Recently Diagnosed and Confused

[grannykathy]

Hi all,
I have been visiting the site as a guest for a few weeks. I was diagnosed about 2 months ago with MC after having D for about 8 wks prior. I was tested for Celiac and it was negative so my GI doc is telling me I can eat whatever I want and it has nothing to do with it.

He also is telling me not to take any supplements of any kind right now. He prescribed 9 Mg per day Budesonide. That stopped my symptoms in a week and then quickly turned into constipation. I got so miserable with the constipation that I stopped the pills altogether. Even then had to take a stool softener. but then eventually of course, the D came back so I went on 2 pills a day. That produced improvement but still very loose stools so now I'm back on 3 a day. Have only been back on 3 (9mg) for 3 days but so far still pretty loose.

Anyway, as for my confusion, in all my research I decided to purchase Vit D and Magnesium and was taking both until doc said no supplements. I also saw somewhere, (maybe not on this site) that the VSL3 probiotics could work wonders so I ordered it. Now I'm reading on this site that maybe probiotics are not good. So I haven't taken any of my $70 a bottle probiotic because I'm afraid to.

And of course this site tells me that food does matter even if you do not have Celiac so I just don't know what to do. Take magnesium or not, take vit d or not take probiotics or not, watch what I eat or not.

Oh just another piece of info, I had cdiff last Summer. During that time, I started taking a probiotic called Garden of Life Raw Probiotic Colon Care and also Florastor and ended up having the best digestive health I had ever had in my life up until all of a sudden in late January or Early February of this year I woke up with D and that was the end of my good digestive health.

I started out at 130 lbs before the cdiff. Went down to 120. Had gained back up to 124. Now with the MC I am down to 116. No clothes that fit me at this point. I know many have lost more weight than that but I just really didn't have it to lose.


Any advice or encouragement is much appreciated.

[Erica P-G]

Hi Kathy,

Welcome....

Yes diet does make a difference....Yes take 5000iu VitD3 and get at least 400-500mg elemental magnesium (no oxide that acts more of a laxative because you have to take so much to get any benefit from it) a day and it can be a combo of internal and external doesn't matter as long as you do it.

Your Budesonide...I can't give advice one way or the other on this one as I chose to not take it while I was finding my safe foods and just put up with the water D until it started calming down and I could tolerate myself.

I understand probiotics are a 'crap shoot' for some of us....if they work for you then do it! I recently switched from Dr. Mercola probiotic brand to Saccharomyces boulardii a vegetable-natural yeast type of probiotic and I am getting along with it pretty well, but then I am also taking a maintenance dose of Nano Silver to get rid of bad bacteria and candida yeast in my system as well, it does way more than this but for the purpose of intestinal bacteria that is the reason I am taking it....(it will not get rid of the good bacteria that helps break down food so that is why I am taking it as I am).

You will find that once you find your 'safe foods' your weight will come back around again, mine did.....so don't worry to much as long as you are proactive in finding foods that you do not react to. Staying gluten, dairy, soy and egg free will get you on a good start of elimination. If you can afford to do it, Enterolab stool testing A1 & C1 approx $539 will pinpoint exactly which proteins you are reacting to and that gives one a definite advantage to starting to feel better without the time it takes to figure out the safe foods.

You can do this....hang in there!
Erica

[grannykathy]

thank you so much for your post, Erica.

So The Magnesium I have is Drs Best High Absorption 100% chelated 100 mg. So I should take 5 a day of these? I use to take the Jarrow Saccharomyces boulardii. I have been out for some time but just ordered more. I will get back on them. I started them last Summer when I had cdiff. Also have the Garden of Life Probiotic Colon Care. I guess I should start on them again. How many of the boulardii do you take? I hate that I spent $70 on the VSL3 but I'm scared of them now. some say they can really make you sick.


I wish I could afford the $539 for testing but just can't right now. Although if I get on down the road and can't get better I may just have to find a way.

If it weren't for needing to cook for my husband it would sure be easier to do the elimination diet. Not sure how I'm going to figure that out. Maybe just cook up a bunch of stuff to put in the freezer for him while I do it.

I hate this. Food is my only vice. I hate to have to give up everything I love. Bread and sweets are my first loves. Oh and cheese. :(

[tex]

Hi Kathy,

Welcome to the forum. The magnesium you have is the best type for us. While you are in the recovery stage, I would suggest you take only about 3 of the magnesium tablets each day (I take one with each meal for better absorption). You can always take more later in your healing if you need to. But while you're still recovering it's safer to not overdo it — it's possible for some people to have diarrhea if they overdo the magnesium. We are all different in how we respond to various supplements and medications.

Also please be aware that each time you completely stop and then restart taking budesonide (or any cortiocosteroid) it becomes slightly less effective for you. Normally, we recommend reducing the dose at the first sign of constipation in order to prevent having to completely stop and then restart the treatment. As you have found, restarting the treatment requires a full dose (or more) in order to regain efficacy.

Just a FYI — after 5 or 6 months of taking budesonide your immune system will begin to become somewhat suppressed. As it becomes progressively suppressed, the stool tests offered by EnteroLab may no longer be as reliable, and they will begin to show false negative results for some reactive foods. After about a year of taking budesonide the tests will be pretty much useless as they will miss most reactive foods.

Yes, we all miss being able to eat anything we please, but having to eat a very restricted diet beats the heck out of living in the bathroom and not being able to go anywhere.

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

Tex

[Erica P-G]

Hi

Yes 5 of the Drs Best spread out during the day is perfect...be aware that external topical magnesium may be something to consider because it does not get into the colon so can’t create diahrrea I am taking one S Boulardii with breakfast....it was 235 mg I’m about to up that to two tomorrow because the one I ordered after the first happens to be 435 so will see what happens with that kind of dose.

If you were comfortable with the ingredient list of the VSL don’t be afraid of it...if nothing else take it every other day see how it goes...sometimes we get a bit worse before we feel better while our body detoxifies.

I totally understand the love of food grief. If it helps, I went thru a grieving process while reminding myself I’m doing this to feel good again.....I was tired, literally, no energy, cramping intestines and I was sooo tired of running to the bathroom. It was completely running my life...no more...I finally feel like I am mostly in charge again.

A trick for yourself would be to make bone broth and turn it into a soup....I use Cornish hens and I make around 10 full cups worth. I use a crockpot cook the bones for 3-5 hours and transfer it to a stock pot and create a noodle soup with Tikiyada gluten free noodles and celery and carrots and seasoned with sea salt only. I portion this when my veggies are all soft into individual portion containers add bits of the cooked off Cornish hen and freeze. That way I can cook for my husband and when I can’t think for myself I pull one out and that is a perfect protein meal easy on the gut but is helping me to heal me too.

Start slow....but just start....it’s all about Progress not Perfection

[grannykathy]

Thanks again Erica. And especially for the Bone Broth recipe. So does canned Chicken Broth have gluten in it. I know it is not nearly as healthy as homemade but is offensive for the gut in some way?

Thank you Tex. So Tex are you saying that I should not take the Budesonide? I thought I needed to heal the inflammation with the Budesonide; then wean off of it; then try to stay off of it with diet. If I do take the budesonide, should I go ahead and try either gluten free or elimination diet WHILE I am on the budesonide? Sorry. I'm just trying to get the order of all this figured out.

Also, I am confused about sweetners. I thought Splenda was Stevia. Is it not? I have to have a little sweetner in my coffee. So which is best? If I do the elimination diet and drink only tea, I will have to have sweetner in my tea also.

[tex]

Hi Kathy,

According to published research, corticosteroids (including budesonide) actually retard healing, but probably not by a huge amount. The reason why many members here take it is to make life much more pleasant while allowing the diet changes to stop the inflammation and heal the digestive system. Budesonide can give you a false sense of security because it tends to mask most symptoms of food reactions, which can lead to a relapse when weaning off the medication. (You will probably feel almost "normal" while taking budesonide). But if you are avoiding all of your food sensitivities while you are taking budesonide then you should be healing and you should be able to remain in remission when you wean off the budesonide. Weaning very slowly is the safest way to ensure continued remission.

The point is, avoiding inflammatory foods prevents the inflammation from being generated in the first place. Budesonide only suppresses the inflammation after it exists, but the inflammation will be regenerated with each meal if the meal includes an inflammatory food.

Yes, Splenda is made from stevia leaf extract and erythritol (which is made primarily from dextrose using a fermentation process). According to published research it can promote the development of so-called "bad" bacteria and intestinal inflammation (at least in Crohn's patients).

Artificial Sweetener Splenda Could Intensify Symptoms in Those with Crohn’s Disease

That said, most members here feel that they can safely use Splenda without any problems. Personally, my opinion is that sugar is always better and safer than any artificial sweeteners, so I use sugar cubes in my coffee. Splenda would almost surely be a safe sweetener if it weren't for the synthetic ingredient (erythritol). But that's just my opinion, of course.

I hope this helps.

Tex

[carolm]

Hi Kathy- welcome to our internet family.

I did take Budesonide for 4 1/2 months when I was in the big ugly flare that prompted my diagnosis. I started with 9mg per day. In my case, Budesonide helped me to get back on my feet and continue working while I sorted out my diet, which for me meant eliminating gluten, dairy and soy. When constipation developed I dropped to 6mg, and when it developed again a few weeks later I dropped to 3mg. Eventually I went to 3 mg every other day, then every third day, until I finally stopped it altogether. I did not rebound because I had my diet figured out and eliminated most of my problem foods.

Budesonide will not bring remission. Only diet changes will do that. You have to eliminate whatever is causing your inflammation. When I saw that 95% of the members on this board had to eliminate gluten, the odds were great that I needed to as well. In my case eliminating soy was vital to reaching remission too.

Once I stopped Budesonide I realized I was reacting to eggs so I eliminated them (until remission).
Budesonide can mask some food intolerances. I did do the Enterolab panels A and C and found it extremely helpful. It eliminated some of the guesswork for me.

You are in the roughest stage of this journey. When I first became ill everything was an irritant. I eliminated caffeine, sugar, fat, fiber, and anything acidic- in addition to gluten, dairy and soy. I ate the same 6-7 foods for a year building up from there. I did not use supplements until remission, so I suggest you start slow with small doses and spread them out (like Tex described) and make sure they are at least gluten free, preferably soy and dairy free too. I did not have a good experience with probiotics when I tried them.

I think the one thing you’ll find that we all agree on is that diet changes are what bring remission. Anything else that we did on that path to remission will vary from person to person, but reducing inflammation through diet is key. The sacrifices are not easy but well worth it when it leads to getting your life back.

Best wishes-
Carol
Ps- re:sweeteners- I suggest sticking with honey, agave, or sugar, if you can tolerate it. I’d avoid any artificial ingredients.

[grannykathy]

Thank you again Tex and thank you Carolm.

Carolm can you tell me what those 6 or 7 foods were that you ate in the beginning? I am trying to get started. I went and bought chicken breasts, lean ground beef and thin breakfast pork loin chops. Also potatoes and applesauce and more canned peaches. Oh and canned green beans and carrots.
I don't think eggs are a problem for me but should I eliminate them anyway for now. Hate to. Breakfast is difficult without that option. I don't eat them every day but...… I meant to get Rice Chex but forgot - but then if I can't put milk on them...… I really want to give this a shot. I told my husband and he was on board as long as he doesn't have to eat like me. :)

So today I had a cup of sliced canned peaches for breakfast. They have always set ok with me so figured they are ok? Then I had a baked potatoe with a little Chicken Broth over it and salt and pepper for lunch. Today is my 4th day of being back on 9 mg Budesonide. Had bad diarrhea yesterday morning but no bm of any kind since then. I do have a burning sensation at the top of my abdomen today - just below the sternum (sp). I've drank a lot of water today and for some reason water sometimes causes this sensation. I took one of the 100 mg magnesium tablets not long before this sensation began so wonder if that's it. But as far as any lower tract discomfort, I've not had any today.

Right before I had the bad D yesterday morning I tried drinking an ensure plus. I thought it would be an easy breakfast and give me some xtra calories.
Big mistake! I wish there was a meal replacement drink that was safe. But I guess not huh?

Tex the first time I started on the 9 mg Budesonide per day it only took a week before I was constipated. So I what point do I know when to drop down to 6 mg. Like 3 days no bm or 4days or what? Last time I just stopped them and of course now I know that was a mistake.

And one more ?. Can I have decaf coffee? I hate hot tea and have to have something hot in the morning.

Oops thought of one more = what would be wrong with having gluten free products like bread during the elimination period?
Thanks so much

[tex]

Hi Kathy,

Almond milk, at least the vanilla-flavored version (not the original version) is better (IMO) than cow's milk, and it's safe for virtually all of us. Canned peaches are cooked and peeled, so they are generally safe, however, fructose (the primary sugar in them) is difficult to digest, especially in larger quantities. And the sorbitol is not digestible, so it can cause problems for some of us. Also, you need to minimize fiber, so keep the serving size small to moderate. For many of us (especially during the recovery stage, our breakfast looks just like any other meal. After you are in remission you can experiment with other breakfast options.

I wouldn't wait 3 or 4 days, I would reduce the budesonide dose after the second (if not the first) day without a BM.

If coffee sent you to the bathroom before MC, it will continue to do so after MC, but it shouldn't add to the inflammation. Most of us are able to drink regular coffee (with caffeine).

Any commercially-processed product with more than 5 ingredients should be avoided. The risk is very high that one or more ingredients (or a combination of ingredients) will prevent you from reaching remission. After you are in stable remission, you may be able to tolerate certain GF products. As a rule, the fewer commercially-processed products you eat, the sooner you will recover. Baked products such as bread, buns, rolls, cakes, pies, etc. are especially risky. Most of us just avoid them and we are able to avoid a lot of trouble and recover sooner.

Tex

[carolm]

Hi Kathy,
My basic safe diet was chicken, turkey, white rice, green beans, carrots. I later added red potatoes, and later ground beef. I rotated my foods so I never ate the same food twice in the same day. If lunch was baked chicken, potatoes and carrots then dinner was beef, rice and green beans. The next day it might be beef with potatoes and carrots, so chicken, rice and green beans were dinner. You get the idea. As for breakfast I was usually nauseated in the mornings. If lucky I’d start getting hungry about 10:00 am and I’d nibble on some deli turkey. My dicey stomach could usually handle that.
Rice was the only grain I ate- or that I still eat.

Keep in mind these were my safe foods. We have other members here who react to chicken and rice. They may have had to eat sweet potatoes and pork or fish instead. You really just have to test foods to know. I used those few foods as my baseline diet. When I wanted to test a new food I’d have a serving of the new food, and made sure that was the only new thing I added. If I did ok after day 1 I’d eat another serving on day 2. If I was still okay then I’d have another serving on day 3. If I had no reaction by day 4, I considered it a safe food and knew I could add it to my diet. I recommend adding things systematically like this so you can be clear on how your body responds to introducing something new.

Like Tex, I like almond milk as a milk substitute. Regarding commercially baked goods- the sickest I’ve been in remission is when I tried some Trader Joe’s packaged cookies and brownie crisps. I suspect they had some hidden soy, based on my symptoms. While recovering its best just to keep your foods simple and eat cleanly.
For recipes, check out Dee’s Kitchen in the Forum on this board.

Carol

[grannykathy]

Thanks again guys! Does anyone ever get away with butter. I think I'm going to miss it as much as anything. I grilled a chicken breast last night on my George Foreman grill. I used a small amount of Canola oil. (I hate the taste of olive oil) and I sprinkled on a little garlic salt. I had eaten a baked potatoe in the afternoon with a little chicken broth poured over it, so I I didn't have a potatoe or rice for supper - just the chicken breast and some canned green beans. Butter sure would make it all taste better.

[tex]

Kathy,

If you can't live without butter, try ghee (aka clarified butter). But be aware that some of us react to it. A safer choice for some is Earth Balance Soy-free Spread.

Tex

[grannykathy]

So I saw that someone said they included Bacon when they were doing meat only. Seriously - we can have bacon? Can I have that on my elimination diet? I thot fat was bad. If I could have bacon I might just survive this thing.

[tex]

Contrary to what many doctors mistakenly claim, bacon fat is actually a healthy choice for humans — we evolved eating animal fat you know. I'm not sure that bacon is a good choice for a recovery diet, however, because of the curing chemicals. Some members select uncured bacon for that reason. Also, some of us are sensitive to pork.

Doctors tend to parrot the policies of the American Heart Association, and the AHA has an agenda, so they tend to ignore scientific research. Because of that, the AHA mistakenly condemns the consumption of animal fat.

Tex