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Non-celiac Sibling Behavior Improvements


OBXMom

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OBXMom Explorer

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?


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Ursa Major Collaborator

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 Newbie

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 Explorer
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 Explorer
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 Contributor
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?

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 Collaborator
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).


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Mom23boys Contributor
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 Explorer

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 Collaborator

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 Explorer
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 Newbie

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

rock on Apprentice
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 Explorer
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 Explorer
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

  • 2 weeks later...
shanluts Apprentice

I have celiac disease and and my KP went away once gluten-free. Thought I would share.

Shannon

  • 1 month later...
geokozmo Rookie
Four months ago my son was diagnosed with celiac disease, /and / his older sister has had dramatic improvements in her behavior and outlook on life. She has received counseling for years... now she is happy, polite, and her grades and study habits are the best they have ever been. Does anyone have any thoughts on this?

Yes, I asked around in an addict community and I found a few people who found that glutenfree diet dimin9ished their cravings (and underlying depresion)., I definitely think that there should be a real test (with statistical sample, hundreds of non-glutensensitive addicts). The question is that since most dovtors do not know this gluten effect (and do not know adictions), it is not easy to find someone to do this rsearch.

Geokozmo

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    • Mari
      I havesome of the replies to your post(which by the way is a gread piece of writing) and think that it will take lots of time and reading to decide what you are going to do. I would like to give you some practical suggestions. Your anxieties and OCD are a perfectly natural response when your body is sending signals that you have physical problems. The body does not use words it uses biochemistry and electric interactions. Celiac disease is not a killer disease so you are not going to die in the near future if you get glutened.  It can be a disabling problem unless you stay gluten free. For OCD attacks I have used spearmint or peppermint teas to relax. I also sitorlay down , relax as much as possible and review what I have been eating for the last few days and can usually identify that I have been eating too much of something and not enough of other foods that would balance my body. My body may have become too acid when it needs to be slightly alkaline. For me this means eating more vegetables and less starches and proteins. There are some websites that will list acid forming foods and alkaline forming food and many foods that are in between. Just admit that you are anxious about gluten being present in foods and anything that is used to prepare foods or even in your environment. When you eat anything that makes you anxious take a capsule of an anti-gliadin enzyme. I use a brand called GliadinX. It works in the stomach and will break down small amounts of gluten. Look up online the amount of plain water your body height and weight needs every day. Two years ago I was 5' 4" and weighed 100 lbs and needed 48 oz. every day.  Even if you can't drink the full amount if you just drink more water you will notice some improvement in your digestive system.  That's enough for tonight and it's way past my bedtime. Don't hesitate to ask more question or ask for more information.       
    • Scott Adams
      Canker sores can definitely be frustrating, especially when you're already managing a strict gluten-free lifestyle and have been diagnosed with celiac disease for so long. While these painful mouth ulcers aren’t exclusive to celiac disease, they can be linked to nutritional deficiencies—particularly of iron, folate, or vitamin B12 (as @trents mentioned )—which are common in people with celiac, even those who are very careful with their diet. Ongoing fatigue and aches might also suggest that your body isn’t fully absorbing nutrients or that there’s some underlying inflammation. It could be helpful to get bloodwork done to check for these deficiencies, and possibly even a full nutritional panel. Sometimes, new sensitivities or hidden sources of gluten or additives like sodium lauryl sulfate (common in toothpaste) can trigger symptoms like canker sores too. Since your reactions are so severe and you're highly vigilant, it might also be worth considering whether any other autoimmune conditions could be involved, as they can develop over time and overlap with celiac. Consulting with your doctor or a celiac-informed dietitian may help pinpoint the cause and bring relief.
    • knitty kitty
      @Dora77, You shouldn't worry about getting glutened through your skin.  You would have to touch a gluten infested doorknob and then put your hand in your mouth.   I'd be more concerned with your mom's heating up gluten bread in the oven and boiling gluten noodles.  These methods cause particles of gluten to become airborne which would then enter your nose and be swallowed, going into your digestive tract.  I have to avoid the bakery aisle at the grocery store for this reason.  An M95 mask helps. If you get nutritional deficiencies corrected, your immune system will calm down and be less reactive to gluten expose.  Vitamin D helps regulate the immune system.  Thiamine and Niacin help make digestive enzymes which would help digest any accidental gluten exposure.  Thiamine helps Mast cells not to release histamine, an inflammatory agent released as part of the reaction to gluten, and also a neurotransmitter that causes alertness and anxiety, and the flight or fight response.  Pyridoxine will help improve the OCD.  Remember your brain is part of the body.  Vitamin deficiencies affect your brain and mental health as well as the rest of your body.  
    • Jacki Espo
      I do not have evidence other than anecdotal but I am certain when I have gotten these it's the result of eating gluten (back when I did).  I don't get them now that I don't eat gluten. 
    • Dora77
      What really bothers me is if worrying about getting cc‘d from touching the same door knob as others touched is valid. Seems like an extremely unlikely way to get glutened but i read people saying that.    If thats true then theres realistically zero chance i dont get cc‘d in a non gluten-free household unless i Cook Everything myself and wash my hands multiple times in between and store all of my stuff separately
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