NEWBIE but not so new.....

CanadianMommy · Post by **CanadianMommy** » Tue Oct 21, 2014 3:58 pm

Like many others, I have been reading through this forum for quite some time before actually getting to a point where it was time to post! So, hello to all of you, who I already feel I know, and thank you so much for all your help on this journey!

A bit about me - I'm a 34 year old female, I was diagnosed with LC back in July of this year after months of explosive WD, exhaustion, nausea, pain, and just feeling like I was dying! Of course, like many of you, the initial visits to the doctor were resulting in negative stool tests for parasites, negative blood tests for anything obvious, and my doc telling me it was simply related to stress. After pushing and pushing I finally got to see a GI, had a colonoscopy, and got the LC Dx. I have been struggling with Endometriosis since the age of about 14, have had 8 surgeries to date to remove endometriosis from many organs in my body. (looking back now, I believe a lot of the extra inflammation from the endometriosis could have actually been from undiagnosed LC). I have had bowel issues most of my life, mostly constipation through my teenage years up until early this year when the WD started and wouldn't stop. Of course, I was diagnosed with that good old "IBS" many years ago as well, and told to manage it with Metamucil and reduce my stress and dairy consumption. Again, looking back I believe this LC has been around for some time, but nobody ever bothered to look for it because the endometriosis on my bowel gave them no reason to search further. I agree with Tex's idea that this disease is like a volcano just waiting to explode and once stress has gone on for too long BHAM! At least that's how it worked out for me. And like most others, been a perfectionist my whole life, always stressing about anything and everything. Add to that a father dealing with cancer for years, a bad separation, not being able to work for over a year for another illness and not being able to collect any disability, and having to care for a growing little girl who is larger than life! I know I was a ticking time bomb, but I wasn't expecting this at all!

I started on 9mg Entocort immediately after my Dx and found relief from the urgency, non-stop WD, feeling of food poisoning and accidents. I had already been DF since about early March as my doctor had suspected a parasite. I went GF after my DX of LC and after finding this sight. I have been careful not to consume much soy, but as you all know it can be difficult. I have done my best to eat simple foods, home cooked and frozen in portions for my week. My safe foods so far seem to be chicken, turkey, lamb, rice, sweet potato, gold potato, overcooked carrots, almond milk, bananas, almond butter, gluten free chex. Lamb is definitely the easiest meat and rice is something I consume more often than the other veggies. After about 2 months on the 9mg of Entocort, I was noticing C, so I cut down to 6mg a day. Things were going well for a few weeks and then I started to suffer the WD again immediately after eating. On the advise of my GI, I went back up to 9mg at the beginning of last week, but am still experiencing WD and even at times feeling as though I've got food poisoning (severe nausea, pains that make me sweat and feel like I'm going to pass out, horrible body pains, etc, lasting for hours). I work in car sales and of course it is very difficult to maintain long work hours and I am just terrified any time a customer wants to take a car for a test drive!

I'm trying to go back to basics, I'm almost starting to suspect the almond butter. Lastnight after work I went home and just ate and ate, I was soo hungry (which seems to be the norm since cutting my diet back so much). I think I overate though or just gave myself too much variety of safe foods because I paid for it dearly and am still paying for it today with pain and WD. I know this takes time, but the frustration is just horrible! I am a single mom of a 6 yr old little girl and keeping up with her is difficult and I feel so bad that her life is suffering because of my disease. She is one of those kids with an "old soul" though, always looking out for mommy and cuddling when I'm not feeling well and even helping to cook mommy's safe foods (and usually sharing in eating them too).

Anyway, sorry for all the blabbing, I do actually have some questions. I finally managed to budget myself enough to go ahead and order the Enterolab A&C tests, I've had enough of this guessing game. But it wasn't until after I ordered the tests that I realized - OMG, I bet I can't even do these after being on the Entocort so long!!! But, I'm also still reacting, even on the 9mg and restricted diet, so I'm wondering if the Enterolab tests may be accurate based on the fact that I'm still producing antibodies to something?

I've read on here that some find that cauliflower can be a safe food, but is it not known to be a gassy food? I, like many others on here, have suffered from GERD for many years (and believe that my long term use of Nexium contributed to this), and have always found broccoli and cauliflower to be gassy. I know, everyone is different, but is there some science behind why some people are ok with cauliflower versus broccoli? I'm wondering if it might be worth a shot to try since I'm bored with my diet.

I am currently taking Vit D and using magnesium oil as a rub when I remember (thanks Gabes), and I'm also currently taking Iron and Vitamin B complex, as my Iron and Vitamin B were pretty low on my last blood results. My pharmacist is great and is very knowledgeable when it comes to thinks that can affect my tummy with LC and is very careful to make sure I don't ingest anything that would be unsafe for me. Of course, the iron took a while to get used to (it causes tummy issues in people without MC), but I have slowly adapted and I am hoping it will help my energy levels soon. Are there any vitamins that I'm missing that I should be focused on this early in the disease?

I think that is all my questions for now. I'm not going to ask the usual - what should I eat, when can I feel better, how can I cope with this - I completely agree that everyone is so different in what works for them and what doesn't. Unfortunately I haven't been as strict as I know I can be, and I have been suffering for it, but I'm slowly getting there (hopefully!) I do have Tex's book at home, looking forward to reading it when I get some me time. Although I can say I've learned so much on here already!

Thanks again to everyone on this board for your great ideas, suggestions, support, and knowledge. Like almost everyone else, my GI was no real support. He said it's not auto-immune, no mast cell activity is involved, and basically I'm stuck with it for life and need to decide what works for me in treating it. I will give him a teeny bit of credit though, he did acknowledge that I am gluten sensitive even though I tested negative for celiac, and he did agree that diet plays a role in maintenance. Apparently when you see a specialist in Canada, their job is to "diagnose" not to "treat", or so I've been told.......

Gabes-Apg · Post by **Gabes-Apg** » Tue Oct 21, 2014 4:26 pm

I am glad our posts and discussions have helped you thus far!

what you have said about still reacting when you drop the dose of the entocort, there is something in your eating plan that you are reacting to... I wouldnt try anything new like cauliflower until you figure out what is causing the issue.

are you having eggs at all?
maybe you have to eradicate soy totally! i get that it is not easy but it might be the thing causing you issues.
and as you have most probably read here, maybe histamines are an issue for you, have you tried taking anti-histamines?

even though I had gerd, and lots of gas and bloating, I did ok with Cauliflower. As you have read many times here, we are all very very different, what works for one, can be a total nightmare for another, trial and error is the only way with ingredients like that.

I would wait a bit before investigating any other supplements, get some stability in your symptoms first, get the inflammation levels down. Anything taken via the gut will not be absorbed properly while you have the inflammation, so best to get gut settled before spending any money on other items.
Keep up the Vit D3 and the mag oil

with the mag oil, if you can have a small spray bottle near the toilet, and spray the top of your legs each time you go, it is a good way to get good dosage through the day.

hope this helps! hang in there you are on the right path. Given the years of inflammation and issues, it will take a while to get good quality healing etc..

healing hugs
Gabes

CanadianMommy · Post by **CanadianMommy** » Tue Oct 21, 2014 4:37 pm

Thanks for the quick reply Gabes.....

I initially didn't take out eggs, but thought they might be an issue early on. Well, I was right! When testing boiled eggs, I reacted within 1/2 hour with cramps and WD. I seem to do ok if they are baked in my homemade muffins or baked rice, but definitely not on their own.

I think I have mostly been able to avoid soy since I haven't been having any processed foods. But, I have noticed the honey nut GF chex have a soy ingredient here (not sure if it's different in other countries) although I don't seem to react when I have them with some almond milk. That would really be the only source of soy in my diet at this point, at given I don't react to them on their own, I don't think it's the problem.

You're probably right about the cauliflower, best not to try anything new just yet. It's so difficult to cut down my foods even more when I'm working such long hours and finding myself so hungry and tired all the time. I'm sure something I'm eating is still causing an issue, but I can't bare the thought of eliminating even more! I was thinking yesterday's reaction was simply due to overeating. But I have had other days with reactions that I can't explain when I've been eating my "safe" basic home-cooked foods. I had even thought that turkey was an issue one day, but it hasn't seemed to bother me since.

I haven't really tried an antihistamine yet. I did take it for a few nights and noticed my nausea was reduced. I guess I should give it another go and see if it helps settle things down. I was trying to avoid the antihistamines until I figured out what I have been reacting to. I'll give it a few more days and try to be even more strict with my diet and failing that, I will try the antihistamines again.

Thanks for the tip about keeping a spray bottle by the toilet! Great idea! It's the one place I know I will find myself regularly throughout the day, so it should be a great reminder for the magnesium! LOL

CanadianMommy · Post by **CanadianMommy** » Tue Oct 21, 2014 4:51 pm

Also forgot to mention - have been tested for thyroid, normal results. I have noticed I bruise very easily though and cuts and scrapes take a very long time to heal - I'm guessing due to inflammation? I also tore some ligaments in my ankle about 2 months ago and am still experiencing quite a bit of pain - is this the inflammation as well? Or is it because my body is so focused on dealing with the inflammation from the LC that it can't focus on healing everything else in a timely manner?

I also deal with low blood pressure, low blood sugar, dizziness upon standing, etc. From what I'm reading, others have experienced some of the same symptoms, but could it be another Ai issue going on? My doctor doesn't seem to think it's anything other than poor diet (well, what he considers "poor" because it's lacking so many things that I "should" be eating)

I'm sure I'll have many more questions on this journey, and I thank you ALL in advance for helping me get started on the road to recovery (even though you didn't know it! LOL)

Gabes-Apg · Post by **Gabes-Apg** » Tue Oct 21, 2014 4:55 pm

the hunger could be insulin/blood sugar related. Not easy i know, but if you can have small meals more frequently through the day it might stop the night time hunger, big meal. for years, before the MC and even now, I cant eat big meals of an evening.

the other trick is to try and have some protein with every meal/snack.
Things like Rice protein powder is fantastic, affordable, and great for work as you can sip it through the day (keep them made up in a cooler bag under your desk and sip some when you can)
things like Eggless banana muffins/biscuits made with some protein powder are a great snack
(or given you do ok with small amount of cooked egg, use a little bit in the baking)
or savoury type muffins with your safe meat and veges, these are ok cold, if you cant access oven.

have the meats, rice, veges for breakfast and evening meal and then use the suggestions above through the day when you are at work.

Nausea is one of the symptoms related to histamine/mast cell... If there are major triggers around you (either pollen, chemicals, environmental etc) then you may need higher doses of the antihistamines to calm the inflammation that is happening in your gut.
and might be what you need right now to reduce the intensity and symptoms so you can get a eating plan in place that will suit budget and work requirements!!

If you have the 5-10 mins a day, keep a food/activity journal. it may help you pinpoint things/locations/activities that are causing some of the issues.

and give things time, easier said than done I know! we want to be well, we want things to work!
not doing too many changes at once and being patient is one of the best things we can do.

The bland limited diet is not forever.... there are treats on the other side of the rainbow!

Gabes-Apg · Post by **Gabes-Apg** » Tue Oct 21, 2014 5:01 pm

love the photo xo
BP (either high or low) is common for MC'ers and for those having Histamine issues

the bruising is because the years of inflammation have depleted key minerals/nutrients. Lets get the gut settled first, inflammation minimised and over time you can replenish the nutrients/minerals and correct the issues.

With the 1. inflammation minimised, 2. the gut 'fixed', and then 3. taking the right doses of the right supplements has given me vast improvement. the supps wont work as well until the first two steps are in play.

CanadianMommy · Post by **CanadianMommy** » Tue Oct 21, 2014 5:52 pm

I have tried to eat smaller amounts throughout the day as I find it helps to deal with the nausea. Bigger meals lead to trouble - bloating, nausea, and sometimes D. I will continue to work on eating more throughout the day. Thanks for the suggestions on the muffins! I usually bring a GF banana muffin with me as a snack, along with some GF chex, sometimes a banana, and of course a safe lunch. I will work on getting some more snacks. I have been considering the idea of a protein drink of some kind, thanks for giving me that reminder! I think that will be the trick to helping fill my belly a little more through the day :) You're awesome Gabes, thanks so much for all the great suggestions! I never even thought of savoury muffins with meat, I will have to give that a try!

I'm going to re-attempt the anti-histamine as well. If it will help with the nausea, it can't hurt to try. Hopefully it doesn't interfere with trying to pinpoint what foods are causing me trouble. I figured the bruising and lack of healing was due to inflammation, thanks for confirming. I have done SO much reading over the past few months, my mind is on overload, but I seem to understand most of the concepts involved. Now it's just a matter of really getting myself to get a little bit stricter to nip this in the butt! (pun intended)

And I'm glad you like my picture, thx so much! Its one of my favourite pictures of my daughter and I :) She is the strength getting me through this all on the really rough days. Just when I feel like I want to give up, she's always there to give me a great big hug and a back rub and a foot rub and anything else she can think of to help me feel comfortable. I know she will grow up to be a nurse or caregiver of some kind!

Gabes-Apg · Post by **Gabes-Apg** » Tue Oct 21, 2014 6:13 pm

Keep in mind, what you learn along the path of your journey, will help her!

As I can handle eggs, i make fritata type things, pre cooked vegetables and minced meats, surrounded with egg, baked in the oven.
freeze them in portion size. ok cold, nicer warmed up.

the protein mix/shake is the only way i have survived working, and dealing with things like moving house.
I mix mine with a bit of coconut sugar, raw cocoa powder, coconut water and rice milk.
My rice protein has good levels of the amino acids which are fantastic for leaky gut, inflammation. it works out about $2.50-$3.00 a serve which is pretty reasonable when you compare the cost to other food items/meals.
Even on hot days when working in the garden, I have small amounts of it every half hour, it stops dehydration, gives just enough protein and carb to help the muscles, without being to heavy or harsh on my digestion.

take your time, spend a few weeks tweaking the eating plan to suit work, meals with your daughter etc, once you get that into a routine that it is not a stress, things get a whole lot easier. Reduced stress about meals and having meals with minimal symptoms will do loads for your mental and emotional wellbeing.
If there is less stress, meals are easy to digest, the inflammation will reduce. then healing really happens and the energy levels start to increase!!

CanadianMommy · Post by **CanadianMommy** » Tue Oct 21, 2014 6:48 pm

I couldn't agree more about what I'm learning helping her! Naturally I am concerned about the possibility of her developing this awful disease, so I have already tried to start exposing her to more of my "safe" foods, and having her try different things I have baked or new things I have tried. The Almond milk wasn't exactly a hit with her, but she loves the GF banana muffins we make together, GF Chex, and is starting to enjoy lamb as well! I know that over time she will adapt more to mommy's way of eating, but I'm happy even to see her taking baby steps at this point! She is very encouraging and mindful of the things I cannot eat, and is always willing to try something new that mommy is eating.

I am going to look into a good rice protein drink this week, I'm feeling encouraged that this could really help. I'm lucky enough to have my own office at work too, so I have the space to keep extra snacks on hand. I could probably even get away with a mini refrigerator if I really needed it! lol. I'm also going to toy with some frittata type snacks - thanks so much Gabes! I have never really had a problem eating foods cold that should be warm as I've always lived a busy lifestyle, so I don't think I'll have any problems adapting. And at this point, any extra food I can consume throughout the day is a bonus! LOL

Getting used to meal time has definitely been an added stress. But with time I have noticed it has gotten easier. I normally have Wednesdays and Sundays off from work, so these have become my cook-up days and it's good quality time with my daughter as well. I'm limited with the amount of freezer storage at home, or I would probably only have one cook-up day a week! But for now, it seems to be working. I've been stuck a few times where I've noticed I've been short of snacks and too tired to cook, so I'm trying to really stay on top of that to avoid any extra stress ( I know stress is not my friend right now).

I'll keep fighting this thing, one day at a time. I have experienced some good days compared to what I was before, so I know I'm doing something right. I just need to tweak it. And of course reading everyone's great success stories here has really helped me to see that there is hope and the fight now will pay off down the road. Every day I remind myself how nice it will be to taste a fresh fruit or a salad again and this is my motivation to stick to the simple foods now to reap the reward later on!

Post by **tex** » Tue Oct 21, 2014 7:46 pm

CanadianMommy wrote:A bit about me - I'm a 34 year old female, I was diagnosed with LC back in July of this year after months of explosive WD, exhaustion, nausea, pain, and just feeling like I was dying! Of course, like many of you, the initial visits to the doctor were resulting in negative stool tests for parasites, negative blood tests for anything obvious, and my doc telling me it was simply related to stress. After pushing and pushing I finally got to see a GI, had a colonoscopy, and got the LC Dx. I have been struggling with Endometriosis since the age of about 14, have had 8 surgeries to date to remove endometriosis from many organs in my body. (looking back now, I believe a lot of the extra inflammation from the endometriosis could have actually been from undiagnosed LC).

Welcome to our Internet family. I'm sorry that your symptoms are so severe and so persistent. The fact that you have had digestive system and lower abdominal issues for most of your life suggests that as Gabes indicated, recovery may be more difficult and may take longer, compared with some members here. Are you by any chance using any form of HRT? I apologize for being nosy, but LC is often strongly affected by hormones and hormonal changes, and it appears that both hormonal issues and HRT can frustrate efforts to achieve remission for many patients. That doesn't necessarily mean that no solution exists, it just means that finding a treatment program that works well may be more difficult than usual.

CanadianMommy wrote:But, I'm also still reacting, even on the 9mg and restricted diet, so I'm wondering if the Enterolab tests may be accurate based on the fact that I'm still producing antibodies to something?

That's an interesting question that we haven't considered before. It's certainly possible that you may still be producing enough antibodies for the tests to work. However, there are other avenues and mechanisms by which inflammation can be propagated, so there are certainly no guarantees that your continued reactions are based on the production of antibodies. IOW, inflammatory reactions are possible without the production of antibodies, unfortunately. Because of that, I really don't know how to answer that question. There's probably a better than average chance that at least some of the tests might not be reliable, because of false negative results. That said, if any of the tests were to yield positive results, then those results would certainly be valid and reliable.

Looking at this another way though, you have only been using Entocort for approximately 3 months. It's certainly possible that if your antibody levels for most of your food sensitivities were relatively high initially, then they might not yet have decayed below the level at which they will product positive test results. And any foods that are in your current diet (that are tested, such as chicken and rice), should provide valid test results. Therefore, if I were in that situation, and I could collect a sample very soon (IOW, if I had the kit available), I believe that I would go for it, with the understanding that certain foods (such as casein, for example) might show false negative results. Gluten and soy, on the other hand, should certainly show valid and reliable results. If you had been using Entocort for 6 months or longer, the odds would not be nearly as good, but since this information could be so valuable for you, I believe that I would try the tests. Above all else, the sooner we can control the symptoms, the better off we are, not only for our comfort and convenience, but for our overall health in general.

CanadianMommy wrote:I know, everyone is different, but is there some science behind why some people are ok with cauliflower versus broccoli? I'm wondering if it might be worth a shot to try since I'm bored with my diet.

My opinion on foods such as this is that testing it to see if you can tolerate it is not that big a deal, since if you cannot tolerate it, it will not cause you to produce antibodies — it will only cause uncomfortable symptoms for a day or so. Still, as Gabes points out, we shouldn't be trying to introduce foods frequently during the early stages of recovery, because the simpler the diet, the easier it is to tell what might be causing us to react, and typically, the faster we will recover.

CanadianMommy wrote:Are there any vitamins that I'm missing that I should be focused on this early in the disease?

If you have been reacting for a long time (or have test results that show low levels), some of the B vitamins (especially B-12 and folic acid) may need supplementation, but other than that, vitamin D is the most important vitamin during the early stages of recovery. After you've been in remission for a while, then you may want to consider additional changes either in diet or supplements that will help to balance your nutritional needs.

CanadianMommy wrote:I will give him a teeny bit of credit though, he did acknowledge that I am gluten sensitive even though I tested negative for celiac, and he did agree that diet plays a role in maintenance. Apparently when you see a specialist in Canada, their job is to "diagnose" not to "treat", or so I've been told.......

That would put him ahead of the pack here in the U. S. GI specialists appear to be slowly coming around, but many of them seem to specialize in being hard-headed when it comes to recognizing that diet changes are the key to remission with this disease.

CanadianMommy wrote:I have noticed I bruise very easily though and cuts and scrapes take a very long time to heal - I'm guessing due to inflammation? I also tore some ligaments in my ankle about 2 months ago and am still experiencing quite a bit of pain - is this the inflammation as well?

If those problems showed up after you started taking the Entocort, it's because those are side effects of corticosteroids. They cause the skin to become thinner, and they actually retard healing. Many people assume that they promote healing, but research shows that they retard healing, instead. They do help to suppress inflammation, though.

Have you taken ciprofloxacin or one of the other fluoroquinolones in the past? That class of antibiotics is notorious for causing tendinitis and torn ligaments. And now there is solid evidence that they also can cause severe neurological damage for some patients.

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

Tex

Post by **tex** » Tue Oct 21, 2014 7:52 pm

CanadianMommy wrote:The Almond milk wasn't exactly a hit with her

Which version of Almond Milk are you using? Personally, I use Silk Almond Milk, and I always choose the Vanilla flavor. The Original flavor doesn't appeal to me at all, but the vanilla version is thick and creamy, and tastes great. I like it better than cow's milk.

And if a microwave oven is an option in your office, one can certainly change the palatability of cold meals.

Tex

nerdhume · Post by **nerdhume** » Wed Oct 22, 2014 4:10 am

Don't have much to add. Just wanted to say welcome to the group.

I'm with Tex on the almond milk. I like the vanilla light version. I buy the regular if I will be using it to make gravy, etc. If I am using it for making puddings or desserts the vanilla just adds to the sweetness.

CanadianMommy · Post by **CanadianMommy** » Thu Oct 23, 2014 1:36 pm

Tex - yes, I have been on birth control since about 14. I've read a lot about the downfalls of being on it with MC, but unfortunately I need it to regulate my endometriosis or I will be in even worse shape!

for the Almond milk, I have been using Almond breeze w/coconut. It's a new one out, unsweetened so 0g of sugar (which is great for me), but I'm sure that's why she wasn't too impressed with the flavour. LOL I will keep an eye out for the Silk Vanilla and try that for her.....

As for the Enterolab tests, I wrote them an email and this is the response I got:

Your Question: I ordered test A & C last week, and also sent an email regarding this but have not received a response. I have microscopic colitis and am currently taking 9pm of Entocort. I had tapered down to 6mg daily, but my diarrhea and pains increased so my GI increased them back up to 9mg for the past week. Will this affect the results of the test? Do I need to wait until I go off Entocort to do the tests? Thanks

Response: Dear Collane, Sometimes Entocort can cause immunosuppression wherein the immune system cannot produce antibodies as regularly as it normally would. In most cases, 3 months on Entocort does not cause severe immunosuppression, but this would depend on how great your antibody production was before staring the medication. You may wish to consider having a total or secretory IgA antibody blood test performed before submitting your sample to us just to make sure you are able to produce those antibodies. Also, check your laboratory blood tests to see if this test has already been recently run. If you come up IgA deficient, you could cancel your order with only the $50 cancellation fee instead of paying for 15 tests that do not yield the information you were expecting. Please let us know if you have additional questions. Sincerely, Phyllis Zermeno, RN, BSN Clinical Manager

Post by **tex** » Thu Oct 23, 2014 3:13 pm

Most of us avoid the Almond Breeze products because they contain carrageenan (or at least they traditionally have included it as an ingredient — it's possible that they may have eliminated it in the new product, because some companies are beginning to become aware that it is a very undesirable ingredient)

It's gratifying to see that EnteroLab's response appears to be very similar to what I wrote in a post above. Unless I had a reason to believe that I had selective IgA deficiency, I believe that I would go for it. Otherwise you have a long wait ahead of you before you can take advantage of any test results.

Tex

CanadianMommy · Post by **CanadianMommy** » Thu Oct 23, 2014 3:25 pm

Thanks Tex. I think I'm going to attempt it. I asked my doctor to do an IgA deficiency test and he said there was no need for it and no need for Enterolab testing. Rather than fight the fight, I think because my body is still reacting to something there should be enough of a response to at least give me readings on some of the foods that I'm eating right now that I believe to be safe that might not be. Otherwise, you are correct, it will be a long time before I am off the Entocort for long enough to do the tests. Hopefully because I've only been on Entocort for a few months, that might work in my favor as well.

And yes, the Almond Breeze does still have carrageenan in it. I checked every brand of Almond Milk at my local stores and they ALL have it. Since I don't seem to react to the Almond Milk, I'm hoping for now I do not react to carrageenan. But, if I find I am otherwise following a strict diet down the road and still experiencing issues, I will have to re-explore the possibility of a carrageenan intolerance.

Thanks again for all your help!