Dq1

[lonewolf]

I posted a while ago about my son having testing done through Enterolab and coming out negative on the gluten sensitivity stool test (score was 9 and 10 and over is considered positive), but showing a double copy of DQ1. I have been reading some posts that indicate that DQ1 is associated with neurological symptoms and gluten sensitivity.

My son has had eye twitching (not Tourrette's) and emotional outbursts, periods of extreme negativity and lack of ability to concentrate. He has minor digestive issues, mostly gas, constipation and occasionally D. When he's off gluten, he's much better in all aspects. Obviously, I'm trying to keep him gluten-free, but it's hard when he's 11 and can cheat without me knowing. He isn't "on board" yet. He is intelligent though, and I think that if I can get enough information and show it to him he might decide for himself that he wants to go gluten-free. He says that the test came back negative, so that shows he doesn't have a problem. He understands that the gene testing shows a pre-disposition, but has only agreed to go "Gluten lite", which is at least a step in the right direction.

So, I have some questions, since I am woefully ignorant of the whole gene thing.

1. If his main symptoms are neurological/emotional, would testing that shows damage in the digestive tract necessarily come back positive?

2. Where can I go to find research on DQ1 that can be understood by those of us who aren't familiar with all the scientific stuff?

3. Could DQ1 be responsible for things like bi-polar and just plain "shakiness"?

I ask this because my dad was bi-polar, was very unsteady on his feet, was going blind and just plain horribly unhealthy when he died (suicide) at age 62. The gene had to have come from somewhere and my mom is still extremely healthy at age 78. (Since my son has a double copy, I know he got one from my husband too - his family all has problems, but they don't want to even be told that it might be something they're eating.)

4. If someone is prone to something like bi-polar, could avoiding gluten help them avoid developing problems?

Thanks to anyone who has any insight.

[celiacgirls]

I can only answer based on my own experience. I don't know my daughters' genes yet but I am DQ (1,8) and my husband is DQ (2, 7).

One of my daughters looks bipolar when she eats anything with milk. Her behaviour has improved tremendously since going gluten-free/CF. We did see a change when she went gluten-free but have since discovered milk is what really makes her angry. Before we discovered her food intolerances, she was diagnosed with ODD and depression. I had her evaluated for a second opinion for bipolar and that doctor suggested Intermittent Explosive Disorder. That's how bad it was. Now, she is very easy-going and kind. A pleasure to be around. But if she has even a trace of milk, she is immediately hostile and extremely difficult. Her score for casein was around 20 and for gluten, it was 285.5. If I didn't know to look at her food, when she goes into one of those moods, it would look like nothing set her off. It seems to me, that someone with these issues might be dx'ed bipolar.

She is almost 11 and is pretty much on board, I think. I thought she was totally on board until I recently saw her at school with a Gogurt in her hand. I told her that if I found out she was cheating or I saw that behaviour come back, that she would either have to stay home or I would go with her everywhere she went outside of school. Now I am also making sure she has something really good for a snack so she isn't tempted. In her case, I think it will be easy to tell if she has cheated and it has an effect on the whole family when she acts that way so I feel that I need to take a hard line about it. Hopefully, the embarrassment of having her mom along on all the field trips is enough of a deterrent.

[Nancym]

You need Open Original Shared Link tons of stuff in there about neurological aspects of gluten sensitivity. One Dr. finds brain lesions that have gluten antibodies and no evidence of intestinal issues. There are other ways gluten attacks organs, such as DH (of the skin). You might have aboslutely no evidence in the intestines.

So yes, your reaction is correct. Your son should be off gluten. Good luck!

[CarlaB]

With an 11 year old, it might be as simple as showing him where on the Enterolab site it says that the cutoff is approximately where they see results on the gluten-free diet, but that someone scoring close to 10 can still have symptoms and need to be gluten-free.

You can Google DQ1 and find lots of info. The gluten file already mentioned is good as well.

[Guest Kathy Ann]

I am DQ1. My gastrointestinal symptoms as an adult have been few. But my neurological ones have been huge. I can also see it down the line in some of my ancestry. Since the brain takes longer to heal than most other areas of the body, it is also taking a long time for me to notice any improvement gluten free. I'm still hopeful. Children will likely respond much quicker, as you have shared and observed.

[lonewolf]

Thanks for the responses. I'll look up the Gluten Files. He is already dairy-free (since 18 months) and is struggling with being even more different. On one hand, he understands, but on the other hand, he thinks it really doesn't affect him that much and that he can eat a little bit. I think he's starting to get it a little bit though - last time he was at my MIL's, she gave him some cinnamon bread (she "forgot") and his behavior that night was horrid. He was talking about committing suicide over something ridiculously small. I asked if he had eaten any wheat or gluten. He said no, but my younger son said that he did. My MIL confirmed. That was probably the first time he realized that we could all tell when he'd eaten wheat just by his behavior.

[Nevadan]

  lonewolf said:

1. If his main symptoms are neurological/emotional, would testing that shows damage in the digestive tract necessarily come back positive?

2. Where can I go to find research on DQ1 that can be understood by those of us who aren't familiar with all the scientific stuff?

3. Could DQ1 be responsible for things like bi-polar and just plain "shakiness"?

I ask this because my dad was bi-polar, was very unsteady on his feet, was going blind and just plain horribly unhealthy when he died (suicide) at age 62. The gene had to have come from somewhere and my mom is still extremely healthy at age 78. (Since my son has a double copy, I know he got one from my husband too - his family all has problems, but they don't want to even be told that it might be something they're eating.)

4. If someone is prone to something like bi-polar, could avoiding gluten help them avoid developing problems?

Thanks to anyone who has any insight.

I am double DQ1 and gluten-free/CF for about 1 1/2 yrs. Most of my symptoms were neurological. They are responding however slowly to the diet. Re your question #1, I think there is considerable evidence that the gastro-intestinal effects are but one subset of the more general gluten intolerance, so typical celiac tests may not show positive even though one has neurological symptoms.

The book "Dangerous Grains" might be worth reading. It's only about $10 from Amazon and covers the non-gastro effects of gluten pretty well.

I've no experience with bi-polar but have heard that gluten-free/CF has had positive effects for several autistic kidswhich may be related.

I am a firm believer that the best test for most folks is a dietary response test. I realize it's particularly difficult for the neurological symptoms since they respond so slowly and do require resonable patience.

I'm just not sure there is a creditable test for all the possible effects of gluten sensitivity at this time, labs like Enterolab not withstanding.

[LKelly8]

I found this on Open Original Shared Link.

Nothing in Open Original Shared Link. (That I could find, looking quickly)

There's a link between DQ1, Multiple Sclerosis and Bipolar;

From Open Original Shared Link