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What Do You Think...celiac?

lisaemtp

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lisaemtp Newbie
lisaemtp
Posted

I'm 25 years old, living near Clearwater/Tampa Florida. The more I read here, the more I wonder if celiac could be the explanation for my symptoms.

For several years, I've had a lot (a LOT) of gas/bloating, and pretty much constant diarrhea (or at least very loose stools). I also get severe tension headaches. A friend of mine was diagnosed with celiac/lactose intolerance two years ago and referred me to his doctor as I had almost the exact same symptoms - the doctor told me that celiac is very rare and he didn't think that was my problem, but he did test me for lactose intolerance which he said came back negative. I tried just eliminating dairy from my diet, but didn't get consistent results. He told me that it was probably IBS and that I should just treat the symptoms. I've tried various over the counter remedies (rolaids, tums, anti-diarrheals, anti-gas meds, etc) with no change. After seeing that doctor I gave up and just learned to live with the symptoms.

Over the last six months, it's gotten worse. The gas is pretty much a constant, I rarely have formed stools, and I'm almost always bloated and have abdominal discomfort. When i have to go to the bathroom, I have to go NOW. Over the last two months I've been exhausted all the time, to the point where I have difficulty staying awake at work. I'm sleeping more than usual and waking up tired. I've also had aching in many of my joints and my headaches have gone from weekly or every other week to pretty much every day. I've had enough, and a story on the news tonight mentioned Celiac and caught my attention. I've been online all night reading and trying to find a specialist in my area.

I'm so glad to have found this forum and to find that many other people have had the same problems with doctors taking them seriously. I know that I have many of the symptoms on the "checklist" for celiac, but has anyone here experienced anything similar? Regardless of how the tests come out I'll probably try a gluten-free diet (hey, it can't hurt).

Has anyone had problems getting these tests covered by insurance? I have BCBS which is usually fine, but I want to know what I'm getting into. Also, when going to see a GI specialist did you have a long wait to get in and get tested? Now that I have an idea what might be causing my symptoms, I can't wait to find out if this is it and get started on fixing it! I would just try the diet, but I would like to have an official diagnosis because of the genetic factors.

Thanks for reading and for creating such a supportive environment!

Lisa

PS - I was laughing reading all the "poo" posts...it sounds so familiar! Funny to think that we all spend so much time thinking about our poo...

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darlindeb25 Collaborator
darlindeb25
Posted

I would imagine BC/BS will cover any tests they would do for celiac disease. Find a Gastro doc and if the waiting list is long, then ask to be put on their cancellation list also. Check to see if you have a local celiac support group and contact them, ask for names of local doctors who are knowledgable about celiac disease--finding a good doctor is always a plus.

I have a good friend who has a winter home in Florida and she sends me articles from her local newspaper all the time about celiac disease--it seems the news is out in Florida on celiac disease. Definitely get tested for celiac's before you go gluten free, if it comes back negative, then yes, go gluten free and see what happens. A gluten free diet most definitely will not hurt you physically and it may make you feel so much better.

Feel better.

darkangel Rookie
darkangel
Posted

You might also have a candida overgrowth - by itself or in addition to gluten intolerance or celiac disease. There's an online quiz to help determine if candida might be your problem, or part of your problem:

Open Original Shared Link

ADevoto Explorer
ADevoto
Posted

I have the exact symptoms. I had a blood test through the "gold" standard lab (lots of money later) and it came back showing the genes but negative on tests. My doctor discounted my symptoms and said there was nothing wrong. I went on gluten free diet and felt better pretty quickly. Now I am having problems staying on it but I as soon as I eat gluten my diaherra comes back. So, I am going to redouble my efforts. Good luck

NY547 Newbie
NY547
Posted

Hi Lisa,

My daughter has BC/BS and has had the blood antibody panel for celiac ordered through her primary care provider. They even checked it a second time a few months later. No problems with reimbursement. Of course there are many forms of BC/BS, so if you are not sure, call the 800 number and find out for sure which ICD codes will cover the test and be sure they are listed on the labslip when you get your blood drawn.

You don't have to wait for an appointment with a specialist to get the blood test done. If you decide to follow up with a GI, whether the blood work is positive or negative, be sure to check if you need a referral. We DID need one, which my daughter's primary provided and even set up the appointment. (It still took 2 moinths even though the doctor's office scheduled it)

Good luck, I hope you find some answers.

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