Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; SOME CONTRADICTIONS

Hi again everyone,

Thank you very much for all the information, suggestions and all the support we found here.
I'm still investigating and cooking no starch for my family. I’m testing with iodine and we have also removed the cheese and yogurt and sugar. It is still early to see all the results, but the boy is unwell. Too much stress with school, exams, etc. to withstand the constant pain in his back. He's just a kid and never before had he felt the symptoms. The diet does not get significant results yet. Surely we would have to wait longer but the boy was discouraged.

Yesterday we went to our rheumatologist. The visit has been nice and friendly. With all the information provided - family history, symptoms, HLA B27 +, etc. - the diagnosis was easy (onset of AS). We finish with a lot of roles: a request for MRI, blood tests, recommendation of exercise and a prescription for naproxen. In Spain we have an excellent free health care system for everyone, but as in other countries, closely linked to the pharmaceutical industry but with no interest in alternatives. We've talked about diet and, obviously, Dr. told us that this is not scientifically proven but there is no contraindication. We have her "permission" to continue, for now. Return within one month.

Today we have started with naproxen and he is more relieved. He'll take this, at least until he recovers well and trust. Meanwhile we will continue with the strict diet, but now this raises some questions:

How to tell if the improvement is due to diet or anti-inflammatory?
How to counteract the unwanted effect of anti-inflammatory in the gut?

I hope that we can reduce drug dose when the boy is better, to see what happens. I I trust completely in possibilities of diet.

As a rheumatologist, I think she wants to see the response to naproxen, to decide whether to prescribe NSAID other or biological later. They believe that these treatments can be very effective when prescribed early in the disease. I do not know. Too much contradiction.

All your comments will be great help to us

Thank you very much
Health!

Maiga

Hi there, could he still be eating something starchy but you are not aware of it? If you list what he is eating maybe we can help see if there is an obvious problem there.

It's OK to take naproxen while he waits for the diet to become effective. My husband slowly reduced his anti-inflammatory dose over a period of 9 months before he stopped them completely.

How is your son coping with the diet? It seems very strict to be cutting out dairy and sugar straight away....many people just go strict no starch for a couple of months and wait to see if they have results before cutting out further things from their diet.

The biologics are very helpful for some people so if you don't have success on the diet they would be worth a try.

All the best

Hello Maiga,

The NSAIDS are a catch-22. You need to heal your gut, but you also need to reduce / remove the inflammation. NSAIDS over time can really wreak havoc to your gut but provide instant relief to inflammation & pain.

As a person being on Enbrel since 2003, I tried to never take what the doctors prescribed. There can be many lasting side effects to taking the biologic, but it should do wonders in reducing the symptoms - it did well for me.

Now that I'm "detoxing" from both, I'm taking as little NSAIDS and Enbrel as I can get away with (I've been on a modified and stricter NSD diet for almost 2 months). But getting off a biologic can be like getting off a real drug - there will be side effects and you will feel like crap.

Pretty depressing, I know. But here's some things that I've found out:

1. Try subbing supplements like Zyflamend over a 1-2 month period. From what I've read, it's the closest thing to a NSAID without destroying your gut.
2. Find herbal antibiotics that battle the Kleb & other nasty bacteria in your gut. Right now I'm using a combination of Pyloricin & Gut Repair I (Immunoglobulin formula).
3. If it can be done, try fasting. There are a few listed in the forums here like the water or apple fast.
4. Most importantly, don't eat starches!

Hi Maiga and welcome to the board. From Espania, verdad? I speak un poquito de espaniol. Happy that you joined us.

How old is your little boy? I would add, according to his age that he find a support group for children with chronic diseases as well. This will help him feel not so alone and that is so importante at any age. Call your local hospital to see if they have anything or a childrens hospital if one is local enough to drive to. If you can't find one then I would ask a psychologist if he should have some counseling to learn how to deal with his illness. I am doing this myself even at 54 years old. Ask his school counselor if she can help find someone and I would let her, the school nurse and the teacher know if you haven't already. I grew up with really bad asthma and my mother told as many of the adult's who were around me about it. They really helped me a lot.

Lo siento mucho your son has this disease. Por favor, stay with us and we will help you out as well along with your doctor's. Please do as much research as you can. This disease affects the whole body. Even de ojo's. Lo siento mi Spanglish is so mal!

My son is 17. The symptoms started last October 2011. His father and grandfather have AS, also an aunt and two cousins with spondylo-arthropathies associated with HLA-B27 +
We in the diet since January 2012 with mixed results.
A few days ago I wrote my first posts and got some answers in another thread.

https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=463883#Post463883

The food that we take now:
- Many non-starchy fresh fruit (orange - tangerine - apple - Mango - Kiwi - Melon - strawberries) fresh orange juice and fresh pineapple
- Nuts without starch (white almonds, California nuts, macadamia nuts, pine nuts, raspberries)
- Meat: poultry, pork, beef, ham
- Fish: salmon, tuna, hake, cod ...
- Eggs
- Green leafy vegetables: spinach, chard. Broccoli, green asparagus.
- Lettuce, tomatoes, cucumber, olives.
- Olive oil
- Black Chocolate sugar-free
- Cookies almond flour and coconut (with sesame seeds and flax seeds and black sugar or honey)
- Honey
- Supplements: Pollen and bee propolis
- Probiotics (a French brand that sold in Spain, with a little potato starch)
Ten days ago we removed - for the moment - yogurt, cheese, eggplant and zucchini are fringe foods.
Meals: 5 meals a day (3 great meals and 2 small meals).
An exception with friends: chips, this was the last time he took starch, two weeks ago.
Naxproxin is affecting your stomach a bit in just two days. I'll wait a week to see how this affects.

Thank you very much everyone.

Health!

Maiga

Hi Maiga - welcome to KA family. Sorry to hear about your son. At least a young adult so well able to take some of the responsibility for steering a good course with/through the management of the spondy beast 'smile'.

One suggestion I would make, and it can be considered a tad controversial, that of 'inflammatory foods'. Red meat is considered highly inflammatory: that will include beef and lamb. Try cutting those two foods out - for the moment. The thing is to find the level where the gut begins to heal. Once you have the healing, the inflammation goes down then you can begin to reintroduce various foods back in. Steer clear of the grains and wheat products until the gut is truly healed.

If you are going NSD - no starch diet - then that means 'no' starch, at all. And will include screening medications for starches and finding alternatives for those that are buffered with starches - v. difficult in Europe as the laboratories tend to use maltodextrin, mannitol, starches as buffers in so many medications! Stay away from all the sodas - i.e. coke and pepsi etc etc. And Aspartame - which will not help, at all.

Diets for Arthritis Inflammation, Food that Fight Inflammation
www.arthritistoday.org/conditions/rheumatoid-arthritis/nutrition-and-ra/ra-...
Diets for arthritis inflammation - If you want to control inflammation, Arthritis Today offers a comprehensive look at the foods that fight it. Use our diets for ...

Inflammatory foods are the foods which are high in toxins, ...
www.livingwithrheumatoidarthritis.com/Inflammatory-foods.html - Similarto Inflammatory foods are the foods which are high in toxins, ...
Certain foods are best left out of a healthy diet, considered inflammatory foods, read to find out why and what alternatives there are for these foods.

Anti-Inflammatory Diet & Pyramid
www.drweil.com/drw/u/PAG00361/anti-inflammatory-food-pyramid.ht... - Similarto Anti-Inflammatory Diet & Pyramid
13 Jan 2011 ... food pyramid, anti-inflammatory diet, anti-inflammatory food pyramid, diet tips, ... Autoimmune diseases such as rheumatoid arthritis and lupus ...
Inflammatory Foods & Arthritis | LIVESTRONG.COM
www.livestrong.com/article/350510-inflammatory-foods-arthritis/
5 Jan 2011 ... The inflammatory process during a normal immune system response ... under normal conditions, but in immune systems of people with arthritis the ... Inflammatory foods may aggravate or worsen arthritis symptoms and should ...

Might be of interest. We have discussed this here before so a search should find you information and tips.

Your son is very good to determine to go the dietary way - difficult road and wish him all the best. He sure does have a great supportive family - that will help every step of the way. Well done -

Go well - and remember come in here any time to ask questions, discuss, emote, whatever. And let's know how it goes for your son -

Y'all take care now -

Molly C (France)
Keeping on Keeping on (as well do)

Here are some of my thoughts based on my experiences. Your son's experiences may differ.

Fruits can be tricky - because depending on when they are picked, they may end up being starchy. The safest fruits I had before cutting out all sugar, were blackberries and blueberries. I had thought that strawberries are high in FOS - which may feed the klebs.

Pine nuts are definitely starchy. I would not eat pine nuts. I'm not sure what California nuts are, but the only nuts that I can eat are skinless almonds, walnuts, and macademia nuts. Others find that macademia nuts can trigger a reaction, so you may want to go easy on those.

Any processed meats can be trouble - so reconsider ham depending on how it is produced. A lot of ham has nitrites, which isn't generally healthy to eat either.

I had a bad reaction to asparagus, but I believe others are OK with it. It is one of the fringe foods.

I had thought that tomatoes were starchy - the ones I tried triggered a mild reaction so beware there. Also, the centers of cucumbers tend to be a little starchy.

I remember considering bee propolis, but ultimately decided against it and was able to achieve good results without it. If you continue to see no progress, you may want to reconsider this.

I would not take anything with potato starch in it. I've discovered that it only takes a little starch to trigger a reaction, so you may want to remove that as well.

Eat simple. Olive oil and salt. Avoid processed foods.

I will cross my fingers that you can find something that finds him relief, diet or otherwise. It breaks my heart to learn of young people battling this disease.

Best of luck!

Going overboard and cutting out sugar just makes the diet too difficult to stick to, especially for a teenager.

Perhaps it's easier to go low starch to begin with - something manageable - then see if there is anz improvement after a couple of months.

I didn’t get much benefit until quite a few weeks.

I certainly could not do all this no sugar, no dairy, no this, no that which some people seem to do. The diet needs to be manageable.

California nuts are walnuts.

Actually, it is difficult to follow a strict diet for an adolescent. Especially it seems almost impossible to remove all starch, but we will try.
Very interesting your contributions about food and anti-inflammatory diet. We will continue researching about this.
Thank you all for always being attentive and ready to give answers.
Health!
Maiga