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Can anyone tell me what my sons results mean?

He is 12, type 1 diabetic but doesn't complain about typical celiac symptoms. He is high functioning austic.

The Prometheus Celiac Plus tests states:

Serological markers for celiac disease not detected.

HLA DQB1*02 detected. This represents half of the DQ2 heterodier associated with celiac disease.

His total IgA was 178 mg/ml and ref range for his age is 41-395 (so that appears normal)

They say the results do not exclude a diagnosis of celiac disease. (so I am in limbo. do I go gluten-free or not? we have been gluten-free off and on and sometimes when my son eats gluten he gets canker sores. Last time he had gluten for 3 days in a row and got a HUGE sore inside his mouth.)

What would you do in my situation? It is difficult enough to be type 1 diabetic but throwing in the celiac disease on top is really hard for the guy. Yet, I do not want to compromise his future health by allowing him to eat gluten.

Thank you for any help you can offer.

Janet

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The other celiac tests, what tests were done??

The DQ2 gene is the main celiac gene, and most celiacs have that.

The mouth ulcer thing is also typical for celiac.

Have you considered going strictly Gluten-free Casein-free with him?

The diabetes 1 was probably triggered by gluten anyway.

In addition,autists have this leaky gut thing that causes skyhigh morphine levels frm peptides in casin and gliadin, so he should be totally off casein and gluten not just for the celiac issue, but for the casomorphine and gliadomorphine issue.

just googe reichelt gliadin

nora

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In addition,autists have this leaky gut thing that causes skyhigh morphine levels frm peptides in casin and gliadin, so he should be totally off casein and gluten not just for the celiac issue, but for the casomorphine and gliadomorphine issue.

Technically all scientific tests have failed to actually find any elevated levels of these opioidpeptides in autistic patients so this theory is most likely bunk. Additionally there have not been found higher occurrences of celiac disease in autistic children compared to normal children, however they did find a higher incidence of elevated gliadin antibodies.

The frequent ulcers definitely would point towards an autoimmune condition (like celiac disease) and so those combined with the genetic test results mean there is a decent chance your child might respond in some way to a gluten-free diet.

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Thank you for your comments. We have done alot of testing for the autism. He is high functioning but still has several "traits" of the condition.

We did have him tested for the gluten and casein proteins and he did have a slightly elevated gluten protein but not with the casein. He is mostly gluten free but he does have the occaisional gluten item, especially when around others like this Sunday at a bbq he had a hot dog bun. He has what is called "melt downs" when he is disappointed (although his are more mild, mostly bad attitude and crying). If I had tried to force the gluten free diet at the bbq then he would have had a melt down, so I let him have the bun and cookies. Had I brought something gluten-free from home he would have been resistant to that as it is what he has all the time.

I am just concerned that by allowing some gluten every so often I may be damaging him. I guess as he gets older I can explain more how the gluten could be hurting him. It is difficult to adhere to a strict diet like the gluten-free diet when you do not have a definitive diagnosis.

Again, thanks for your info.

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If I were you I would take him strictly off gluten for a good three month trial. At 12 he is old enough to understand that this is being done for his health and he would be better off without all those starches for his diabetes anyway, I believe. If at the end of three months you have not seen any noticeable improvement in mouth sores, behavior, whatever other symptoms he is having, then you could reconsider the decision, but you do have to do a strict trial, not giving him gluten every two or three days - that is almost the same as a full gluten diet. But you may just find those meltdowns going away.....

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mkmom, over at the delphi celiac forum there is one mother who hasa high funtioning autistic son, and has written a book about the Gluten-free Casein-free diet, and another mother has a daughter with problems with gltuen like that, and others have meltdown issues if the kids have some gluten, but not when they are off gluten.

Maybe go over there and as them what they think?

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Thank you all for the encouraging words. I know I really need to do a long term trial and be very strict. I had met a mother of a celiac daughter and she said after 2 1/2 years of a VERY strick NO gluten at all diet that her daughters learning disabilites went away. My problem is I feel so lousy myself I really don't have the energy to do it all. I went to my doctor yesterday with what he called "my list" (new doctor). I have the following family history and personal history:

maternal grandfather: very thin (malabsorption?), had all teeth pulled at age 25 (peridontal disease?) and had 1/2 of stomach removed. Died of heart attack.

mother: had all teeth removed around age 40, IBS dx, lactose intollerance, died of lung cancer (67) (smoker)

older brother: type 2 diabetic

younger brother: type 2 diabetic and schitzophrenic

me: Rheumatoid Arthritis, panic attacks, VitD deficiency, (nail ridges) calcium deficient?, joint pain, brain fog, unable to nurse 3 children, hypothyroidism, bone pain, overweight, fatigue, insomnia

So I went to see if my doctor would order genetic testing for me as I already had a neg antibody test a in '07.

He ordered a new antibody test and said for me to eat gluten for 1 week. I asked him if that was enough time (I haven't been gluten free but don't eat alot) that I had read 4-6 weeks at least. He said if you ate one bite your body would immediately have antibodies if you were celiac. Oh well....I guess I still have another 10 years of fighting before I can get a dx. LOL. Not funny really.

I am thinking of doing an Enterolab gluten sensitivity test. I have had allergy testing and I am not allergic to gluten but am allergic to eggs, dairy, sugar, and sesame seeds (I like chinese food).

Again, thanks for your help. I have some real work ahead of me getting my health back and my son and perhaps my other children too.

MKmom

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I was wondering what Prometheus meant with *02 and half the heterodimer.

The whole Dq2,5 celiac hete3rodimer is 0201 in the beta chain and 0501 in the alpha chain.

But there are several different DQ2 types, and some get mistyped as other types while they are a different kind of DQ2.

There is 2,2 which is beta 0202 and alpha 0201

see the charts at http://en.wikipedia.org/wiki/HLA_DQ

http://en.wikipedia.org/wiki/HLA-DQ2

that said we have quite often questions about DQ2,2 here, and that tells us that they do have a risk for celiac. It even says so in the literature.

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He is 12, type 1 diabetic but doesn't complain about typical celiac symptoms. He is high functioning austic.

The Prometheus Celiac Plus tests states:

Serological markers for celiac disease not detected.

HLA DQB1*02 detected. This represents half of the DQ2 heterodier (heterodimer) associated with celiac disease.

What would you do in my situation?

The terminology used in the serologic test is different than that used in the genetic marker test but are so similar that a person who has not studied the different doesn't realize that what looks like the same term really means something different. Just assume that your child has a problem (He has a DQ2) with gluten and put all your family on a gluten-free diet for now until you have the genetic test done.

I have Celiac Disease and my brother has Type 1 Diabetes. He denies that he has any symptoms of celiac disease but his teeth are discolored which is diagnostic of celiac disease and he does have some problems common to people with celiac disease. My genetic marker DNA test at Enterolab reported DQ2 B 0302 and DQ2 B 0602.

The serological test used by Prometheus was the test used to help diagnose Celiac Disease before the DNA marker test was available. It is a less expensive test than the DNA marker test but the results can be very confusing. In your case I would suggest you order the genetic DNA marker test and because of your child's diabetes order from the lab that tests both the DQA and DQB markers. Enterolab tests only the DQB markers.

Enterolab reported that DQ B 302 is a main celiac marker and having the second DQ 0602 made the disease worse. DQB2 0302 in combination with some DQA markers also predisposes to Type 1 Diabetes. In this situation where a person is predisposed to both problems men are more likely to develop the diabetes and women more likely to develop celiac disease. Some people develop both. In the literature I found that DQB2 0602 gives some protection against developing Type 1 Diabetes so this might be the reason why I did not develop Diabetes.

If you are still confused about heterodimers let me know.

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Thanks Mari for all the information. It is very confusing but I have to study it over a few times and I should be able to get it.

Mkmom

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me: Rheumatoid Arthritis, panic attacks, VitD deficiency, (nail ridges) calcium deficient?, joint pain, brain fog, unable to nurse 3 children, hypothyroidism, bone pain, overweight, fatigue, insomnia

From your symptoms, and from what I've read about Celiac disease, in my opinion (since I have no medical leg to stand on :) ) it's very likely you are also gluten intolerant. Once your tests are done, I'd highly recommend a strict gluten-free diet and see how you feel. Even eating gluten occasionally will cause problems, because your body will react to even a tiny amount of gluten with antibodies and the resulting reactions. People have reported getting "glutened" from minuscule crumbs on their partner's mouth when they kiss them, so it really doesn't take a lot to make a huge effect on you.

You'll find that once you're off gluten completely, you'll become more sensitive to gluten. There's apparently a "masking" effect when you're regularly ingesting gluten, which makes it seem that gluten isn't having that bad an effect on you.

In addition... the disease symptoms itself can remain "silent" for many years, until triggered by something - environmental, age, pregnancy, food poisoning.

But judging by your auto-immune issues (Hypothyroid, Rheumatoid arthritis), you're already suffering. :(

All the best for you and your son's testing and health! :)

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You need to try getting off gluten! If I were you I would just try the diet rather than spending a bunch of money for more tests. Use the money for fresh cutting boards, a new toaster, some cookbooks, and some gluten-free bread! There is not a test available right now (Enterolab included) that is good at identifying people who simply feel better off gluten, and even people with true autoimmune celiac can show up as false negatives until a biopsy is done.

I am living proof that you DO NOT need a formal diagnosis to change your life by going gluten-free. I had a dramatic turnaround in my health by going gluten-free after I figured out it was a problem from an elimination diet. I told my doctor all the symptoms that went away when I went off gluten and he said I was probably celiac. He offered tests but I was finishing graduate school and didn't have the time to wreck my life again by eating wheat for a month so I declined.

It will probably be easier to try a strict diet with your son if you are not eating gluten either. You and he can share the same foods and you can set an example.

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even people with true autoimmune celiac can show up as false negatives until a biopsy is done.

And sometimes even then they will have a false negative on the biopsy. Not all GI and labs are as knowledgable about celiac and the changes seen before full villi destruction as they should be. Also there are times when the damage is patchy and can be missed. IMHO the truest test is strict elimination and the bodies response to that and then if the person feels the need a gluten challenge.

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