUBA mishap in 2013. Straw that broke the camels back was over use of NSAIDs. NSD works well but not perfect. Strong involvement between symptoms and gut integrity.

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#518070 - 01/13/18 11:46 PM Re: AS and stiffness in the morning [Re: jackson]
Robin_H Online   content
Second_Degree_AS_Kicker

Registered: 09/13/15
Posts: 215
Loc: Hubei, China
Hi Jackson:

Coffee, dark chocolate and nuts are my vices. I notice that I quickly improve once I stop nuts and chocolate, but there is no obvious improvement when I quite coffee. In fact I just feel worse in a few ways: it seems to reduce pain, stiffness and improve mood. Coffee is probably my biggest hurdle and must be the main chronic barrier in gut healing. I imagine that giving up coffee is like entering the Valley of Death before entering Eden.

How long did it take before you noticed reduction in symptoms? Did reduction in symptoms come before or after you adjusted to living without coffee? Was coffee effecting your ability to rest?

Thanks for the info in advance.

Kevin
_________________________
HLA-B27 neg; Mis-diagnosed with fibromyalgia in mid-20s.
Vague AS symptoms in 20s and early 30s (no diagnosis).
During age 47 (2015) from NSAID use developed complete axial inflammation (started from from skull and progressed down to sacrum). Included psoriasis. Trigger in scull was reverse blockage in a SCUBA mishap in 2013. Straw that broke the camels back was over use of NSAIDs. NSD works well but not perfect. Strong involvement between symptoms and gut integrity.

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