My mom doesn't understand why I have to do the low starch diet. I guess I can understand why she might not understand, but I need support, especially because I live with her. *sigh* I need help...

I guess I just need to keep doing it even if no one understands. I'm already having a hard time with food addictions, feeling crummy, tired and bloated, I don't need extra stress.

How do you deal with family/friends, and their comments or lack of understanding? Having to explain why I'm choosing to eat the way I eat to almost every single person I meet gets tiring. But I guess I can't give up...It seems petty to give up. I guess I just need to express my thoughts and feelings. Thanks to anyone who's reading this and responding. Tomorrow will be a better day. Maybe I just need a good rest tonight. Good night to whoever is reading this:)

Also, how do you deal with feeling somewhat lonely...?

Thank you,
HIGATT

I take it you've been diagnosed with AS or other spondylitis... does she realize how serious it can be, or have you tried to shield her from worrying? If your mother likes to web browse, pick out some good links for her to read at her leisure, including for sure the diet successes thread. If not, try printing out some key posts and articles.

After my mom heard the potentially serious side effects of the TNF-alpha drugs (e.g. causing MS, which has actually happened to a few members here), she became very supportive of me trying diet first (well second, I tried NSAIDs first until noticing side effects) and saving TNF blockers as last resort. Now whenever I eat at my parent's house, there is always something I can eat safely such as homemade turkey soup!

I know what you are talking about. I know what its like to go to a dinner party or potluck and bring your own set of tupperwear and get asked each time why you can't eat what everyone else is eating... and sometimes you just don't want to go into a big explanation of our disease, etc. And I have certain family members who seriously don't get it, and I just stopped trying to explain it to them. So know what I do is "cater" the meal when we get together so that I can eat EVERYTHING on the table! My dad is pretty old school in his thinking, and rather than belittle myself my trying to get his approval about this whole diet, I just showed up on Father's Day with a whole big Starch Free Lunch and shared it with everyone, and everyone loved it. We had chilled cucumber gazpacho soup, raw Pad Thai with fresh veggies & almond style "peanut" sauce, and raw honey sweetened chocolates for dessert.

After so many years of being on "wacky" gluten free, dairy free, grain free, diets, I have turned quite a few heads. But I can say that these days, EVERYONE WANTS what I AM HAVING lately. I have started making so many amazing low starch fresh veggie meals, that everyone at work wants my recipes and wants a bit of this or that. Feeling good from eating good is contagious! It can seem like a mountain at first, but once you conquer it, its seriously more like a mole-hill.

Just stick with it, and know that there is a whole support group of people here on kickas who are going through this with you! Once you start eating the optimal diet for your body, you will start feeling better, and you will just start to crave foods that are truly good for you.

-Andrea

Hi, why does your mom need to understand? If you need to go low starch, then go low starch. Nobody needs to understand why but you. Frankly.

Unless she does all the cooking and shopping, at which point, she does need to understand. Sorry, but I don't know much about you, so I'm uncertain how old you are, or what your situation is.

Does she know about your AS? I'm assuming you have AS. Does she know about the various treatments and their potential side effects?

Come here when you feel alone with this. There's always someone here to understand.

Hugs,

Hi SJLC,
Yes, I was diagnosed with AS when I was 17. I'm 21 now. I've told my mom in simple terms a bit about the disease several times. I think the biggest hindrance for her is that...(okay this part might be a bit complicated)...she's SET on the fact that Jesus has healed me. Yes, we believe in Jesus and what He's done for us, but it's not easy to just say that when she's not the one that's going through this. For example, it wouldn't be helpful to just say to a cancer patient: "Get up and get better!" I guess you can, but the point is there are so many ways to treat a cancer patient. And it would be more beneficial to ask the cancer patient if there is anything we can do to help them, rather than telling them what or what not to do. It's like making the cancer patient worse. I don't think my mom realizes that she is doing this to me. Although it's much better than when I first started having pain.

She's seen me jog and doing different activities when I started getting better while taking Naproxen, so from time to time, she'll say, "You don't need it anymore! See, you're fine!" But I've tried coming off of the meds before and a week or 2 later, I would be in pain.

I think I will try printing some articles for her to read...I'm not sure what type of articles though. Testimonies? Science findings? If it's a testimony, she might not want to accept that it will happen to me, and close her mind to it.

My mom knows that medication isn't good for me, and she wants me to come off it. But the thing is, she doesn't fully get why I have to do the low starch diet. It's especially hard to go without rice at our home (we're Asians, I was born in Canada).

But anyway, I will try! Thanks for your help, SJLC. It's nice to be able to write down my thoughts and worries that have been the cause of many stresses and sadness since I started having pain. And things that I wasn't able to put into words that caused me a lot of confusion. I'm sure I will have loads more to spill while I'm on this site. Thanks for taking the time to read through all this.

Wow, thanks for your encouragement, Andrea.
I've tried going low starch before, but I lasted 3 months until I caved in. At the time, I was eating low starch and taking medication, and my stomach was starting to get irritated. I felt nauseous and constantly hungry, but I wasn't really hungry. So when I went to see my family doctor (not my specialist, who prescribed me the Naproxen), she suggested I eat things like bread and rice. At the time, I didn't want to tell her I was doing a low starch diet because I didn't know if she'd understand. So I decided to start eating bread and rice. I remember my body went wacko wacko, and I had diarrhea. I couldn't stop eating bread, and I gained about 20 pounds. I also caved in because there would be times when I would say no to a bowl of chips or a plate of cookies, and my friends would say, "Wow, you're really good _____ (insert name)," or not say anything at all, and it would be like quiet for a few seconds or something. And then conversation would move on. Either that or there would be questions surrounding my diet. In my head, I'm thinking, "Are they judging me?" It seems so complicated and awkward, but I think perhaps I need to not care so much what others think. It's definitely a learning process for me! I've made so many compromises in my diet because of what others think, and I am the one to blame. I wished I could eat a normal diet like my friends, but I've learned that normal diets (including cakes and cookies) aren't so normal. What IS a balanced diet? Why is it that I crave more and more sweets whenever I eat them? That's not normal. The odd thought I fought with was: "If my friends can eat a piece of cake once in awhile, then I should be able to too." I'm still trying to drill into my brain that "I AM ME!" Everyone is different, and I can't always conform to what everyone else is doing or saying is "normal."

How long have you been gluten free, dairy free, grain free? How long did it take until other people started coming around and accepting it and even interested in it?

Thanks for your website! I think I will try a few recipes. The zucchini chips look very doable! I have to work on making time to cook!

Yeah, I've come to the point of just accepting that it might be hard without her complete support, but I will have to let out my battle cry, focus and push through. Maybe she'll come around and see my progress when I stick with it for long.

She does most of the shopping and cooking, but I also enjoy cooking. I have to MAKE time for it though. I did an internship last year, and the schedule was so busy that I stopped cooking much. It became a habit, and now I'm trying to retrain myself to cook and eat at certain times (not just snack throughout the day).

My mom knows about my situation with AS, and I have improved since I first had pain (17 years old; I'm 21 now). She's a tough mama, but she's also very caring. She's so positive sometimes, she doesn't think I need meds at all. Her insurance pays for my meds, and she pays the little that doesn't cover it. Sometimes she says things like, "You look like you're doing better, then I don't need to buy medication for you after this batch finishes." It kind of irritates me when she says that kind of stuff. I can't just go off of it cold turkey. I think I will just have to be patient with her in terms of the low starch diet. There may be times when something negative slips out of her mouth, and it may cause tension between us, but I'm learning to zip my mouth and continue doing what I have to do. If I try to justify and remind her when she isn't ready to sit down and listen, I'm not going to waste my breath.

My mom knows that the Naproxen can cause holes in my stomach, which lead to bleeding. She also knows that I get back pain and hip pain, and there are times I feel really tired. But I don't think she fully understands the science behind it. I've tried telling her several times, but it seems like she still doesn't understand (or maybe she doesn't want to understand - accept it).

Thanks for your support, Inanna. It takes effort to type all this out and make replies, but I think this site will help when I'm in need of it. There are doctors who can help me, but they only help with my physical/medicine side. There are friends who can help me, but they don't understand the pain side. There are family members who can help, but sometimes it's just too much for them to hear. I'm glad there's a community of people out there who struggle with this as well. I'm optimistic about this, but I think it gets harder when people make it more complicated. I don't blame people, I think I need to not allow others to affect me so much. I want to be so stable that no matter how many comments, looks, thoughts or feelings bombard me, I will continue eating a low starch diet because I know that's what's best for me.

HIGATT

Sorry you are having problems like this. If your mum is dead set on a religious explanation, then I'm not sure anything else is really going to change her mindset. Only thing I can think of is having a chat with your minister/pastor/priest, and see if they can talk with your mum about the need for you to also take meds, and do things like exercise and NSD as well as prayer.

Have you tried low starch,or just NSD? If you can get away with low starch, you can probably mostly eat with your family, if you make sure you serve yourself and avoid pasta, potatoes, anything made from grains (just eat the vegetables, fruit, meat, fish, etc). If you sort out your own lunches, and make sure that you buy your own breakfast foods, you might be able to take the stress out of eating so differently to the rest of the family.

Sounds like your mum is in a bit of denial about the seriousness and permanent-ness (is that a word?) of AS. I can understand that as I went through a phase of hoping for a miracle cure for my husband - not a religious one but just like a magic pill or supplement that was going to take it away forever. It took us a while to accept that is NEVER going to happen.

Jon does well on the NSD and is med free so that has worked well for him. He's been on it for 8 years now and it still keeps his AS well under control. His daily pain levels are usually 1/10 if he sticks to it.

You mum needs to accept that you will always have AS in some form or another. You may be able to drastically reduce your symptoms with either medications or diet but you will need to do one or the other or a combination for the rest of your life most likely. This is a hard thing for a parent or family member to come to terms with. She is probably scared for you and just wishing it all away. I hope that she will read some info on AS and help you get through it and find a method of treatment that works for you.

Been there done that and still going through it. This has been a major obstacle for me during the past 4 years or so since I've had AS. It's tough being a teenager with a condition like this where you have to rely on other people to survive. It's hard to do the diet efficiently in my experience because there is no way in the world that I could financially afford to do the diet by myself and make my own decisions. When the people you rely on don't believe the severity of your condition or any merit in diet, it proves to be a major problem in treatment. I don't like to talk about it too often but as much as I love my Mum, she is one of those people that believes everything that they know to be true. In other words, what she thinks is the way it is. Therefore she has built up this idea that there is no way diet could impact something like this. She has also built this idea in her head that anxiety is my biggest problem. Most of what she thinks she knows is completely untrue and no matter what I say, nothing will change.

It may be very different in your case though. Luckily for me, my Dad can relate to me and is very understanding and I still have been able to do low starch diets and no starch diets but I never quite solved the puzzle of eliminating pain with diet. This does not mean I've given up on it, just put it on hold I guess. I do believe there is a link between food and AS because whenever I skip a meal or two during a day, in many cases my pain levels drop dramatically. I doubt it's a coincidence.

Good luck,

Seb