March 6, 2023

gut and other updates

Because I'm silly, I thought I could write about our tragic family situation last week AND tell you about some progress we've made with Lad. Plus the updates to my gut issues. About 4,000 words later I realized, I had to move SOMETHING to the next post. 

So here we are with UPDATES:  

I was supposed to see a new GI, but couldn't get in until April. What now? I really wanted things sorted out before Coach and I fly to Ireland March 22nd. I called Feb 23rd and they had a cancellation for the next day at 1:00. We'd hoped to leave the house to see Mini at 1:00, but I figured I better jump on that appointment. 

This GI doc, a woman, is wonderful. She listened. Asked if I had a rash anywhere - WELL, YES I DO, THANKS FOR ASKING. AREN'T YOU DETAIL ORIENTED? I have a rash under my bra line, along my front-side. It itches in the winter. She is gonna test me for SIBO and Refractory Celiac, but they are scheduling far out (not a 60's reference, just a commentary on how booked they are). 

The SIBO (small intestine bacteria overgrowth - sounds lovely) test involves breathing in a tube. The doc ordered a ton of bloodwork too. That part stunk, because I had to wait an hour until they could stick me with a needle. I thought they were gonna bleed me dry. I wondered why they hadn't had me breathe in this tube at the same time. I didn't ask questions - I rushed home to grab Coach and drive to Notre Dame. 

Well, the hospital called on Monday to schedule my breathalyzer breathing in a tube or a bag test. Turns out I cannot eat probiotics for 2 weeks before the test. I cannot take the acid reducer that I just started - a thing that I think helps me, for 2 weeks prior to the test. The test lasts 3 HOURS. That's a lot of breathing. 

The real clincher:  If I've taken an antibiotic recently . . . um, haven't finished the one for my kangaroo-pouch-inducing sinus infection, then I have to wait 4WEEKS till I can schedule. Ouch. That sucks. I haven't been on an antibiotic in ages. What are the chances? So much for getting it done before Ireland. 

I contemplated pushing the test back till mid-April vs April 5th, because I will be in Ireland and unable to eat yogurt (a huge/easy go-to for me when I'm hungry and other countries usually have this available) and unable to take the anti-acid pill. I really don't want to wait any longer, so I'm gonna have to find something else to eat over there. Fingers crossed.

I need an endoscopy to figure out if I have refractory celiac, which only impacts like 1.5% of celiac sufferers. What on earth? I hate celiac, but could it be that I'm really celiac's bitch and have this refractory version? I can't get the endoscopy done till early June. 

Or is it plain and simple irritable bowel syndrome? But I don't know that IBS would include weight loss. 


I reached out to Aunt Leprechaun a few weeks ago to let her know I was baling on the GI who she recommended years ago. She supported me leaving the GI, but wasn't surprised having heard he'd gotten popular and then was less attentive.

I told her that my family practice doc asked me if I had any stress going on. Well, duh. But that's always the case. Things ebb and flow. Life is like that. 

I've never told anyone on my side about the dark days we survived when Lad got mad at us (mischaracterizing what happened. He was struggling with boundaries and stuff). He stopped living here and stopped having any positive communication with us. I shared a shortened version with Leprechaun, saying that while he's doing SO much better than he was right after graduation in '20, we're still wanting him to be more considerate, etc. 

Her perspective:  She believes firmly this is Lad's ADHD. He no longer takes meds. She's done loads of research. Gave am ADHD talk and didn't want to look unprepared, so she overprepared. She sent Coach and I a bunch of articles. One in particular hit home

It's not like we can just say YO, LAD - TAKE YOUR MEDS AGAIN, but we had a conversation with him. It went REALLY well. We said things like THIS ISN'T YOUR FAULT. And ADD COMES WITH EXTRA BAGGAGE - AND YOURS MIGHT BE ANXIETY. We've urged him to go to a doc and get some meds. He's not a fan. I was like LOTS OF DIFFERENT OPTIONS. IT MIGHT TAKE SOME TIME TO FIGURE OUT WHICH ONE AGREES WITH YOU.

This feels like a shift. He forgets stuff/leaves stuff around/doesn't do things in a timely manner, and I'm feeling less (not completely) irritated by it. Not like I forgot he had ADD, (he's not hyper) but it really impacts life outside the classroom, which has not been our mindset. As a kid, his doc said he only needed meds on school days - not weekend, etc. He took meds while in college, but he's an adult. This article was eye opening for us. Baby steps. 

A few other things on our plate at the moment, but we hope to continue to nudge him towards seeing a doc who might help. 


Why have I ever flown without
sitting in an emergency exit aisle?
Hello, leg room.

I'll update you on my Texas weekend soon. On my flight I rewrote this post in my exhausted brain, but since it's 11 pm Sunday and I babysit in the am - last week's draft it is (that's why I drafted it last week, after all). 

I know it'll shock you: I HAVE LOTS TO SAY. While the situation is heart breaking, I met Uncle's neighbors. News flash:  don't be surprised if we sell our house and move to this Texas neighborhood where the people are DEVOTED to one another. It's heart warming. I can't wait to elaborate. Plus a grandma cuter than Betty White, who I considered sticking in my back pocket to bring home. Her quotes will kill you dead. 

For now, I'm happy to be home where there are no cats (allergies are real, friends) and where the GF possibilities are endless and abundant. Even if I did come home to a messy kitchen with a dishwasher that wasn't loaded. Heads will roll. HEADS WILL ROLL. *Coach was teaching in New Orleans so he's off the hook.

American Airlines for the win:  they offered
 pretzels and I asked if they had anything GF.
It is the year 2023 and American gave me not 1,
but 2 packages of GF/vegan cookies. Day made.

Freakishly Coach landed at O'Hare 40 minutes before me. He was waiting at my gate when I de-planed. We shared a cab home together, which was like a date. A pathetic date, but hey- both out of town? We'll take 27 minutes chatting in the backseat of a car together. Funny how the backseat of a car used to equate to a different kind of date. Less conversation and more kissing. 

Who else remembers when you could walk to someone's gate and wait for them? (when you didn't have your own flight). It's Monday, go ahead and kick the week off with a bang - any good backseat date stories? Guesses on my gut issue? 


Nicole said...

Goodness, I hope you get your gut issues figured out. It sounds like they are really being comprehensive in their testing, so that's good. It's too bad it will take a while to get in but you know, the way time flies you'll (hopefully) get some answers before you know it!
Oooh a date in the backseat of a car! Very scandalous!

Nance said...

Gosh, I don't envy you all this gut stuff. Trying to get the testing figured out is almost as bad as the problem.

I sure do recall when your people could wait with you at the gate and meet you there when you deplaned. It was so much nicer. Flying now is a chore, and I hate it.

As far as a backseat story, I'll just tell you that we had at least one cop use his flashlight to peer in at us in the parking lot at a disco. The End.

Ernie said...

Nicole - I think this doctor is very good. After my ER visit in October, my regular GI shrugged, saying he thought I'd ingested gluten. The bloodwork showed that wasn't the case, but he doesn't try to solve the mystery.

Very scandalous indeed.

Ernie said...

Nance - I feel fine much of the time, so it's not always a pressing issue but I live in fear of the times when things run off the rails. Hoping this doc comes up with answers.

I remember so many times when there was excitement and embracing when people arrived and walked off of the plane. I do miss that. Coach walked very far from his terminal to meet me at mine and I didn't know that he would be there. It was a nice surprise. I miss having the option of meeting someone's plane.

I laughed loudly at your flashlight incident. So funny.

Bijoux said...

Anyone getting any sort of complimentary food on a flight is a win these days. I do fondly remember waiting for loved ones at the gate. I think the first time I was ever in an airport was when we waited at the gate for my grandma on her return from Hawaii, around 1972.

I hope all the testing reveals some answers. It is exhausting and I understand wanting resolution before your trip. Sigh.

Suzanne said...

I'm so glad you found a new GI and that you are moving forward to explore multiple options. I hope they come up with a clear diagnosis that has reasonable (and quick) treatment options!

Yay for gluten free airplane treats!

And I feel so hopeful for Lad. That's wonderful that he is being receptive to your suggestions.

ccr in MA said...

The only story I have of being able to go the gate at an airport is my mother's. She went to meet her sister, and all these really, really tall men were coming off the plane. Turns out it was the Boston Celtics! Can you imagine them cramming themselves into regular airline seats? Even back then (this was probably in the 70s), where there was more leg room than there is now.

Kara said...

Late 90's it was pretty much the norm to meet people at the gates. You still had to go though security, but no one cared about boarding passes. I flew in and out Providence airport quite a bit in 1999-2001 and my husband would always meet me at the gate there (we moved to Phoenix in July 2001, so that practice ended before 9/11).

I recently got tested for Celiac. Not because I show any of the normal symptoms, but because I can't seem to keep Vitamin D in my body. So grasping at straws and testing for Celiac was one of the things. It was negative. And I still can't keep Vitamin D in my body.

Ernie said...

Bijoux - I agree 100%. I actually snoozed through the snack hand out and when they came by for garbage, I asked if they had anything GF. I had my water bottle so I was only hoping for a snack. It felt extra nice when she found me something.

Fingers crossed that nothing happens when we go to Ireland.

Ernie said...

Suzanne - It mades such a difference to find a doctor. I liked my first doc, but over time as my issues ramped up - he seemed to brush me off more and more. Really frustrating.

Well, the talk with him went well, but we still have to revisit our hope that he will start meds. It is a process and he is an adult so we just hope that he will follow through and that it will help. Not a bad kid, but my SIL said it comes with behaviors and those are what is upsetting. The kid is sort of caught in the crossfire but not always able to help it.

Ernie said...

ccr - When Coach was standing off to the side when I landed, it took me back to those days. That is a funny story. That would never happen today.

Ernie said...

Kara - I guess it is easier to just meet people out front but it was also fun to meet people and walk to the car with them. Weird to think that some (young) people have never experienced that.

Eek. That doesn't sound great. Glad it wasn't celiac. I hope they figure it out.

Beth Cotell said...

I'm so glad you like this new GI. Hopefully all this testing will eventually get you the answers you need. I'm also glad that Lad is receptive to the ADD meds. Hopefully he will quickly get on board with seeing the doctir and taking the meds.

Ernie said...

Beth - Yes, it is a relief to find a doctor that seems to be positioned to get answers. The shrug fest at the last place was driving me batty. Well, we TOLD Lad we think he should try meds . . . not sure yet if he will agree. The conversation went well when we basically told him that his behaviors might be ADHD related and that we feel like there are ways to deal with that. Fingers crossed.

Pat Birnie said...

Well it does sound like you are making progress & the new GI doc sounds very thorough. I have heard of SIBO before and also heard that it isn’t often picked up. Good luck on that.

What great insight from Aunt Leprechaun! I’m glad it has helped your perspective on Ladd’s difficulties.

Oohhh. Scandalous back seat date! Very spicy haha

Ernie said...

Pat - You've heard about SIBO. I've never heard of it. I do wonder if I have it - would I have had it for a long time and recently it caused me to lose weight, similar to celiac - if it had been identified sooner my hair would not have falledn out, etc. Or, is it something that started and was always accompanied by the weight loss? Because if it JUST started, then how do we explain some of the issues I had prior to it? I'm not expecting you to answer, but these are the things that make me question whether or not this is the thing.

Yes, the talk with Aunt Leprechaun was very helpful. She's also been very helpful with the OCD situation. I'm very grateful.

Hee hee. I hadn't thought of a backseat date in a long time. :)

Pat Birmie said...

Yes I have heard of it. It was many years ago and was being managed by a Naturopathic Doctor. From what I recall managed with a holistic strategy to heal the gut.

Ernie said...

Pat - Interesting. I'm starting to doubt that I have that one. Who knows.

Busy Bee Suz said...

I think you can lose weight with IBS. No? I dunno anything, really, but I have some IBS tendencies, and I'm not one to lose weight. EVER. But I've heard that can happen.
I pray you figure it out soon. I suppose April will be the soonest, though....

Lad. Uhhhh....I'd forgotten about him having ADD. I wonder if your SIL is right about him needing the meds. I think it's worth a try as long as you can get him on board, which, of course, is the hardest part.

Texas, Howdy Ya'll. They know Southern hospitality, just like Southerners!

Oh, the good old days when you could easily walk up to a gate and not be tasered for it. *sigh*

Ernie said...

Suz - I'm laughing at tasered. Not sure why - but that struck my funny bone.

I mentioned the meds to Lad this afternoon. Nope. Not on board. Maybe SIL will be able to convince him at some point. I'm kicking myself for not realizing that's what this is - it seems too simple, but yet it makes good sense too.

I've always felt like IBS is a catch-all - probably because they told me I had that for years and it turned out to be celiac. To me it is an easy out. Like shrug-fest.

Jenny in WV said...

I think I've had a SIBO test. The doctor referred to it as a breath test. It wasn't too bad. It did take a while, but I had to get up every twenty minutes to go blow in the tube so I wasn't sitting for long stretches. I had it done in the winter of 2011 so before I had a smart phone, I took some knitting and book, plus the TV was on in the waiting room. There were also 6-8 other people taking the test at the same time, so I had company. I actually was failing the test so bad, I didn't have to finish! The doctor put me on antibiotics for a week or two and told me to eat plain Stoneyfield brand yogurt 3 times a week there after. I remember being really hangry because I wasn't allowed to eat or drink after 9pm the night be fore the test, but instead of heading straight to the McDonald's drive through, I went to the insurance adjuster because I had hit a deer the week before! LOL It was a great start to the new year!

Ernie said...

Jenny - Interesting. Was this an issue that happened all of a sudden, or was it a result of an ongoing health issue? To me this test seems like it would be for something that just happened, like a sudden issue - whereas my thing started on Halloween - but has happened as long ago as June of '21 while I was in the hotel with the boys were were trying to adopt. The fact that I was in that situation makes it an easy time marker for where I was/what I was doing. The test itself doesn't really concern me or sound taxing. I'm just wondering if this is a legit possibility.

Jenny in WV said...

Ok fellow readers, this is kinda gross (it's poop talk) - you've been warned.

I went to my family doctor because I had been having sudden, urgent (one minute I was completely fine and the next gotta go right now) diarrhea for a month or two. I was kind of afraid to go to the doctor - was afraid of being sent for a colonoscopy - so I put off going longer than I should have. Family doctor just referred me to gastroenterologist who said I had IBS and to come back next week for the breath test. I'm not sure if the doctor expected too much of the wrong bacteria (as it was explained to me) in my intestines was going to be the issue or if it was just something they needed to rule out first and that actually was my problem. I had had occasional - like a couple times a year- "intestinal distress" before that and since, but it was only the few months before the test that it was a multiple times a week thing. It wasn't a hugely stressful time in my life, so I don't think that was a contributing issue. My current doctor said it could have been c. diff.

Bibliomama said...

Ugh. It sucks to have health issues lingering when you're doing a big trip. It sucks double to have yet one more thing you won't be able to eat while you're there. The Lad situation sounds so difficult, but I think with mental health stuff more knowledge is always better. The back-seat date sounds nice, even with your clothes on.

Ernie said...

Jenny - Sorry - I'm just seeing this now. Interesting to me that you had an issue from time to time and then it got worse. I feel like that is my thing - fine majority of the time, but then not so great times. I'm dreading going off of my anti acid med for two weeks before the breath test thing especially because I'll be in Ireland. Thanks for sharing.

Ernie said...

Ali - I loved LOVED the brown bread in Ireland when I lived there as a student. I will be bummed to be there and not be able to eat it. Celiac is a very Irish thing, so I assume I will find options to eat. I'm not checking a bag, but I might pack VERY light in the clothing department so that I have space for my fav GF Snacks.

I feel like we made headway/had a realization that this might all be his ADD related behavior. That was a comfort - as in SO HE DOESN'T HAVE XYZ PERSONALITY DISORDER, but he is really opposed to meds. The inconsideration or leave-a-trail lifestyle is tough to put up with, so we feel like he needs to at least try something. Otherwise how will he move out and live with other people/future spouse? We are putting up with a lot, but not sure everyone will be willing to do that.

It was a weird coincidence that we were flying in at similar times and we embraced the time to get caught up . . . with our clothes on. ;)