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Getting Diagnosed

K.Darling

By K.Darling
in Meet Up Room

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K.Darling Rookie
K.Darling
Posted

hi im 20 years old, my mom and myself have been battling for a diagnosis for many years and have finally been tested for (allergist) celiac disease. why is it so hard to diagnose? im young and have and have had many adnormal problems, i've been put on a wide variety of different drugs for different reasons, why is it that auto immune diseases are becoming so common and yet they are so commonly miss diagnosed? when will the disease pair with information? why is it that the doctor knows that you are sick and something is not right and you test positive for hlaB-27 gene and still test negative for a basic celiac blood test? and then test positive for it a second time? what is the difference in tests taken? and why do doctors not test you for it?

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sc63 Newbie
sc63
Posted

hi im 20 years old, my mom and myself have been battling for a diagnosis for many years and have finally been tested for (allergist) celiac disease. why is it so hard to diagnose? im young and have and have had many adnormal problems, i've been put on a wide variety of different drugs for different reasons, why is it that auto immune diseases are becoming so common and yet they are so commonly miss diagnosed? when will the disease pair with information? why is it that the doctor knows that you are sick and something is not right and you test positive for hlaB-27 gene and still test negative for a basic celiac blood test? and then test positive for it a second time? what is the difference in tests taken? and why do doctors not test you for it?

Bless your heart, I know exactly where you're coming from. I'm 46 and have been battling anemia, malnutrition, etc for over 20 years. I have never even heard of celiac until about a month ago when I changed doctors. He seemed to know right away what I was dealing with. I have since then gone through a battery of blood tests and yesterday after a biopsy I was diagnosed with it. I'm looking forward to dealing with it because I finally, finally, know what's going on. Have you spoken to your dr. about a biopsy? I hope you find something soon that will give you some hope.

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  • 2 weeks later...
Melodee Newbie
Melodee
Posted

Congratulations to both of you! Getting the diagnosis seems to be a hurdle for so many even though more and more is known about celiacs. Once you find a good doctor, stick with them. If you are not sure of the one you have check with your local celiac sprue chapter and seek one that has a better understanding of the disease. My battle was for my daughter who reached a point in high school where she actually had to be tube fed for 5 months. That followed another 18 months of tests and other nonsense before a gluten free diet was adopted by our entire family. The turn around has been dramatic. There are going to be other issues that arise along the way. My advice is that you need to arm your self with as much information as you can. Be aware of the problems that can develop in the future (at 21 my daughter already has osteopena) and take as many steps as possible to prevent them. The good news is that my daughter is so healthy and fit now that she is a distance runner with a Pac-10 university. Celiacs does not have to limit your life.

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  • 5 months later...
Branny Newbie
Branny
Posted

Because so many deases look like so many deases and allergies are masked behind more allergies, some people never get dignoised in their lifetime. Remember, You are Your Best Advocate! You have to be Actively Involved in making your own diginosies. Research your Family Health History! Before death and the living. Genes are all important and the more information you have the easier this task will become for you and all who follow you in your gene pool and Talk to your family (distant and close), they may be dealing with something they never understood all their lives before you started putting the pieces together. The more family history you gather the easier it will be for the professional to help you get your correct answers. Remember too, if it don't fit... keep looking!

Maybe read some of my other posts listed on my profile page to help with this questions as well.

Hope to help,

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  • 1 month later...
Travisevian Newbie
Travisevian
Posted

hi im 20 years old, my mom and myself have been battling for a diagnosis for many years and have finally been tested for (allergist) celiac disease. why is it so hard to diagnose? im young and have and have had many adnormal problems, i've been put on a wide variety of different drugs for different reasons, why is it that auto immune diseases are becoming so common and yet they are so commonly miss diagnosed? when will the disease pair with information? why is it that the doctor knows that you are sick and something is not right and you test positive for hlaB-27 gene and still test negative for a basic celiac blood test? and then test positive for it a second time? what is the difference in tests taken? and why do doctors not test you for it?

A great person once said "because they're idiots". I didn't say this so please don't quote me. haha Honestly, a lot of autoimmune diseases share common symptoms and many doctors(particularly in the states) are just not familiar with this disease yet. I've had chronic fatigue for the past seven years and many doctors to this day question its existence. I've tested negative for celiac disease as well, despite the many symptoms I have and the family history. It doesn't make sense to me either but you mustn't get discouraged. Keep being persistent and never give up on finding the answers to your questions.

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Skylark Collaborator
Skylark
Posted

I think the biggest problem is that HMOs pile too many patients on doctors. They don't have time to read and keep up on the research, and they don't have enough time to spend with patients.

I totally understand the frustration as I had to diagnose myself after many years of unexplained illness.

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    • trents
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    • Fluka66
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      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
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      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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