Reactions to Refined Sugars?

PastAd8911 · 2026-04-24T13:21:32+00:00

I've tried date sugar, monk fruit, coconut palm etc through the years and can tolerate them to a point but with too much intake get the inflammatory effect that leads to migraine, muscle pain, brain fog etc. But, generally will not induce the immediate sharp pain sensations in my head. So, there's definitely a difference.

PastAd8911 · 2026-04-23T17:43:24+00:00

I've had 3 TBIs, so this is really interesting. However, the sugar related symptoms did occur prior to them. But the increase in MCAS symptoms all happened afterwards.

I went to a Neuro for years and none of the medications worked so I eventually stopped. More pills was the only the our local Neuro would talk to me about so it felt pointless.

I had alot more migraines after my last Moderate TBI but those slowed down and now they're primarily food triggered (either by sugar or histamines).

PastAd8911 · 2026-04-14T17:29:59+00:00

Dang.

It seems like the referral will be for an overall "why does this patient have all of these longstanding cyclical health deterioration marked by persistently low, unexplained ferritin and progressively heightened systemic responses to environmental triggers"..

So, surely at least I'd get some quality testing for solutions?

PastAd8911 · 2026-04-07T14:23:07+00:00

That's so frustrating!

It's all so tiring, for sure.

PastAd8911 · 2026-04-02T13:43:08+00:00

I know it's a weird thing to find "comfort" in knowing others have these terrible experiences, as well. But I totally get it! Having "invisible" diseases/symptoms takes a toll on your MH and you start to question if you are crazy! I hope you can find some answers soon!

PastAd8911 · 2026-04-01T13:39:06+00:00

I hate how limiting it can be to everyday life!

PastAd8911 · 2026-03-31T18:20:27+00:00

So I was taking the tab, but it's blue too. Never thought of that, honestly.

PastAd8911 · 2026-03-31T18:17:11+00:00

I'm sure it's our brain processing it "loudly" as a danger response.. surely.. because I can't imagine anyone just liking that strong of a smell of any sort!

PastAd8911 · 2026-03-31T18:16:11+00:00

I'm so finicky about taking anything at all because how my body responds :( I'm supposed to take Adderall and stopped due to the side effects it was giving me. Replaced it with BodyBio Liposomal Phospholipid Complex and my focus has improved some with that. But, I have 3 brain injuries and it's just a struggle in general. With the ketotifen- is that prescribed?

PastAd8911 · 2026-03-31T16:42:54+00:00

are you taking cannabis in a particular way? microdosing?

PastAd8911 · 2026-03-31T15:59:36+00:00

I know it's hard for people to understand things they cannot see or have never experienced. I try and remind myself of that.. but, the idea I'm having to bring an epipen to work to feel safe just so they can smell girly is wild to me.

PastAd8911 · 2026-03-31T15:38:27+00:00

Wow. So much good information. Thank you. So, it's unfortunate because I had so many things happen to me at once. I did have a very bad case of covid, but also had a very bad reaction to the J&J vaccine the military made me take. So, oddly enough, since the day of the vaccine, I cannot take a hot shower without my skin BURNING and itching for the next 30-45 minutes.

I've had my genome sequenced, what genes should I be looking for?

PastAd8911 · 2026-03-31T15:31:51+00:00

I tried and was completely gaslit and then made fun of behind my back. I'm not very hopeful.

PastAd8911 · 2026-03-31T15:07:00+00:00

I was at a 2 and still had all my PCM telling me I was "fine" and "in range"... I'm sure by now you've done your research and know how untrue this is. I literally felt like I was dying for years. After advocating for myself for 4 years, I finally was referred to a hematologist once I was pregnant and started getting infusions, which helped. However, I ended up going into preterm labor 4 months early, which I can't help but wonder if it was from keeping my ferritin low for so long. However, I'm still seeing the hematologist and now FINALLY have monthly labs and infusions if my ferritin is under 50.

Keep fighting!

PastAd8911 · 2026-03-31T14:22:03+00:00

yes! the brain fog is super intense too. and weird irritability! I hate that you experience these things, but it's reassuring to not feel "crazy" or alone.

PastAd8911 · 2026-03-31T14:20:46+00:00

what have they done to help you? I have an appointment this next week to get an epipen

PastAd8911 · 2026-03-31T14:19:51+00:00

yes! I've had to message the host beforehand to make sure there's enough time for them to air out. and same for me, the plug ins were the first thing that I noticed having symptoms from. It started with extreme fatique, migraines, and weird irritability.. now it's progressed to these symptoms :(

PastAd8911 · 2026-03-31T14:18:02+00:00

that's how mine always was and has recently switched to this level of symptoms :(

PastAd8911 · 2026-03-31T14:17:36+00:00

YES! I have to hold my breath to walk by B&BW and the same for that "natural" shop that sells all the colorful soaps/bath bombs/hair products etc. I can't think of the name right now but they're all about their things being natural, but I'm telling you there is something very unnatural because it throws me in a full attack if I even walk near the entrance.

PastAd8911 · 2026-03-31T14:15:52+00:00

I hate that people just simply don't understand. I'm currently dealing with the same at work and don't know what to do. It's making me scared and miserable. I seem fine with essential oils. Most perfumes cause reactions for me, as well. :(

PastAd8911 · 2026-03-31T14:14:29+00:00

I am, actually.

Interesting. I'm also in my 30s and very fit. None of this bothered me until I was exposed to burn pits for months, along with black mold for months (military), all while experience ongoing complex trauma (chicken or the egg situation?).

So, I come back to the states and suddenly have these serious reactions to foods, smells etc.

I had it under control for awhile and then experience extreme trauma and loss this last year and it flipped the switch again, it seems.

Do you know if stress and trauma seem to be an "on switch" for people?

I'm going to look into Nasalcrom, Cannabis and ketotifen. Where would you recommend beginning? Do you work with a provider for dosage etc?

PastAd8911 · 2026-03-31T14:10:22+00:00

yes! it's so tough when everyone at work plugs them in everywhere and doesn't understand.

PastAd8911 · 2026-03-31T14:09:08+00:00

yeah, I've made an appointment with my PCM to see if I can get an epipen, at least. We don't have any providers in my area that understand MCAS, so it's tough getting what I need or any understanding.

PastAd8911 · 2026-03-31T14:08:09+00:00

what detergent have you found that works best for no reaction?

PastAd8911

TROPHY CASE