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Do you add a new food by eating it on its own and waiting to see if there's any reaction? or do you only eat a new food only in the context of a meal? I am struggling to add new foods becos cautious and fearful of possible reaction.
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New foods
I have added foods back both ways. If I eat a new food within a meal I make sure all the other components of the meal are things that I already know are safe for me. I know that it is scary to add things back as you do not want to rock the boat. I often feel the same way when I add new foods but it is the only way to find out if we can tolerate it. I think that I bought a red pepper every week for about 6 weeks before I got the courage to actually eat it. I also could remember trying to add in cooked onions I would get it out put it away over and over until I got the courage and all was okay. I would just try a little bit at a time. I am now experiencing fear around adding in vegies that have a bit of sugar as they seem to cause me a problem. I woud have thought that the onion would have been worse but like I said if you don't try you will never know. Good luck.
new foods - yeah!
I don't know if it matters how you add them in. When I added in new foods I usually added them as part of my meal. I would wait until I was having an OK day so that I could tell if I was having a reaction and I would try to add them at the time of day when my bladder was more calm again so I could tell if I was having a reaction. My bladder would usually bother me in the morning and again in the evening so afternoons were the best time for me. And even then I sometimes just couldn't tell if the food agreed with me or not. So I'd have to get up the courage to try it again (sometimes it would take me 4-5 trys to be sure it was OK). I'd usually start with the foods that seemed like they'd be the easiest/least reactive just to build up some confidence. Like Kristie, I would sometimes buy a new food and then take a few weeks until I felt brave enough to try it. Congratulations on being able to add in some new things. Once you get past the testing phase you will be so happy to have more options available to you. Good luck!Carol
Encouragement
Thanks Kriste and Carole for the encouragement and support. I'm glad it's not just me who has to try a new food more than once - sometimes ur just not sure if its ok. I am going at a snail's pace due to fear of slipping back but today was brave enough to try 1/4 cup of black coffee and so far so good...
How do you know there's a reaction?
I'm still really unclear on how to judge if you've had a reaction. Can anyone shed more light on this? I know it says "1/2 hour to 6 hours" afterward and all that, but that's a big window of time. Is an immediate change more telling? Further, if your baseline isn't pain free, meaning even without the introduction of new foods your pain goes up and down throughout the day/week, how can you accurately connect a pain change to a food reaction?
As to the first part of your question, Matia did not specify that a new food must be on its own or within a meal. More important is that you only try a little bit of the new food that first time.
food reaction
For me it was often hard to tell if I was having a reaction, mostly because I would have the pain ups & downs thoughout my day and week, That's why I often had to try something a few times just to be sure it was OK. When I was unsure, it helped if I re-tried the same food over a period of a few days, trying it at a differerent time of day. I really only had one bad reaction - and I was miserable for about 12 hours. I quickly learned to eat only a small amount of something new! I also found it helpful when testing a food to busy myself with something else to take my mind off of worrying about if I was going to have a reaction or not. Hours later I would often find myself thinking - hey, I didn't have a reaction! Carol
How long on list 1?
Hi everyone,I am in need of some advice!I came down with a UTI at the beginning of december that never went away. After the negative tests I immediately went on the IC diet, which then turned into Matia's list 1 diet, which I cheated a little on at first (carob, maple syrup on gluten-free pancakes and some pinto beans...) but have been following religiously the past week. All in all I've been on a restricted diet for a good month and a half. What I was wondering is if it was possible to follow this diet yourself. I don't really have the money to see Dr.Brizman right now, but I don't want to waste any time harming myself more. I had a scope 2 days ago and everything actually looked totally normal, so I guess I don't know what I have, but the symptoms fit perfectly with IC. Since I restricted my diet more I have been doing worlds better, but know I react strongly to things too (I had a tiny bit of cinnamon a while back and the burning started an hour later). Anyways, I guess my point is I'm wondering is if it's possible to do this on your own (particularly because i have what seems to be a mild and new case??) I guess the hard part for me is when to know when to add new foods back. How long do most of you stay on list 1? (I know that's a tough question, we're all different, but just some estimates?) Thanks!!!-Whitney
You really need the herbs and Matia's experience.
I came down with three UTI's back to back starting in Feb 08. After the last one in May the urgency and frequency didn't go away. I was looking on the internet (at my urologists recommendation) for a IC diet to follow when I found Matia. I started the diet in May and felt about 90% better very quickly. By Oct I was not improving, just staying the same. I finally decided to go and see Matia and did so at the end of Oct 08. It was the right decision. I'm feeling so much better. The die off comes and goes and that part is hard but I'm actually improving now. I just wish I hadn't waited the 5 months because I'd be that much closer to my recovery. IC doesn't have one definition. Your story and symptoms sound like IC to me. Regardless, Matia can help you. My advise to you is to stick to the the diet and find a way to see Matia. The herbs are essential to your recovery. Good luck. I'll looking for your updates. Tammy
Whitney
Whitney:
It is unfortuate that you are not able to go and see Matia but I understand that it can be difficult financially. I too had to travel to see her. I am very very glad that I did. If you are able to plan for the future it would be worth it. As far as the diet it is very difficult to ssay how longone must be at any particular phase of the diet. I have been in treatment for close to 8 months. I was on list 1 for I think about 6 weeks. I am not sure if people are on list 1 for a short amount of time or not but as far as the of list it sure seems to vary from person to person. I am now between list 3 and 4 but I know that some others are on list 2 for a very long time. There are times when I am having difficulties and go back to the basics of list 2. One really does need Matia's guidance to go through the lists. She knows when you are ready for changes and provides you with advice on what the changes should be. The lists are a guideline but somethings on them might not be right for you for example the powdered garlic are on the early lists and so I ate tons a it was the only flavor I could add that I liked. I could not figure out why I had so much burning and Matia said pinpointed it to the garlic after I reviewed my diet with her. Sure enough I felt much better after taking out the garlic. Besides the diet Matia does provide us with suplements that she has or that we can purchase in most health food stores but what each of us takes is very specific and changes through time. I think that one thing that is consistant is the probiotics but even that is specific to each individual in terms of which probiotic we take and how much.
You say that your case is new and mild but from what I understand by the time we experience the symptoms things have probably been brewing for awhile. I have read about some success stories where they thought that they were a mild case and it took some time for them to get better.
In the meantime I am glad that you have found this site and you will find very possitive and supportive people here. I wish you success.
Whitney
Whitney,While you may find relief on list one I don't think that diet alone is enough to heal the health issues. If that were the case I think alot of us would not have committed to the whole protocol. Kriste was right- there may be some seroius stuff going on with your body brewing under the surface. I discovered exactly how sick I was in treatment. I was out of balence for so long that I didn't know to what extent until I started to get better- you know what I mean? It is hard and a big step! I too know the financial stress of the situation! I came to conclusion that ELmiron which is obscenly expensive and does nothing to heal my body was the not going to be for me- in the long run even though all the treatments/herbs and so on can be high it is still more affordable than the drugs I was presribed and the office visits I was making to urologist! I remember I found Matia in 2005 online when I started having mild IC issues but it literally took me 2 years to come around to feeling ready financially or mentally like I could commit. I didn't have insurance with my job that would cover the treatments. I do now but it only covers a little bit and the rest - pretty much all of my income after rent and bills goes to my treatment. It is so worth it. I wish I had tried harder to find ways to finance the treatments with Matia sooner. I should have asked my family or friends to borrow or looked harder for a better paying job- I was being picky! or used credit cards or something. I would be better by now. Things 2 years ago were not that bad-for my IC yet but I got steadily worse until the problem was so loud I could no longer ignore it. I flew all the way across the country to see her and the whole experience was super exciting and positive. I do not for one second feel I am wasting any time or money on this process. considering all the $$ I wasted on western medicine and how I essentially was paying them to make me sicker with antibiotics is what really blows my mind. this is the most incredible and worthy investement I've ever made. health is priceless. the diet I think is meant to be a temporary thing and foods are meant to be added back for the value that they contain as our bodies can tolerate and be nourished by them. I hope that you find the path to health whatever that is-and that it is soon! Thanks for contributing and for reading. Mary
thank you
Thank you for all of the replies! Deep down I know I need to see Matia so I plan on making that happen as soon as possible. I filled out a patient form on the BomaMed website and will call Monday. I am just 22 and was planning to leave to volunteer in India right when this all happened, so of course all my money had gone into the trip and I was out of work, no insurance. I feel like I've already wasted the little money I have going to the gynecologist and urologist so like you all said I might as well start putting it into something good that I believe in! I am praying to get a refund from the airline which will help me tremendously... This has all been so confusing but I knew from the start conventional medicine would do nothing and I have taken myself off the only thing I was put on, amitriptyline. I still don't know if my family believes me 100% but treatment is in my hands so I am taking all of your advice- it was the last push I needed! I know I need the guidance as I am getting more and more tired and feel hungry all the time no matter how much of the "good stuff" I eat. Strange to go from an energetic person who ran 7 miles a day to this... Thank you :) And sorry I took this forum a bit off on a tangent!
You made my day!
Whitney, I read your post this morning and it really made my day. You are on the right path and the sooner you get started the better. Maybe you could use a note from your doctor to get a refund on your airline ticket. It's good that you've started the diet. I think it will make for a smoother start. What are your symptoms and what foods do you tolerate? Tammy
symptoms/foods
Tammy-My biggest symptom by far is urgency. Initially, I felt like I could go to the bathroom every second of the day, but knew that I didn't really have to. This obviously led to frequency and nocturia. The urethral discomfort is definitely what is lingering the most as other symptoms have improved. I also have bladder pain and sometimes a burning sensation in my bladder. Another weird thing is when I stretch my arms upward my bladder hurts, almost like the lower muscles are sore and tight. I think yoga has helped this some. I have been on the List 1 diet for nearly a month, but I have eaten some off-limits foods, which I don't feel like caused me more pain, but I don't really know anymore! Sometimes I feel bad for what seems to be no reason! I did eat pinto beans, green onions, and pears every once in a while and seemed to be okay, but I know none of these are allowed until way later in the diet. I've also eaten grain-sweetened carob and felt okay (my sweet tooth is terrible some days). But that nagging urethral pain is kind of always there, so I have trouble linking things to foods unless it's a completely obvious increase in urgency and frequency. I know sugar of any kind is not a good idea, but I really love my fruit so this has been extremely tough. I just feel so bored with the foods, sometimes I even get nauseous thinking about eating some of them again! I am ready for some guidance and extra help from Matia, that's for sure! I did send a doctor's letter to the airline, so just waiting and hoping! Thanks for the support, it's really nice to have :) How long have you been a patient and how are you doing?
Hey Whitney
My daughter and I went to see Matia on Oct 28. My daughter Emma is 7 and has been having per IC issues most of her life. When I came down with IC in May 08 and found this website I comsumed every post there was to read. I soon found that not only did I need to see Matia but Emma needed to as well. I wanted to get her well ASAP. I didn't want her to ever exp the pain I've been through. We didn't actually start on our herbs until mid Nov. We are both doing well. Much improvement. It sounds like you don't have the food issues that most of us have. You should move through the diet levels quickly. Keep away from the sugar. I know it's hard but it will prolong your recovery. Keep me post and if ever you have questions give me a shout. Tammy