Seb, your last comment made me realist that it might be useful for HIGATT to pull out some of the information from Prof Ebringer about the diet and klebiella theory for her mum. I wouldn't necessarily use this in most cases, as his work is quite old and hasn't been added to by other researchers, but HIGATT, if you are looking for something "scientific" but readable to show your mum about why you should try the NSD, then definitely check it out. Some info is here on this website under "London AS diet" on the sidebar on the left of the page.

HIGATT, I think the best thing you can do is to get her to read as much as possible about AS on the Internet. Also, try to get her to understand that you might need to stay on a gluten free diet, as there are so many people who cannot eat gluten without gastric problems. It will be easier to go from gluten free to starch free as time goes by. Try to help out by finding recipes and cooking some starch free foods to make it easier for her.

Also keep in mind that a starch free diet costs a lot more then a normal diet and it takes extra time to find the ingredients and cook them. Let her know how much you appreciate all that she does for you. Try to help around the house as much as possible to lighten her load.

It might help if you could get your Rheumy to explain that as AS is a life long problem, like diabetes.

As a Christian, I believe that the Lord helps us by letting us humans learn so much about science and medicine. He helps by guiding the Doctor's hands and minds to heal or help us. My Pastor has a gift for healing. When he prays for me, and other people in our church with illness or degenerative conditions like arthritis or AS, it does help our pain. His prayers don't take away or replace our doctors, they help to make the doctors treatment work better.

I remember my mum crying when I started doing the NSD. She didn't understand why, and maybe it was also the culmination of years of distress at seeing me with this health problem. Did she think I was going to die if I didn't eat bread and rice?

Anyway, eventually my whole family could see clearly how dramatically my health had turned around for the better on the NSD. Even my sister, a medical doctor, eventually said that medical science had failed me. My health had after all deteriorated whilst under my rheumatologists care - I was prescribed NSAID's and I think I must have tried every kind of NSAID there was before giving up on them due to the ever worsening undesirable side effects.

The NSD took a while to get a handle on, and I went into this change in stages. For a while I relied on rice as my main source of carbs.. and that was a good starting point for me as I tolerated it better than other starches.

Hello Higatt,

Dealing with family and friends can sometimes be very stressful when living with chronic diseases, it is hard for them to understand.

You have to try and educate them, but as they do not walk in your shoes, they will never have a full appreciation.

My father had AS, he blazed the trail with family understanding. When I started diet, he nor my mom understood it... do not think they ever fully accepted it, but see that I do very well with it. My wife is great in regards to understanding with diet.

Hope you can find some compassion from family members.

Tim

Hi cemc,

Thank you for your comments. I really appreciate them. I didn't think I'd get much reply, but people here actually take the time to type stuff out and give advice. Thank you.

I think I will print out some of the information on the sidebar tomorrow and let her read it. If she still has problems with understanding this, I think I may make an appointment with one of the pastors at church. I think one of the things that's also hard is having to explain myself for certain tasks or responsibilities that my mom expects me to perform, and I hate making excuses (even though they're not really excuses...they feel like it). I don't enjoy being called lazy when I choose to come home instead of pick up my guitar and bring it home because I was feeling really tired and my lower back felt stiff. I don't enjoy explaining how I feel either...I'm the type of person that doesn't like talking about ME and MY PAINS. Perhaps I can learn to do it in a more graceful way...Any suggestions? lol

I've tried the low starch diet for about 3 months. I'm not sure if it was gluten free or not. I didn't try eliminating food or figuring out "trigger foods." I simply elimated dairy, sugar and starchy foods as best as I could. If I consumed trace amounts, I didn't know about it. During those 3 months, I still had pain on and off, and I was taking Naproxen 2-3 times a day. I remember a time I had to stop for awhile because it was causing me nausea and weird stomach upset. When I started eating breads and starchy foods after those 3 months, I couldn't stop myself. It's been almost a year since those 3 months, and I know I need to make a change. I can't continue eating medicine forever like this and ignore it. I even missed my last appointment with the specialist in April. I haven't seen him for about a year now. I'm not quite sure where to start with this low starch diet, but I posted in the diet forum about juice fasting. Someone mentioned that a fruit fast would be beneficial if I was still taking medicine, so I think I will try that. How does one figure out what foods are trigger foods? It seems so tedious.

Also, how reliable is Professor Ebringer's research? Has there been new research done?

Thank you,
HIGATT

Yeah...come to think of it, I think I'm also in denial. Perhaps not as much as my mom, but a little...I don't want to think that I'll have this for the rest of my life. I guess I could think of it this way: As long as I stick to the diet, my health will get better, and hopefully stay better.

I don't want my spine to fuse, and I don't want surgery in the future. I want to be able to dance, run and get married one day. I'd like to have children as well. I'd like to travel around the world, and feel the earth with my walking feet. I'd like to be positive and think that I will never experience the pain that I did a few years ago -- wheelchair bound and all. I've gotten much better since then, but I don't forget what it feels like when pain creeps up all of a sudden, and my world flips upside down. Is it normal to feel sad...I feel misunderstood, overlooked and forgotten. Do any of you feel this way?

I'm glad to hear your husband is doing well. During those 8 years, has he ever made a mistake/caved in? How has he figured out his trigger foods?

Thank you,
HIGATT

Thanks, seb, for relating with me. I remember when I went on the low starch diet, which lasted for 3 months, I felt pressure from my friends. They thought I wasn't eating enough because I was losing weight. I even went one day on a water fast, and I had no pain, but I was so tired. The weight I lost and the low starch diet, combined with the fast made me feel a whole let better, but my friends didn't think it was healthy. My purpose is not to go anorexic. I'm just trying to decrease pain. I don't think they fully understood my situation, and I didn't feel like always talking to them about it. I don't like sounding like I'm complaining or always talking about my problems. I don't like saying I'm in pain or I can't do something because of pain/tiredness. My mom thinks I shouldn't be tired because I'm still young. I sometimes feel pressure from every side, but mostly when my mom says stuff to me once in awhile that affect me negatively. I've learned to not take it personally, even though every part of me wants to explain myself and cry out for understanding. Sometimes I just get too tired to say anything...like right now actually. I love my mom...She came back home today talking to me about online dating. She's been single ever since I was born, so a few years ago she started online dating. I want her to be safe...I want her to be married to an amazing man as well.

I live with just my mom. The rest of my family are in a different country. I have friends and church friends, but I don't think it's quite the same...I'm glad you have your father to encourage you and understand you.

Perhaps the low starch diet won't be so expensive if I just eat apples and lettuce for my entire life. Canned tuna works
too.

Thanks for being on this site and taking your time to type...

HIGATT

Hi avonldy,

I like your advice about starting with gluten free, then going low starch. How would I know whether certain foods are gluten free or not, such as popcorn? I enjoy kettle popcorn...But if I have to give it up, I will, or perhaps find a replacement. Do people usually give up refined sugar on this diet? or do they consume a certain amount? I know that sugar is proinflammatory...

Thanks for your encouragement. I'm glad to see a Christian here too! I wasn't sure if I'd be the odd one out in this situation. This area of healing and Jesus' ministry seems complicated, but I've been learning lots. There are so many ways people get healed, and even though I don't understand why some people get healed instantaneously, and some get better slowly, or some have to live with it for the rest of their lives until Jesus comes back, I know for certain that Jesus died for me so that I can live life to the fullest. This topic has been something I've been learning a lot about, and hope is the only thing I have to hold on to, even when nothing else makes sense. I remember feeling very depressed about a year and a half ago. I felt so depressed I wished I were dead. I didn't understand why God would create me and let me suffer for the rest of my life. I think it's worse then death; it's like a very slow and painful death. But I'm thankful for many friends at church who pray for me constantly, and things have definitely gotten better. I pray that it will continue to get better, and that my relationship with my mom will get better too.

There is a lot of info on the internet about gluten free diets - you can get advice and download guides from a lot of the Coeliac/celiac society websites - most countries have one. for gluten free you have to avoid wheat, barley and rye and everything made from them. Oats can also be a problem because they often have some wheat contamination. Corn/maize is usually fine for gluten free, and so is rice. Rice seems to be the best tolerated grain or starch generally, so you could start by cutting out all other grains and potatoes and just keep rice. Did I pick up somewhere that you are asian? If so, then watch out for soy sauce and miso - soy sauce almost always contains wheat (you can get wheat free tamari sauce) and miso is often from barley (you can get rice miso instead).

If you are tired on a NSD or GF diet, then boost up the protein and fats a bit (make sure they are the good fats, not trans-fats and other bad ones) - that will help keep up the weight too. A lot of veges and fruit contain some starch, but if you want to start off with just low-starch, then you could just avoid the obviously starchy ones (like potatoes sweet potato). All grains are starchy, but as I said, rice is sometimes better tolerated than others, so if you have to keep a bit of starch in your diet to start with, make it rice.

A lot of folk will suggest giving up dairy as one of the first things to do with a diet change, but because dairy can be so good for a lot of things (protein, calcium, etc) I'd keep it in your diet until after you see what happens when you give up grains. You may find you don't need to give it up. In coeliac disease, dairy intolerance only happens when your gut is in a bad state - once on a GF diet, it heals well enough that dairy is usually tolerated again. (its because dairy digestion relies on healthy small intestinal villi producing lactase, and these are kind of worn away in active coeliac disease).

On a slightly different note, if the only treatment you have been offered is NSAIDs, then its time to go back to your rheumatologist and see what else is available. Some of the other drugs (like the anti-tnfs) might sound scary, but they can be absolutely wonderful for a lot of folk, and the real risks are actually quite rare. Also, there is so much research going on right now there are bound to be new drugs develop that will target AS even better than the anti-tnfs.

Hi Higatt and welcome to KA.


Yes, it is normal to have all of those feelings. You are young with your life ahead of you and still trying to figure out how to live with a chronic painful condition and find the best ways to keep your disease well managed. Trust that you WILL find ways to enjoy yourself and be productive and happy despite the pain and fatigue.

I am sorry your Mom doesn't understand the extent of your illness and the reality of what you are coping with each day. You might be able to help her come to a better understanding as time goes on, but it sounds like this will be a challenge if she believes that you can simply *will* yourself better. AS is a chronic condition and thus, treatments are 'chronic' as well.

The misunderstanding of others can seem isolating. Remember at all times that you really are not alone. There are a whole lot of people in this world just like us - busy living with pain and the challenges it brings. You will discover that you are stronger than you ever knew. You will have these lovely moments when you sense a quiet, non-judgmental honest empathy from others.

I came to accept that some people can't understand just yet, and that's okay too. We are all on the path of learning and are all at various stages along the path... it's a journey.

You sound very close with your Mom so don't let this separate you. Be yourself and maybe from time to time just gently remind her that while you both believe in God, that she needs to believe in you too.

Whatever treatments you try, I think it's a good idea to maintain a relationship with a rheumatologist who can help to offer you guidance and options along the way, keep track of inflammation levels and be there to help if you develop new symptoms or questions. Your doc might be a good resource also to help your Mom learn more about AS.

Really glad you found our community and hope it helps you to feel less alone.