Respiratory problems turned to difficulty swallowing, maybe celiac?

Edited , 3 users are following.

Back in March I got a nasty lower respiratory infection (it was never diagnosed because COVID restrictions were in place, but it seemed an awful lot like viral walking pneumonia). I was coughing really violently and unable to walk more than a few feet for a few weeks, but after about a month of being really sick I started to recover slowly. About a month after starting to recover (around the end of May), I started to have a recurrence of respiratory problems, shortness of breath, chest pain on inhale, cough, intense fatigue. I was told it could be post-viral asthma, but none of the medications worked and had normal blood, heart and lung function tests (crp, thyroid, d-dimer, sed rate, cbd, spirometry, and EKG). I also started to notice a sensation of getting extremely full after eating only a little bit (around June) and a globus sensation in my throat for hours after eating as well as a dull almost cramp-like pain on my left side under my lower ribs that can be really uncomfortable especially when sitting upright. In August I went on omeprazole daily and that helped my respiratory symptoms quite a bit and allowed me to eat more for a little while but after about one month on the PPIs I started having trouble swallowing to the point that I can only eat liquids and so much fullness in my stomach that some days I feel so full from drinking water that I don't eat any food. I had an EGD endoscopy and they found that everything is normal except some mucosal changes in my duodenum and this could be caused by celiac disease. I'm curious if anyone has seen anything like this. I can barely function given my inability to eat and have lost a lot of weight. I'm planning to try a gluten free diet, but I just feel like nothing has really been working and I'm really frustrated and heartbroken to give up bread.

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  • Posted

    Hi,

    I've been feeling full after eating very little as well. I have this dull ache in the centre of my chest and on the left side too.

    I'm on pantoprazole but it isn't helping much.

    I've lost a lot of weight too and I'm constantly crying over all of this. it's very frustrating that it doesn't get better with medications and the doc is clueless on how to proceed from here.

    I know it can be so hard to deal with 😦

    Have you talked to your doc about the swallowing issues?

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    • Posted

      I'm so sorry you're dealing with similar issues - it's incredibly frustrating, and I think the lack of adequate food really impacts my ability to be positive and I'm really grumpy ~90% of the time.

      I talked to my doctor about the trouble swallowing a while back, but haven't had an appointment since it got much worse. I told the doctor who did my endoscopy about it and I think she seemed concerned, but as far as I remember she didn't have any answers, but I honestly don't remember my conversation with her very well since I was still coming out of sedation (super frustrating that they had such an important conversation with me while I was too high to remember half of it). Anyways, so far no one seems to have any ideas. Before my endoscopy I was almost certain it was caused by an esophageal stricture due to GERD which I thought was a result of a hiatal hernia from all the hard coughing I did back in March, all my symptoms lined up perfectly and now I'm just baffled since apparently everything is perfectly normal.

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    • Posted

      Yeah everything came out normal for me too. It's even more frustrating this way because my doc thinks that it's all in my head. I do get anxious because of it but in this pandemic situation, I can't really have an appointment with a therapist.

      I'm pretty sure that it's not in my head though since having that dull ache in my upper belly 24/7 cannot be just my head and there's the excessive burping too. It's so annoying

      I'm really at a loss here. It's so frustrating and hard to deal with.

      At this point, I'm just waiting it out tbh

      Tzumi xx

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  • Edited

    I was diagnosed with celiac in early June

    did they take a biopsy with your endoscopy to see if celiac damage is present in your intestine?

    did you have blood work to test for celiac antibodies?

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    • Posted

      Yeah, they took biopsies of each tissue, but I'm waiting to hear back. I haven't done the blood test, but it seems redundant with the biopsy at this point. I was just wondering if people had similar experiences with difficulty swallowing and early satiety as their main GI symptoms with celiac since those seem fairly atypical from what I understand.

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