Please Help Explain, I Am New At This.

[jenn03]

I would appreciate your help in explaining your thoughts on any of this. First of all my son is 7 years old with a lot of symptoms and issues. He has ADD, underdeveloped muscles, seizures, Stomach aches, diarrhea, memory issues the list goes on. And my husbands side of the family has a bunch of relatives with celiac. So I talk to his Ped about it and they tested him through qwest for celiac. This is his results

HLA DQA1 01

HLA DQA1 -

HLA DQB1 0501

HLA DQB1 0602

It just said negative for DQ2 and DQ8

I looked it up here on other people alleles and It looks like DQ1,1 subtype 5,6 Gluten sensitivity genes from what I've read.

But not a hundred percent sure. I have asked my doc twice to ask the lab but he doesn't understand what Im asking for.

Also he came up positive for the gliadin IGG and IGA

Negative for TTG IGA

Negative Reticulin IGA

Normal Total IGA normal

Today we went to see the GI for the first time and she seemed very doubtful because he did not carry the main celiac genes. She said his gliadin results could be a false positive or be caused by something else. And that really frustrated me. Then I asked her about how I didn't understand why the alpha part of his gene test didn't looked finished or does the blank spot mean it was double. She didn't understand anything about the alpha part of the test only knew about the beta part. I have to say she did schedule him to have an endonoscopy in a couple weeks and told us even if it does come up negative to go gluten free for 6 months to see if there are any changes. Since it could be a gluten sensitivity issue. So I am thankful for that. But I find it very frustrating when the subject of celiac's or gluten sensitivity is so misunderstood or know so little about by the docs.

But any of you could please explain what you think his gene alleles are I would be so grateful, thanks. Figured this would be the best place to get answers since no one else can tell me and the labs don't talk to patients.

[Takala]

Here is a discussion thread from last October that should help you because it has a lot of links:

Genetics Question, Oct 23 2008

[Mother of Jibril]

Many people don't realize that gluten can damage a LOT more than your intestines. DQ5 and DQ6 are known to be associated with neurological damage. Both of the alpha genes are A1*01... I'm not sure why they left a blank spot instead of reporting the same information twice.

Definitely, once the endoscopy is finished you need to get your son on a gluten-free diet. Hopefully it won't take long to see some really remarkable changes

Good for you that you went looking for more answers!

[jenn03]

Thank you for the information about the what genes he is. I really apreciate it. Just wish I could get it from the doctors mouth. Were military and move so much. So the documentation is always good to have. Since you have to start over with every move you hit.

What are your views on the GI doc not taking the high gliadin IGG and IGA test seriously? She said it wasn't dependable and could be a false positive. I told her I thought false positives were rare. And she said it was a 11% chance. And that the test is unreliable and something else could of caused it. That view really bothered me. She's actually is going to be the one doing the biopsy in a couple weeks and said we would still try the gluten free diet even if the biopsy comes negative to see if there's a big change. So I guess she is looking into it. I am just bothered by the view on the gliadin test. And from what I've read it takes a long time for the neuro issues to repair themselves but the stomach and energy level heal quicker. But Im just grateful to get answers. But curious if that was a view to many GI doc about the gliadin test. Thanks for all you help.

[Mother of Jibril]

Ttg and EMA are more specific for celiac disease than anti-gliaden. However... IMO any doctor who blows off positive anti-gliaden results is doing a HUGE disservice to their patient. Your son is making antibodies to gluten... that's not normal! And it's certainly not healthy.

It's very possible that your son does not have celiac disease, but he's definitely intolerant to gluten. The symptoms can be equally bad... and the cure for both is a strict gluten-free diet. There are lots of threads about this if you want to look

[jenn03]

Mother of Jibril,

Thank you so much for answering my questions. It means a lot to me. Im very thankful for your help. This is new to me and its great to talk to people who know a lot about the subject. And to read the topics here and be able to learn so much. I will do what ever it takes to keep my family as healthy as I can. And we will be going gluten free for the whole family after my sons Biopsy. Luckily I have some relatives of my husband side not to far away that are celiac and said they would be ready to come over and clean my kitchen out and show me what to shop for.

And also thank you for explaining about the gliadin.

[Mother of Jibril]

My pleasure!

It's great that you have some in-laws who can help you get started, but I know how lonely it can be. My son is extremely sensitive to casein... for the first few months after we figured it out I wished I had somebody to talk to! I had a lot of questions, but I wasn't finding many answers. And then I found this place, which is SO helpful about all kinds of food intolerance and autoimmune issues.

Welcome to the group

[georgebrown]

What does a false negative really mean? I was told that my IgA was too low? My DR. said she is pretty positive that I have celiacs but that my numbers were too low and she thought it was a false negative? I have been on the gluten free diet for a week now and have seen a little difference in the D but not in how I feel, my fatigue and my headaches? Just really confused?

[Mother of Jibril]

Is it your total IgA that's too low? In that case, you could be half-dead and still get a negative result on the blood test. Would your doctor be willing to do an endoscopy or refer you to a GI specialist? I've read quite a few cases where people had a negative blood test and a positive endoscopy... that's another way to get a diagnosis of celiac disease. Schedule one quickly! A few weeks on the gluten-free diet might be enough to give you another false negative.

BTW... not everyone feels better right away on the gluten-free diet It depends on a lot of things... your age, the amount of damage, how strict you are about the diet, whether or not you have other food intolerance(s), etc...

[georgebrown]

Is it your total IgA that's too low? In that case, you could be half-dead and still get a negative result on the blood test. Would your doctor be willing to do an endoscopy or refer you to a GI specialist? I've read quite a few cases where people had a negative blood test and a positive endoscopy... that's another way to get a diagnosis of celiac disease. Schedule one quickly! A few weeks on the gluten-free diet might be enough to give you another false negative.

BTW... not everyone feels better right away on the gluten-free diet It depends on a lot of things... your age, the amount of damage, how strict you are about the diet, whether or not you have other food intolerance(s), etc...

That was my total IgA. She told me that a normal person is usually 200-300? I am still trying to get all the information from the blood test. They want to go for a month and see about the gluten and then redo the blood test?

I have been really strict about the diet! I am 33 and looking back at all my problems they think this really started when I was 13. They just did not know what was wrong. I have all the symptoms from swollen joints, hair loss, neuropothy, diarrhea, horrible stomach pains, gas, bloating, nausea, headaches, and my teeth hurt really bad! I have not lost weight though. I know have autoimmune thyroid. My vitamin D was very low and my B12 was very low. Just hoping it is celiacs and not something else!! I feel bloated and nauseated after anything I eat still even gluten free?

I am just confused and still very new!! I guess I need to have more patience? Confused

[Mother of Jibril]

That was my total IgA. She told me that a normal person is usually 200-300? I am still trying to get all the information from the blood test. They want to go for a month and see about the gluten and then redo the blood test?

I have been really strict about the diet! I am 33 and looking back at all my problems they think this really started when I was 13. They just did not know what was wrong. I have all the symptoms from swollen joints, hair loss, neuropothy, diarrhea, horrible stomach pains, gas, bloating, nausea, headaches, and my teeth hurt really bad! I have not lost weight though. I know have autoimmune thyroid. My vitamin D was very low and my B12 was very low. Just hoping it is celiacs and not something else!! I feel bloated and nauseated after anything I eat still even gluten free?

I am just confused and still very new!! I guess I need to have more patience? Confused

Off the top of my head, two members of this board that are IgA deficient are "lizard00" and "julirama723"... you might want to look at their profiles or send them a PM.

If you are IgA deficient, it won't help to repeat the blood test Your symptoms do sound right on the mark though! Thyroid disorders and vitamin deficiencies are more common in celiacs than the general population. It might just take some time to see improvements... I had to cut dairy products and all grains (with the exception of rice) out of my diet to get rid of the abdominal pain. One thing you might do is keep a diary of your diet and symptoms. This well help you figure out if other food(s) are causing a problem and help you keep track of your progress! You might also want to eat a really "clean" diet for a while... lots of fruit, vegetables, meat, beans, nuts, etc... and go easy on the processed foods.