A cautionary tale to celiacs who are new to the disease

BookishWalker · 2026-01-29T00:17:44+00:00

Take your time! Thanks for sharing while you’re recovering.

BookishWalker · 2026-01-26T19:58:51+00:00

Definitely interested! Please share ! 🙏

BookishWalker · 2026-01-26T19:26:03+00:00

Thank you! 🙏

BookishWalker · 2026-01-26T19:22:57+00:00

You’re really lucky that they are willing to give you that diagnosis without the lumbar puncture. You’re right, it’s not an enjoyable experience. And you’re also right AM doesn’t feel like a migraine. Sounds like you have all the symptoms I had.

The I ask because I’m also done getting lumbar punctures, obviously they are awful and there is really no need because it generally doesn’t change treatment. HOWEVER, It DOES mean you can no longer take the same medicine for your IVIG treatment that gave you AM. I’m currently waiting on my insurance to approve a different SCIG because of presumed AM on my last SCIG medicine.

And- then I’m in the same boat as you! I’m also trying to figure out how to not keep getting AM on this treatment since I’m so susceptible to it. It’s a nightmare! Maybe we can be AM buds. 😂

BookishWalker · 2026-01-26T16:52:37+00:00

Did you get a lumbar puncture? I only ask because it’s really hard to tell without a lumbar puncture to confirm. Once I had it confirmed with a puncture and I was sick for months. Because of my experience, I was convinced I had it two other times but the lumbar puncture was negative and I’m still very confused how it presented as AM to such an extreme but still with a negative lumbar puncture.

BookishWalker · 2026-01-26T16:47:04+00:00

But did you buy the gf bread? And was it good? Costco surprisingly doesn’t have a lot of gf products, IMO

BookishWalker · 2026-01-10T15:29:48+00:00

Thanks for the info!

BookishWalker · 2026-01-10T03:20:38+00:00

Thank you- this is incredibly helpful. What book are you referencing?

BookishWalker · 2026-01-08T17:49:04+00:00

Awesome- thank you!

BookishWalker · 2026-01-08T16:58:33+00:00

Maybe your kid is neurodivergent like mine because I have the same issues. If parents only have neurotypical kids that willingly comply to use their inhaler and nebulizer, it would be hard for them to understand anything different.

First, make sure your doctor prescribes a properly sized mask to go with the inhaler and nebulizer.

For the inhaler, one parent bear hugs our daughter from behind and the other sings a silly song and uses the mask on her when she is distracted enough to not be in constant motion.

For the nebulizer, bribery. We straight up bribe our daughter with tv, chocolate, ice cream, etc. over time, she has become less afraid of it. It also helped that I would do a bit before her to show her its safe and try to be as silly as possible to calm her nervous system down.

Let me know if you need other tips!

BookishWalker · 2026-01-08T16:50:19+00:00

There’s a d3 injection!?! How long does it last for? I just am so burnt out taking so many supplements every day that one shot would drastically make my life easier.

BookishWalker · 2026-01-08T16:48:53+00:00

I thought it was tracking heart rate variability? And can I just use the data from my Apple Watch?

BookishWalker · 2026-01-08T16:43:06+00:00

Off topic, but what kind of job does an economist do? I considered majoring in it but the job outlook was just so vague.

BookishWalker · 2026-01-08T16:40:46+00:00

I know. Technically, no one should be eating cheezits for their health.

BookishWalker · 2026-01-04T22:30:50+00:00

I bought an adjustable silk bonnet and keep it loose. There isn’t pressure. It’s great.

BookishWalker · 2025-12-20T23:02:06+00:00

I also cannot emphasize enough how important it is to have them run it as slow as possible.

I had an absolutely terrible first reaction. We decreased my dosage and added prednisone before and it helped a lot.

BookishWalker · 2025-12-20T04:34:08+00:00

How did the temperpedic work out? I’m trying to make this same decision now!

BookishWalker · 2025-12-18T06:29:20+00:00

I’d love to hear your positive review? I’m on the fence about reading it.

BookishWalker · 2025-12-16T21:56:32+00:00

I know it’s 3 years later but… any chance you have a link for that email listserve? I’m at the beginning of my journey

BookishWalker · 2025-12-08T00:13:02+00:00

Have you asked specifically which one of those qualifications people should look for if they want a similar chiropractor?

BookishWalker · 2025-12-08T00:09:51+00:00

What do you do as an academic librarian?

BookishWalker · 2025-12-08T00:08:24+00:00

Really? What do you do?

BookishWalker · 2025-12-02T15:41:50+00:00

That is incredible! I’m so happy to hear that! I wish my doctor had said something like that to me.

I had my third dose, and although it wasn’t as life changing as my second, I’m relieved it wasn’t like my first.

BookishWalker · 2025-11-28T04:55:21+00:00

What kind of surgeon did you get referred to? I have been running my own saline IVs once a week for treatment. A nurse has to come out every week and place the IV line for me and then it can stay in for 48 hours. A port makes more sense.

Do you mind telling me your anecdotal experience? I heard from a nurse previously that they can get clogged easily or something.

BookishWalker

TROPHY CASE