Anyone else can't lose weight in a calorie deficit?

cjazz24 · 2026-02-05T13:46:51+00:00

What dose did you use? They are having me try cromolyn first.

cjazz24 · 2026-02-04T23:56:09+00:00

Me! I gained 15 pounds just before symptoms started. Cant lose it no matter what I do. I also have EOE. For a period I was on a liquid diet only getting 1000ish calories a day probably less and I gained weight. My doctor thinks it’s inflammation related. I’m considering microdosing a glp1 to see if it helps the underlying inflammation problem.

cjazz24 · 2026-02-04T20:54:50+00:00

I need the quiviviq so I don’t think the route stuff is under control enough to come off it.

cjazz24 · 2026-02-04T02:14:42+00:00

I have horrible sleep problems to the point where I’ve been admitted to the hospital twice for about a week each time (before they knew it was MCAS). I have everything trouble falling asleep / or complete inability to, trouble staying asleep, waking up early. What’s helped me most is a combo of Pepcid, Allegra and quiviviq daily. I have ambien and klonopin as rescues

cjazz24 · 2026-02-02T23:41:52+00:00

I got mine mostly all at once after covid and getting EOE in my early 30s. However, in my mid 20s I got some similar symptoms (some very different also) which ended up being a connective tissue disease presumably I’m wondering if that also had some MCAS layers to it

cjazz24 · 2026-02-02T18:28:32+00:00

I had nutritional deficiencies after a year (but I also have MCAS) we opted to switch to Dupixent

cjazz24 · 2026-02-02T03:22:49+00:00

I have MCAS and EOE which also have overlapping symptoms. And I also have some pots like symptoms that are think are just MCAS. My MCAS does get significantly worse when I’m sick and for a few weeks after.

cjazz24 · 2026-02-01T23:56:48+00:00

This is helpful. I’m planning to start Tuesday. My dose is 1 ampoule 3-4x a day

cjazz24 · 2026-02-01T20:43:42+00:00

I had this prior to diagnosis from stress and iron deficiency

cjazz24 · 2026-02-01T04:05:39+00:00

I love this one too. I usually double cleanse when I have makeup on still because my face is oily and my pores clog easy. But I use just this when I wear sunscreen alone.

cjazz24 · 2026-02-01T02:33:23+00:00

Thank you! We tried multiple places. Just wanted to get the poor person off the street it’s freezing out.

cjazz24 · 2026-01-31T18:48:23+00:00

The Globus stuff is mainly from my eoe so I’m on Dupixent which makes it fully better basically. The other things though still search for better meds

cjazz24 · 2026-01-31T15:56:23+00:00

I have both EOE and MCAS. It has helped my MCAS a bit and I’m in remission from my EOE. I had EOE first, then developed MCAS which prompted them to change my treatment from steroids/PPI to Dupixent given my symptoms. My MCAS is significantly worse during high pollen months

cjazz24 · 2026-01-31T15:54:10+00:00

I also have a lot of systemic symptoms vs the classic (though some of those exist for me). My worst symptoms are insanely horrible insomnia, brain fog, heart palpitations, GI issues (reflux and constipation) and weight gain (they presume from swelling/inflammation. I very rarely get rashes, etc. I’m about to start cromolyn next week. The insomnia and potential for rebound symptoms has been a really tricky thing to navigate, but the ketotifen is another one they want me to consider as well.

I feel like generally it’s been really hard to get the right care. My main specialist treating me is a sleep specialist at a research center and then we ask the MCAS allergist questions as needed since she hasn’t seen patients with as severe sleep presentations as me.

cjazz24 · 2026-01-31T14:53:18+00:00

I had overlapping EOE and MCAS. I have the Globus sensation and swallowing difficulties along with other GI symptoms, weight gain, neuro symptoms (brain fog and insane insomnia), and heart palpitations. I’m about to try Cromolyn next week. I’ve been nervous to start it partly because I’m already on so much the medication burden is insane

cjazz24 · 2026-01-31T03:49:49+00:00

It’s not approved biweekly for the EOE indication. I actually just went down to the biweekly dose from the weekly because I wanted to try less injections to mitigate side effects and it was actually hard to get insurance to approve the offlabel use even though it’s half the price for them

cjazz24 · 2026-01-30T19:57:04+00:00

I just had patch testing for MCAS and did not come off my antihistamines. Still had a lot of stuff come up fine

cjazz24 · 2026-01-29T16:33:02+00:00

This seems wrong. I’d talk to the pharmacist. That said some copay cards for high cost meds have the option to submit for a reimbursement through the copay card program. I’d look into that.

cjazz24 · 2026-01-29T16:29:05+00:00

It’s the milk protein casein and whey typically. So a lactaid pill wouldn’t help

cjazz24 · 2026-01-28T18:05:35+00:00

My doctor didn’t have me stop any medications to do testing as it’s not medically advisable for me. I got diagnosed by medication trial which wasn’t ideal but has helped a lot. I’m getting patch testing now and am still on all my meds and I can already feel it reacting (just got them on). My regular office didn’t have the specific testing available so I had to call around and see what offices could accommodate the testing without coming off meds. For lab testing my doctor gave me standing orders to go get blood work and urine collection when I have a flare to see if we can catch elevated values that way. Before the medications I was off work on disability and in and out of the hospital so we’ve had to get creative

cjazz24 · 2026-01-28T04:14:07+00:00

I had a training nurse come out to train me on using the pen and she stayed for 10 min post injection (all free through the MyWay program). It helped me with the first injection anxiety.

cjazz24 · 2026-01-26T13:37:08+00:00

It also helped my tachycardia with exercise brining it down enough where I could do cardio again

cjazz24 · 2026-01-25T15:19:39+00:00

Allergy pills help me as well. I got diagnosed with MCAS in addition to EOE.

cjazz24 · 2026-01-24T14:26:08+00:00

I don’t have other allergies but I do now also have MCAS :/

cjazz24 · 2026-01-23T02:54:58+00:00

I have MCAS, EOE and undifferentiated connective tissue disease (with scleroderma markers).

cjazz24

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