Jump to content

  • 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

12 Years! What's The Point Of Diagnosis?

coffee1

By coffee1
in Dermatitis Herpetiformis

Recommended Posts

coffee1 Newbie
coffee1
Posted

I have been diagnosed with: Psych issues, (for the skin rash mind you) Pregnancy rash (for 12 years?) subdermal something (basically they said you have a rash. We don't know what it is. Sorry.) adult eczema (none of the things I did helped) very mild allergies to trees, grass, mold, dust, animals (um, basically everything to cover their butts because they couldn't quite figure it out) In the 12 years I have seen as many Dr's. Every one with a different story. Most said it was an autoimmune thing but couldn't find it. None of them addressed the "whole picture" My extreme fatigue, the rash, my poop issues, depression, joint discomfort. Why do they always want to say that it is a psych thing? It seems they can't get past the depression. HELLO!

I have a couple of friends that are celiac. I figure what do I have to lose? Go on the diet for a week and my symptoms immediately relieve. Not completely clear but relief! This has affected my whole life. I can't wear shorts or sleeves out. Or I get, "wow the bugs really like you!" or the evaluating my skin with a disgusting look. Hey I can't help it. I wake up and I have scratched all night and I don't even know it. Or have my husband run his hand over a spot and pull back... Yea, that makes a person feel like being romantic. I worry myself crazy about getting MARSA with all these stupid sores...

Anyway, Why go to the trouble of getting an official diagnosis? I started eating my regular diet so I could be assured of a positive diagnosis. But I can't stand it. I itch so bad! What is the point of having the Dr's diagnosis? Is it for future issues I might have? I am happy to finally know what this thing is.

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

Celiac.com Sponsor (A8-M):


AndreaB Contributor
AndreaB
Posted

Getting a diagnosis from a doctor is a personal thing. My family is not officially diagnosed, but we did have positive ELISA IgG tests as well as celiac genes.

I don't know whether we had progressed to celiac but consider us celiac due to the genes.

Be sure to check your soap/shampoo etc. for wheat/oats/barley or rye. I know wheat and oats are in quite a few.

ShayFL Enthusiast
ShayFL
Posted

I do not have an "official" diagnosis. The genes and positive response to the diet is enough for me. If I have future health concerns, they can treat those. I do not see why having an official diagnosis would change future care. You will need to tell doctors/hospitals that you are "allergic" to gluten. But other than that........

Tim-n-VA Contributor
Tim-n-VA
Posted

Not having the official diagnosis is not a barrier to future care. However, the celiac related symptoms overlap a lot of other diseases/conditions. Diseases also tend to occur in clusters. Having an autoimmune disease like celiac makes is more likely that you'll have other autoimmune diseases like diabetes or thryroid problems.

Bottom line is the more you and your doctor know the better off you'll be. Human bodies are complex and differential diagnosis can be tricky with overlapping symptoms.

Ursa Major Collaborator
Ursa Major
Posted

It sounds like you have DH (dermatitis herpetiformis), which is only caused by celiac disease. If you still have a lot of active blisters, you could have your skin biopsied (right BESIDE an active, blistery outbreak, never through it). If you are diagnosed with DH, you have your celiac disease diagnosis, without bothering with the regular tests for celiac disease.

You could also still go to your doctor and have your blood drawn to do the celiac disease panel.

Or you could just consider yourself self-diagnosed and just keep eating gluten-free (like me). If the gluten-free diet is relieving your symptoms, be glad and stick with it.

linuxprincess Rookie
linuxprincess
Posted

Many people with DH suffer for various lengths of time and finally realize what is going on with their bodies. Glad that you figured it out, though! Once you find out that being gluten-free helps this, why would you ever eat it again? The one thing that everyone agrees on is that gluten-free helps this issue. Some times there are other foods that can trigger this condition as well, so I do recommend a food allergy test just to double check things.

Welcome to the Board!

CarolAnne Apprentice
CarolAnne
Posted

The only diagnosis I ever got was Wheat Allergies...I just stickwith that. I have never been diagnosed with Celiac...but I am German and Irish descent (sp??) so I figure I definately have the gene...that's good enough for me.

By the time I was able to get a decent diagnosis of Wheat Allergies I was covered (nearly 75%) with the rash. I was miserable!! Doctors kept telling I'd have to learn to live with it...ha! Like they ever could!!

I went on the WF/gluten-free diet full speed...and started taking a homeopathic fungal medicine called FNG that I got from my Naturopathic Physician. And I was 95% cleared up in only a few weeks. I stopped taking the FNG but continue on the Diet still. I now have only a few small spots on my hands...that I think will never go away...but I feel 100% better.

Perhaps you could check here Open Original Shared Link for a Naturopathic Doctor in your area who could help you.

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

Celiac.com Sponsor (A8-M):


RoseTapper Newbie
RoseTapper
Posted

I can completely identify with your doctor problems. I also went from dermatologist to dermatologist and doctor to doctor to find out what was wrong. The last dermatologist I visited about it (17 years ago) also recommended that I see a psychologist to "Help you accept the diagnosis of severe acne." In the end, I figured it out myself. My son grew up to have the same condition--and in the same areas on the body/face--and we both have to eat gluten-free to keep the blisters at bay and to feel well. It's up to you if you want a true diagnosis, but if doctors give you the heebie-geebies like they do me, why bother? Now you know what is wrong, and you're on the path to better health--good for you!

Jenm4cm Newbie
Jenm4cm
Posted
I have been diagnosed with: Psych issues, (for the skin rash mind you) Pregnancy rash (for 12 years?) subdermal something (basically they said you have a rash. We don't know what it is. Sorry.) adult eczema (none of the things I did helped) very mild allergies to trees, grass, mold, dust, animals (um, basically everything to cover their butts because they couldn't quite figure it out) In the 12 years I have seen as many Dr's. Every one with a different story. Most said it was an autoimmune thing but couldn't find it. None of them addressed the "whole picture" My extreme fatigue, the rash, my poop issues, depression, joint discomfort. Why do they always want to say that it is a psych thing? It seems they can't get past the depression. HELLO!

I have a couple of friends that are celiac. I figure what do I have to lose? Go on the diet for a week and my symptoms immediately relieve. Not completely clear but relief! This has affected my whole life. I can't wear shorts or sleeves out. Or I get, "wow the bugs really like you!" or the evaluating my skin with a disgusting look. Hey I can't help it. I wake up and I have scratched all night and I don't even know it. Or have my husband run his hand over a spot and pull back... Yea, that makes a person feel like being romantic. I worry myself crazy about getting MARSA with all these stupid sores...

Anyway, Why go to the trouble of getting an official diagnosis? I started eating my regular diet so I could be assured of a positive diagnosis. But I can't stand it. I itch so bad! What is the point of having the Dr's diagnosis? Is it for future issues I might have? I am happy to finally know what this thing is.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,144
    • Most Online (within 30 mins)
      7,748
    Jenny0384
    Newest Member
    Jenny0384
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted, leg pain , stomach,skin and eye issues,high blood pressure to name a few all worsen because I was a  school bus driver and few years until my immune system went to hell and was fired because of it.Im still struggling now, Im sibo positive and been told im not celiac and that I am.I have a hernia and dealing with menopause. Its exhausting and is causing depression because of non medical help. Today I saw another gastrointestinalist and he said everything im feeling doesn't add up to celiac disease since my ITg levels are normal so celiac disease is under control and it's something else. I for got I had Barrett's esophagus diagnosed in 2007 because recent doctors down played it just like my celiac disease. Im currently looking for a pcp in my area because it is affecting me personally and professionally. Im told since celiac looks under control it's IBS and I need to see a therapist to control it. Gastrointestinalist around here think only food consumption and if ITG looks normal its bit celiac disease it's something else. Is this right? This is what im being told. I want medical help but told its IBS.Im feel lost by " medical team "
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.