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Problems Getting Diagnosed

fughawzi

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fughawzi Rookie
fughawzi
Posted

I've had issues with misdiagnoses forever, starting with depression at nine when it really was Hashimoto's thyroiditus. I'm getting extremely frustrated. I've had many doctors tell me that I most likely have celiac disease but they are are not comfortable diagnosing me because my Prometheus blood panel was inconclusive and I've been off gluten too long for a biopsy to be any good.

History: I'm eighteen and have been diagnosed with Hashimoto's thyroiditus, chronic fatigue syndrome, fibromyalgia, IBS, and have suddenly developed a ton of food allergies in the last year (soy, rice, apricots, bananas, almonds, chocolate, coffee, sweet potatoes, pineapples, dairy, shellfish, and turkey) when I have never had any before. In April of 2009, my GI ran the blood test and called for an upper endoscopy due to other issues I was having, but implied that I should probably go off gluten. I did and felt a thousand times better (fibro pain basically went out the window and I could actually function). I had to remind the GI to check for celiac, which he forgot about, but he said that he didn't see anything and celiac was very patchy (I had been off gluten for a few weeks). There was no biopsy. I've since been trying my best to avoid gluten, but have been extremely strict for about seven months now.

These are the Prometheus results:

tumblr_l6c6joUTLP1qd01p5o1_500.webp

This has been an extremely frustrating experience and I'm not quite sure what to do. It's very annoying to have doctors tell you that you probably have a disease but refuse to diagnose it, which is something I need for it to be taken seriously by my insurance and other doctors. If there are any suggestion for doctors in the Los Angeles area that may be able to help me, that would be fantastic and I would love you forever.

When I eat gluten: headaches, severe body pain, can barely function for a week or more, severe abdominal pain, body swelling (up to 9 inches at the waist), dermatitis herpetiformis (as told by an immunologist at Cedar Sinai but never biopsied), etc.

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sb2178 Enthusiast
sb2178
Posted

If you've been diagnosed with DH, you have Celiac. Can you get a letter from the immunologist or a copy of your record?

Or the next time you get the rash, get a skin biopsy done correctly?

fughawzi Rookie
fughawzi
Posted
  • Author

If you've been diagnosed with DH, you have Celiac. Can you get a letter from the immunologist or a copy of your record?

Or the next time you get the rash, get a skin biopsy done correctly?

I have the rash currently but my dermatologist said it was too small of an area to biopsy and it was "just dermatitis." I'll try contacting the immunologist again, thank you!

I forgot to mention that I can't even touch something containing gluten. I once tried to bake for someone and the flour actually ate through the skin on my hands. Is this normal?

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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
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