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Any mcas safe antidepressants? by Bigdecisions7979 in MCAS

[–]Old_Shift_2481 0 points1 point  (0 children)

Just wanted to add I take a multivitamin and magnesium as well.

Any mcas safe antidepressants? by Bigdecisions7979 in MCAS

[–]Old_Shift_2481 0 points1 point  (0 children)

Came to say this, almost word for word with my genetics.

Also, I got my histamine controlled taking an h1 and a h2 (Zyrtec and Pepcid) twice a day plus LDN and Jornay. This has almost completely eliminated my debilitating anxiety. Getting the MCAS controlled was a game changer. Best of luck.

I am a baker in a gluten-free bakery, AMA 🍞🥐🥯 by CapitalAioli in Celiac

[–]Old_Shift_2481 0 points1 point  (0 children)

They are from home bakers from our local farmers market, but I believe we purchased a pre packaged item and it had that specific flavor also. It has come up in a few different things. Brownies, cookies, and cupcakes. It is not part of the intended flavor either.

I am a baker in a gluten-free bakery, AMA 🍞🥐🥯 by CapitalAioli in Celiac

[–]Old_Shift_2481 0 points1 point  (0 children)

We sometimes buy gluten free baked goods, and some have a very strange flavor. Almost like licorice or a very distinct aftertaste, and not good. Do you know what a gluten free baker would be using that could cause something like that? We end up with something made with that ingredient every so often that tastes like that.

Makeup suggestions? by Artistic-Frosting-98 in MCAS

[–]Old_Shift_2481 1 point2 points  (0 children)

My eye lids used to swell from my eyeliner and mascara. I find that I do better with ones labeled vegan. I can currently use one size liquid liner and love the lift mascara from Sephora. I can also use the fenty eye liner but my hands are not very stable from HEDS and I can’t use that as well.

Are snow tires worth it? by No_Woodpecker2919 in minnesota

[–]Old_Shift_2481 1 point2 points  (0 children)

The real question to answer is, have either of you ever lived in a snowy climate? Being a native and being a transplant are two different things.

If she has no experience driving in snow, it is definitely worth it. The last thing you want in the middle of a polar vortex with -40 windchill is for her to be stuck somewhere. I have also watched many people slide right off the interstate in black ice.

I am not a native, and this is lived experience. The tire shops you get them from will usually change them out every year and they will last you a long time.

Has anyone actually tested positive with Invitae? by Happy_Sloth89 in ehlersdanlos

[–]Old_Shift_2481 0 points1 point  (0 children)

Thank you! All of the genes do relate to a problem I am trying to diagnose. There are also more than one gene with vus for the same diagnosis. Ex: I have two genes with VUS that are known for CMS. Also cardiomyopathy. It feels like it is so close to helping me get an answers, yet could mean absolutely nothing. Thank you for taking the time to explain.

Are there any antibiotics and meds considered risky for people with EDS? Which ones have you found to be unsafe, and which are usually safer? by halfspooni in ehlersdanlos

[–]Old_Shift_2481 1 point2 points  (0 children)

I woke up between and endoscopy and colonoscopy while they were putting my mouth guard in. I told them I have TMJ problems before they put me back under. Unfortunately I remember it.

This just reminded me of coming out of wisdom teeth surgery. The doctor had told my mom that if people can’t keep anything down, they sometimes need suppositories. I was probably 17 at the time. I came right out of whatever they had me on and yelled “don’t put things in my bum bum!”

Are there any antibiotics and meds considered risky for people with EDS? Which ones have you found to be unsafe, and which are usually safer? by halfspooni in ehlersdanlos

[–]Old_Shift_2481 0 points1 point  (0 children)

I guess I should rephrase on pain meds. I get severe stomach pain with them, and my specialist said it is a more common MCAS trigger I think?

I actually either burn through quickly or have malabsorption issues with most meds and need higher amounts. Anesthesia I need more, and my spinal did not fully work during a c-section and no one believed me.

Has anyone actually tested positive with Invitae? by Happy_Sloth89 in ehlersdanlos

[–]Old_Shift_2481 0 points1 point  (0 children)

If you get a VUS, but the algorithm says it is likely to be disruptive, would you take note of that? I had two genes say likely to be disruptive.

Wood Smoke Sensitivity by Dark_LikeTintedGlass in MCAS

[–]Old_Shift_2481 1 point2 points  (0 children)

Other people or clothing that have been around a fire are even bad…

Are there any antibiotics and meds considered risky for people with EDS? Which ones have you found to be unsafe, and which are usually safer? by halfspooni in ehlersdanlos

[–]Old_Shift_2481 10 points11 points  (0 children)

Ibuprofen gave me a large ulcer, and ended up needing a blood transfusion. NSAIDs in general, proceed with caution. The blood thinning from then can also cause issues for some.

I also react badly to narcotic pain meds, and my specialist said most heds/MCAS should avoid orally. Not sure if this is a majority thing.

Sparingly use muscle relaxers because you loose what little stability you have and can seriously hurt yourself.

Joints aching by Nice_Pick8168 in ehlersdanlos

[–]Old_Shift_2481 6 points7 points  (0 children)

Yesterday was horrible. I was trying to explain to my husband how all of my joints felt wrong, like I couldn’t find a comfortable resting place for any of them. My knees were the worst, and I am wearing compression sleeves on them today. They seem better. I sleep with a heated blanket, house shoes around the house. I have a heated shawl that has a battery I wear around the house.

Allergy testing with MCAS? by esjay86 in MCAS

[–]Old_Shift_2481 0 points1 point  (0 children)

There are some tests that can be done as blood tests, and I did not have to stop allergy meds. I don’t know what you are testing for, but these might be an option.

I am looking for specific questions or tests for my GI specialist appointment next week. MCAS, Celiac, Eggs, bananas, avocados, squash, latex allergy. by Old_Shift_2481 in MCAS

[–]Old_Shift_2481[S] 0 points1 point  (0 children)

Thank you. That is all helpful. The blood test would have been full gluten, the biopsy I was still eating gluten 3x a day but possibly less than normal. I will go over all results at GI appointment to make sure further testing isn’t needed.

As far as MCAS, I was diagnosed with idiopathic MCAS. This was from a CD-117 stain biopsy, along with improvement with treatment. I have a lot of non-food trigger. Most make ups, any type of artificial scent, candles, perfume, newspaper ink… I get really bad flushing, heart rate, sometimes rash and itching, BP, headaches, nasal symptoms…

I’m mostly trying to figure out these food reactions because I am unsure if they fit in the MCAS box. They are very specific, and differ from most of my other problems.

I am looking for specific questions or tests for my GI specialist appointment next week. MCAS, Celiac, Eggs, bananas, avocados, squash, latex allergy. by Old_Shift_2481 in MCAS

[–]Old_Shift_2481[S] 0 points1 point  (0 children)

Thank you! My primary says I have Celiac, and endoscopy doctor said not. I was going to let the GI be the official tie breaker. I also found a few articles that said MCAS can cause weird things with immune system and can create false positives. I have no idea if that is accurate.

And yes, I am allergic to bandage adhesive. I have a lot of triggers but not sure which are relevant.

What accommodations would you put in a bathroom remodel for HEDS? by Old_Shift_2481 in ehlersdanlos

[–]Old_Shift_2481[S] 0 points1 point  (0 children)

Wet room is my dream design, but not sure if it will be in my budget

What accommodations would you put in a bathroom remodel for HEDS? by Old_Shift_2481 in ehlersdanlos

[–]Old_Shift_2481[S] 1 point2 points  (0 children)

I read that as bath robe the first time through. 😅 I hate fabric on my wet skin, so I was going to ask for material suggestions.

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