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Sick And Nervous

Anastasiette

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Anastasiette Newbie
Anastasiette
Posted

I've been reading everything possible on this site to help figure things out, but I'm still nervous and feel sick. I've had a sensitive stomach since I was a little kid, but when I was 11, I started waking up in the middle of the night with intense abdominal pain that was only relieved after severe diarrhea. The episodes were never longer than an hour and usually happened two or three times a year. Senior year of high school they got worse-- one or two every month.

I figured it was possibly IBS and left it at that. I have a huge aversion to doctors (just not comfortable going) so I figured the attacks were pretty short and only ever happened at night, so I could live with that. Now I'm 18 and at college away from home and I had probably my worst 'episode' last night (I only have an episode about once or twice a semester now). I had extreme abdominal pain that woke me up and had me in the bathroom in seconds. I know it's gross, but I swear I can feel things moving through my intestines. I didn't feel instantly better after, either, which is unusual. I felt sick and nauseated and empty. This morning I feel the same and the thought of all food is just nauseating me.

Besides the pain and diarrhea, I've also suffered from gas a lot (I thought it was normal, but once I had like a huge balloon of gas in my stomach for an entire day that hurt so badly that I passed out briefly that morning-- not sure what that was all about) and I tend to bloat after I eat anything. I thought this was all fairly normal until recently.

I have a huge appetite and I'm a healthy weight-- I lose about a pound to two pounds right after the attacks, but other than that, I've never had any unexplained weight loss. I've kept a food journal for years, and the attacks seem somewhat random-- usually happening after I eat a lot of pizza in a few weeks (greasy foods and bread seem to be triggers?).

I also don't menstruate regularly (I've read that may be an indicator).

Basically, Celiac disease never occurred to me until this morning. I thought it was almost always genetic and it's nowhere in my family. My younger brother was tested (he has junior rheumatoid arthritis) but it came back negative. Does this sound like Celiac disease, because reading around here it kind of does. Should I get tested? I'm absolutely terrified at the prospect of that though... a scope or biopsy would be the most invasive thing I've ever had done. I've been perfectly healthy besides this. Any advice or commentary would be greatly appreciated.

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ravenwoodglass Mentor
ravenwoodglass
Posted

After I was finally diagnosed and went to a follow up appointment with the GI who had misdiagnosed me for years he asked me how I was feeling. I told him the best thing was not being woken up every night with incredible pain and D. He stated that he wished I had told him that sooner as being woken up with D rules out IBS. IBS doesn't wake people from sleep it hits when we are awake. Since I had told him repeatedly that I was sick every night that was my last visit to him.

Before you go gluten free you should be tested. But do keep in mind that even on gluten we can have a false negative result. It took years before the nighttime torture became a daily happening so just because it only hits sporatically doesn't mean your in the clear as far as celiac goes. Do give the diet a good strict try after you are all done with testing no matter what the results are.

kittty Contributor
kittty
Posted

If the thought of going to the doctor makes you nervous, you could try one of the home test kits first. I haven't tried them, but it sounds like other people on the forums have used them successfully. You could still get a false negative though, and you should probably follow up with a doctor either way.

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GFinDC Veteran
GFinDC
Posted

Hi A,

Yes, your symptoms do sound like celiac disease. There are 2 kinds of testing, the blood antibody tests are usually done first, and then an endoscopy is scheduled. It is your choice if you want to do medical testing in either case. But the blood antibodies are a pretty simple thing, just a blood draw and off they go to a lab. Since neither the antibody or the endoscopy are 100% reliable, it is wise to go ahead and do the gluten-free diet for several months regardless of how the tests come out.

Some schools have programs to support people with food allergies, and your school might have one. It would be a good idea to check with them and see if they require documentation of your condition. And what the program provides. They may allow you to opt out of the meal program and get a room with a kitchen so you can cook your own meals. Each school has it's own way of dealing with food allergies, so you will need to investigate yourself.

It is important to do any medical testing before going gluten-free, as the tests are not reliable after starting the gluten-free diet.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

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rosetapper23 Explorer
rosetapper23
Posted

Yes, you most definitely could have celiac, but you don't have to worry about the scoping. Whether or not your blood tests come back positive, you can just decide to go gluten free and see what happens. I suspect that you will start feeling fine...and that your menses will become regular. Your doctor should also test you for nutritional deficiencies (especially Vitamin D, B vitamins--particularly B12 and folic acid, magnesium, and iron).

As for your brother, I was diagnosed with junior rheumatoid arthritis when growing up because the doctors just couldn't figure out why I had joint and bone pain. Of course, this all disappeared after I figured out that I had celiac disease at the age of 47. I hope he doesn't spend the rest of his life suffering from an ailment that could be easily overcome with diet. His doctor may not have used the complete celiac panel for his testing, or his test(s) resulted in a false-negative. He should be retested using the full celiac panel, and then, regardless of the outcome, he should try following a gluten-free diet to see if it will help him. Even if he is gluten sensitive, rather than having full-blown celiac, the inflammation can cause bone/joint pain. Hopefully, his pain will be relieved shortly.

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