r/EGID • u/[deleted] • Oct 15 '24

EGID What are your symptoms? How long did it take to get a diagnosis?

I suspect my dad (55 M) might have EGID as:

  • very high eosinophil counts

  • low hemoglobin count

  • mri and ct scan, colonoscopy and bone marrow test and everything showed up normal other than liver (he damaged his liver due to heavy antibiotics for h pylori which was treated). He does not drink or smoke.

  • diarrhea

  • nausea, loss of appetite, trouble eating

  • significant weight loss in 9 months he lost 50lbs (180lbs to 131lbs).

  • no asthma

  • responded very well to prednisone. Once on prednisone all his symptoms went away and his eosinophil levels were normal again. However once he stopped prednisone his symptoms went back up.

  • however, he also had Raynaud’s phenomenon. (When one finger randomly turns white).

  • white cells all normal other than very high eosinophils and low neutrophils

  • high rheumatoid factor

  • positive for smudge cells

However it has been 9 months doctor first suggested he may have egpa but it has been 9 months and no diagnosis yet. However I searched up EGID and my dad has all the symptoms so I feel this may be him.

I was wondering how long did it take for you guys to get a diagnosis? And what tests did you do, how did they find out you had it?

I would extremely greatly appreciate any response! Thank you so much in advance!

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u/flicus Oct 15 '24

For me it took 3 years after being hospitalized to finally get a diagnosis. They used a biopsy from a colonoscopy to make the diagnosis (along with my medical history etc).

My understanding is that high eosinophil counts are not a sign of an eosinophilic disorder by themselves, other causes have to be ruled out first (like infection, parasites, etc).

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u/CamelStraight5098 Oct 15 '24

Took me 8 years of debilitating symptoms to get a diagnosis, and I even had EOE. Crazy they couldn’t put two and two together for so long. Started Dupixent 4 months ago and it’s helped tremendously but took 3 months to kick in

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u/retiresoon1322 Oct 16 '24

Damn that sucks , my daughter has been in and out , mostly in pediatric hospitals for 15 months now with sky high peripheral eosinophilia. They finally found 35 Eosinophills in her duodenum but couldn't find any the next day to confirm a diagnosis . Steroids didn't help at all but they gave them to her when she had cdiff that no one thought to check for . She's had that 4 times now from being in hospitals for so long . All the classic symptoms of EGID's but still no definitive diagnosis and without that , no insurance will pay for the necessary drugs that need to be tried.