Limiting diet

[Felicity]

Dear Tex and admins and fellow sufferers, thank you, thank you for being there, and for your book, research and labours Tex and for helping me access my account.
I’m a newbie here and to all of this. I have a few questions but perhaps I should start at the beginning with my history. I’m sorry if some of the information is somewhere here. I’ve read quite a lot but there is a lot to get through…

I am 69 and live in England. I have always had tummy problems. In my early 20s I would just eat arrowroot biscuits for a few days two or three times a year to ‘sort out my tummy’ (don’t think I had D but it was uncomfortable) Things became progressively worse with wind and tummy aches. A doctor told me I was constipated. In 1985 I saw a homeopath who tested me with a vega machine. He told me not to eat certain foods: dairy, beef, pork, cane sugar, beet sugar, chocolate and nuts. Intolerances weren’t talked about then so I struggled to omit those foods and even when I did I still had problems. After years I reintroduced everything except dairy, and beef out of preference. I kept trying sheep and goat’s cheese from time to time until I eventually gave up altogether about ten years ago. I’ve always said my tummy is my weak spot and had smelly wind and not been able to wear trousers tight round my tummy.

So to three years ago when I had my first bout of D. It started on holiday and I thought I had food poisoning or gastroenteritis but it didn’t go away for six months. My GP ran the usual tests done here and the only significant thing was my fecal calprotectin was sky high. Eventually I had a fast track colonoscopy and nothing was found however it re-set my gut. No more horrible D. I was then ok until December last year when I flared again. I was going to be given a colonoscopy but had to wait a long time so was impatient and took the mediprep as if I was going to have the procedure and once again it sorted me out. Then in august it started again. I was extremely lucky to get an appointment with a consultant quickly and he said he would do a colonoscopy and take biopsies. This time my tummy didn’t re-set. I was very concerned as my son was getting married early October and I so wanted to be better. How naive! I was diagnosed with LC and given 6 weeks of budesonide and told to eat anything. I was not much better after the six weeks so started my own research. The D was much less but still WD. Three weeks ago I found you:)

I was already dairy free, gluten free for two and a half years as a gp said I probably had ibs and could see if it helped. I hardly ever drank alcohol as more recently I found it didn’t suit me and was also caffeine free. A week before I had decided to stop my daily soya yoghurt. I had been eating loads of eggs so stopped those immediately and oat milk and within a week the D improved.

Fortunately I had extra budesonide so I have been able to reduce to two for two weeks and this week am now taking one a day. I was not told to do this by the consultant!

I am eating lamb, venison, partridge (once and very nice it was too! More in the freezer) pheasant, turkey, prawns and chalk stream trout - white rice, white potatoes, sweet potatoes, carrot and squash. I have tried a couple of halves of avocado and a little cooked apple. I roast my veggies in olive oil.
* I wonder if I could also use cold pressed rapeseed oil or grape seed oil which I happen to have in the cupboard too?
* Is this too much variety for the start? Apart from white potatoes they are not foods that I have eaten regularly in the past.
* I would like to try celeriac and beetroot when suitable. Our son and his wife have a market garden growing as good as organic just not certified and those are some of what they have in the winter
* what exactly do you mean by remission?

The WD has stopped during the past week. I’ve had a couple of days with no BM, one formed but raggedy and one nicely formed. This morning’s was small and very soft. I no longer feel bloated during the day and don’t have to lie down with a hot water bottle in the evenings.

I have been taking magnesium for a couple of years and added vitamin D3 and K earlier this year. I have now stopped all other supplements. I am not getting as much magnesium as you recommend.
* Should I increase my dose? I take British Supplements mega magnesium and L Threonate at present. The d3 has black pepper in. Also, is the 300-400 elemental magnesium recommendation for everyone or MCers? My daughter and her partner often get sick and my daughter in law is newly pregnant.

I really want to do this the best I can so any advice, even if I have to restrict further to start with is welcome. Bizarrely I am embracing eating meat and fish as I now feel that is what is healing me and yet I have never been a big meat eater. My husband chuckles to see me tucking into a pheasant leg for ‘breakfast’! I have more energy and am feeling so much better in myself although can be still be tired in the evenings.

I have been trying almond milk in my decaf coffee but really don’t like it. I have bought both coconut milk and rice milk to try.
* Might those be ok? I also drink black earl grey rooibos tea once or twice a day

* Before I found you I also bought Fifth Ray cosmic hue herbal tea which is for gut health. But perhaps I should stop taking it as MC seems to be so different from crohns and colitis which the creator of the tea has. Ingredients: fennel, marshmallow root, ashwagandha, echinacea, astragalus, cat’s claw, nettle.
*
* Could I have had LC for most of my life but without a flare until more recently or is it something that develops later?

Thank you if you are still reading! And by the way I had a blast at my son’s wedding. Whether it was adrenaline or a real blessing to me, I had three good days when I felt ok and WD only once a day. I danced the night away!

[tex]

Hello Felicity, and welcome to the group.

I am eating lamb, venison, partridge (once and very nice it was too! More in the freezer) pheasant, turkey, prawns and chalk stream trout - white rice, white potatoes, sweet potatoes, carrot and squash. I have tried a couple of halves of avocado and a little cooked apple. I roast my veggies in olive oil.

Your diet appears to be generally sound. A few of us have problems with sweet potatoes, but for most of us, they are safe. And peeled, overcooked apples should be safe, in moderation.

* I wonder if I could also use cold pressed rapeseed oil or grape seed oil which I happen to have in the cupboard too?

For most of us, those are usually safe options.

* Is this too much variety for the start? Apart from white potatoes they are not foods that I have eaten regularly in the past.

The short answer is, "No." When most people try to add variety, they make the mistake of choosing to add common foods, known to be risky. Adding variety by choosing exotic or uncommon options shouldn't be a problem, as long as they are all foods known to be safe for virtually everyone.

* I would like to try celeriac and beetroot when suitable. Our son and his wife have a market garden growing as good as organic just not certified and those are some of what they have in the winter

I had never heard of celeriac Before, so I had to look that up. These are uncharted waters, since I'm not aware of anyone who ever mentioned eating it before, but I'm guessing that it should be safe, but that's just a guess, with no evidence on which to base that guess. Beetroot should be safe.

* what exactly do you mean by remission?

Everyone seems to have their own definition of remission, but for me, it's when my bowel habits have returned to a condition similar to what it was before I developed MC. It won't necessarily be exactly the same, because stool depends on diet, and if we're using diet changes to control the disease, then obviously our diet has changed, which will almost surely cause changes in our bowel habits.

The WD has stopped during the past week. I’ve had a couple of days with no BM, one formed but raggedy and one nicely formed. This morning’s was small and very soft. I no longer feel bloated during the day and don’t have to lie down with a hot water bottle in the evenings.

Healing times vary by the individual, and it isn't always a straight-line recovery — some describe recovery as two steps forward and one step back. But it sounds as though your recovery is on track. Don't be discouraged if you have a setback now and then — most of us do — but patience and perseverance gets us to the finish line.

I have been taking magnesium for a couple of years and added vitamin D3 and K earlier this year. I have now stopped all other supplements. I am not getting as much magnesium as you recommend.
* Should I increase my dose? I take British Supplements mega magnesium and L Threonate at present. The d3 has black pepper in. Also, is the 300-400 elemental magnesium recommendation for everyone or MCers? My daughter and her partner often get sick and my daughter in law is newly pregnant.

The US RDA (recommended daily allowance) for magnesium is 320 mg for women and 400 mg for men, and that's for average citizens. Some of us may need more while recovering, because MC depletes magnesium, and so does budesonide, but we should be getting enough magnesium from our diet to cover any insufficiencies unless we have a genetic defect that prevents the proper absorption of magnesium (but that's pretty rare).

I looked up that supplement and it should be an excellent choice, providing the most easily absorbed forms of magnesium, that are the least likely forms of magnesium to cause diarrhea. I also take L threonate (I'm 84, and I've been taking it since soon after its benefits were revealed, a few years ago), but as far as I'm aware, it's mostly useful for preserving cognizance as the brain ages (it's the only form of magnesium that can cross the blood brain barrier). I don't consider it as part of my regular magnesium dose (To take care of my body's needs). I take 300 mg of magnesium glysonate (one tablet after each meal) to provide the magnesium I need (but I have been in remission for 20 years.

I really want to do this the best I can so any advice, even if I have to restrict further to start with is welcome. Bizarrely I am embracing eating meat and fish as I now feel that is what is healing me and yet I have never been a big meat eater. My husband chuckles to see me tucking into a pheasant leg for ‘breakfast’! I have more energy and am feeling so much better in myself although can be still be tired in the evenings.

Since you asked, if you begin taking a daily antihistamine each morning after you end the budesonide treatment, it will have almost the same effect as extending the budesonide tapering even further, in that for most of us, at least, it will help to prevent the risk of a relapse after the budesonide treatment is ended.

I have been trying almond milk in my decaf coffee but really don’t like it. I have bought both coconut milk and rice milk to try.
* Might those be ok? I also drink black earl grey rooibos tea once or twice a day

Those are normally okay for most of us. Note that the rice milk is actually not gluten-free, because barley malt is used to start a fermentation process. The manufacturers claim that they remove most of the gluten and certify the product (in the US, at least) to have less than 20 ppm of gluten, which meets the US so-called "gluten-free" certification. There is also cashew milk, hemp milk, and probably a few others that I've never tried. I have tried cashew milk, and it seems to be fine, but when I tried hemp milk while recovering, it apparently caused a reaction because I was always bloated afterward.

To my taste, the "Original" flavors of the plant milks are worthless, because they have no flavor. If you want a milk substitute that tastes (to me, at least) better than cow's milk, try the "Vanilla" flavored almond milk. It's the only kind I ever buy, and I use a lot of it.

* Before I found you I also bought Fifth Ray cosmic hue herbal tea which is for gut health. But perhaps I should stop taking it as MC seems to be so different from crohns and colitis which the creator of the tea has. Ingredients: fennel, marshmallow root, ashwagandha, echinacea, astragalus, cat’s claw, nettle.

Teas are usually safe For those of us who don't have histamine issues, but blended teas often cause some MC patients to react. Personally, I would wait until I've been in stable remission for a while before I tried any blended teas, so that I could tell if they are causing problems.

* Could I have had LC for most of my life but without a flare until more recently or is it something that develops later?

You surely could have, because it sometimes causes few problems until something comes along to really get the reaction going. Almost 20 years ago, we had a member join because she was a young mother with a 3 1/2-year-old daughter who had been diagnosed with MC. After she managed to fine tune the girls diet (over her doctors objections, who were trying all sorts of things with no benefit), her symptoms faded away, and the last I heard (probably about 10 years ago), her daughter was a healthy, normal (except for the diet changes) growing teenager, with no apparent health problems.

Thank you if you are still reading! And by the way I had a blast at my son’s wedding. Whether it was adrenaline or a real blessing to me, I had three good days when I felt ok and WD only once a day. I danced the night away!

Lucky you. Most of us aren't that fortunate before we're able to coax the disease into remission.

I hope your recovery continues as smoothly as possible, and if you have any additional questions or concerns along the way, don't hesitate to ask, because with MC, it's always better to be safe, than sorry.

Tex

[Felicity]

Dear Tex
Thank you so much for taking time to reply so thoroughly. It’s very helpful and is encouraging to know that I’m on the right track. I had some celeriac and beetroot last night and again a small amount at lunch today and they both seem fine:)

One more question. If I start to take an antihistamine when I stop the budesonide how should I do it please? Can I stop the busesonide after my two weeks of one a day or should I then take one every other day before moving on to an antihistamine and how long should I take the antihistamine for? I feel I must be getting constipated as I haven’t really had a BM for three days (one tiny formed bit!) so the sooner I am off the budesonide the better perhaps? I’ve been on one a day for a week now.

Again thank you for all the support you give us all on what initially seems a very daunting path to have to take.
Felicity

[tex]

This isn't part of the official medical budesonide treatment for MC, but we recommend that the dose should be reduced at the first sign of constipation, so it sounds like you might be ready to end the treatment even though you've only been at the one per day stage for a week. Normally, we wouldn't recommend this so early in your treatment, but if you haven't had a bowel movement in 3 days, it's probably time to end the treatment.

We usually recommend taking an antihistamine for about 2 weeks after ending the budesonide treatment, but you might have to play it by ear. In other words, if constipation is a continuing problem, you might have to end the treatment earlier. And on the flip side, if your bowel movements become a little dodgy, you might need to continue the treatment longer, or even take a budesonide tablet every few days for a week or 2. Some of us are definitely more responsive to budesonide than others, so deciding when to make these transitions can be tricky, sometimes.

I hope this helps.

Tex

[Felicity]

Hello Tex
You very kindly answered my queries before Christmas and I am glad to report I eased off the budesonide, took an antihistamine for about ten days, was still getting constipated so cut out the antihistamine and all was well. I still only have BMs every few days but don’t feel so constipated now. I am still eating my restricted diet and am not really trying many new things at the moment hoping that this will give my gut a chance to heal.

I tried emailing you with my report from the colonoscopy as I saw the gastroenterologist on Tuesday and asked for it. Unfortunately I must have found the wrong email and don’t seem to be able to send a photo on here. I’m not terribly impressed with my gastroenterologist! I took a photocopy of the back cover of your book. He scanned it and said “we do all those things”. However he told me nothing about diet! He said that my LC was very little and nothing much to worry about. I just wonder if you would agree with that as obviously I don’t really understand what the report says. Is there a way I can send you copy if you would be kind enough to take a look for me please

Enterolab can now take samples from Europe so now I am just waiting for a gp appointment to ask for the IgA blood test before being tested to make sure I’m not wasting my money.

I’ve been following my diet of lamb game seafood and a few root vegetables, avocado plus white rice, coconut milk and stewed apple with cinnamon for two months now. My only treat has been plain potato crisps which are just potatoes salt and oil. Not sure if those are a good idea? Any suggestions as to whether I should start to introduce new, most likely safe things, now or wait a little longer? I’ve been reading some people stay several months on their first safe diet. Or is every case different? I just continue to feel so much better than I have done for ages I almost don’t want to rock the boat, however, life will become easier and more normal when I can eat more. I just need to do it much more carefully than I did a month ago when I foolishly tried a few things in one week which didn’t go well!

Thank you once again for all your support to us all
Felicity

[tex]

Hi Felicity,

Sure, I'll be happy to try to interpret that pathology report for you. I'll send you my email address in a private message so that bots that scan the Internet looking for email addresses won't be able to see it.

Potato chips are normally safe for us as long as the oil they're fried in is safe. Most of us avoid "vegetable oil", because that usually contains soy oil.

Tex