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Need Help Prepping For Celiac Test

KatyE

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KatyE Newbie
KatyE
Posted

I've had trouble with intestinal problems of all sorts for a few years now. I had a friend a while back who suggested being tested for Celiac disease, but I didn't think it was necessary. However, I recently went on a low-carb diet, on which I cut out all starches completely. I've been on it for 3 weeks, but I take every other weekend off. Last weekend, I took a 2 day break from the diet. Saturday morning, I had toast, and for lunch, I had chicken noodle soup (homemade--the noodles were thick). Within a couple of hours, I started getting cramps, gas and horrid bloating. It went on all night (didn't help that I had pizza for dinner), and the next day. I went back on the diet Monday, but I called my doctor to ask if I could be tested. He got back with me today (Wednesday), and is mailing me the lab slips. So basically, I was off of gluten for one week, on for two days, off for two weeks, on for two days, off for two days, and today I ate some pasta for dinner.

I know I am supposed to be eating gluten before the test, but for how long, and how much? Should I just eat normally, or should I make sure that I have something with gluten each day until the test? Can I plan on taking the test in two weeks? More? Less? The nurse who called me didn't have any idea, and I am not sure that my doctor knows either.

Honestly, I don't think I have celiac disease, but I do think I have a gluten intolerance. However, since it can be so serious, I want to rule Celiac out.

Any guidance would be helpful. Thank you in advance.

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Wolicki Enthusiast
Wolicki
Posted

I don't think anyone can say with certainty if your tests will be accurate or not. The "rule of thumb" is that you should be eating at least 3 slices of bread per day for 3 months for an accurate test.

For sure, try to get gluten every day until your test. But be ready, because you have been gluten light, it could affect the tests.

Panopticism Rookie
Panopticism
Posted

I am being tested tomorrow. I had been gluten free for 3 years prior to eating it now in preparation for the test. I made it about a week and a half with no symptoms other than a bit more gas than normal and a bit of bloating. After that week and a half mark, I took a turn for the worse. Started getting really sick, extremely watery diarrhea, brain fog, zone outs, black outs, joint pains, muscle fatigue, weight loss, generally feeling like I am slowly dying. I had such severe abdominal pain at work this evening that I was contemplating a trip to the ER. I decided that I was going to feel like poop anyway, so I might as well be at home where I feel most comfortable.

Not sure if my 16 days of gluten will be enough for an accurate blood test, but I honestly can't see myself making it another day of eating this way. There's no way I could keep eating it the entire time I'm waiting for results, and waiting for the biopsy pending a positive blood test. Wouldn't be possible, unless I had some oxy and a month off work.

Perhaps my symptoms are so severe because I was gluten free for 3 years?

melblondin Apprentice
melblondin
Posted

Ugh! I'm in the same boat. I'm supposed to get bloodwork done, but I've been gluten-free for a week and a half now and I'm not sure if that's enough to affect the test or not, but I don't want to eat gluten again because I'm doing so well being off it. I think I'll just get the labs done and see, but I hate knowing the false negative is out there because then you're still just left wondering.

michelley65 Rookie
michelley65
Posted

Ugh! I'm in the same boat. I'm supposed to get bloodwork done, but I've been gluten-free for a week and a half now and I'm not sure if that's enough to affect the test or not, but I don't want to eat gluten again because I'm doing so well being off it. I think I'll just get the labs done and see, but I hate knowing the false negative is out there because then you're still just left wondering.

I'm also waiting for my results...after being gluten free for about a week and a half..I had my blood test done and have a feeling that its going to be negative...but I feel better without gluten so who cares what the results are...I know what my body is telling me,and that is that gluten doesnt agree with me,so why eat it?

Panopticism Rookie
Panopticism
Posted

I'm also waiting for my results...after being gluten free for about a week and a half..I had my blood test done and have a feeling that its going to be negative...but I feel better without gluten so who cares what the results are...I know what my body is telling me,and that is that gluten doesnt agree with me,so why eat it?

I am the other way around. I had been gluten free already for 3 years. I had to start eating it to get the bloodwork. I started getting unbelievably sick after 10 days or so. Went to the doc on the 17th day, and she said that I hadn't been on it long enough to get an accurate result, I'd probably false neg. She said to go back to the gluten free diet immediately, because there was no way I would last long enough to get the results, wait for a biopsy appt., etc. I almost went to the emergency room the night before my doctor's appointment.

What's weird is that I was fine for the first 10 days of eating gluten. It was then that I took a steep drop. Got a bunch of sores in my mouth, severe abdominal pain, lost 8 pounds in 3 days, horrible diarrhea, total brain fog, no short term memory, mumbling, stuttering, inability to make eye contact, sleeping for 14 hours, sleeping through alarms for 6 hours. So on and so forth.

My doctor said I would have to get a diagnosis in the future, because it does matter whether you are or are not actually celiac. She said she likes to have her Celiac patients biopsied every couple of years because there is the chance of small bowel cancer. She said to consult the GI because you can usually get an accurate result from a biopsy after eating gluten for a much shorter period of time before the bloodtest would pick it up.

ravenwoodglass Mentor
ravenwoodglass
Posted

I am the other way around. I had been gluten free already for 3 years. I had to start eating it to get the bloodwork. I started getting unbelievably sick after 10 days or so. Went to the doc on the 17th day, and she said that I hadn't been on it long enough to get an accurate result, I'd probably false neg. She said to go back to the gluten free diet immediately, because there was no way I would last long enough to get the results, wait for a biopsy appt., etc. I almost went to the emergency room the night before my doctor's appointment.

What's weird is that I was fine for the first 10 days of eating gluten. It was then that I took a steep drop. Got a bunch of sores in my mouth, severe abdominal pain, lost 8 pounds in 3 days, horrible diarrhea, total brain fog, no short term memory, mumbling, stuttering, inability to make eye contact, sleeping for 14 hours, sleeping through alarms for 6 hours. So on and so forth.

My doctor said I would have to get a diagnosis in the future, because it does matter whether you are or are not actually celiac. She said she likes to have her Celiac patients biopsied every couple of years because there is the chance of small bowel cancer. She said to consult the GI because you can usually get an accurate result from a biopsy after eating gluten for a much shorter period of time before the bloodtest would pick it up.

It is not unusual for the reaction to be delayed. As my allergist explained it can take some time for the antibodies to build up enough to cause the reaction. As to whether you need a doctor derived diagnosis I have to disagree with your doctor and her habit of rescoping every two years indefinately for folks with celiac. According to the NIH after 5 years gluten-free our chances of developing cancer related to celiac go down to the same as folks without. I hope and pray that someday the doctors in the US start to use the mucosal challenge instead of the dietary challenge. It is very accurate and avoids us having to be poisoned for months for diagnosis. Even on a full gluten diet some of us still have a false negative biopsy so that is no more conclusive than the blood tests. The best test is your response to the diet. If that is good I personally would not let the doctors talk you into a lengthy challenge.

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