When should I start seeing improvement?

[MomLady]

Hi there,

Well, it's been a tough 3 weeks so far. In attempt to find a safe diet, I wound up going nearly all carnivore. No grains, no fruit or veg.

My Enterolab results I can repost if helpful, but basically I had to quit gluten, dairy, soy, and chicken eggs. The other info was:
Mean Value 11 Antigenic Foods 18 Units (Normal Range is less than 10 Units)
Food to which there was significant and/or the most immunological reactivity (3+): Corn, Tuna
Food to which there was moderate immunological reactivity (2+): Oat, Rice, Chicken, Beef
Food to which there was some immunological reactivity (1+): Pork, Walnut, Almond, Cashew, White potato
Food to which there was no significant immunological reactivity: None

What I'm wondering is, should I be seeing some more improvement here? Before my radical changes, I was having about 2 soft-serve BM's and then a few D's in the morning after my first meal. Now I am getting a few 6 and 7's, then some watery D episodes after the first meal. Sometimes a few later in the day. (In retrospect, about a week of much more watery D was when I first transitioned to carnivore/keto, and I have read that is a common side effect for beginning such a change even for normal healthy non-MC people. That greater activity has mercifully abated).

What I am eating/doing now:
- I take the magnesium oil spray on skin
- I take Dr. Mercola's Vit D spray (oral)
- I fast for about a 16 hour window (more or less. This is done from expediency so I don't have issues in the early AM walking dogs, plus I read fasting can be good for gut healing. Since I am probably in ketosis on this diet, I don't get hungry as often, so it's not been too hard).
- First meal is: 2 duck eggs and usually pork bacon from Trader Joe's. I tried 3 days of turkey bacon from TJ's instead, wondering if pork was no-go since it is a +1 for me, but didn't see a huge change. I also drink a cappuccino of coffee and one Truvia packet and a cup (about) of unsweet Silk Almond milk. (I don't think tea or coffee was an issue for me pre-MC).
- Snack might be a piece of turkey, or homemade lamb bone broth.
- Second meal is either turkey (brands should be GF SF: Trader Joe's and Shadybrook Farm and occasionally Butterball) or lamb. If oil is added, it's a little olive oil or coconut oil.
- Random other things are the occasional LaCroix (no gluten, sugar, or soy. They say "All LaCroix flavors are derived from the natural essence oils extracted from the named fruit used in each of our LaCroix flavors"), Earl Grey black tea by Bigelow (no soy or gluten), coconut oil with a teensy bit of sugar on it, like a 1/2 tsp (the shame, I know. But OMG I am so tired of meat and salt flavors only.)

Maybe 3 weeks is too soon to expect big changes, but it's been one of the longest periods of my life! I wanted to share this to see if I am doing something wrong that is preventing me from seeing more improvement. Sometimes I get really frustrated in that before I got my test results, I ate anything, and if I am judging strictly by BM's, I can't say all my new changes have been a win. If the answer is "stay the course," I can accept that, I just want to have some assurance I am on the RIGHT course. Since I am still shopping and cooking for my family in the "normal" way, I am still surrounded by a world of food I cannot have, which is hard.

The only positive change I have seen is that I am less nasally congested than usual. I have taken Flonase for several years ("chronic non-allergic vasal motor rhinitis", "You don't have food or environmental allergies" said the doc), and other antihistamines in the past. Now I use a lot less Kleenex than I used to, and I almost forget to use the morning neti pot. That is definitely different, and suggests to me some kind of problem for my nose has been removed.

Thanks to any who can help.

[tex]

Hi,

You're diet looks generally safe to me, so you should be well on your way to recovery. Most of us require several months at least, before reaching remission. We're all different in response times and rates, but recovery within a few seeks would be unusual (thou sometimes possible). A few of us require much more time (six months to a year) in some cases, but most of us probably recover in a few months. It usually takes a long time to develop this disease, so it takes a while to recover.

The fact that you noticed an improvement in respiratory symptoms already, is definitely a good sign, and further evidence that you're on track. You will probably start seeing some improvement in your other symptoms soon.

Tex

[MomLady]

Thanks for that reassurance, Tex, and for the really fast reply. You are such a treasure to do this for folks. It really helps to know I am (probably) not doing something wrong right now. I was especially worried that maybe the pork (+1) bacon would have to go, because it's one of the best things I get right now. I'd rather not do this really strict diet period and then find out, "Gee, if you'd only done X a month ago, you'd be way better by now!"

At some point I would be thrilled to introduce cashew/almond butter, but I will hold off a little longer I guess.

Thanks again.

[brandy]

Your diet looks generally safe.

Only comments--use the stevia with the least amount of ingredients, I think there may be a better one than truvia

I used to drink the La Croix. Now I drink San Pellegrino plain.

If you are having WD I think that San Pellegrino plain or Perrier plain is safer. Compare the ingredients to the La Croix.

You are headed in the right direction. If you getting soft serve or 6 or 7 you are heading in the right direction.

One of our contributors went into remission eating mostly protein. JFR. Her story is in the success story section.

[brandy]

The respiratory improvement shows that you are reducing inflammation which is key for us to heal.

[MomLady]

I'm entering week 5 of what I hoped was a safe, carnivore diet (see earlier post), and I am losing faith here. I can accept that healing may take a very long time, and that for a while my food choices may be very limited. But when I look at how my symptoms are now, as opposed to before I started messing with my diet, I have to say the D is worse. I don't understand this. Before diet changes, I had a soft-serve stool in the morning, followed by a few looser stools, but generally all was over and done with inside of 2 hours or so. IE the D wasn't really impacting my life. Now I have to go much more frequently, and have many more watery D's, with 6 and 7 thrown in as well.

I suppose it is possible that I have picked safe proteins that are not safe (turkey, lamb, sometimes pork bacon, duck eggs)? I'm soon going to try dropping coffee. I just don't understand how my elimination diet (GF, DF, SF, chicken egg as per Enterolab, plus grains, fruit, and veg) can have made my life WORSE. Even with intermittent fasting so as to get a dependable window of "I can be safe running errands and not have to dash for a bathroom" isn't working very well. I didn't have to really plan my day around D before diet changes.

Note I am not saying "the diet change model doesn't work" because I see there is plenty of evidence here on the board it helps people.

Advice?

[tex]

Are you taking any medications or supplements? Or using the same cutting board you used previously? Is everything cooked from scratch (and by you)? Are you eating any commercially-prepared products? Are you using a contaminated toaster oven, or any wooden bowels, or wooden spoons?

I agree with you, something is seriously wrong, because you should be getting better, not worse.

Tex

[MomLady]

Thank you for the quick reply - it's so reassuring to have someone who cares "right there," ready to help.

My supplements: Vit D spray from Mercola, and Magnesium oil spray from Whole Foods. Flonase spray as before.

No toaster (there's no bread), no cutting board (I'm only putting meat into a dedicated aluminum pan which (post diagnosis) I am only using for me. No wooden utensils. My food is all prepared by me, very basic foods that should be safe from weird additives (Trader Joe pork bacon, TJ ground turkey whose rosemary flavor is supposed to be only that not soy, Sam's Club Shadybrook ground turkey, local farm duck eggs, Silk almond milk, 1 Truvia, coffee, whole cuts of lamb from grocery that says just lamb. No fruit or veg. Very occasionally a cup of organic just chamomile tea or La Croix, but none of that in the past few days as I have worsened. Coconut oil, sometimes with a speck of sugar (i know!).

I am not having other physical symptoms that are bad, like fatigue or brain fog or anything i have read about on this forum (didnt' have that before either).

The last two nights I have woken up with a little D. Watery, yellowish, as it is often in the day, and smelly. I have barely started to read about bile issues on this forum - could that be a factor?

thanks,
Janet

[HockeyMom]

If something isn’t working, try something else. You can waste a lot of time with diet tweaks that ultimately won’t fix the problem...

Laine

[tex]

I believe you're zeroing in on the problem, and I agree with Laine. Your latest symptoms sound a lot like bile acid malabsorption (BAD). Smelly is typical for active MC, and normally, yellowish formed stool would simply suggest fast transit time, but yellowish watery D could be BAD. Ask your doctor for a prescription for Sandoz brand cholestyramine. Be sure it's specific to the Sandoz brand because most of the others don't work nearly as well (if at all) for most of those who use cholestyramine. Lite versions don't work, either. Your GP should be willing to write that prescription because this is a relatively safe drug that's often prescribed to treat high cholesterol levels.

Start with two packets per day and if necessary, experiment with the dose until you find one that works well for you. Laine has found that she needed as many as eight packets per day in order to get control, but most people require much less. Don't take more than you need because it can cause constipation, cramps,etc.

Please don't interpret this as medical advice (since I'm not a doctor), but it's what I would do if I were in that situation.

Keep us informed on how well it's working.

Tex

[MomLady]

Thanks for that tip. I was thinking maybe it was time to try the cholestyramine. I don't have a relationship with a GI doc currently (last guy retired), but maybe my regular doc would prescribe it. Lord, will that be a long conversation to explain why I want it, and doubtless they will want to see me, etc.

Really appreciate the super fast responses when I am feeling so lost on this! Not sure what to eat now in the meantime.

[tex]

I would just continue eating what I've been eating (anything you believe is safe for you, or anything the EnteroLab results show to be safe for you). If the cholestyramine works for you, you should see improvement quickly (within a day or so), but as mentioned, fine-tuning the dose may be needed for optimum results.

Good luck with the treatment.

Tex

[MomLady]

Thanks. I will get in touch with my GP or failing that, set up with a GI doc, and see if I can get the cholestyramine.

As for sticking to "safe" foods right now, well, that is kinda ironic. Enterolab said I reacted to nearly everything. By trying to go really "safe" I managed to make everything worse. Maybe I will just stick to avoiding gluten, dairy, soy, chicken eggs, and maybe my +3 (corn, tuna) and possibly +2 (which is a ton - chicken, beef, oat, rice). But the full carnivore only, no grain, no fruit or veg hasn't worked so well. Sigh.

[tex]

A phone call to your doc's office might suffice, unless you haven't seen her or him for a long time, in which they may want to see you.

Vegs like carrots, squash, sweet potatoes, green beans (even though they're a legume), and colored potatoes (such as yellow or red) are usually relatively safe for most members here.

Tex

[MomLady]

Thanks so much - I have those veg here. I suppose I could always look on the bright side and say perhaps going all carnivore made me realize I could have a BAM problem. There's definitely a genetic component here - my mom has CC (she is 83) and her sis just got dx'd with LC.