Gene testing for gluten sensitivity

[mom md]

I have been told by two doctors here (GI and neurology) that a gluten free diet might be helpful to get the last few (very minor) issues under control. They are convinced that something is smoldering and keeping his immune system flared.

My son is doing excellent, but now we are trying to keep him here. He had PEX last summer, relapsed, then two IVIG tx this year. They also want to give him one more IVIG in the next month before school.

I have been dragging my feet on the gluten thing because my child has been through too much. I want to help him but I am struggling to keep him as "normal" as possible. He already takes more pills than an average 90 year old at age 9.

I sent off to have a gene test done by Enterolab to see if he had a genetic issues. He has trouble keeping weight on, inability to absorb iron, and some mild GI issues. A blood test for celiac was negative but he had had three months of steroids and two rounds of IVIG when we checked it. An endoscopy showed mild inflammation. I found out yesterday he carries the DQ2 gene for celiac and also a non-celiac gene that makes him gluten sensitive. I called today to get more info and she said that gene could predispose him to autoimmune neurologic diseases. She then asked me if he had had any neurological issues. Needless to say I was floored. Maybe gluten is a piece in this whole puzzle...

[matis_mom]

Thanks for the post... I have been thinking we need to try the gluten free thing. More specifically, I want to try the GAPS (Gut and Psychology Syndrome) diet. It has been proven very helpful for autistic children. It is supposed to give the gut a chance to heal, but it is very demanding, and I don't know if I would be able to keep up with all the cooking!

[nevergiveup]

There is so much gluten free goodies at Whole Foods, and after some trial and error u will find the best tasting cookies, pastries, brownies, micrwave meals, chicken nuggets(freezer section) and cupcakes. He will not miss a thing, pack his lunch and its not as hard as it use to be. Even walmart has GFCF products everywhere in the store and they are labeled. Betty Crocker has great stuff all new line of gluten free. SAM E makes the best gluten free bread, also at whole food we love the potatoe millet bread. It helped my dd's diahrrea tremendously and actually we all ate less carbs and more fruit and veggies. It was good for the whole family. I think soy flour is not so great for excitability so I also stay away from that. Great pasta's, howver stay away from rice pasta not so hot, corn pasta great, but under cook it or u will have polenta. Ketchup and mayo is always gluten fee from Heinz and Helmans. The difficult time is at friends houses, but the diet truly will not work unless he's gluten free, not even trace amounts for at least a month. Our pediatric rheumotologist says it truly helps RA and other autoimmune diseases in kids but only if it is adhered to completely and for a long time. He says it can be an unrealistic treatment for kids. He feels it is virtually impossible to adhere to. Except my dd had a child with severe celiacs in her class and this helped a lot since she already paved the way for all the teachers, kids and parents. So many understood and had special treats and food when my dd was around. Some even had special draws filled with GF items for my dd when she visited. The hardest to convince and the last to fall in line was her physician grandfather who didn't believe in "any of this stuff!".

[Suzan]

I want to get my girls tested for the gene too to try to help determine if they really have celiac but I have not committed to spending the money yet since the results it would not change what we are doing. Going gluten free changed our lives and we would never go back. I highly recommend it. Your ds may feel so much better (like my dd8) that he would not want to eat it any more. With the gene and his autoimmune issues, I think it would be a really good thing for you guys to do. I have lots of gluten free info in our city so let me know if I can help.

 

Susan

Edited August 7, 2010 by Suzan

[Suzan]

Oh, two other things,

 

One is, I am so happy to hear he is doing so well!! The other is, why did you do the gene testing? Was it specifically to see if he had the celiac gene to help you decide whether to go gluten free? Just wondering if there was another reason?

 

Susan

[dut]

Hi- we are also embarking on gf. My dd had gluten sens. bloodwork that all came back normal but when we did a stool test she had super low secretory IgA. Normal >600, low 400-600, she was 17 altho' antigliadin is supposed to be above 13 for this stool test and hers was 9, the ped and md at the lab thinks she is still probably celiac 'cos the ratio of SIgA to antigliadin is so bad. She also had 1 gene for celiacs but so does 30% of the population and a great aunt with dx celiac.

 

we've been told that there are 4 different blood tests that can be done to check celiacs. Some of which are only useful if you do a total IgA too. All of the blood test can be false negative. Stool samples are worth doing. Gene testing can only positively rule out, not rule in celiacs... and without the biopsy you can never know for sure.

 

To really tell through diet, we've been told, you need to be gf for 6 months as the antibodies can last that long in the body...

 

Tough for kids (especially with a non believing dh ) but we're going to try and see if it helps. Udi's makes great breads, muffins and pizza bases btw

[philamom]

There is so much gluten free goodies at Whole Foods, and after some trial and error u will find the best tasting cookies, pastries, brownies, micrwave meals, chicken nuggets(freezer section) and cupcakes. He will not miss a thing, pack his lunch and its not as hard as it use to be. Even walmart has GFCF products everywhere in the store and they are labeled. Betty Crocker has great stuff all new line of gluten free. SAM E makes the best gluten free bread, also at whole food we love the potatoe millet bread. It helped my dd's diahrrea tremendously and actually we all ate less carbs and more fruit and veggies. It was good for the whole family. I think soy flour is not so great for excitability so I also stay away from that. Great pasta's, howver stay away from rice pasta not so hot, corn pasta great, but under cook it or u will have polenta. Ketchup and mayo is always gluten fee from Heinz and Helmans. The difficult time is at friends houses, but the diet truly will not work unless he's gluten free, not even trace amounts for at least a month. Our pediatric rheumotologist says it truly helps RA and other autoimmune diseases in kids but only if it is adhered to completely and for a long time. He says it can be an unrealistic treatment for kids. He feels it is virtually impossible to adhere to. Except my dd had a child with severe celiacs in her class and this helped a lot since she already paved the way for all the teachers, kids and parents. So many understood and had special treats and food when my dd was around. Some even had special draws filled with GF items for my dd when she visited. The hardest to convince and the last to fall in line was her physician grandfather who didn't believe in "any of this stuff!".

 

Thanks for the great info. Can you recommend some good GF pasta? Can SAM E bread be purchased at whole fields?

[philamom]

Dut- May I asked what Udi's stand for?

[dut]

philamon - yeh, sorry, it's a brand name. See the link below

 

http://udisglutenfree.com/

 

our local food coop carries it but I suspect lots of other places do too... the bread is great as toast not heavy like some gf ones, the muffins are good enough to eat even if you're not gf and (I think it's udi's) they do a really good frozen pizza base, not all crumbly and mushy like some. We also get a corn/quinoa pasta that I think is virtually as good as the normal stuff called Ancient Quinoa Harvest. The real sticking point for us is gravy (the brown british type) and hot dog buns that aren't too yucky. We found some really good free range pork hot dogs with nothing nasty and now need some buns, it almost feels like a healthy meal

 

Glutino do good orea type cookies, bit gritty but taste good. Theres' so much out there.. super pricey, some of it, but tastes good...

[Stephanie2]

Hi Mom MD

 

Just wanted to tell you that my boys have been gluten and casein free for 1.5 years now. It took 2 months of research and trial and error before I could get it right and before I could get compliance with my older son (younger son was only 13 months). For my 5 year old I did notice a difference in tics/hyperactivity (although looking back, maybe he was just coming out of an exacerbation at the same time...?), and for my younger son I believe the diet is one of the key elements of our DAN protocol that pulled him out of the strong early signs of autism that we were seeing back then.

 

It seems like you have done your research on this. I have never fully understood the "spectrum" of gluten allergies/sensitivities/celiac etc. But I thought I would give you my 2 cents on what I know.

 

Gluten can create an "opiate" effect on the brain for some children. The way it does this is if the gut is "leaky" it allows the whole gluten protein to absorb into the body without being broken down into individual amino acids. Protein is not supposed to enter the body like that and it goes to the brain and exhibits the opiate effect (as does casein, and in some children soy and corn). This is the very unscientific explanation of the opiate effect! LOL!

 

Then there is the issue of molecular mimicry, where gluten actually causes the body to attack itself. the body creates antibodies to gluten and attacks the gut, creating even more permeability, thus more leaky gut. again, unscientific here!

 

In gluten sensitivity, the person tests positive on an IgG food allergy test. This type of sensitivity would create inflammation.

 

Then there is plain old IgE allergy to wheat (can you be IgE allergic to gluten? I have no idea)

 

Lastly, there is celiac disease...which i don't understand and quite honestly my 2 yo may have this but i would have to take him off the diet to get an accurate result on the celiac test.

 

I know there is probably a lot more to it, like I said I just don't have a full grasp on the whole gluten issue. I just know that the diet has had several positive effects on my boys and our DAN practitioner (Scott Smith) recently told me I shouldn't take them off the diet (even though I am dying to!!).

 

I say give it a try. If you are anything like me you want to maximize their ability to function in this world and if the gluten free diet is going to be a piece of the puzzle, they will thank you for it in the end!

 

If anyone has any corrections to any of this...feel free!!

[dut]

quick mention - udi's isn't good for those with an egg allergy/sensitivity. I think most, if not all, of their things contain eggs.

[philamom]

philamon - yeh, sorry, it's a brand name. See the link below

 

http://udisglutenfree.com/

 

our local food coop carries it but I suspect lots of other places do too... the bread is great as toast not heavy like some gf ones, the muffins are good enough to eat even if you're not gf and (I think it's udi's) they do a really good frozen pizza base, not all crumbly and mushy like some. We also get a corn/quinoa pasta that I think is virtually as good as the normal stuff called Ancient Quinoa Harvest. The real sticking point for us is gravy (the brown british type) and hot dog buns that aren't too yucky. We found some really good free range pork hot dogs with nothing nasty and now need some buns, it almost feels like a healthy meal

 

Glutino do good orea type cookies, bit gritty but taste good. Theres' so much out there.. super pricey, some of it, but tastes good...

 

 

Thank you Dut! I can't see my husband buying into the gritty oreo types either

[dut]

On the opiate-effect side of things, I've read that Lactobacillus rhamnosus is able to break down the proteins in gluten and casein that can create the opiate effect if they get through the gut. The idea is you can use L rhamnosus to break them down and it should help (if gluten sensitivity/intolerance isn't the issue).

 

Not really researched it, mind you, just thought I'd throw it out there...

[Phasmid]

Just my 2 cents on the GFCF diet. We did it for over two years at the onset of my son's first episode. It was hard, but it is actually how all of us should be eating in my opinion. My son regained health soooooo fast on this diet. I lost all my extra weight and never felt so good. It wasn't a diet for my son only- we did it as a family.

 

For the most part, we just ignored the GF "products." Just eat fresh, whole foods. If it's in a box, forget it. This approach made it so much easier! We quit all breads and didn't stress over replacing it. Our staple was brown rice, raw and steamed vegetables, and whole fresh fruits. We did use rice milk, and found some desserts with rice milk such as ice cream.

 

When you get past the hump, it's very easy, and it is NOT a hardship for your child to eat this way. It is so much healthier!!

 

After some years, we have returned to this diet- easing into it. My sons endoscopy/colonscopy and blood work for celiac, ibs, ibd were not definitive, but he does have enough evidence (inflammation as seen by endoscopy) of a sensitivity to gluten.

[sf_mom]

Mom MD: As you know our son is at about the same phase of recovery as your son. Currently, we have no OCD and many TIC free days (might see a mild flair or tic every couple days) but recently we've had 'what appears' to be an intestinal issue crop up or its always been there unnoticed. Throughout this process I've been a huge poop watcher (I have seen every color under the sun) and Dr. K had express his thought of the 'bacteria' ultimately residing in the gut. We had attempted GF/CF originally but ultimately suspended because we were doing so much and I was just happy to get our son to take what he was taking.

 

We have ruled out additional bacteria's as the cause just to be safe and will move forward with scooping to confirm no cysts, polyps or inflammation. Ultimately, I believe we will find similar 'just inflammation' with no cause. Our nutritionist has dealt with this type of thing before and keeps encouraging us to stay the course: hd probiotic, hd b-12, hd bentonite clay and attack it from a gut repair perspective. Like anything, it takes time to heal to gut flora after the extensive damage that has been done from the entire process of illness and recovery (antibiotics). She has stated to me many times the GF/CF diet can help but once the diet is suspended potential problems will re-crop up. SHE KEEPS hounding me about SUCCESSFUL long term health and to focus on repairing the gut flora through PH Balances. Once that occurs (normal PH Balances) the intestines/immunity will start functioning properly again. She has worked with many very sick individuals inclusive of Crohn's and Celiac's.

 

Anyway, we are attacking things from a different perspective and wanted to share what we are doing instead of the GF/CF diet. Roughly, your child's PH balances should be between 5.7 to 6.3 for urine and 6.8 to 7.0 for salvia.... You can purchase the strips for about $12 at iherb. Originally, our son's were way up and we are slowly bringing them into range. He has been doing this program for about 7 months now.

 

P.S. our son has put on five pounds and grown 2 inches (50" - 95%, March 9th on his birthday only 48") since starting this program. His weight at our last IVIG treatment in Jan was 45 pounds.... currently almost 51 pounds and he is now the tallest child in his summer camp!!!! I just know its because he is feeling better and his body is functioning better. AND, our daughter is also on the program has gone from 7% for weight to over the 30% in the same time frame with no IVIG treatments for her.

 

Our nutritionist also states that once the PHs are balanced your natural tendency will be to eat a healthier diet because you crave the right foods. She doesn't even attempt to change diet and she is a nutritionist.

Edited August 7, 2010 by SF Mom