Help with Enterolab Results Interpretation

[tex]

Since cast iron pots and pans are capable of absorbing gluten, they surely are capable of absorbing other molecules, as well. But rather than throw them away, I would simply re-season them. That should take care of any problems.

Tex

[Sonia]

Hi friends,

I'm 12 days into this elimination diet, but it feels like an eternity!

Going back to the high IgA for gluten in my stool--I'm guessing this means that I can't expect improvement for perhaps months?

Patience is a virtue--I'm just so tired of waking up at night with WD :(

Still waiting to hear back from my GI to see if I can get back on budesonide with a slower taper, with the hopes of limiting inflammation so that I can maintain a pregnancy. They seem unwilling to put me on for longer than 12 weeks at 9mg, but suggested a longer course of 6mg as another possibility. I read in Tex's book that the 6mg maintenance dose seems pretty safe, but is it necessary to be on a higher does to jumpstart remission? Any thoughts on which would better in my situation?

Thank you,
Sonia

[tex]

Hi Sonia,

It typically takes six or seven weeks, sometimes more, in order to get the anti-gliaden antibody level down to a point where it will be below the threshold at which a reaction is triggered.

Re: budesonide treatments, it's usually necessary to begin them with a 9 mg dose, but sometimes the transition to a 6 mg maintenance dose can be done after a week or two in the case of re-treatments. But we don't all respond equally to budesonide, so it takes some of us longer before we can taper the dose, than it does others.

Tex

[Sonia]

Thank you so much--helpful as usual! It is good to have a ballpark idea of when I can expect some "results", and I will keep this in mind when/if starting budesinide again.

With gratitude,
Sonia

[Sonia]

Hello friends,

So--I'm not quite a month into this diet. My WD is mostly limited to the morning, and I'm no longer having to take immodium before bed, so I think this is progress (??). My symptoms are now similar to what they were in years past.

Tomorrow I have an appointment with my GI, and I'd love insight on two things:

1) I'm wondering what approaches folks have had in discussing the Enterolab results/elimination diet with their doctors.

2) I'm considering going back on budesinide to limit inflammation while trying to conceive. If I do this and the inflammation goes down again, what do I do about diet? Is it safe to add in other fruits and veggies as long as I don't eat things that I'm sensitive to according to Enterolab? I don't mind eating turkey and lamb for the rest of my life, but I'd love to eat an apple :) Thanks for any advice in managing budesinide and the diet together/safely.

Thank you!
Sonia

[Gabes-Apg]

my observations over time with this group only about 10% of doctors are 'open minded' enough to embrace/acknowledge the role of diet with reduction of symptoms.

sadly the role of health providers has become a system of provide medication to treat symptoms
( in tibetan culture the community pay the doctor whilst they are well and payment stops when they are poorly. sadly our system is wrong way around with doctors and big pharma making money while people are sick)

I would strongly encourage you NOT to use medication to widen the diet choices. the role of medication and limited diet is to reduce inflammation and optimise healing. if you can encourage good healing now in your first round type thing, it is a good foundation for long term wellness.
to prepare the body for healthy pregnancy having inflammation levels as low as possible is a good goal.
keep in mind that the health of the baby (and its gut health) is reliant on the health of the parents before conception and during pregnancy.

with time and good healing there are good chances for treats such as a peeled apple. The first 6-12 months are the hardest.
there will be scents of ingredients we miss but with time your brain goes - not worth it and the craving goes away in 15 seconds.

(I dont mean to come across harsh - my mother had a hard pregnancy with me, blood infections, measles, hormone induction etc. I was born with gut issues and poor health, all of which was a big contribution to lifelong health issues and by age 45 having 5 auto immune conditions).

[Sonia]

Gabes,

Thanks for your reply. And this doesn't sound harsh. To clarify, I'm not interested in taking budesinide for the purpose of expanding my range of food choices--I don't want to take it all, but my ivf docs (who I really trust) agree reducing inflammation is essential. I guess I'm just wondering whether if you take budesinide you need to stay in "stage 1" of the elimination diet indefinitely. I can do this, just preparing myself, and also still shifting my mindset of what a healthful diet (for me)) consists of. The mental and emotional aspects of eating aren't just about cravings (and I would guess that is true for most people).

My husband thinks I should share whole story with my GI, but I feel like it is best to keep the conversation limited to drugs and dosing.

With gratitude,
Sonia

[Gabes-Apg]

if you are doing the restricted eating plan, you may find that you only need a lower dose of the budenside to keep inflammation at a minimum for the iVF process

I was lucky, I had been gluten free/lactose free for 9 years before my MC diagnosis, and eating home cooked whole food meals, so the adjustments to suit MC world was not a huge one for me. (Australia is very different to USA culturally in this regard)

my experiences with mainstream doctors - tell them what they need to hear to get what YOU want
I am frequently asked as to why I am not taking immune suppressants / steroids etc. and I reply that MOST of the time I can keep the issues calm /manageable with low toxin lifestyle (I dont focus on the diet aspects). here and there I am asked to expand what that entails. One doctor doubting that the diet and supplements I had been doing for 8 years could work, demanded comprehensive tests at that stage there were no issues evident in mainstream blood testing.

I have mentioned a few times in discussions over the years here, so apologies if you have already read this. There are people in remote areas of countries Like Papua New Guinea, Africa Tonga etc that exist on minimal ingredient eating plans. those communities are eating what their ancestors have eaten for 300 years plus. in those communities there is no diabetes, heart disease, IBS/IBD etc
I worked with a Papua New Guinea lady that for first 18 years of her life she lived on a total of 12-15 ingredients (that includes tea!)
only when she went to university in the capital city did she find out that there were other ingredients in existence when she had her first visit to a supermarket.
Then when she got to Australia and saw the impact of multiculturalism with what supermarkets stocked and restaurants she was very shocked (or as I say gobsmacked).

it is only in the past 60 years or so that eating styles / ingredients has expanded.

[Sonia]

Hi friends,

Here's an update--my GI and IVF doctors have finally gotten on the same page and decided that I should start another 3 months of budesinide, and that it would be safe to take 9mg through the first trimester pregnancy.

But, now I'm not feeling so certain and I have decision-making fatigue. Here's what's happening:

1) Diet seems to be slowly working, I think? I've been doing this about 6 weeks. Down from about 10 stools/day to 3-4 mostly in the morning. Still WD in the morning, which I understand is still a sign that the MC is active.

2) I've asked my docs about a slower taper and also whether I could wait to start the budesinide for a couple weeks. I'd like to give the diet at least 8 weeks before starting the budesinide, but my embryo transfer is scheduled for mid-late April so my doctors may want to make sure inflammation is reduced well before that.

3) Has anyone here taken budesinide during pregnancy? I couldn't find any posts specifically about that.

4) Wondering if my protein-carb ratio is off, if I should try to eat a larger percentage of meat/duck eggs and less sweet potato/bananas/green beans. Could too much fiber potentially slow down healing?

5) I continue to eat all home-cooked food that I described in a previous post and I don't think I'm getting any gluten contamination.

Thank you for any thoughts. I feel like a broken record with this IVF thing, but I am so lucky to have one viable embryo and don't want to screw it up. This may be my only chance.

-Sonia

[tex]

Hi Sonia,

Here are my thoughts after reading your update:

It sounds as though your recovery is on track, and you're doing well. In a few more weeks, you may not feel a need for budesonide, if you continue to improve. My memory is not what it used to be, partially due to the stroke I had a few years ago, but probably mostly due to old age (I'm 80 now), but I can't recall anyone posting about taking budesonide during a pregnancy. If someone else remembers a case like that, hopefully they'll post about it.

Yes, too much fiber can slow down healing, but as we begin to heal, probably we can slowly begin to tolerate more fiber in our diet. Most likely, each of us has a different threshold for the amount of fiber we can tolerate, anyway, depending upon our inflammation levels. Unless you are eating abnormally large servings of sweet potatoes, bananas, and green beans, you're probably not taking in too much fiber.

Remember, that's just my opinion, based on my own experience, so the opinions of others here may differ.

I hope this helps,

Tex

[Sonia]

This is so encouraging, thank you. Just hearing that I'm on track is helpful (I just posted elsewhere that I kind of lost it tonight over my family frustrations with food prep). I'm not eating extra large servings of bananas or sweet potatoes, but since these are now staples in my diet I'm in eating these where I would have normally filled up with rice or gf bread. I'll try to be patient:)

You seem pretty with it (80 or not!), and I appreciate your commitment to this forum. Sonia

[Sonia]

Update: I started 9mg budesinide 9 days ago and have continued with the diet. Have been feeling good and my symptoms improved after about 2 days on the medication.

Then last night I had terrible abdominal pain and a sudden onslaught of diarrhea. I started hyperventilating and felt like I did last summer when I had sepsis (another saga).Long story short, went to the ER and they found nothing wrong from blood tests and a CT. Back to normal today, but will do a stool c difficile test if diarrhea returns.

Any ideas if this was just a rogue infection? I ate the same things as usual and my family all ate the same dinner as me and no one else got sick.

Thanks for any ideas, gratefully,
Sonia

[tex]

I'm no doctor, but that sounds a bit like an allergic reaction to something. I'd suggest that the reaction might've been against budesonide, except I assume you're taking the budesonide first thing in the morning, in which case I would assume that an allergic reaction should have occurred within a few hours or less. If it were me, I'd call my doctor's office for an opinion, just in case they're aware of a impossibility that a budesonide reaction could occur later In the day.

Budesonide has a long list of possible adverse reactions:

https://www.mayoclinic.org/drugs-supple ... g-20073233

One thing that makes the budesonide a possible suspect is the fact that it's the only item that the rest of your family did not ingest prior to your reaction. I hope this helps.

Tex

[Sonia]

Thanks for sharing your thoughts. I messaged my doctor about this and so I'll see what she says; reading the list of potential side effects is a little terrifying (as it is with any drug). I've been fine since returning from the ER so fingers crossed that this won't happen again...

Sonia

[Sonia]

Hi all,
Sharing an update. I've been on the strict diet for over 3 months now. Started budesinide about 2 months ago. My stools have been pretty normal--one in the morning that is soft, muddy, or sticky. But no WD.

Random trip to the ER I think was just due to a virus; my son also had D for a couple days which isn't typical.

My only cheats on the diet: an occasional baby carrot when I'm dying for something crunchy; a few Enjoy life chocolate chips.

Other big news is that I am pregnant after a successful ivf transfer. This is a miracle and I am beyond grateful. I will meet with an OB and GI in a couple weeks to determine how and when to do the budesinide taper, which kind of scares me as I don't want symptoms to come back. But I also want to get off the drug.

The bad news is that I'm starting to get "morning sickness" in the form of food aversion and some of my staples are grossing me out (I have to gag down sweet potatoes). I have thought about making tapioca/cassava crackers (in previous pregnancies I ate a lot of corn or potato chips,but those are out for me, as are rice and almonds--all the typical gf flours.) Any thoughts on this? I have to eat something and preferably something that doesn't make me feel sick.

Also, since morning sickness started I've had looser stools,but I think this is a typical non-mc side effect too.

Thanks for listening and for any guidance,
Sonia