Multiple questions trying to sort things out.

[Carrie1959]

Hi, all. My name is Carrie. I have Hashimoto's and have always had Celiac Sprue. It runs in my family. Within the last few years, I have been diagnosed with esophageal dysmotility, retroesophageal reflux requiring a Modified Nissen Procedure, and (just within the last few months) LC. Aside from wheat, barley, rye, and oats, which are a given with Celiac, I am allergic to Lactose, Eggs, Soy, and possibly corn. I carry an Epi-Pen for mold. While I have never been diagnosed with Mast Cell, I have suspected it due to symptomatology and the fact that both my youngest daughter and sister had/have it.

First, let me say, that I'm all about that urgency. I do not have cramps and I strongly suspect the dysmotility has "moved on down the line" to my intestines. (I'm so afraid that I'm going to be one of those old ladies in a nursing home who has to stay in bed in their own feces until someone finds the time to take care of them.)

I have what I call "flares" and "Mega-flares". Flares are just a million poops all day long. Currently, I'm on the Pepto-Bismol treatment, so right now everything is black and tarry. Every so often, I will have a Mega-flare. When these first started back in 2016, I was taken to the hospital and DID NOT have any bowel involvement, however, I did vomit bile. I had an extreme pain--and I'm used to Celiac pain where you are lying on the bathroom tiles in agony--located either in where I would think the transverse colon would be or (as I thought at the time) in my diaphragm. I couldn't even talk I was in such pain. My son-in-law thought it was a heart attack, called an ambulance, where I went to the ER and tests showed my potassium to be at 26, and my liver enzymes at 150. A week later after treatment for the potassium insufficiency, both levels (including liver enzymes) were back to normal.

Every so often (once to three times a year) I would get these same Mega-Attacks: extreme pain (NOT CRAMPS--or as my doctor calls it--a "little tummy ache"--potassium would stay at low normal. But Liver Enzymes would go up to 300-400....and then return to normal a week to ten days later. We found some triggers....sugar being one of them, NSAIDs another. I've DC'ed both for several years now. They continued, but less often and started to include not only the vomiting of bile but watery stools as well. Had esophageal ultrasound which showed improbable Sphincter of Oddi dysfunction. Had liver biopsy which showed damage that was regenerating and suggested medication was the cause. DC'ed Cymbalta and Crestor. Been off of those for well over a year. Colonoscopy a few months ago showed LC, and I started with the Bismuth Subsalicylate. A month after that I had another "Mega-Flare". This time we did NOT go to the ER. (Husband has cancer and sarcoidosis, and I did not want him sitting in an ER for hours on end.) In retrospect, I should have gone to the ER just to see if my enzymes were high again. Vomiting and watery stools for two days with the pain only lasting one day.

I am a very active person. I need to be on pointe. My entire family revolves around me and depends on me. Due to the Celiac Disease, I have osteopenia and I'm receiving Prolia injections. A sub-treatment of this is exercise, but I'm so worried that I'll have an accident that I don't leave the house much. How do you exercise when you are not in control?

I want to go to Enterolabs, but I've never been able to give a fecal specimen because I urinate at the same time. It is 100% impossible for me to give a "clean" sample. I feel so overwhelmed, which isn't in my nature. I am very used to pushing my problems aside to take care of everyone else's, but I'm getting too fatigued to do that. Doctors' visits to a GI here are two months out. No one's got time for that! It's just a hurry up and wait!

Started a bland diet on the 11th. Bought an organic chicken (twice). Made my own bone broth (delicious). Found out rice is a trigger. But now all I get to eat is chicken broth and chicken for three months! I REALLY don't want to go on a steroid. The Bismuth doesn't seem to be working (but I can see my GI in AUGUST). I want to treat this with diet, but I'm beginning to think that I won't be able to eat anything! At 63-years-old, I just want someone to tell me what to: STEP 1, STEP 2, STEP 3

I live in Tulsa and my GI wants me to go to Mayo or Cleveland, which are both a BIG NO for me.

I'm open to suggestions. I promise I won't be one of those people who say, "that won't work because..."

[Gabes-Apg]

Carrie - welcome to the group and sympathies that you had to find us and the issues you are having

I wish there was a one solution fits all Step 1, Step 2 etc solution
Sadly in MC world, what causes major grief for one person can be totally fine for another person
each of us have to figure out major triggers, minor triggers and make the necessary eating plan / lifestyle adjustments to suit.

We do have a guidelines to recovery section that provides a backbone type system that each person can adopt and use to sort out their 'safe staples' eating wise.
https://www.perskyfarms.com/phpBB/viewforum.php?f=79

Long story short the best way to 'getting your life back'. minimise inflammation triggers (food, lifestyle) and help the body moderate inflammation (key nutrients like Vit D / magnesium) and where necessary use medication

with medication sadly there is no one medication that works for all many here have had to use trial and error with medication and dosages to come up with solution that works best

based on your story and current situation - take some time to do some reading of the posts aimed at new members, the guidelines to recovery and also the success stories area, here you will see what others did, what they leant and how they achieved remission or reasonable remission

Re the Enterolabs testing - have you contacted them about the sample /urine issue? the urine may not impact the testing


with the bland eating - be patient. if there are high levels of inflammation even starting on bland ingredients it will take time for benefits of bland eating and medication to assist. especially where you are reacting to external triggers like mold etc.
have you had your Vit D levels checked in the past 12 months?? spend some time reading the posts about Vit D3 and magnesium, I think you will see the key information about auto-immune issues and Vit D/magnesium.

the other aspect based on your notes - you have to listen to your body, learn to put yourself first (guilt free) and give up traits like perfectionism
the mental and emotional aspects of life with MC (or any auto immune) are just as important as the food and meds.
We dont eradicate the issues, we learn to live with them, we keep them as calm as possible as much as we can.
Your needs, your routine needs to be towards the top of the priority list, with love and care (no resentment)

hope this makes sense
take a few deep breaths, do some reading and no doubt you will have more questions as you explore the information
take care
hugs
Gabes

[brandy]

Hi Carrie,

Have you tried the prescription for Cholestyramine? I'd say it is a step up from pepto but not a steroid.

If you decide to try either the cholestyramine or budesonide/uceris (steroid) your local GI can prescribe them
and in fact my PCP prescribed cholestryamine to me when I asked.

[brandy]

The urine may not be an issue with Enterolab but you need to contact them to verify.