• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Non-celiac Sibling Behavior Improvements
0

17 posts in this topic

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?

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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!

0

Share this post


Link to post
Share on other sites

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? :)

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites
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).

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites
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! ;)

0

Share this post


Link to post
Share on other sites
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! ;)

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites

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

Shannon

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,439
    • Total Posts
      930,579
  • Member Statistics

    • Total Members
      63,865
    • Most Online
      3,093

    Newest Member
    vprovenzatn
    Joined
  • Popular Now

  • Topics

  • Posts

    • Listen to these wise people!  Believe me, I like exercising.  I am a very fit older lady!  But when sick, glutened, recovering from surgery or injury, I skip working out.  I stayed off my beloved bike for almost a year because of vertebrae fractures.  Instead I focused on first healing the fractures and then building up slowly.   It is hard to be patient! Listen to your body!  Save your excess energy for studying.  😊
    • Well guys, my blood test came back negative for celiac disease. Total IGA =161 (normal), IGA-TTG was < 1. I'm really quite surprised. My GI appointment was bumped up to 5/10 at least, so I won't wait til June to see them. My quest to find out where my lost 40 lbs went continues. Thank you all for your kidness and expertise while I waited for my answer. I can come back and let you know what they found out, in either case. Thank you very much again. All of you stay well!
    • Hi,  I am very sorry for posting back again. I have visited the consultant today and he said that the TTG is mildly elevated - does this mean it is a positive? The consultant said that as I tested negative for Celiac on three previous times, he thinks something else could be going on so came home worrying even more. The consultant has organised an endoscopy and requested it as a fast track and requested an urgent CT scan.  I was wondering if there is anything that I can do to best prepare for the endoscopy? Does my gluten amount seem to be enough with the 2 slices of bread on a morning? Is it also possible for the TTG to have become mildly elevated because of other conditions?  He mentioned to me that the colonoscopy didn't work really because of how it was clogged up and that the bowel prep didn't work.  I have also noticed that I am experiencing major constipation as well - I will have diarrhoea then it will fluctuate to constipation as well and have an awful gurgling sensation as soon as I eat anything like bread.  Thank you again for everyone on here. It is a wonderful forum. 
    • Hey y'all so I realized my allergy medicine probably affected the results of the IgE allergy blood tests. I tried to start eating gluten again so that I would be able to get the full blood panel from my GI but I can't do it. I ate two meals with gluten yesterday and ended up spending half the night in the bathroom throwing up because my body couldn't digest any of it. Do you know if there are any other ways a GI could diagnose possible celiac without me having to consume it?
    • Hi guys! I'm newly diagnosed (just over a month ago) and before my diagnosis booked a trip to Nepal and Tibet - both of which are bound to be super NOT gluten free and likely not gluten aware.  I know when travelling elsewhere it is recommended to get fresh produce etc from the grocery store and bring your own food. However, grocery store shopping will be next to impossible (in Tibet especially - I will be on a small tour driving through some very remote places!) and though Nepal may be slightly easier, I think it will be a challenge. I am fine to bring my own staples but note this trip is backpacking style and I will have barely enough room for (non-food) necessities so I unfortunately cannot bring an extra suitcase filled with food. I also doubt I will have access to microwaves for the Tibet portion of the trip. Can anyone offer the following advice: - have any of you traveled to these places or somewhere similar and how did you manage? - with limited space what would be the best staples to bring/what will stretch the farthest but take up the least space (I'm thinking a big bag of gluten-free oats? should be easy to get boiling water in most places) - CC issue is gonna be huge but what do you think is the safest bet to eat in this part of the world? Should I just live off steamed rice for the two weeks and take lots of vitamins and hope I can survive with the lack of nutrients? I'll try and add safe fruit and veg at every chance I get obviously.. (Note: fresh veggies are very scarce in Tibet - main diet it dumplings/momos, rice and yak meat - I assume the meat has a high chance of being marinated in unsafe soy sauce) - are there any pills/supplements/natural remedies to help me cope if I do get glutened (which is likely)? I heard of GliadinX - anyone have success with this? Also thinking maybe this would be a good time to invest in a Nima? Thank you so much! Any advice will be really helpful! (Also, please no comments on how I should cancel the trip, how getting glutened once will re-damage my intestines, how I should pack less clothes to fit more safe food etc! I know there is no beating Celiac and all the crappy consequences to eating gluten (I've been addicted to this website since getting diagnosed and have learned so much from you guys!) and that this is probably the worst vacation for a celiac lol. But this trip has been a life dream of mine and we actually booked it in lieu of having a wedding so for this reason I can't (won't) cancel it  I know I'm taking a huge risk and many would disagree with my decision but please positive comments on how I can be best prepared and reduce the risk/reduce the symptoms will be really appreciated!) Thanks Jes  
  • Upcoming Events