Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

12 Years! What's The Point Of Diagnosis?
0

9 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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........

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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!

0

Share this post


Link to post
Share on other sites

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 http://www.naturopathic.org/ for a Naturopathic Doctor in your area who could help you.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,142
    • Total Posts
      919,559
  • Topics

  • Posts

    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,174
    • Most Online
      1,763

    Newest Member
    Mnoosh
    Joined