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Do I really need an official diagnosis?

twillow

By twillow
in Dermatitis Herpetiformis

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twillow Newbie
twillow
Posted

After weeks and weeks of suffering with an excruciating mystery rash that did not respond to any of the standard treatments (steroids, antibiotics, etc) it occurred to my doctor that it could be DH. She immediately ordered a blood test for me, and warned me that it would likely be negative and that I would need a referral to a dermatologist to get a skin biopsy. However, I was suffering so much and unable to sleep, so I immediately stopped eating gluten and within a week it started to clear up. I made a mistake one day and glutened myself, and it immediately came back with a fury. After several more weeks being gluten-free, with no new outbreak, I am very hesitant to try and get the official biopsy diagnosis. 

First of all, I am in the process of moving overseas and will not have insurance for a few months, and then I will be living in Hungary and I'm concerned about describing the problem to a new doctor (with likely a language barrier) what the problem is and trying to get a biopsy. And even more importantly, I don't want to force myself to eat gluten for several weeks beforehand just to try and get the positive results, when I know that false negatives are common and it is EXCRUCIATING and nearly impossible for me to get by on a day-to-day basis.... so how necessary or helpful is it to have the official medical diagnosis?

Has anyone skipped getting the diagnosis and faced any pushback for it? Or inability to claim to have celiac without a doctors endorsement?

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kareng Grand Master
kareng
Posted
34 minutes ago, twillow said:

After weeks and weeks of suffering with an excruciating mystery rash that did not respond to any of the standard treatments (steroids, antibiotics, etc) it occurred to my doctor that it could be DH. She immediately ordered a blood test for me, and warned me that it would likely be negative and that I would need a referral to a dermatologist to get a skin biopsy. However, I was suffering so much and unable to sleep, so I immediately stopped eating gluten and within a week it started to clear up. I made a mistake one day and glutened myself, and it immediately came back with a fury. After several more weeks being gluten-free, with no new outbreak, I am very hesitant to try and get the official biopsy diagnosis. 

First of all, I am in the process of moving overseas and will not have insurance for a few months, and then I will be living in Hungary and I'm concerned about describing the problem to a new doctor (with likely a language barrier) what the problem is and trying to get a biopsy. And even more importantly, I don't want to force myself to eat gluten for several weeks beforehand just to try and get the positive results, when I know that false negatives are common and it is EXCRUCIATING and nearly impossible for me to get by on a day-to-day basis.... so how necessary or helpful is it to have the official medical diagnosis?

Has anyone skipped getting the diagnosis and faced any pushback for it? Or inability to claim to have celiac without a doctors endorsement?

Obviously, you can chose what you want to eat or not eat.  But most doctors will not let patients self- diagnose.  So don’t expect them to believe you have Celiac.  But , if you can’t get your rash biopsies now, you certainly can just be gluten-free.  Sometimes, with dh, you need some medication to help get rid of it and that would require a diagnosis

PK-432 Explorer
PK-432
Posted

When you have reached to your home country then  you should go for official diagnosis if it is possible to tolerate gluten for  at least 1-2 months. Best of luck 

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