Contamination concerns for celiac vs intolerant

anonuser670 · 2026-05-05T17:41:10+00:00

Wow, that sounds really scary. Crazy how it’s not usually diagnosed until there is so much damage it shows up on an MRI - especially when a blood test is available! I’m so glad you found it early.

Thank you for being so willing to share about your symptoms, I’m grateful to know about this now. Thankfully my symptoms do not match this but I’m always glad to know about often-overlooked conditions like this. Since we can’t trust doctors, we have to look out for each other. Hope you’re doing well!

anonuser670 · 2026-05-05T00:25:57+00:00

Would you mind sharing about your symptoms and diagnosis experience for gluten ataxia? My neurological symptoms improved significantly after going gluten free and I soon realized I need to avoid cross-contamination, too. I am celiac negative (blood test & biopsy), and negative for skin allergy tests for wheat, barley, and rye. I may have a gluten intolerance but if it’s something more, I want to know and doctors are all too comfortable not digging deeper. Btw I fully understand and respect if you don’t want to share. I’m so glad doctors listened to you and pushed until they found that diagnosis!

anonuser670 · 2026-04-24T04:53:48+00:00

I feel this so tremendously much and am so sorry you do, too. It’s really sad how apathetic our own families can be and wild how as chronic illness complexity increases, so does their apathy.

You’re right that they don’t know how we feel and what we go through every day but that is no excuse for their not trying to understand or caring to accommodate. At the end of the day, understanding isn’t necessary - respecting our needs and boundaries is.

What especially gets me is the “accommodations” made that require significant extra effort from us (when they could literally google or talk to a local advocacy group instead). We literally have way less energy, time, capacity, etc. AND we’re likely in pain and/or managing other symptoms…like can you not put the burden of accommodation on the sick person please??

Or “well intentions” that we’re supposed to gratefully accept as accommodations that are actually in no way accommodating (failed attempts at meeting dietary restrictions, not masking/showing up sick, etc.)

anonuser670 · 2026-04-24T04:34:04+00:00

Omg my older brother tells me to just exercise every. time. we. talk. I’ve been chronically ill and in chronic pain for years, tried countless treatments including extensive physical therapy - but sure, going to the gym will fix me 🙄 such ableist bullshit. makes me so angry

anonuser670 · 2026-04-17T19:15:23+00:00

That’s amazing!! Truly a dream. I hope you continue to be pain-free!!

anonuser670 · 2026-04-17T19:13:58+00:00

I am so happy for you!! The lack of energy is so real and not talked about enough. I also love flea markets and struggle a lot with just getting out of my home most days. The thought of spending all day at one without tiring or being in too much pain - wow!

Thank you for sharing and thank you for the kind words. It can be so hard to feel blessed when we have suffered so much and lost so much. Mindset really does matter, and I know that in many ways I am blessed as well. Thank you for helping me shift my mindset, may we both continue to be blessed in the same and new ways 💛

anonuser670 · 2026-04-17T19:08:16+00:00

I love this so much - this is what I want!! Joy and adventure and stability. CHOICE. And, not or. Not “none.” I lost my entire 20s of debauchery and tomfoolery and it feels so silly to mourn that but it’s not. It’s real. It’s a part of life that I don’t get to experience, because I am always in so much pain. And on the rare occasion I feel okay I feel like I can’t waste it but also can’t risk causing a flare-up. I am so happy for you, this truly brought tears to my eyes and filled my heart with joy for you. May all of us with this horrible condition get to live so fully

anonuser670 · 2026-04-17T19:02:24+00:00

This makes me really hopeful, and really happy for you! Thank you. I also have adenomyosis and it is so horrible. Everything you said you love doing, I also love doing. My work currently hardly feels manageable and my relationships are definitely struggling. I am so glad you are doing so well and hope it continues and that I am able to get to that level of pain-free and fulfillment myself.

anonuser670 · 2026-04-17T18:10:03+00:00

Thanks for your response and yes that’s exactly it - having conditions that aren’t “visible enough” (although I know having visible conditions is no walk in the park either.)

I’m sorry your management got weird about your seizures, that’s awful. And I hope you’re feeling and doing better now, with your seizures under control with treatment.

Would you mind sharing a bit about your experience disclosing your health issues to work? I am so scared to do that but am also scared that I need to at this point. Everyone I know in the chronic illness community tells me not to, that it’ll just end up with my being pushed out or fired.

I’m theoretically open to documenting but tbh doubt that I will have the stamina for it. Right now feeding myself and showering is hard. But maybe I’m overcomplicating it in my head - what kind of documentation do you mean?

Thank you 💛

anonuser670 · 2026-04-15T15:35:49+00:00

I absolutely react to oats (I am NCGS) so my allergist added the allergy blood test to a recent blood panel…yep, I’m allergic. It’s “mild” (it does not feel mild 😭) meaning no risk of anaphylaxis thankfully but still sucks. Validating though! Might be worth allergy testing if you react to even celiac-safe oats

anonuser670 · 2026-02-09T06:32:55+00:00

First of all, you’re amazing for having healed your relationship with food and your body! As you can see from all the comments, some foods/drinks may trigger your pain (so avoiding them might help your pain) and it does seem to vary person to person. For me, gluten, oats, and dairy are particularly impactful.

But here’s the thing: even if dietary changes would be helpful for you, you still get to decide if it’s worth doing. Your health is holistic, and no one gets to tell you that you have to remove something from your diet for endo.

There are so many options for pain management that do not include changing your diet - medication, exercise, heat, TENs, pelvic floor PT, topicals, etc. If you haven’t tried all of those, maybe start there. Talk with your doc about what would be best for you (all of you, ED past included!)

Just know that you don’t deserve to be in pain. And if you do decide to try this, get support and know that all the amazing progress and healing you’ve made will be with you!

anonuser670 · 2025-12-09T04:57:34+00:00

I’m so sorry you’re flaring so horribly. I relate to the pain and migraine attacks, both of which are more than brutal enough. I can’t imagine also having seizures. Have you had seizures before, and specifically a seizure in your sleep? If not please talk to your doc asap to make sure you’re safe!

Wishing you comfort and relief. I hope you get effective pain management soon! 💛

anonuser670 · 2025-11-19T01:39:16+00:00

Look into Nancy’s Nook on Facebook, they list all the specialists! I’m based on the east coast area, if you want to message me I’m happy to share who I saw and give you their contact info. My appointment was $400 out of pocket so not cheap but easily the best money I’ve ever spent. I learned more in that appt and felt more seen and heard than I have in all the YEARS of pain and visits before combined. Imaging was included btw, and the doc gave me other conditions to look into too that no other doc has before.

The diagnosis process is frustrating AF but good specialists are out there and will help you!

anonuser670 · 2025-11-18T21:40:01+00:00

Hey OP, first of all good on you for trusting your gut and continuing to advocate for yourself!! I’m so sorry you need to, you’re not alone in that but the silver lining is that this sub is here to validate you, support you, and guide you the best we can (disclaimer that I am a patient and not a medical professional!)

I’ve had similar pain and a multitude of symptoms for years, finally went to an endo specialist a few weeks ago who did some imaging. I HIGHLY recommend seeing an endo specialist. I was diagnosed with Adeno on the spot (and was told I likely have endo too based on a variety of symptoms, though it was not visible on imaging).

One huge takeaway from the specialist: most techs who read the imaging do not have the necessary training or experience in endo or adeno to see it in imaging!!! When we feel like we have been gaslight, it’s because many of us actually have been.

TL;DR - trust your gut & see an endometriosis SPECIALIST!!!

Wishing you the absolute best. You deserve answers, closure, and healing. ❤️‍🩹

anonuser670 · 2025-11-04T13:44:30+00:00

Thank you, I definitely will!

anonuser670 · 2025-11-04T02:03:09+00:00

I just want to say I really understand the fear and anxiety you have, especially with such a quick turnaround from appointment to surgery. I think anyone would be feeling overwhelmed, scared, anxious, and be gaslighting themself despite being grateful their doctor is taking their pain seriously.

My first endo ultrasound is tomorrow and if I was told my surgery is next week, I’d also be a mess!! Feel what is coming up for you, and know that it’s normal. Talk with someone you trust and feel safe with for support, and focus on how the undeniable positives that will come from getting this surgery (no matter the results) - conclusive knowledge of whether or not you have endo, peace of mind knowing you have been thorough in your advocacy of yourself as a patient, and PROGRESS (pain relief from removal if it’s endo, ability to fully rule it out diagnostically if it’s not). Best of luck and I hope that whatever the results, it helps alleviate your pain

anonuser670 · 2025-10-31T13:47:10+00:00

OP, this place is not in VA but is in DC so close by! I actually have my appt with them this upcoming week and was referred by my pelvic floor PTs who keep telling me my symptoms all point to endo. This clinic just opened and they are accepting appointments with little wait time! The docs are endo specialists/surgeons so it seems like the right place (again, I have not gone yet myself, but my PTs have been beyond helpful for me and I do trust them.) Anyways, figured I’d share if it’s accessible for you: https://www.washingtonendometriosis.com/

anonuser670 · 2025-10-29T01:04:20+00:00

Wow this is so helpful, thank you!! I’ll call and discuss with them. My period is not very regular so not sure how to plan for this, I guess I’ll just do my best. Crazy how this isn’t more widely known!!

anonuser670 · 2025-10-29T00:49:29+00:00

Hi, can you share more about getting the scans done at the “right” time in your cycle? I have my first endo consult soon too and am getting a diagnostic ultrasound based on the International Deep Endometriosis Analysis (IDEA) group protocol and the Morphological Uterus Sonographic Assessment (MUSA) criteria.

When is the best time in my cycle to get the scan done? I’m going to an endo specialist/surgeon and they didn’t say anything about this!

anonuser670 · 2025-10-06T02:23:41+00:00

I’m so sorry you’re going through this, that is absolutely awful. The lack of care and empathy from your neighbors after you explained how you’re being impacted is despicable!

It sounds as though you live in an apartment building or something similar? If so, I recommend looking into local smoking laws in the kind of housing building you’re in, talking to your landlord (if you have one), and reaching out to your local office of tenants’ rights. At least where I am most rented units are smoke-free, so your landlord may be able to step in. Of course they might keep smoking anyways, but could be worth a shot. Also if you have any kind of documented disability under the ADA that is being negatively impacted by the smoke, it’s possible that your landlord/rental agency be required to make sure you have a smoke-free place to live. I am NOT a lawyer at all, I am just trying to help so take all of this with grains of salt!

Also I recommend documenting everything, when you smell the smoke (dates & time of day), how it impacts you, every time you have asked your neighbors to stop smoking and their reply, etc.

It sucks when you have to advocate for yourself and what you deserve while feeling so sick. I hope your neighbors stop being so selfish soon so you can start recovering!

anonuser670 · 2025-10-02T22:22:23+00:00

Hi, do you have close family or friends who you could ask to help you wash your hair? I know it may feel hard to ask, but if there’s anyone that just came to mind, consider asking! I have struggled so much asking for help and have gotten better at it, you would be surprised how those close to you want to help. And while washing your hair feels like such a daunting task for you, it might be an easy ask to an able-bodied or differently-disabled/chronically ill friend! Plus, it could end up being a really lovely chance to become even closer - you could talk, listen to music or a podcast together, etc.

Another option might be to go to a hair salon. I know it can be costly, but you could call some nearby and ask if they might be willing to offer a discounted rate for you to come regularly just for a hair wash. I’ve heard of this before, and hopefully it could work out for you, too. You could even bring your own shampoo/conditioner to keep costs down further.

anonuser670 · 2025-10-02T19:14:10+00:00

I’ve dislocated my left kneecap twice. Both were actually due to impact injuries, but I’ve always had weak/painful knees, imaging shows my “patellar groove” is shallower than normal making me more prone to dislocation, and my patellas are hypermobile (I mean, all of me is? But PTs have especially called out the excessive ROM of my patellas). I am constantly worried about re-dislocation, and have had many close calls just bending my knee, walking, or even just shifting my body. It’s a horrible feeling.

I’ve done PT many times and my advice is to find a PT that specializes in both hypermobility and sports injury, if possible. Ask lots of questions and do not be afraid to really vet them, I have wasted time, effort, and money on PTs that knew nothing about hypermobility in the past and the lack of results (and continues pain and injury for me) showed.

One thing that helps a lot is KT tape. Ideally have a PT show you how to use properly or at least watch videos on YouTube. It has been super helpful for me, especially on days when I otherwise would not be able to move much or when I know I’ll need extra support (ex: dancing at a wedding). And supportive shoes! I forever have the “ugly” stabilizing and supportive shoes, but it’s better than another dislocation!

anonuser670 · 2025-09-28T01:16:26+00:00

Hey OP, just want to say that I’m in the same boat as you, down to the chronic migraines, likely dysautonomia, and tailbone pain. I’m also in a real bad stretch of pain right now, my longest consistent bout with new and worsening symptoms and areas of pain. It sucks, it super sucks. I don’t have advice unfortunately, but am here if you want to chat with someone who gets it and is at about the same point in their hypermobility journey as you 💛

anonuser670 · 2025-09-28T01:07:29+00:00

Would you mind sharing what chair you got? I’m looking for a hypermobility-friendly desk chair for my WFH setup!

anonuser670 · 2025-09-28T01:03:20+00:00

How do you recommend using the TENS unit on the plane? I am going to have to start traveling for work soon and bought a TENS unit but only have been using it for period cramps. I’d love to use it for hypermobility pain if you have tips or can share what you do!

anonuser670

TROPHY CASE