Attn newbies or anyone struggling....

[Dii]

Hi, I'm Dii from New Zealand. I was diagnosed about 2 months ago. I got the diagnosis from the clinic nurse and the doctor still hasn't been in touch! I'm doing pretty well on the elimination diet I read in W Persky's book. Well, I was till my Mum died 2 weeks ago. Things are starting to settle down again now.
I got onto figuring out what was wrong quite fast because I have 2 brothers with Celiac and my sister has LC too. I notice that many of the recipe in that section contain onions or sugar. Is this for when one goes into remission?
In ingredient lists what do the number ingredients mean? Are they safe?
Did anyone else want to go mad with the severe restrictions of the elimination diet?

[Gabes-Apg]

Welcome Dii - welcome to the group and sympathies you had to find us due to your diagnosis and additional sympathies for the loss of your mum.

that is good news that the diet changes did help quickly.

re your questions

I notice that many of the recipe in that section contain onions or sugar. Is this for when one goes into remission?
onions is an individual thing. Some can tolerate it. some can't
Sugar, best to minimise it.

In ingredient lists what do the number ingredients mean? Are they safe?
Not sure what you are referring to. if you are referring to this area of the forum
viewforum.php?f=52
it provides the list of names that soy is used in foods, make up etc so you can check products and avoid if you need to avoid soy


Did anyone else want to go mad with the severe restrictions of the elimination diet?

Some do struggle with the mental and emotional aspects of making the changes. it depends on your routine, lifestyle, family life, social life, work place. etc etc.
it is part of the journey, at first the limitations and changes do feel intimidating. With time, once you have your eating plan and routine sorted, and you are living life with minimal symptoms, it becomes the norm and with time it can be freeing as it means you are living life and not stuck in the bathroom.
Prior to my diagnosis I had been gluten and lactose free for 10 years, so it wasn't as big of an adjustment for me.
To be fair we are very lucky in NZ and Australia that food items (meat and vegetables etc) are pretty good quality and reasonably affordable and we have access to good ranges and variety of items.
Spending 6 months to figure out major triggers is small investment to set the foundation of your MC eating plan.
I am 13.5 years post diagnosis and my eating plan is based on the same safe basics that I figured out in the beginning.

hope this helps

[tex]

Hi Dii,

Welcome aboard.I don't have anything to add to Gabes' response — I just thought I'd comment on one of your remarks.

Did anyone else want to go mad with the severe restrictions of the elimination diet?

The journey to remission for this disease can be frustrating, but not nearly as frustrating as trying to live with the disease without being able to get the symptoms under control. Your body will thank you for stopping the symptoms every day of your life.

Incidentally, like Gabes, I don't understand what you mean by your question about the numbers on recipes. If you're referring to recipes in the "Dee's Kitchen" section, here's some background information on that area. That section was started many years ago, by Dee, who's a retired professional chef who has MC. All of the recipes that were posted by her, were carefully tested and found to be safe, and very tasty. Some recipes include ingredients such as eggs, but in a separate post, she lists safe egg substitutes, for example.

Unfortunately, due to sudden family obligations, which required her full-time attention, she had to stop posting. Since then, other members here have added posts to that forum, and many of those recipes are just fine, but if you're considering any of the recipes that weren't posted by Dee, carefully scrutinize the ingredients to make sure that they are safe for you, because although they may have been safe for the poster, they may not be safe for every one of us. I hope this helps

Again, welcome aboard, and please feel free to ask anything.

Tex

[Dii]

The numbers I'm referring to are possibly colours or preservatives? They are in ingredient lists.

[tex]

I still don't understand. You must have a different labeling system in that part of the world than we have here in the US.

Tex

[Daisy]

This is an amazing summary for all newbies. Thank you!!!

[Solitare]

Hi all,

I'm new here and could really do with some guidance right about now. I was diagnosed with MC in 2003 when I was 19 years old. At the time the GI told me there was nothing to be done as it would go away in it's own time and that it wouldn't cause any long term problems.

So, I kept waiting. And waiting.

Years on and despite having WD up to 4x a day it seemed pointless to go back and see the GI again. So I put up with it. Having said that, the disease by and large never controlled what I did or ate. I hardly ever had to rush to the bathroom so I never tried to control it through diet.

But then I got covid 18 months ago and following that everything I thought I knew about my gut completely fell apart. Seemingly overnight I became sensitive to absolutely everything and found myself chained to a toilet, too afraid to eat anything when I had to leave the house in case I had a reaction.

Last year I sought out another GI, recieved the same diagnosis of LC and ended up on budesonide for 3 months. For the first time in years I didn't feel weak, exhausted or faint all the time and it was great while it lasted. Predictably the WD returned as soon as I ceased it and, having only just found this forum, have now been on the stage 1 diet for a week.

While I'm feeling much better it's the social side I'm really struggling with. My husband and son, who is 7, are real foodies. Everytime we go somewhere we (apparently) have to stop for a snack or meal. I'm reluctant to indulge in such things, particularly at the moment, which just leaves me watching while they eat. They're constantly cajoling me and pushing me to get something for myself so I'm not excluded. They're trying to be kind but I keep having to refuse over and over and it leaves me feeling like a burden.

I'm so exhausted from the emotional aspect of things that I'm finding it hard to cope. What do I need to do or tell myself to feel like less of a pariah?

- Lisa

[tex]

Hello Lisa,

Welcome to the group. Your first gastroenterologist sounds a lot like mine, 24 years ago. I wasn't even able to get a diagnosis from him (because he didn't bother to take any biopsies), let alone get any help from him. He recommended that I see a good psychiatrist.

The behavior of friends and family can seem very unhelpful, despite the fact that they believe they are trying to help. Their behavior is typical of someone who doesn't understand what we are dealing with every day of our life. We typically don't look as unhealthy as we feel, resulting in most people under-appreciating the disease, because they don't realize how debilitating it can be.

Humans are social creatures, and food has historically played a huge role in socializing. Social events focusing on food have been de rigueur for so many generations, that it's almost instinctive behavior. If we're planning a social gathering, part of the planning is always devoted to food. We evolved enjoying social gatherings that focused on food.

Consequently, whenever people get together, there's virtually always going to be food. And, of course, all those present are expected to enjoy the food. Research shows that eating with others increases social bonding and feelings of wellbeing. It makes people feel more contented, and inspires affection and trust. That's why someone in the group not enjoying the food usually triggers neurological issues for the other participants that result in emotion-based reactions. And these emotions tend to conflict with the bonding emotions mentioned above.

Families are no exception. Even if other family members realize why you are not eating, they're so uncomfortable, because of the fact that you're not able to enjoy the food that they're enjoying, that unless they've learned how to overcome this ingrained behavior, they "instinctively" feel obligated to try to encourage you to eat. this dilemma is not your fault, and it's not their fault — it's an attribute of human nature.

But it's devilishly frustrating (to say nothing of stressful) for many of us, and training others to adopt more understanding behavior, is usually not easy. We may be able to avoid many community social events, if we feel that they're more stressful than they're worth. But isolating ourselves may be more stressful than explaining our situation during social encounters. Unlike community social gatherings, however, we can't avoid all family get-togethers, since they occur on a daily basis.

You should have a little heart-to-heart talk with your husband and son, and patiently explain to them that despite the fact that you don't look nearly as sick as you feel, you have an IBD that can wreak havoc on your entire body if you don't treat it with respect. Point out to them that you're tired of suffering, and you're making a valiant attempt to put the disease into remission by changing your diet to avoid the foods that cause your immune system to react, so that you can begin enjoying life again. Explain to them how your diet is your medicine, and even tiny traces of many of the foods they are eating are like poison to your digestive system. Point out to them how you don't mind enjoying their company and not eating anything, as long as doing so will keep you from being sick, afterward. Explain to them how your journey back to health will take months, or even years, because the digestive system heals slowly. And mention to them that even after you have the disease in remission, you will need to eat a carefully restricted diet for the rest of your life, in order to keep the disease in remission. But as long as you do that, your life will be normal, and once again enjoyable, other than the dietary restrictions.

I assume your husband and son are aware of your bathroom urgency, when your disease is active. If so, you might point out to them that if they were in your shoes, then like you, they would be doing whatever is necessary in order to prevent having to run to the bathroom whenever their disease demanded it.

I hope this helps. Again, welcome to the group, and please feel free to ask anything.

Tex

[cloud9er]

Hi Lisa,

I agree with what Tex has said but I will go further and say that your friends and family just need to deal with your MC. Mine have over the years, they start to be more considerate and thoughtful but not without being persistent and sometimes I’m afraid being forceful with boundaries. What I mean by that is sometimes having arguments because someone hasn’t considered my food or need to be near a toilet at pretty much all times, or bursting in to tears etc. If I didn’t get upset or stuck up for myself, progress would not have happened. Your life and theirs too have changed, you can’t go back to the life before diagnosis. Remember to take care of yourself, deal with your stress and rest. Always carry a safe snack or plan meal times at home around activities. If you need to order food out order plain meats and possibly rice or potatoes. Most restaurants put in a ‘get out of jail card’ statement of we can’t guarantee that cross contamination won’t occur. Good luck with eating out.

The above being said I still get upset watching other people eat if I can’t or eat delicious foods that I can’t, so, I avoid those situations.

Amy

[JML]

I am wondering how people get enough Vitamin C with this restricted diet - ie no citrus, fruits etc. I find I react to Vit C tablets. Have people had success with the Liposomal Vit C products, and if so, what brand? Thanks

[tex]

We don't worry about balanced diets while we are recovering, because most of the nutrients in our food are going down the toilet, anyway. After we reach remission, then we can worry about balancing our nutritional needs, and we can tolerate citric acid, which means that we can take supplements, or eat oranges or other citrus fruit in increasing amounts as we continue to heal.

I hope this helps.

Tex

[Gabes-Apg]

Vegetables have Vit C

Cauliflower, sweet potato, potato, broccoli

I have not eaten fruit for 14 + years since diagnosis. I supplement with small amount practitioner grade Vit C in winter
Never had any issues with deficiency.