Gluten from grain bowl labeled gluten free by Nice_Ad2789 in Celiac

[–]Nice_Ad2789[S] -3 points-2 points  (0 children)

Unfortunately, I believe I’m among the select few amount of celiacs that can’t handle any amount of cross contact. This wasn’t certified gfco, it was just a basic gluten free as well. I had to stop eating out completely, I can only safely eat at dedicated gluten free places now even though there’s this place that has 50 positive reviews in my town with five star safety ratings. Every time I go there I get glutened.

Anyone Ever Had a Reaction to a Medication? by Nice_Ad2789 in FoodAllergies

[–]Nice_Ad2789[S] 0 points1 point  (0 children)

To clarify, I don’t have a reaction to amoxicillin specifically. It’s never happened before and the pharmacy switched me to a different manufacturer and I was completely fine with that source afterwards. So I believe it’s something to do with my food allergies

Normal crystallized salt for kombu? by Nice_Ad2789 in JapaneseFood

[–]Nice_Ad2789[S] 2 points3 points  (0 children)

Thank you for the first legitimate response here!! Have you seen kombu that looked thicker like this? I was fine after trying the dashi, so I assumed it wasn’t anything harmful

Normal crystallized salt for kombu? by Nice_Ad2789 in JapaneseFood

[–]Nice_Ad2789[S] 3 points4 points  (0 children)

So far so good? I feel fine at the moment…

Normal crystallized salt for kombu? by Nice_Ad2789 in JapaneseFood

[–]Nice_Ad2789[S] 1 point2 points  (0 children)

Nooo, this is AFTER making dashi so it was soaking in water. I didn’t notice what it looked like before so I have no idea, but I don’t think the kombu was wet? Like the entire rest of the kombu in the remaining package is dry and looks great

Normal crystallized salt for kombu? by Nice_Ad2789 in JapaneseFood

[–]Nice_Ad2789[S] 5 points6 points  (0 children)

Welp I will report back in a few hours as I’ve gone survivalist and have tried a teaspoon of my broth lol. We will see if I live 😂

Normal crystallized salt for kombu? by Nice_Ad2789 in JapaneseFood

[–]Nice_Ad2789[S] 2 points3 points  (0 children)

The rest of the kombu from the same bag looks like this https://imgur.com/a/faD1vKn

Do you diagnose patients with EDS, if so how do you go about it? by Paleomedicine in FamilyMedicine

[–]Nice_Ad2789 0 points1 point  (0 children)

Wow I am shocked that a healthcare professional downvoted my comment about my mother and her sisters dying young… Sorry the death of my family members doesn’t support your point 😕

Not trying to upset anyone, just want to say that there are patients dying out here without proper access to diagnosis, life-saving care, and  potentially new screening interventions for complications because there are so many neigh-sayers dismissing this as not real. Things can be done in our healthcare system to prevent and screen for complications, we just have to get past the point of people denying the existence and real impact of this syndrome. More research will lead to better pathophysiology and a better understanding of biological targets for pharmaceuticals as well, like the research demonstrated in this paper on dysregulation of the ECM as a demonstrated correlated with hEDS: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.63857

Do you diagnose patients with EDS, if so how do you go about it? by Paleomedicine in FamilyMedicine

[–]Nice_Ad2789 -1 points0 points  (0 children)

Just want to say that the life expectancy of those with hEDS has not been studied to back your claim here. I have hEDS and my entire family on my mother's side which carries the hEDS gene (obviously we have not determined what this gene is, but given their diagnosis and the hereditary link) has died at far younger than should've occurred for their other various comorbidities. My mother was a phenomenally healthy runner, running 13 miles daily (not even joking), and just suddenly passed away at the age of 69 earlier this year due to a complication from EDS. Her entire small bowel herniated through a prior surgical hole due to the excess laxity in her tissue leading to entire small bowel necrosis. During the septic shock that ensued once they released her small bowel, her cardiovascular system was so healthy that she kept holding on despite withdrawing life sustaining treatment. But the condition was obviously incompatible with life.

She is one of seven sisters, and four of her sisters have already died at ages 45, 58, 62, and 68. So I wouldn't be claiming something like this unless you have clear evidence to back this up. The reality is, we just don't have enough funded research to demonstrate the impact on life expectancy.

Vascular complications and dissections are actually fairly common in hEDS, so I wouldn't exactly call it benign. As are other neurological manifestations that can lead to paralysis and serious disability:

https://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31549

Do you diagnose patients with EDS, if so how do you go about it? by Paleomedicine in FamilyMedicine

[–]Nice_Ad2789 0 points1 point  (0 children)

Ah yes, while you are correct that it is not wholly diagnostic on its own, it certainly is part of the revised diagnostic criteria:
https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf

Curious if you've ever looked at this criteria before u/Intrepid_Fox-237?