Diagnosis - Can We Help The People Coming After Us?

[T.H.]

Hopefully, this is the right area for this topic!

I have been sitting here for a while now, feeling frustrated over my route to being diagnosed as a celiac, and the way so many doctors treat it.

I'm one of the 'Silent Celiacs,' who had no gut symptoms at all. I had soft tissue injuries constantly, was depressed, got sick with colds and flus a lot, and recovered slowly. That was it.

And while I understand that this makes it hard to diagnose as Celiac Disease, I look back and feel very, very frustrated that my doctors never thought, just once: maybe there's a reason this gal is sick all the time.

I know I thought of it, more than once. I even noticed trends that almost seemed like karma. As soon as I started feeling well, i would decide that my diet and not enough exercise were contributing to the problem. So I'd start eating well, and start exercising. Of course, that meant a lot of pasta and other gluten rich foods. Which meant that I would get sick almost immediately, or I'd pull muscles and injure myself right away.

I'm assuming now because just when I was trying to build muscle, I'd be depriving my body of nutrients and lowering my immune system instead. And on top of that, it looks like I have mild food allergies that have been undiagnosed my entire life

Now, my daughter and brother have been diagnosed with this as well, and I notice the same trend that I went through was present in my daughter's pediatrician. Just not looking at her symptoms and even once thinking about food. Very, very frustrating.

So, I have been wondering how to help the doctors to help us, and our kids, and the others out there who need it. Does anyone have any ideas?

I see ads for gluten free issues and celiac problems out there all the time now. In magazines, on tv, in stores. And yet, it still doesn't seem to be making a difference, at least not with the doctors I was seeing. (Thank god I finally found a great one) The lag time on awareness is too long.

So, I would love to hear any ideas anyone might have to get through to doctors - not just our current ones - and remind them to think of food sometimes, too. To listen to us a little bit. And I'll offer what I've decided to do to help me take back some of the frustration and anger that I have over this entire issue having gone on for so long undiagnosed.

I'm letting them know.

I am hunting down the address of every practice I ever went to, every specialist I ever went to, and I am writing them a letter. If they helped me, I want to thank them for their diligence and help.

If they tried but couldn't figure me out, I simply want to let them know what happened to me down the road, so that maybe somebody they try to help next might have better luck.

And if they were of the 'it's all in your head' variety,' I want to make certain they know exactly what was going on, and how insulting it was to be treated that way, and hope to god they pay attention.

I don't plan to leave my name, because frankly, I could just see insurance companies some day using that sort of crap for the 'pre-existing condition' because you wrote to an older doctor and said you had symptoms. (Yes, I'm a little paranoid. I can live with it.)

I am mentioning this here, just in case this sounds like something any of you would like to join me in doing. I know all I'm doing is going to affect a few people, and it might not do much. But I keep thinking...if enough people were to do this and write back to their doctors when they got a diagnosis, maybe it would help open the eyes of a few in the medical profession and help them realize how prevalent some problems actually are.

So...this is a small sample of one of my letters. Take it for what it's worth. :-)

Dear Dr. _______________,

As a former patient of yours, I wanted to write to you about my experience in your office, in the hopes that it may provide some help for future patients.

Ten years ago, I was a patient of Dr. __________ in your practice. Although not in athletics, within a one year span I was diagnosed with tendonitis, carpal tunnel, golfers elbow and tennis elbow in both arms at the same time. I was also diagnosed with plantar fasciitis. I was in the office constantly for coughs that wouldnt go away, flus, colds, aches and pains.

You and the clinic helped resolve these for the short term, or the issues were deemed permanent, but nothing further was done to ever determine why I might be having these problems. Now, years down the road, I have found the answer.

I have Celiac Sprue disease. I am also mildly allergic to almost every food in my previous diet.

Neither of these issues has ever given me gut symptoms, or hives, or any other cut and dried tell. The only outward signs were that I continued to get sick just a little more often than average, I constantly had trouble with soft tissue injuries, I had what was assumed were hay fever allergies and congestion nearly all year round, and I suffered from depression.

My current doctors never realized what I had either. I was diagnosed when I requested a Celiac panel after a family member diagnosed positive for Celiac Sprue. All of my allergies have been discovered as a result of that one diagnosis.

Two more family members have joined me as fellow Celiacs, both with only the same symptoms as myself.

After changing my diet, I no longer get sick all the time. I no longer get soft tissue injuries constantly, my hay fever turned out to be mostly a reaction to foods on my allergy list, and most of my general aches and pains were foods that I am sensitive to. Even my depression has disappeared.

Now I'm writing to you in the hopes that this information might help someone else who you treat, now or in the future. I considered the fact that about 1 in 133 people in the United States are likely to have Celiac Sprue, and a growing number of them with Silent Celiac Sprue like myself. I thought about the fact that having Celiac Sprue means we are more likely to suffer from food allergies and intolerances. And I thought the odds were good that you and your practice would be running into more people like myself in the coming years. When that happens, I hope reading about my situation may help remind you about Celiac Disease and food issues, and help someone else so that they dont have to go through over a decade of illness before finding the answer.

Thank you for your time,

A former patient

Shauna

[karma1485]

Shauna, you are NOT alone. I self diagnosed with celiac in September 2009 with the help of a good friend who pointed me in the right direction (she has been aware of her ciliac for over a year now). My symptoms consisted of Hypothyroid, Asthma, Allergies, CONSTANT NAUSEA, anxiety, problems sleeping, constant illness (flu, cold etc.). I had seen specialists and EACH ONE prescribed a different medication for each individual issue, failing to look at the larger picture.

When I first went off gluten I was supprised by the INSTANT loss of my nausea... so simple! Normally I would have been sick and had several asthma flair up's by this time in the winter but I have only gotten sick once and had one flair of asthma.

I used to think that it was all in my head, that I wanted to be sick for attention or something like that. I repeatedly told various doctors my problems and received NO HELPFUL solutions. I even went so far as to tell my current doctor that I was self treating with marijuana to alleviate my constant nausea and anxiety to which I believe I was dismissed as an irrational drug addict rather than a very sick person in need of some good solutions.

I think its a great idea to contact the doctors of horrible health past to let them know that your QUALITY of life has suffered because they overlooked something or didnt put the clues together. The 1 in 133 statistic is probably a low guess, i have a hunch that gluten intolerance causes MANY issues in the long run yet goes unchecked in most who may have it.

I have yet to go back to my doctor since i self diagnosed. I just havent had the need to go back because i havent gotten sick like i have in the past. On my next visit I intend on asking if they are aware of ciliac/ gluten intolerance and why they didnt think that I could have had it given my symptoms.

With more people realizing that they have the problem, only more people can become aware of the issue and I believe that with that awareness that the diagnosis rate will skyrocket.

[chasbari]

  On 1/9/2010 at 8:36 PM, T.H. said:

So...this is a small sample of one of my letters. Take it for what it's worth. :-)

Dear Dr. _______________,

As a former patient of yours, I wanted to write to you about my experience in your office, in the hopes that it may provide some help for future patients.

Ten years ago, I was a patient of Dr. __________ in your practice. Although not in athletics, within a one year span I was diagnosed with tendonitis, carpal tunnel, golfer

[Salax]

Think this is an excellent idea. Imagine if all of us did just 3 letters to doctors in our area, it could have a profound impact.

Perhaps the answer is to not only have a Celiac awareness day, but to be activists in our own communities.

[happygirl]

Consider adding info from NIH's Celiac Disease Awareness Campaign: Open Original Shared Link

A good article that was recently posted here (thanks, Lisa): Open Original Shared Link