Where Do I Even Begin?

[Rachel85]

This is my first post here, and my first exploration into the unknown world of celiac.

I started getting symptoms a year ago...bloating, diarrhea, vomiting, cramps etc. But the real killer has been extreme indigestion and acid reflux, to the point where it even hurts to drink water. When I went to the doctor they gave me some tablets to help the indigestion and sent me away.

Their attitude was "you're a 25 year old female therefore you can't be having the symptoms you say you're having".

Fortunately, after much insistence on my behalf, I've been referred to the hospital. I saw my specialist 2 week ago and celiac was mentioned for the first time. They put me on a waiting list for a gastroscopy which I was told was a minimum of 6 weeks...but they contacted me recently and said they put me to the top of the list due to the severity of my case. I'm due to go in on Friday.

The problem is...I have very little idea about...well anything. My doctor simply mentioned celiac and sent me on my way. What if it is? What's the impact? I'm a 25 year old female currently studying a year intensive course to be a primary school teacher. Is it likely to impact my future job? Right now I'm struggling to make it to uni lessons as I'm either too tired from yet another painful night, or too busy vomiting or occupying the bathroom.

I'm so fed up with the pain but so scared about the future. Where do I even begin to deal with it?

[GlutenDude]

Hi Rachel. So sorry to hear what you are going thru. Not sure what your doctors are doing. If they suspect celiac, they need to get you in for an endoscopy and blood work immediately. Those are the ONLY two methods to diagnose celiac disease. If you don't have celiac, then you will obviously need more testing. If you do have it, then you need to stop eating gluten at once (but not until you've been diagnosed). Going on a gluten free diet seems overwhelming at first, but in time it becomes a part of who you are. I won't see it's easy, or always pleasant, but it is indeed doable and perhaps imperative for your health. Please keep us posted.

Gluten Dude

[newmom07]

Welcome, Rachel. Celiac is scary, but so are the symptoms you are living with. We discovered my son's condition 6 months ago and honestly, we have no trouble with 99% of our life. Our home is gluten-free, which makes things easier. We don't eat out much, and we carry snacks/gluten-free treats so we can participate in other activities. There are so many good gluten-free products, my kids still have pancakes and waffles and pasta, but in general we eat a more meat-fruit-veggie diet. Does it impact us, sure, but have we already found good work-arounds? Yep! And this board is a great place to start with the support and information you need.

[T.H.]

What if it is? What's the impact? I'm a 25 year old female currently studying a year intensive course to be a primary school teacher. Is it likely to impact my future job? Right now I'm struggling to make it to uni lessons as I'm either too tired from yet another painful night, or too busy vomiting or occupying the bathroom.

Where do I even begin to deal with it?

If it's celiac disease? That's a wonderful, wonderful thing (seriously, no sarcasm meant at all) because it means that in all likelihood, all this pain and crud that you're feeling with GO AWAY because doctors know how to stop your body attacking itself and you start to heal. You will not need to take medication, or have therapy, with the average celiac disease. All you do is change your diet (avoid gluten) and add a few practices that might be getting you gluten contamination into your mouth, and that's it. Done and done. The body heals, the diarrhea and vomiting stop, the exhaustion goes away...seriously, it's like you got a new lease on life, for many of us.

How quickly this happens is different for different people. Some feel immediately better, within days. Some, it takes a few weeks. Some have gluten withdrawal, which makes you feel like crap for a few weeks and then you finally start feeling better. For many of us, there can be a constant hunger for the first few days or weeks, or a feeling of exhaustion that increases a little for a little while.

Basically, when you go off gluten, your body is healing you. So it needs a lot of resources to heal up, and you will feel tired because it's actually doing a lot of work to get you better as fast as it can, you know?

Although there can be little hiccups, too. Some of us find we have other food issues that were hidden until we went gluten-free. The most common among people here seem to be dairy, soy, nightshades, and corn (or all grains). Many celiacs are lactose intolerant for a few months, but can have dairy again after they have healed up completely. so it's good to pay attention to how you are feeling as you heal, in case anything pops up.

The impact on your job will be there, but I believe it'll be manageable. You can't eat gluten, or get gluten in your mouth, so you won't be taste testing foods for the kids, and you'll have to pack your own meals or choose eating out places very carefully. I suppose sometimes this might impact things like field trips, as you'll likely need to carry your own food.

If you would normally do pasta or paper mache crafts in the class, you may need to pick something else instead - a LOT of gluten in the air may be enough to ingest just enough in the mouth, as you breathe, that it can make you sick. A group of kids all playing with flour based stuff like the above might prove to be too much.

Otherwise, you should be getting better now, not worse, so that shouldn't cause trouble with the job as long as you're careful. Accidentally getting gluten will make you feel sick, though, so you'll have to be careful to minimize sick days and ill health.

As to what you can do now? I'd take a look at lists of names for gluten that can show up on a label, so you know what to look for. Also, this is a great time to look up recipes for gluten free foods, even try to make some of them for one meal a day, maybe. So you can have foods that you already know you like by the time you start eating gluten free. :-)