[OBXMom]

Four months ago my son was diagnosed with celiac disease, and although he is the only one on a strict gluten free diet, when our family is together we all show support by only eating what he can eat. During this time, his older sister has had dramatic improvements in her behavior and outlook on life. She has received counseling for years and is on medication for ADHD and anxiety. Now she is happy, polite, and her grades and study habits are the best they have ever been. My husband once looked at her and murmured, "Who are you and what have you done with our child?" because she is so different. My daughter tested negative for celiac disease (blood test) but I am wondering if her behavior and emotional changes might be connected to eating less gluten. Does anyone have any thoughts on this?

[Ursa Major]

You know, the blood tests are NOT very reliable. A negative blood test can't rule out celiac disease. There are people here who had a negative blood test, and a positive biopsy with nearly destroyed villi!

ADHD is one of the typical symptoms for children with celiac disease. Your daughter sounds like she has celiac disease as well. With some kids it shows mainly with gastrointestinal symptoms, and others have behaviour and emotional problems, because the nervous system is attacked more.

I suggest you put your daughter on a strict gluten-free diet as well. And stop her medications, those are powerful drugs and should never be taken when not needed. But don't stop them suddenly, they need to be tapered off very slowly, because they are very addictive.

It is fairly common to find out that others in the family have celiac disease by symptoms disappearing when everybody eats gluten-free out of sympathy for the person with celiac disease, or to limit cross-contamination issues.

And since celiac disease is genetic, they have got if from somebody else. You and your husband may want to try a strict gluten-free diet, too, to see what will happen!

[itchygirl]

As usual, I totally agree with Ursa. Your daughter could be misdiagnosed. The blood work can have false negatives. Have you considered a nice family gene test?

[OBXMom]

Ursa Major, on Mar 24 2008, 07:40 PM, said:

I suggest you put your daughter on a strict gluten-free diet as well.

And since celiac disease is genetic, they have got if from somebody else. You and your husband may want to try a strict gluten-free diet, too, to see what will happen!

Thank you, Ursa, and may I ask another question, since you are obviously well informed? How long would I need to put my daughter on a strict gluten-free diet? She has already told me that there is no way she would do a biopsy (remember the anxiety) and the diet would be a hard sell, too. I might be able to pull it off with some very major bribes, though. I could appeal to her vanity, too, because she has an acne like skin condition that I can't remember the name of right now that is supposed to respond well to a gluten-free diet. Also, I'm sure it would help if her Dad and I did it, too.

Thanks again, Jane

[OBXMom]

itchygirl, on Mar 24 2008, 07:46 PM, said:

As usual, I totally agree with Ursa. Your daughter could be misdiagnosed. The blood work can have false negatives. Have you considered a nice family gene test?

I am hesitant to admit that I have no idea how one goes about a gene test. . .Would I start with my doctor? Or is there some helpful mail in lab? Thanks for the idea.

[kbtoyssni]

OBXMom, on Mar 24 2008, 09:11 PM, said:

Thank you, Ursa, and may I ask another question, since you are obviously well informed? How long would I need to put my daughter on a strict gluten-free diet? She has already told me that there is no way she would do a biopsy (remember the anxiety) and the diet would be a hard sell, too. I might be able to pull it off with some very major bribes, though. I could appeal to her vanity, too, because she has an acne like skin condition that I can't remember the name of right now that is supposed to respond well to a gluten-free diet. Also, I'm sure it would help if her Dad and I did it, too.

With her being on a mostly gluten-free diet at home, it's highly highly unlikely she'd ever test positive via traditional medical testing. Guidelines are 4 servings gluten for 3-6 months minimum to hope for a positive, but as you've seen so much behavioral improvement, she's probably already healed. To get a positive, you have to have a lot of damage and it's certainly not worth putting her through that - it's a great way to make her sick for a few years and set her up for future health problems. As for how long she needs to be one the diet - unfortunately it's forever. She's obviously got some issue with gluten, so she's going to need to do this for the rest of her life if she doesn't want to get sick and run into major health issues and die young. As for how to convince her - maybe a positive genetic test. Enterolab also does stool testing for gluten intolerance that's accurate for up to a year after removing gluten so that may still be an option for you. Maybe scaring her into it - get some of the books that talk about all the complications?

OBXMom, on Mar 24 2008, 09:14 PM, said:

I am hesitant to admit that I have no idea how one goes about a gene test. . .Would I start with my doctor? Or is there some helpful mail in lab? Thanks for the idea.

I know enterolab.com does gene tests.

[Ursa Major]

OBXMom, on Mar 24 2008, 10:11 PM, said:

Thank you, Ursa, and may I ask another question, since you are obviously well informed? How long would I need to put my daughter on a strict gluten-free diet? She has already told me that there is no way she would do a biopsy (remember the anxiety) and the diet would be a hard sell, too. I might be able to pull it off with some very major bribes, though. I could appeal to her vanity, too, because she has an acne like skin condition that I can't remember the name of right now that is supposed to respond well to a gluten-free diet. Also, I'm sure it would help if her Dad and I did it, too.

Thanks again, Jane

Jane, is her skin condition by any chance dermatitis herpetiformis? Because if that is what she has, and she has been positively diagnosed with it, it is an AUTOMATIC firm celiac disease diagnosis as well. Celiac disease is the ONLY thing that causes DH, and the gluten-free diet is the only cure for it (but not all people with celiac disease have DH).

[Mom23boys]

OBXMom, on Mar 24 2008, 03:11 PM, said:

My daughter tested negative for celiac disease (blood test) but I am wondering if her behavior and emotional changes might be connected to eating less gluten. Does anyone have any thoughts on this?

Our nutritionist places ADD, ADHD and a few other issues on the autism spectrum. While they are not full autism, they have many similar beginnings and issues. So I would say that YES a gluten-free/G lite diet would help.

Our nutritionist suggested this book to us -- Gut and Psychology Syndrome by Dr Campbell-McBride. It explains the inclusion of these issues on the spectrum, their relation and so on.

[OBXMom]

Boy, do I wish I had discovered all of you 4 months ago. (Actually maybe I did but I felt too flustered to take the time to read anything . . .) Thank you all for the thoughts. I am definitely going to order the book, it is a subject I need to learn more about. My daughter has keratosis pilaris, not DH, at least her pediatrician seems pretty sure. I will do the enterolab tests, because it seems easier to enforce such a life changing decision as a gluten free diet with a little back up. If it turns up negative I will have a bunch of other questions, such as will she need to be totally gluten-free, or will a minimized gluten diet suffice, but I'll cross that bridge when we come to it. . .
-Jane

[Ursa Major]

I looked at pictures of keratosis pilaris, and they look similar to DH. Many people get misdiagnosed with other skin conditions, when they really have DH. You may want to get a skin biopsy done on her, because if it ends up being positive, she will be diagnosed with celiac disease right there.

[OBXMom]

Ursa Major, on Mar 25 2008, 09:24 PM, said:

I looked at pictures of keratosis pilaris, and they look similar to DH. Many people get misdiagnosed with other skin conditions, when they really have DH. You may want to get a skin biopsy done on her, because if it ends up being positive, she will be diagnosed with celiac disease right there.

That's a good idea - and my insurance would pay for a biopsy, but not the enterolab, too. BTW, your picture with your adorable little ones is very sweet.

[itchygirl]

keratosis pilaris was one of my many, many incorrect rash diagnoses, along with lichen planus and shingles.

[rock on!]

OBXMom, on Mar 25 2008, 05:59 PM, said:

Boy, do I wish I had discovered all of you 4 months ago. (Actually maybe I did but I felt too flustered to take the time to read anything . . .) Thank you all for the thoughts. I am definitely going to order the book, it is a subject I need to learn more about. My daughter has keratosis pilaris, not DH, at least her pediatrician seems pretty sure. I will do the enterolab tests, because it seems easier to enforce such a life changing decision as a gluten free diet with a little back up. If it turns up negative I will have a bunch of other questions, such as will she need to be totally gluten-free, or will a minimized gluten diet suffice, but I'll cross that bridge when we come to it. . .
-Jane

Just wanted to chime in here that if you search for keratosis pilaris in this forum you will find some people talking about how theirs has cleared up quite a bit, if not totally, by being gluten-free. I remember reading those entries because my niece has keratosis pilaris & i tried to convince her that her love of bread & bagels (esp. wheat bagels!) could be the culprit, but she really didn't take to the idea. Perhaps, though, those entries could be a good incentive for your daughter to really give the gluten-free diet a fair chance...once she feels better & her skin clears up, she may not want to go back to eating the things that caused her afflictions in the first place.

Just my 2 cents!

[OBXMom]

rock on!, on Mar 30 2008, 08:51 PM, said:

Just wanted to chime in here that if you search for keratosis pilaris in this forum you will find some people talking about how theirs has cleared up quite a bit, if not totally, by being gluten-free. I remember reading those entries because my niece has keratosis pilaris & i tried to convince her that her love of bread & bagels (esp. wheat bagels!) could be the culprit, but she really didn't take to the idea. Perhaps, though, those entries could be a good incentive for your daughter to really give the gluten-free diet a fair chance...once she feels better & her skin clears up, she may not want to go back to eating the things that caused her afflictions in the first place.

Just my 2 cents!

[OBXMom]

OBXMom, on Apr 1 2008, 08:05 AM, said:

Thank you, that is an excellent thought. You know, someone mentioned getting her bumps biopsied, and I looked more closely and realized they have gotten so much better it might be hard to find one active enough to biopsy. And before we went gluten-free at home, her face was just terrible. Worse than the worst teenage boy I'd ever seen. She still has many little bumps, but not the mass of almost boil-type bumps. I will have to print some of the posts about others who have shown big improvements to help her connect the dots a bit. Hope your niece comes around, too.
- Jane