Diagnosis Issue

[aliciasmom]

Hello!

I am hoping to get some "fresh" outsiders thoughts on my daughter's situation.

She is 21 now, but throughout her childhood she had: petit mal seizures, constant stomachaches, headaches, tiredness, always thought she was "lazy". She was depressed, constantly worried, paranoid, about everything. Seizures went away, then when she was about 17, she started having panic attacks, hyperventillating to the point of passing out...nothing in particular seemed to trigger them, they lasted about a year or so. Those have gone away..for now. However, she is anemic, with no obvious cause? Tired all the time. She has called and said she felt like she was going crazy...strange thoughts in her head that she knew were not reasonable, but believed them. I researched some on Celiac, and thought it was a real possibility that she could have this. The blood test she took came back positive for the antibodies. Which I understood to mean that she carried the gene, and her body was fighting the disease, but it was not active, which meant she didnt have it. The doctor just said she shouldnt eat too much bread. Uh, right. OK, I understood this to be a genetic condition, but no one in either side of the families have it (and know about it). I, (her mom) was tested, her dad was tested, her aunt and uncle were tested. We all came out negative. SO, does she have it or not????? Should we try the diet and see? Get her little sister tested?

Any thoughts/comments will be appreciated!!

Thanks!

[MySuicidalTurtle]

Just because this is a genetic disease does not mean everyone gets it.

[Rachel--24]

The blood test she took came back positive for the antibodies. Which I understood to mean that she carried the gene, and her body was fighting the disease, but it was not active, which meant she didnt have it.

Once the disease is "triggered" its always active....even in the absence of symptoms. If she had positive antibodies that doesn't mean that she carries the gene. Only a gene test can determine that. Positive antibodies would indicate that her immune system is "attacking" gluten. Her immune system wouldn't be fighting the disease...it would actually be the cause of the disease since celiac is autoimmune.

[aliciasmom]

Once the disease is "triggered" its always active....even in the absence of symptoms. If she had positive antibodies that doesn't mean that she carries the gene. Only a gene test can determine that. Positive antibodies would indicate that her immune system is "attacking" gluten. Her immune system wouldn't be fighting the disease...it would actually be the cause of the disease since celiac is autoimmune.

Thanks for the information...forgive my ignorance...why would her immune system be attacking gluten if she either a. didnt have the gene, or b. didnt have the disease?? What did it mean if she tested positive for the antibodies?? I dont know if I am making sense. I dont even know what questions to ask! Thanks for any info you may have...

[Ursa Major]

That doctor obviously knows very little about Celiac disease. Has your daughter had a biopsy of the small intestine, to check for damage? That should really be the next step, before going on the diet. And then, whether or not this test comes out positive, she should try the diet. Because the tests can give a false negative, the diet is the ultimate test. But if you try the diet first, the bowel will start to heal if it is damaged, and then the test results won't be accurate.

And yes, all the symptoms your daughter has and had could be caused by Celiac disease. And it would be a good idea to have her sister tested as well.

[lovegrov]

One thing that would help is if you could tell us which blood tests she had and what the numbers were. Generally speaking, if you test positive for the antibodies, you've got it.

richard

[aliciasmom]

That doctor obviously knows very little about Celiac disease. Has your daughter had a biopsy of the small intestine, to check for damage? That should really be the next step, before going on the diet. And then, whether or not this test comes out positive, she should try the diet. Because the tests can give a false negative, the diet is the ultimate test. But if you try the diet first, the bowel will start to heal if it is damaged, and then the test results won't be accurate.

And yes, all the symptoms your daughter has and had could be caused by Celiac disease. And it would be a good idea to have her sister tested as well.

Ursula,

I felt the same way about the doctor. We only got a call from the nurse who didnt sound very confident about her answers to my questions. She pretty much just told her not to eat too much bread, which I didnt think would help.

Her sister hasnt had the symptoms she had as a child, but certainly has her own "problems" Slightly overweight, stomache always hurting, etc. I think I will have her tested at her check up this month.

THANKS!

[Merika]

Yes, the doctor sounds typically uninformed. I wouldn't think he would run a gene test. He should be running the TTG test and the "full blood panel for celiac" which is 4-5 tests, including the ttg. Going by "she has the antibodies for celiac" would imply she tested positive for celiac on the ttg test, which means she has celiac, and indeed needs to go 100% gluten free. "Eat less bread" as the doctor said, is just ignorant and harmful. Ask for referral to a specialist, if you want one, and read a lot here and online, as this is where the most up-to-date info is

It is possible that she is the only one in your immediate family who has celiac. Her sister, and all immediate blood family should be tested, though, and you were smart to get tested yourself, as first degree blood relatives have a 1 in 10 chance of having celiac.

I hope you have found the answer to your daughter's health problems. Certainly everything you mention could be attributed to celiac.

Here's to hoping you have your answer....

Merika

[aliciasmom]

One thing that would help is if you could tell us which blood tests she had and what the numbers were. Generally speaking, if you test positive for the antibodies, you've got it.

richard

Richard,

I will try to get that information...I'm not sure what blood tests they did. Actually, when she, I and her dad were tested, all three docs looked at us like we were crazy, and had to look up the tests they needed to perform, so who knows..?

[Rachel--24]

Thanks for the information...forgive my ignorance...why would her immune system be attacking gluten if she either a. didnt have the gene, or b. didnt have the disease?? What did it mean if she tested positive for the antibodies?? I dont know if I am making sense. I dont even know what questions to ask! Thanks for any info you may have...

Lots of people have positive antibodies but still test negative in a biopsy or do not carry either of the main Celiac genes. These people are labeled gluten intolerant w/out Celiac. It really doesnt matter what you call it because the treatment is the same for both. A negative biopsy also doesnt mean she *doesnt* have Celiac...she just may not have intestinal damage yet....or it may be easily missed. The tests really arent 100% yet so the BEST test is always the diet itself.

You can also opt for Enterolab testing which is suppossed to me more sensitive than the blood tests. They also do gene testing for the 2 main celiac genes as well as the gluten sensitivity genes (there are other genes that have been linked to gluten intolerance).

Hope I'm not confusing you.