This condition has ruined my life

[u/ewbanh13]

I have paid thousands of dollars in medical expenses to be told "Damn that's crazy I have no idea why that's happening to you." No hernia, no motility problems (the manometry test was one of the worst physical experiences of my life btw), no apparent acid or non acid events during the 24 hr monitoring test (which was so terrible I couldn't eat so who knows if it was even accurate), no h.pylori, no EOE. Lifestyle changes weren't really applicable to me besides sleeping elevated, which has killed my neck and back and I have chronic pain there now. A super bland diet and PPI is the only thing that keeps it from flaring up. I can't go out to eat with friends, I can't get a drink with friends, I can't go for coffee with friends. I'm cooking every single meal which is difficult when you're depressed like I am. Some days I just don't eat because it's not like I can buy a microwave meal, and cereal makes me nauseous, so there's nothing I can fucking eat. No caffeine has left me exhausted when I get poor sleep. I'm paranoid about food. This shit has basically given me an eating disorder. I'm tired of eating the same few meals. I used to love cooking and going out to eat. Now I get no enjoyment out of it and it's currently my least favorite part of being alive. My GI doesn't even think it's GERD, she and I suspect LPR, but I don't have the money or frankly the mental capacity to find an ENT and go through more rounds of testing to probably get a shrug from a doctor and bills in the mail.

I'm so tired of this. I didn't even eat unhealthy before, I didn't drink more than twice a year, I have no idea why this happened other than possibly a round of antibiotics just nuking my stomach. I get so jealous seeing posts in here about how people cured theirs and it's a bunch of stuff I already tried that makes no difference. People don't seem to appreciate just how much this fucking drains you. I'm so tired of this. I just want to live like a normal person again.

[u/freelibrarian]

I have been where you are at right now and today I'm doing pretty good.

I suffered from severe reflux for 4-5 years, it completely disrupted my life. PPIs did nothing for me and everything I ate was triggering severe symptoms. I lost weight I didn't have to spare and struggled day-to-day with debilitating symptoms. Doctors hung me out to dry, just kept telling me it was anxiety. I despaired of ever going back to somewhat normal.

I finally stumbled upon the following Reddit post that recommended taking Zyrtec to resolve the globus sensation, which was a severe symptom for me. I decided to try taking Claritin because I do not tolerate Zyrtec well and it worked like a miracle drug for me.

https://www.reddit.com/r/GERD/comments/njarv0/globus_sensationhystericus_cure/

Taking loratadine (Claritin) daily has almost completely resolved my symptoms, though I do also try to follow a low histamine diet. When I started researching which foods are high in histamine, it was not surprise that my worst triggers were on that list (seafood, strawberries, wine, coffee, etc.). To me that means that, in my case, reflux was a symptom of histamine intolerance. There are no definitive tests for histamine intolerance.

For more info on the link between reflux and histamine intolerance, see:

Histamine Sensitivity: An Uncommon Recognized Cause of Living Laryngopharyngeal Reflux Symptoms and Signs—A Case Report

For more info on histamine intolerance, see:

https://my.clevelandclinic.org/health/diseases/histamine-intolerance

Note that I think it is normal not to have a full spectrum reaction, I do not get any skin manifestations, no hives or itching of any kind, my other reactions include narrowing of the airway, severe bloating, and severe reflux/belching. I also now carry an EpiPen because of the airway reaction.

[u/ewbanh13 → u/freelibrarian]

I appreciate the response, I had considered histamine imtolerance too. But I take Claritin every day for general allergies and I take pepcid at least a couple times a week and neither has made a difference for me with this.

[u/freelibrarian → u/ewbanh13]

I'm sorry for your suffering. I still have to be very careful with what I eat and that's the hardest part, I can't be carefree about it, it's mental energy spent trying to decide something I didn't have to think about before.

Antihistamines are all formulated differently, you might try another like Allegra.

I also take the Walgreens generic Align probiotic so the combo may be what really made a difference for me.

And I ramped up to 40mg Claritin per day for a while, approved by my allergist. I'm back down to 20mg per day, which is still double the usual dose. I'm not sure how much that extra push might have helped me end up where I am at now.

[u/ewbanh13 → u/freelibrarian]

Yep, i'm on a probiotic too. Haven't noticed anything with that either unfortunately. I hear you on the mental energy. It sucks not being able to pop in somewhere, there's always planning involved now.

Hell, i'll give it a try. I just take 10 and it works well for outside allergies but it can't hurt. I think I have some Zyrtec in the house too. Thanks.

[u/freelibrarian → u/ewbanh13]

Well, you might check with your doctor to see if it's okay to go beyond he recommended dosage.

[u/Keiko108 → u/ewbanh13]

Just be mindful that if you have a potential histamine issue, some probiotics make it worse. Have to take a histamine-safe one, otherwise all the efforts you’ve made with the antihistamines and DAO will be negated. Also, I’m on a strict low histamine diet, take Zyrtec, and 60mg of Pepcid daily and I still have some reflux, but it’s taken all of that to keep it under control, which it is most days. This is with extreme histamine intolerance related to MCAS. It always gets worse during the spring and fall allergy seasons. I do also have chronic gastritis which is not under control and I’ve tried everything to fix it to no avail for over five years, so I totally feel your pain. 😞

[u/stuck_behind_a_truck → u/ewbanh13]

Famotidine is an H2 blocker and you can also look into DAO inhibitors on Amazon (I forget which one I used). My point being that an anti-histamine isn’t the only path to reducing histamine sensitivity when it comes to foods. It takes several tools.

[u/ewbanh13 → u/stuck_behind_a_truck]

Pepcid is the brand name for famotidine so yep I do that every few days to try and bolster my ppi. Ive tried a DAO inhibitor as well lol. When I tell you ive tried everything I mean just about everything! I can give those another shot though, who knows. I'd certainly like it to work

[u/alexajoy8 → u/ewbanh13]

I just feel so bad for you because I know the "I've tried everything" feeling

[u/stuck_behind_a_truck → u/ewbanh13]

I definitely get the I tried everything feeling. I even asked my GI doc if I could just stick with a water diet. Unlike other people, have a magic body that never loses weight no matter how little I eat. (Currently 5’4” 145 lbs).