Diagnosis Testing/should I Eat Gluten?

[glutenetulg]

Hello, I am a new member, 25 year old male. Up until a few weeks ago I'd never heard of Celiac disease.

This is a long story, but hopefully someone will read it

For about six months now I've experienced some stomach cramping and abdominal pain, especially after meals. At first I ignored it as simple indigestion, but it has gradually gotten worse to the point of being nearly unbearable. Eventually these symptoms were joined by bloating after meals (can't button up pants), mild/severe pain that starts low and climbs upward toward my ribs, insomnia, fatigue, and very recently some tingling and muscle cramps in my arms and legs. These symptoms sound unrelated, but their intensities are linked, i.e. when the pain is worse than usual, the tingling, bloating, and fatigue will also be worse than usual.

I finally cracked and went to see my doctor, and he suspected gallbladder stones, though afterwards I realized I didn't fully describe all of my symptoms to him. I didn't really feel this diagnosis fit my situation, but went with the doctor's belief.

He asked me if I noticed a link between any specific foods and the pain, and I felt like a moron because it had never occured to me to look for any food patterns.

He ordered a general ultrasound and I patiently waited for results.

I then started paying attention to my meals and noticed the pain flare-ups were most prominent after eating certain foods. I specifically found a very immediate link between crackers and cookies. These would always cause immediate pain. The only time I eat bread is for lunch during the work week, and I have flareups every work day right after lunch.

At this point my mother randomly informed me that she was just diagnosed with Celiac disease, and I should get any stomach/intestinal problems checked out (she was unaware that I was already experiencing problems).

I put this together with my observations that gluten equals pain from the last week and decided to do a trial gluten free diet.

Within two days of staying gluten free the pain flareups had almost disappeared and the cramping had decreased significantly. My general ambient pain and discomfort remained, but was much milder. Each day since I'm feeling better on average (though I went through the gluten-withdrawal "flu" about a week after starting).

My Ultrasound results came back clean, and I asked my doctor about Celiac disease. He ordered an upper G.I., which I am due for in just under two weeks. We spoke only briefly by phone, and I forgot to mention my gluten free diet.

At this point I've been gluten free for 3 weeks and feel better on average than I have in three months.

So now I have three main questions:

1. Should I go back to eating gluten before the test?

I've read that this may be necessary to get accurate test results (the test is just two weeks away now). However I'm scared to eat gluten again as I do not want to repeat the more severe pain and possible gluten withdrawal later.

2. Why would he order an upper G.I? Is this common for a celiac diagnosis?

After he ordered this test I looked around and it seems that a blood test and biopsy are the standard tests for celiac. However at the same time I wouldn't mind getting the results of the upper G.I. anyways in case it reveals something else as the cause of my problems.

3. Should I ask him specifically for the blood test or biopsy, or just trust the doctor's judgement for now?

Thanks in advance for any help provided

[Ursa Major]

Hi, and welcome to these boards.

I believe the general consensus on this board (due to experience) would be to NEVER trust any doctor to know ANYTHING. There are very few doctors who have a clue about celiac disease. So, yes, ask for any test you want done specifically, and in great detail. Because chances are your doctor won't know what he is doing. And if he does, it would be a rather unexpected occurrence and a pleasant surprise.

And yes, there are fabulous doctors out there (I haven't met one yet, other than ONE in Germany, last summer), but they are few and far between and a rare and hard to find breed.

I am afraid that if you don't go back to eating a TON of gluten for the next few weeks your tests will all come back false negative. Five weeks gluten-free would be way too long to get accurate results. In fact, so would three weeks.

If you don't want to get sick all over again, you could of course just remain gluten-free and be satisfied with knowing that gluten hurts you, and since it is genetic and your mother has celiac disease, it is very likely that gluten is your problem as well.

You could still have your upper GI to make sure nothing else is wrong.

[ravenwoodglass]

Hello, I am a new member, 25 year old male. Up until a few weeks ago I'd never heard of Celiac disease.

This is a long story, but hopefully someone will read it

For about six months now I've experienced some stomach cramping and abdominal pain, especially after meals. At first I ignored it as simple indigestion, but it has gradually gotten worse to the point of being nearly unbearable. Eventually these symptoms were joined by bloating after meals (can't button up pants), mild/severe pain that starts low and climbs upward toward my ribs, insomnia, fatigue, and very recently some tingling and muscle cramps in my arms and legs. These symptoms sound unrelated, but their intensities are linked, i.e. when the pain is worse than usual, the tingling, bloating, and fatigue will also be worse than usual.

I finally cracked and went to see my doctor, and he suspected gallbladder stones, though afterwards I realized I didn't fully describe all of my symptoms to him. I didn't really feel this diagnosis fit my situation, but went with the doctor's belief.

He asked me if I noticed a link between any specific foods and the pain, and I felt like a moron because it had never occured to me to look for any food patterns.

He ordered a general ultrasound and I patiently waited for results.

I then started paying attention to my meals and noticed the pain flare-ups were most prominent after eating certain foods. I specifically found a very immediate link between crackers and cookies. These would always cause immediate pain. The only time I eat bread is for lunch during the work week, and I have flareups every work day right after lunch.

At this point my mother randomly informed me that she was just diagnosed with Celiac disease, and I should get any stomach/intestinal problems checked out (she was unaware that I was already experiencing problems).

I put this together with my observations that gluten equals pain from the last week and decided to do a trial gluten free diet.

Within two days of staying gluten free the pain flareups had almost disappeared and the cramping had decreased significantly. My general ambient pain and discomfort remained, but was much milder. Each day since I'm feeling better on average (though I went through the gluten-withdrawal "flu" about a week after starting).

My Ultrasound results came back clean, and I asked my doctor about Celiac disease. He ordered an upper G.I., which I am due for in just under two weeks. We spoke only briefly by phone, and I forgot to mention my gluten free diet.

At this point I've been gluten free for 3 weeks and feel better on average than I have in three months.

So now I have three main questions:

1. Should I go back to eating gluten before the test?

I've read that this may be necessary to get accurate test results (the test is just two weeks away now). However I'm scared to eat gluten again as I do not want to repeat the more severe pain and possible gluten withdrawal later.

2. Why would he order an upper G.I? Is this common for a celiac diagnosis?

After he ordered this test I looked around and it seems that a blood test and biopsy are the standard tests for celiac. However at the same time I wouldn't mind getting the results of the upper G.I. anyways in case it reveals something else as the cause of my problems.

3. Should I ask him specifically for the blood test or biopsy, or just trust the doctor's judgement for now?

Thanks in advance for any help provided

You should ask for a blood test and if you choose a biopsy for diagnosis. Do remember though that the tests can give you a firm yes but if they are negative you would still need to try the diet to be sure. But.... with you Mom having just been diagnosed your chances of also having celiac are really strong with your symptoms. Dietary response is also a valid form of diagnosis if you can stick with the diet without an 'official' diagnosis from your doctor. Although some doctors will diagnose with dietary response when a family member has been firmly diagnosed.

You have the option also of going with Enterolab for testing, they test for the antibodies and you will not have to start poisoning yourself for 3 months to test.

An upper GI will not tell you if you have celiac. If you do choose to have the upper GI you do need to be aware that the barium solution that they use is loaded with gluten. That can lead to a very unpleasant testing experience and a painful week after it. There are solutions that are gluten-free, do demand if you have the test that they give you one. The drink will be clear and the consistancy of water.

[LuvMoosic4life]

Wouldn't a gene test be good in this case? I'm just curious too b/c I'm in the same situation, gluten free and refusing to go back just for a test that may come back negative either way. With the gene test it doesnt matter if ou are eating gluten or not, it will show wether or not you are at risk for celiacs.....but i may be wrong on this, maybe someone can fill me in....