Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Do I really need an official diagnosis?


twillow

Recommended Posts

twillow Newbie

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master
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

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 

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,792
    • Most Online (within 30 mins)
      7,748

    smendelson
    Newest Member
    smendelson
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jordan23
      Ok so know one knows about cross reactions from yeast,corn, potatoes, eggs, quinoa ,chocolate, milk, soy, and a few more I forgot.  There all gluten free but share a similar structure to gluten proteins. I use to be able to eat potatoes but now all of a sudden I was stumped and couldn't figure it out when I got shortness of breath like I was suffocating.  Then figured it out it was the potatoes.  They don't really taste good anyways. Get the white yams and cherry red 🍠 yams as a sub they taste way better. It's a cross reaction! Google foods that cross react with celiacs.  Not all of them you will cross react too. My reactions now unfortunately manifest in my chest and closes everything up . Life sucks then we die. Stay hopeful and look and see different companies that work for you . Lentils from kroger work for me raw in the bag and says nothing about gluten free but it works for me just rinse wellllll.....don't get discouraged and stay hopeful and don't pee off god
    • K6315
      Hi Lily Ivy. Thanks for responding. Did you have withdrawal? If so, what was it like and for how long?
    • trents
      Welcome to the forum, @Doris Barnes! You do realize don't you that the "gluten free" label does not mean the same thing as "free of gluten"? According to FDA regulations, using the "gluten free" label simply means the product does not contain gluten in excess of 20 ppm. "Certified Gluten Free" is labeling deployed by an independent testing group known as GFCO which means the product does not contain gluten in excess of 10 ppm. Either concentration of gluten can still cause a reaction in folks who fall into the more sensitive spectrum of the celiac community. 20 ppm is safe for most celiacs. Without knowing how sensitive you are to small amounts of gluten, I cannot speak to whether or not the Hu Kitechen chocolates are safe for you. But it sounds like they have taken sufficient precautions at their factory to ensure that this product will be safe for the large majority of celiacs.
    • Doris Barnes
      Buying choclate, I recently boght a bar from Hu Kitchen (on your list of recommended candy. It says it is free of gluten. However on the same package in small print it says "please be aware that the product is produced using equipment that also processes nuts, soy, milk and wheat. Allergen cleans are made prior to production". So my question is can I trust that there is no cross contamination.  If the allergy clean is not done carefully it could cause gluten exposure. Does anyone know of a choclate brand that is made at a facility that does not also use wheat, a gluten free facility. Thank you.
    • trents
      @Manaan2, have you considered the possibility that she might be cross reacting to some food or foods that technically don't contain gluten but whose proteins closely resemble gluten. Chief candidates might be dairy (casein), oats (avenin), soy, corn and eggs. One small study showed that 50% of celiacs react to CMP (Cow's Milk Protein) like they do gluten.
×
×
  • Create New...