11 months into diet, now regressing

[AnnaliseV]

Hello all,

First of all, I just want to echo others on this forum and say thank you Tex, and so many others, for the patient, thoughtful advice you provide here. Living with MC really does feel incredibly isolating and knowing there are others going through this (even if from afar!) is a light in the sometimes almost constant darkness.

I've been reading this forum pretty extensively over the last year as I've tried to get my CC under control through diet alone. I've reached my breaking point in the last few weeks and decided it was finally time to ask for help.

About Me:
-Sudden onset of WD began at 19; was 22 when diagnosed with Collagenous Colitis (I'm 34 now)
-For 8 years was on Mesalamine and on and off Budesonide as needed
-Have been GF for 14 years (although I am the first to admit I was lax with cross contamination until 11 months ago when I became very serious)
-have two other autoimmune conditions - hypothyroidism (since 16) and PCOS (since 18)

With Covid, other life stressors, etc. life with MC in 2020 became too much and I found medicine wasn't working for me anymore. My GI doc wanted to try me on Humira and after reading about all the side effects I became very concerned. I bought Tex's book, studied this forum, and decided I was finally going to take this thing seriously with the goal to get off the medication and achieve remission naturally through diet.

I began the elimination diet in February 2021. I knew it would take awhile since my body has had years of inflammation. I went off the Mesalamine, Budesonide and birth control. It was rough going for a number of months but I was seeing marginal signs of improvement so pushed myself to continue. Other than cheating for some alcohol for my September 2021 wedding, I have been very strict with my diet. I did Enterolab testing in March 2021 but thought there might be residual Budesonide in my system, so in September 2021, 7 months after stopping the meds, I tested again (results below. The test in March showed elevated levels for soy and egg so I am avoiding those in addition to dairy and gluten). My diet has consistently been:

-Beef/lamb/turkey, occasional pork, chicken, shrimp
-Bone broth (usually lamb, beef or chicken)
-Crown Prince smoked oysters in pure olive oil
-white potato (red or gold), white calrose rice (rotate rice every 4th day)
-steamed carrots/zucchini
-banana
-avocado
-loose leaf pure Peppermint or Chamomile tea
-pure sea salt

I have also been religiously taking the recommended supplements: Ancient Minerals Magnesium Oil/Lotion - 620mg/day and Dr. Mercola Sunshine Mist 5,000 IU Vit D3

By November 2021, I was getting normal BMs and feeling really good. Despite being in the midst of a cross country move was confident I was on my way to remission. I ate some peeled butternut squash in late Nov (thought since I tolerated zucchini it might be a good sub for the whiter carbs) and I'm wondering if that messed me up. Ever since, I've been up and down. My last normal BM was in late December and over the past two weeks, I have been in a true flare producing consistent daily WD (which I hadn't seen in months). I'm still not having the urgency or the frequency of BMs I had when I was beginning all of this, but I am still feeling horrible, and can't seem to shake loose this flare no matter what I do. I haven't changed my diet at all, use all my own utensils etc. no cross contamination in my household and I'm not feeling any relief.

I'm also beginning work with a functional medicine doc - I would like to address my hormonal imbalances ASAP since I haven't gotten a period since going off BC 11 months ago, but realize I can't do that until my gut is in a better place.

I really don't want to go back on medication (am feeling super stubborn about it after all this effort - the idea of long tapering Budesonide with this diet for another 6-7 months alarms me and makes me feel like I failed here) but because of how much of a turn for the worse I've taken, I'm wondering if I need to get back on it and/or try Cholestyramine to give my body a "reset" of sorts. After almost a year on this very strict diet and seeing so many signs of improvement I have to believe I'm at a better place than I was, but I currently feel awful. It's like I've taken a million steps backward all of a sudden and I don't understand. I'm at my wit's end and would love any suggestions/ideas/advice on how to move forward here.


Thank you,
Annalise
-------

Enterolab September 2021

Fecal Anti-gliadin IgA 44 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA 12 Units (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA 3 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 11 Units (Normal Range is less than 10 Units)

Mean Value 11 Antigenic Foods 12 Units (Normal Range is less than 10 Units)

While all of the foods tested can be immune-stimulating, the hierarchy of reactions detected were as follows:

Food to which there was no significant immunological reactivity:
Beef
Chicken
Pork
Almond
White potato

Food to which there was some immunological reactivity (1+):
Rice
Cashew

Food to which there was moderate immunological reactivity (2+):
Corn
Tuna
Walnut

Food to which there was significant and/or the most immunological reactivity (3+):
Oat

[Gabes-Apg]

sorry there is a slight regression

(sorry for brief reply or if it sounds abrupt I have two fractured fingers)

my thoughts

the move in November. is there a big change to climate?
there could be some different toxins/triggers in the new place (mold, pollen etc)
what is the water quality like?


the gluten score in your results is high when the others are low. to me it indicates contamination / ongoing exposure
do you have new cookware/utensils/chopping boards for your food preparation?
did you double check make up / bathroom products for gluten / wheat germ any other wheat related ingredients


the oysters in olive oil - this may have contaminates. (although the zinc in oysters are good for the PCOS)


are you taking any supplements? Vit D3 magnesium?

[AnnaliseV]

Hi Gabes,

Thank you for the quick reply. I'm sorry about your fingers! I hope they heal soon. I have been following your tips on here about PCOS and hope to tackle that as soon as my gut has calmed down.

Ironically during the move itself (cross country drive from Seattle to Philly) my stomach was great! But yes it's been very on and off (and now very off) since I've gotten here. The weather is definitely colder and drier than Seattle. My seasonal allergies went haywire a few weeks ago but seem to have died down. I hadn't considered water quality. I drank mostly tap in Seattle and have been doing so here...but maybe I should try filter for a few days just to test? I have been taking 5,000 IU Vit D3 and 620mg Magnesium Oil/Lotion for the last 11 months since I started the diet.

Over the summer I overhauled my makeup/skincare products and got rid of anything containing gluten...in terms of the kitchenware, I keep separate GF utensils and purchased brand new cutting boards etc. for food prep.

Crown Prince says they are Gluten Free but you are right, it's very possible there are some contaminants in there, and I am starting to wonder if gluten is creeping in to my life still despite all my best efforts.

I was guessing a combination of stress/life changes triggered this but it just seems strange that I would have gone from steady improvement to normal BMs to then this complete opposite WD for two weeks now. Haven't been this bad since early healing days last Spring. It makes me think either it's a crazy coincidence with timing or it's something related to my new environment but I can't imagine what.

[Gabes-Apg]

a bit of adrenalin /excitement during the move may have protected you and then once you started into a routine the issues can start

all the little changes (water/climate etc) might be enough to cause inflammation.
for me, I boil water and then use benchtop jug to filter it.

The hayfever symptoms when you first arrived is maybe an indicator that there are triggers nearby.
did the move involve a job change? is there any change in stress demands related to this?

[AnnaliseV]

I am definitely going to try bottled water for a week and see if I notice any improvement. Thank you for that suggestion, it certainly can't hurt.

I haven't had issues with histamines from food thus far, but am keeping an eye out. Used to have seasonal allergies terribly that went away as I was healing and have come back a bit in the last few weeks.

Job-wise I did have a very high stress job and quit that in April as part of an effort to reduce stress in my life to improve healing - still not working (luckily I have a very supportive partner) but have always been a worrier and like many on this site, have to actively work hard to manage stress.

[Gabes-Apg]

I dont think it is food issue causing increased inflammation

I am leaning towards environmental. There are some here that react badly to dust, pollen, mold, chemicals, pet hair etc

[AnnaliseV]

If it's true, it certainly validates a lot of things. I've been driving myself mad trying to figure out what in my diet is suddenly causing such severe problems!

[tex]

Hi Annalise,

Gabes has offered some great suggestions that covered most of the impressions that I got when I read your posts. One other thing came to mind though. At 620 mg of oral magnesium, you're taking enough to have a laxative effect if you happen to be affected by it the way some of us are. I would try cutting that dose to about half for a few days, to see what effect that might have.

I agree with Gabes on the gluten test results. As many years as you have been avoiding it, if your diet was being cross contaminated by a significant amount, your score would probably be up in the hundreds. Although it seems high now, that's probably just because you've been reacting to it for a long time and your immune system is still ultrasensitive, regarding gluten. It's possible that there may be tiny trace amounts in your diet, because many foods contain trace amounts, but they're generally below the level at which a reaction is triggered. And although those trace amounts in the background don't trigger a reaction against gluten, they're capable of keeping our immune system stimulated, so that it continues to be more sensitive to gluten than normal.

Tex

[AnnaliseV]

thank you, Tex! Re Magnesium - the 620 daily mgs are coming from the lotion and oil spray, so I don't think that's it. I've avoided the oral Mag due to reading about many folks having troubles with it, like you mention.

Yes - the gluten numbers reflect basically 15+ years of on and off exposure so I'm hopeful they will continue to come down over time. I'll probably test again in another 6 months or so just to see where I'm at.

After Gabes' helpful suggestion to think about water quality last night, I switched to exclusively bottled water and this morning had an excellent BM - my first in over two weeks. I don't know if it could really be that easy (?) or if I'm in a better headspace from hearing from you all but I'm thanking my lucky stars for a day of feeling well and hopeful it will continue!

[Gabes-Apg]

I truely hope that it is as simple as the water.

when I was first diagnosed and healing, I would react to a change of water supply. I took my own filtered water with me everywhere.

these days I am not that reactive.

the other thing with the water - is the type of pipes in the house, is it an older house?

[Marcia K]

Hi, Annalise. I hope your issues are resolved by not drinking the water. I live 1.5 hours west of Philly & I wouldn't drink the water!

[AnnaliseV]

Thank you, Marcia! Crossing my fingers that this is the main issue too (for now, at least!)

I'm living in a 100+ year old former chocolate factory that was renovated pretty heavily in the 1980's and outfitted for apartments so I'm guessing that's the age of the pipes. I'm going to keep the experiment going this week and see how things progress, but today so far has been really great!

[Marcia K]

That's great, I hope it continues!!

[AnnaliseV]

Hi all!

Thought I would post an update on how I am doing.

The water change did help, at least for a week or so, and then I was back to my pattern of a few good days followed by regression. At one point I was only going 1x day for weeks, but the consistency just wouldn't budge beyond mushy/mud.

Fast forward another month of this and getting increasingly frustrated - after extensively reading about it on this board, I decided to try Cholestyramine. I began at 2 packets a day and increased to 3 five days in. A couple days after increasing, I noticed MAJOR improvement and am now on Day 7 of 1x completely normal BMs. I am beyond thrilled, as I had convinced myself that BAM was not a problem for me and that I could do this with just diet alone. However, after over a year with very limited foods, I was beginning to feel pretty depressed and stuck. I'm planning to still wait at least another week or so and make sure this isn't a fluke, but I am SO excited to begin very slowly testing a few other low fiber foods--finally--with the goal of eventually weaning off this medication.

I have a question on progressing to Stage Two while on Cholestyramine. From what I've read on here, BAM is completely separate from MC. So, if I'm trying a new food, I should still be able to see that I'm reacting to it, even while on the medication, correct? Just don't want this to be masking any potential sensitivities.

Thank you again everyone for your positivity and help!

-Annalise

[tex]

Thanks for the inspiring update. You are correct, that you should be able to test for safe foods for your MC without being significantly affected by the colestyramine. If you are sensitive to a food, you will still react to it, as usual.

Tex