Blood Test Results Back And Hla Question

[Mox25]

Doctor called and said blood test negative. Don't know what to do now. My problems should probably not go ignored, but I really wanted to avoid the expensive and invasive colonoscopy. My original post is below and I would still love any info.

Also, I am wondering about the HLA genotyping. How is everyone getting this done? My doctors def. have not mentioned it. Are there private genotyping companies that you are using?

Posted Yesterday, 07:59 PM

Hi everyone,

I have read through the forum and think it's wonderful how helpful everyone is. I have a couple of questions for those of you who have been diagnosed. I want to know if my symptoms are consistent with Celiacs. Clearly, I am here bc I am having GI symptoms and match Celiacs, but with the broad range of symptoms that could be anyone. I am currently waiting on blood test results. I have a couple of symptoms that I am not sure match what others had before diagnosis and would love to know if any Celiacs experienced the following:

1) Sudden onset. I would not describe myself as someone who has had a "sensitive" stomach in the past. My symptoms just appeared and won't go away but it is not something I have struggled with my whole life. (I should add I am 26).

2)Mucus and blood in stool (ew). The thing is, the stool is normally formed but covered with mucus and a very SMALL amount of blood. This is true for every bm for > 1 month

3 )In ability to lose weight which has NEVER been a problem until the last six months (maybe I am just getting older)

4)I can't correlate my bloating, C, or general GI symptoms with any particular food. Maybe this because I eat a very healthy balanced diet so I am consuming dairy, grains, vegs, and fruit daily. But if I have Celiacs should I be able to somehow time my issues with the intake of gluten (ie 1 hour after I eat it I feel sick?)

Again, I am just wondering if anyone diagnosed with Celiac's had these symptoms before diagnosis.

Thanks so much!!! Any advice is greatly appreciated and I think it's wonderful to have a forum to help people deal with these struggles...

[Luddie]

Doctor called and said blood test negative. Don't know what to do now. My problems should probably not go ignored, but I really wanted to avoid the expensive and invasive colonoscopy. My original post is below and I would still love any info.

Also, I am wondering about the HLA genotyping. How is everyone getting this done? My doctors def. have not mentioned it. Are there private genotyping companies that you are using?

Posted Yesterday, 07:59 PM

Hi everyone,

I have read through the forum and think it's wonderful how helpful everyone is. I have a couple of questions for those of you who have been diagnosed. I want to know if my symptoms are consistent with Celiacs. Clearly, I am here bc I am having GI symptoms and match Celiacs, but with the broad range of symptoms that could be anyone. I am currently waiting on blood test results. I have a couple of symptoms that I am not sure match what others had before diagnosis and would love to know if any Celiacs experienced the following:

1) Sudden onset. I would not describe myself as someone who has had a "sensitive" stomach in the past. My symptoms just appeared and won't go away but it is not something I have struggled with my whole life. (I should add I am 26).

2)Mucus and blood in stool (ew). The thing is, the stool is normally formed but covered with mucus and a very SMALL amount of blood. This is true for every bm for > 1 month

3 )In ability to lose weight which has NEVER been a problem until the last six months (maybe I am just getting older)

4)I can't correlate my bloating, C, or general GI symptoms with any particular food. Maybe this because I eat a very healthy balanced diet so I am consuming dairy, grains, vegs, and fruit daily. But if I have Celiacs should I be able to somehow time my issues with the intake of gluten (ie 1 hour after I eat it I feel sick?)

Again, I am just wondering if anyone diagnosed with Celiac's had these symptoms before diagnosis.

Thanks so much!!! Any advice is greatly appreciated and I think it's wonderful to have a forum to help people deal with these struggles...

Mox,

You didn't say which blood test was negative. As for the gene testing, my doc sends to Mayo Clinic for that. Shows whether or not you have the genes for celiac, but of course doesn't mean that you do even if you have the genes.

The mucus might have to do with some sort of bacterial overgrowth in your small intestine. I have celiac disease and have actually gone off ALL grains, including rice, beans, etc. I got interested in the Specific Carbohydrate Diet and read about the overgrowth. That might give you some ideas about how to manage your diet. As for the colonoscopy, that is not the usual test for celiac. Rather it is from "the other end" (through your mouth) that they insert a scope to check. That's an endoscopy.

Good luck. Do lots of reading on this subject and sooner or later what you should do will become clearer in your mind.

Phyllis

[ravenwoodglass]

Do get a copy of the actual test results. You want to make sure that a total IGA was done as if that is low then it will make the tests negative. Some doctors will also call a low positive a negative. And some of us will show a false negative on both blood and biopsy. Celiac is checked for with a endoscopy not a colonoscopy but some doctors will do both. Gene testing is interesting but not diagnostic as many have the genes associated and don't develop celiac and many times only two of the many associated genes are looked for. While many have DQ2 or DQ8 there are other genes associated with celiac. Enterolab, if available in your state can do gene testing and check for the antibodies in the stool. They do not diagnose celiac but can tell you if your body is making antibodies. When you are done with all testing the truest test is how you respond to the gluten free diet done strictly. You should do a trial no matter what the test results are.

[Mox25]

thanks so much for your replies,

I am aware colonoscopy is not the way to diagonose Celiac. But but because my blood test was neg. and I am having GI probs, hence a colonscopy to determine what is actually going on. As far as the Celiac blood test, I was told they tested tTG and total IGA, but you are absolutely right. I will get a copy and look at the results myself. I was asking about the DNA test because I know the Celiac blood test can have false negatives. So a DNA test would maybe give me a clue without having to have the other procedures. Basically, since the blood test if neg. if I dont have the genes I would assume something else is def. going on.

[mushroom]

I have a couple of symptoms that I am not sure match what others had before diagnosis and would love to know if any Celiacs experienced the following:

1) Sudden onset. I would not describe myself as someone who has had a "sensitive" stomach in the past. My symptoms just appeared and won't go away but it is not something I have struggled with my whole life. (I should add I am 26).

2)Mucus and blood in stool (ew). The thing is, the stool is normally formed but covered with mucus and a very SMALL amount of blood. This is true for every bm for > 1 month

3 )In ability to lose weight which has NEVER been a problem until the last six months (maybe I am just getting older)

4)I can't correlate my bloating, C, or general GI symptoms with any particular food. Maybe this because I eat a very healthy balanced diet so I am consuming dairy, grains, vegs, and fruit daily. But if I have Celiacs should I be able to somehow time my issues with the intake of gluten (ie 1 hour after I eat it I feel sick?)

Again, I am just wondering if anyone diagnosed with Celiac's had these symptoms before diagnosis.

Thanks so much!!! Any advice is greatly appreciated and I think it's wonderful to have a forum to help people deal with these struggles...

1) Most celiacs have a triggering event, either emotional or physical trauma/stress, something like childbirth, even quitting smoking.

2) Mucous very common, blood not uncommon

3) Inability to lose weight - just as common as inability to gain weight

4) Inability to correlate symptoms with ingestion. - common. Time from ingestion to onset varies a lot amongst individuals, and even in any one individual. Sometimes other foods provoke the same response - I couldn't tell if it was corn or gluten (or. as it turns out, lectins) when I ate at a Mexican restaurant.

And I never have been diagnosed, except by myself

[mushroom]

Basically, since the blood test if neg. if I dont have the genes I would assume something else is def. going on.

The blood test merely indicates whether or not you have celiac disease. It says nothing about whether or not you tolerate gluten, with celiac disease being a subset of overall gluten intolerance. So you can "fail" the blood test but still be gluten intolerant and need to avoid it scrupulously for life.

[ravenwoodglass]

I was asking about the DNA test because I know the Celiac blood test can have false negatives. So a DNA test would maybe give me a clue without having to have the other procedures. Basically, since the blood test if neg. if I dont have the genes I would assume something else is def. going on.

The DNA test can not firmly rule out celiac. Generally they only test for the 2 most common genes and you can be celiac or gluten intolerant and not have one of those two genes. I am firmly diagnosed celiac and always showed false negative on blood tests and that delayed my diagnosis by many painfilled years. My DD who was diagnosed by both positive blood tests and biopsy was later told she wasn't celiac and never could be because she doesn't have one of those two genes. I don't have them either, I have a double dose of genes that are associated with celiac...in other countries but not the US. Long story short you can not automatically assume it is not celiac or gluten intolerance by tests. The best test if you have symptoms suggesting celiac is a strict trial of the diet after all testing is done.