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Other Immune Disorders

Rikki Tikki

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Rikki Tikki Explorer
Rikki Tikki
Posted

I am hoping someone can help me out. The doctor told me that I have this other health problem, something called achalasia. There is some thought that it is an immune disorder. He has to send me to a doctor out of town for whatever treatment they do.

I went to the doctor back in November because of pressure and pain under my breasts. Then in December I had pnuemonia. I am still having the pressure/pain under my breasts and also a lot of stomach pain. I also have a lot of pain/pressure in my chest going up through my neck into my head. It hurts to breathe. I had a repeat colonscopy (no fun) and a repeat endscopy. Thankfully, they were both fine this time. I also had a chest x-ray and a lot of blood work. The first blood draw showed high red blood cells, high lipase and other things off, but as far as I know when he re-did the blood it was fine.

My pulse rate is between 110-114 per minutes, that started in January and does not slow down at all. My doctor told me the achalasia wouldn't cause the rapid pulse, but that some people just have a fast pulse. I explained to him I never did before the incident in January, then he looked at me like I was dense. Prior to this my pulse was about 75 I think. Needless to say I left his office in tears and now I am sure he thinks I am a nut. It's like a flashback to before I found out about the celiac. I feel that the doctor found this ashalasia and so has stopped looking. I just feel something is really wrong and I don't know where to go from here. :(

If anyone has a clue as to what to do from here I would appreciate it. I am not comfortable going back and having him give me the look, like what do I want him to do about it. I had considered just getting a new doctor but I feel that until I am back to normal I probably couldn't get one to take me in the middle of this.

I am working but am basically dragging myself there. My energy level is way down.

Thanks for your help!

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KaitiUSA Enthusiast
KaitiUSA
Posted

Hey Sally the rapid heartbeat caught my eye. Is that sitting or standing? I found out I have graves disease(hyperthyroid) and one of the things that started recently was low blood pressure/high pulse upon standing. It doesn't happen all the time but it does sometimes. Have you had that checked? This new thing that your doctor found...how did he diagnose that? Could he have misdiagnosed for something else?

Hang in there :D

Rikki Tikki Explorer
Rikki Tikki
Posted
  • Author

Thanks for the response Kaiti. He did check my thyroid and he said it was fine. The pulse goes fast sitting, standing, laying down. It wakes me up in the middle of the night. It's just awful.

He diagnosed the achalasia with a thing called esophageal manometry. It is where they put a tube through your nose with sensors and it goes down to your stomach. Then they measure after swallowing water. I would never do that test again. I can't even put nose spray in my nose.

I guess the sensors showed that the waves and pressure are off in the esophagus. The only question I have, is the other symptoms started first, and I have to wonder if whatever is wrong is making the esophagus appear off? That plus the upper GI didn't show a problem. I am just really confused and really tired of feeling bad. He did try medication, I have been taking it for a month, but no relief so far.

I just don't know where to go from here.

mommida Enthusiast
mommida
Posted

What Thyroid tests were done?

Like Kaiti told you the rapid pulse could be a symptom of Graves. It could be a symptom of Hashimoto's thyroiditis too. The blood test should have been for T3, T4, and TSH (thyroid stimulating hormone). A thyroid ultrasound and thyoid uptake/function test should be done. Thyroid Disease is on a list of top ten underdiagnosed ailments. All tests results should be evaluated by an Endocronologist (spelling might be off).

Good luck with everything and keep us posted!

Laura

Rikki Tikki Explorer
Rikki Tikki
Posted
  • Author

As far as I know he did a blood test for the thyroid and felt my throat. He told me it was fine, he seems to always get kind of angry when I question him.

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      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
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      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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