How Long Is To Long To Go Undiagnosed?

[KnightRobby]

I have gone undiagnosed for the past 14 years. It started out with a hospital visit with blood work and MRI's and even a spinal tap all negative in April 2000. This concluded to the minds of the doctors that I had mental problems. A straight-A student, perfect behavioral record in school, and no one - except for my family - believed me. It still devastates me to this day because I have lost so, so much from this. I only found out recently and now have proof of heart problems, dislocated jaw disc, and now the cause of it all: Celiac. I have been asked by many doctors if I have ever considered suing (I won't, but it's tempting!).

Anyway, I have yet to see a GI doctor. I am definitely looking into stomach problems, including possible cancer at the moment. The good news is that I don't have many of the symptoms, but it appears you don't need much. I recently went Gluten Free for the past weekend and noticed mild improvement, which I don't believe is normal for stomach cancer. I never jump to conclusions - its just there is SO much to do. I have so many doctors to see and so many tests to run still. Then I have to figure out this new diet plan. And of course, there's my severe chronic pain I have to get under control. And heart problems to boot. And then there's other things to do.

All of which I think have been caused by this Celiac Disease. How in the world did the FDA screw up this royally? It's unacceptable and in my opinion, they should be held accountable. What kills me is this crap is being shipped over seas and introduced into more rural communities, where there are NO doctors. In 1999, when I became ill, there were no Gluten Free labels. To make matters worse, Gluten goes by literally 150-200 different ingredient names. How was I suppose to know? Not one doctor mentioned the word "Celiac."

Well, I was wondering since I have been undiagnosed for this long what extra testing (if any) I might need? My twin brother Ryan, who isn't sick but might be developing Celiac, isn't happy with my progress. He gets so down seeing me like this. Basically, we are very close - heck, he's my best friend too.

Any advice on how to proceed would be appreciated. Would like to get past this for my twin bro at this point. Thanks for your responses.

[NorthernElf]

My friend I think it is time you decided you are in control. Many celiacs don't have a confirmed diagnosis and at some point it just doesn't matter. What does matter - is being healty.

You think you have celiac, you react to gluten - you are very likely damaging your intestinal tract and your body by continuing to consume it. A weekend test isn't enough. Eliminate it altogether.

How long is too long ? I think you are well beyond that point. If it makes you sick, don't eat it - avoid it like rat poison. Not all damage gluten does to your body is obvious by symptoms...in fact, some celiacs (confirmed by diagnosis) are asymptomatic.

We have all gone through some sort of denial, thinking why shouldn't we be able to eat like everyone else, esp. since we used to. It's really just up to you to make the change, be diligent about what goes into your body.

BTW, never heard of heart issues from gluten...and have heard of joint issues but not jaw dislocation.

[kittty]

I'm curious about the heart condition too. My doctor sent me to a cardiologist on a whim...well she sent me to just about every -ologist there was just to get me out of her office. He found nothing wrong with my heart...however when I was a teenager I was misdiagnosed with a heart condition. Misdiagnosis of heart conditions is quite common, because heart conditions are so common, and doctors sometimes fall back on that to explain random symptoms. I would recommend ALWAYS getting a second opinion with something like that, if you haven't done already.

I'm not saying that you don't have a heart problem. If you do have celiac you could have developed heart issues completely independently. I'm just really serious about people, especially younger people, double-checking the diagnosis because of my own nightmare. I was misdiagnosed with left ventricular hypertrophy by an idiot doctor who shouldn't even be practicing medicine, and the second opinion revealed there was nothing wrong with my heart at all. It was healthier than most.

[mushroom]

Hello, and welcome.

Unfortunately, failure to diagnose early is all too common in celiac. Some of us don't get a formal diagnosis at all, we just diagnose ourselves because we seem to be the only people capable of recognizing, finally, what is happening to our bodies. I am so sorry that this has happened to you to.

To answer your questions, there is a lot of anecdotal evidence about a relationship between TMJ problems and celiac, but no scientific proof. TMJ is often caused by stress and grinding teeth, and certainly what we go through is enough to make us do that!

I do have a heart problem (atrial fibrillation, mediated by the vagus nerve, in an otherwise totally healthy heart) which I can trace in a direct line back to food reactions. What kind of heart condition have you been diagnosed with?

We are finally getting some doctors who are familiar with celiac disease, and the average time to diagnosis is going down and according to the University of Chicago Celiac Center is now four years, which is much better than the lifetimes (30-40 years) some of us have experienced. Yes, it can leave you angry and bitter that you have lost a good chunk of your life to undiagnosed pain and suffering, but I believe you are better served in concentrating on making yourself healthy and making up for lost time in the rest of your life. than harboring and pursuing grudges against those who failed you.

[nvsmom]

I'm sorry you've had such a tough go.

I understand your anger and frustration at losing so much of your youth to celiac. I was diagnosed at age 38, and it was only because I stumbled across some information while looking into a health complaint for my son. I took a home Biocard test (for ttg IgA) and it was positive so I took it into my doctor who confirmed it. I was pretty bitter because I've had stomach issues as a baby and child, and the doctors completely dismissed it. I remember being told , "she is one of those people who gets stomachaches after she eats".... Yah well, 30 years later I was still getting stomachaches.

Going undiagnosed is incredibly common.

And yes, it unfortunately can lead to other problems. I ended up critically ill with ITP (idiopathic [unknown cause] autoimmune attack on platelets) as a teen and had to have my spleen out. I also ended up with thyroid problems. I don't know for certain that celiac caused that but it could have contributed.

JI'm not sure if you've been diagnosed but if you have not just go see your GP and ask for the celiac panel and you could know in a week if you have it. Your results could be compromised if you cut gluten out of your diet before the test so you'll have to continue eating it at fairly high levels until then. Have your vitamin levels checked for deficiencies as low levels can mess with your systems in a major way. You might want to check your thyroid too since misfunctioning thyroid can cause a huge host of problems like fatigue, heart palpitations, and anxiety; TSH and TPO Ab would be a good tests to run.

Good luck to you.

[MitziG]

We all get your frustration. I was undiagnosed for 30 years. Many here went even longer. The good news is...you will probably heal. It takes time, months, years sometimes...but it gets so much better.

Since you have your diagnosis, it is time to go gluten free for good. Also, request that they test your vit A, D, E, K, B12 and iron/ ferritin. These are typically low in celiacs.

It will get better from here on out.

[Adalaide]

I'm 34 and was diagnosed just before my birthday entirely by accident and happenstance. If it hadn't been for a related medical problem that led to emergency surgery I'd still be suffering with worsening symptoms today wondering what it is making me so sick. I realized after my diagnosis as I looked back that I have been sick with celiac symptoms for literally my entire life.

There are so many things that can be linked to celiac that it would be a little ridiculous to try to cover them all here. If you do a google search though you'll easily find lists and see what fits you and your symptoms and maybe something(s) will jump out at you to be tested for. This is in addition to the basic deficiencies we should all be tested for since we have useless intestines.

I agree that as long as you have a firm celiac diagnosis in hand you need to go gluten free immediately. You can't beat around the bush with it. Admittedly I did take time myself. I wasn't even aware I had had a biopsy done until I got a call with the results. I made an appointment with my doctor which was either 2 or 3 days before my birthday and didn't make any life changes before I saw my doctor. At that point I decided that I another few days wouldn't be life changing and that I emotionally needed those days and that last birthday with gluten to cope. If you need something similar, that's okay. But seriously, a few days tops. Get it out of your system and get gluten free.