Symptoms Pre-Diagnosis

[David55]

Hello, I'm new to this website and have been experiencing symptoms that would be related to those with Celiacs. I have had on and off diarrhea, constipation, extreme nausea, low grade fevers, bad aches, and headaches for a while. This went on and off for about three or four months and have done blood testing and stool testing and those tests came back okay. However, I was told to go on a gluten free diet for two weeks and suddenly my symptoms went away. I felt better than I had in months. However, after the two weeks were up, I ate as much gluten containing foods as I could in 2 days and I suffered the consequences two days later by going to the bathroom an abnormal amount of times, stomach cramps and headache, fatigue and low grade fever. My question is does this sound like Celiacs? Is it weird to have symptoms onset almost a day after eating gluten? Also, is it normal to feel worse as the day goes on? I'm a full time student who works and yesterday I have a normal temperature of about 97.7 (my normal temp) and went up to 99.4 after my full day. I laid down for 30 minutes and it went back down to 98.4 (a full degree in 30 min), If anyone can help, any advice and input would be much appreciated to a new person to this community. 

Thank you in advance!

[GFinDC]

Hi David,

Yes, your reactions do sound like possible celiac disease symptoms.  Some people have GI system symptoms very quickly, but others have symptoms after hours.

The usual process for getting diagnosed with celiac disease is to get a blood test for antibodies to gluten (actually gliaden).   Then if the blood tests are positive an endoscopy is generally done to take biopsy samples from the small intestine.  You should not stop eating gluten until all celiac testing is completed as that could invalidate the test results.

After only 2 weeks off gluten you probably still have antibodies at detectable levels though, so just keep eating gluten and try to get a blood test scheduled right away.  You don't need to eat a lot of gluten, but a little every day is needed.  One or 2 slices of wheat bread is enough.

Welcome to the celiac disease forum!

[David55]

1 hour ago, GFinDC said:

Hi David,

Yes, your reactions do sound like possible celiac disease symptoms.  Some people have GI system symptoms very quickly, but others have symptoms after hours.

The usual process for getting diagnosed with celiac disease is to get a blood test for antibodies to gluten (actually gliaden).   Then if the blood tests are positive an endoscopy is generally done to take biopsy samples from the small intestine.  You should not stop eating gluten until all celiac testing is completed as that could invalidate the test results.

After only 2 weeks off gluten you probably still have antibodies at detectable levels though, so just keep eating gluten and try to get a blood test scheduled right away.  You don't need to eat a lot of gluten, but a little every day is needed.  One or 2 slices of wheat bread is enough.

Welcome to the celiac disease forum!

I am going to go get the endoscopy done in a couple weeks so hopefully that will give me more answers. I just wanted to hear some input from people with Celiacs so this helps a lot. Thank you so much!

[GFinDC]

You are welcome David.

They should take 4 to 6 biopsy samples for microscopic examination during the endoscopy.  They then look at those samples for damage characteristic of celiac disease.  The blood tests include DGP IgA and DGP IgG, plus ttg IgA and total IgA.  You only have to be positive on one blood antibody to gliaden to have celiac disease damage.

It's good to catch the condition early as it gives you a chance to avoid major damage to your body over the years.  Since celiac disease is an autoimmune condition, we never outgrow it or get to cheat on the diet without consequences.  The immune system is very sensitive and begins an immune attack with even miniscule amounts of gluten exposure.  But the immune system also kills germs and keeps us from dying of many diseases so it's not all bad.

There is a Newbie 101 thread stickied in the coping with forum with lots of information.

 

[squirmingitch]

David, have you had the celiac blood work done? You need to have that done as well as the endoscopy. We've had a rash of people lately it seems whose docs do the endoscopy first & then the blood work after the endoscopic pathology result comes back. That's backwards especially when the patient is told to go gluten-free after the endoscopy. Like GFinDC says, you need to be eating gluten every day until all testing is finished.

I second that you certainly have enough symptoms to pursue testing.

[Beverage]

And keep eating that gluten until all that testing is complete!!!

[David55]

On October 20, 2016 at 5:05 PM, GFinDC said:

You are welcome David.

They should take 4 to 6 biopsy samples for microscopic examination during the endoscopy.  They then look at those samples for damage characteristic of celiac disease.  The blood tests include DGP IgA and DGP IgG, plus ttg IgA and total IgA.  You only have to be positive on one blood antibody to gliaden to have celiac disease damage.

It's good to catch the condition early as it gives you a chance to avoid major damage to your body over the years.  Since celiac disease is an autoimmune condition, we never outgrow it or get to cheat on the diet without consequences.  The immune system is very sensitive and begins an immune attack with even miniscule amounts of gluten exposure.  But the immune system also kills germs and keeps us from dying of many diseases so it's not all bad.

There is a Newbie 101 thread stickied in the coping with forum with lots of information.

 

Thank you so much again! I know I have to keep eating gluten until I get the bloodworm. I plan on getting the bloodwork done soon because I do have to keep eating the gluten:/ once I get those results,  I will do the endoscopy/colonoscopy. The weird thing is that last week I started eating gluten and then I feel crappy for a week and I've been eating it still, but it hasn't been nearly as bad. Still slight headaches and stomach problems but not as bad as last week. So fingers crossed! Thank you for the help again!