Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Autism Rising
0

43 posts in this topic

lucky97 do you say 1 in 110 people have celiac "come on" "I mean really", you may work in special ed, but you are not a specialist in ASD (obviously) so how would you know what is and is not Austism - or you honestly saying that you think you know better than the specialist that diagnosed those people?? :rolleyes:

0

Share this post


Link to post
Share on other sites


Ads by Google:

lucky97 do you say 1 in 110 people have celiac "come on" "I mean really", you may work in special ed, but you are not a specialist in ASD (obviously) so how would you know what is and is not Austism - or you honestly saying that you think you know better than the specialist that diagnosed those people?? :rolleyes:

I think that in some instances it could be misdiagnosed if the specialist did not have the whole story. I know someone who was diagnosed with autism because he was antisocial, aggressive at times and just didn't have the skills that a child his age should have. The specialist that diagnosed him and pumped him full of meds is unaware that this boy is like he is because his mother can't stand him and he is just angry. So I think that without all the information misdiagnosis can be made. Of course that is just one case, but it is sad because this boy is on a bunch of meds because he is autistic when he really doesn't need to be.

0

Share this post


Link to post
Share on other sites

Something else to take into account: specialists don't always act or diagnose like specialists should... Look at the trouble people go through with celiac...

0

Share this post


Link to post
Share on other sites

I think there may be a country to country thing here, you can't just diagnose autism here, you have go to a number of different specialists here, its actually quite a long and tedious process. But still - at the end of the day, special Ed teacher is not the same as a specialist, and if going though this process has taught me anything then yes - ASD is on a scale, no to people are alike, they all have strengths and weaknesses just like anyone else. It can be mild or severe and every shade in between. And with early intervention - a child who was diagnosed with quite bad ASD, given the right services can be almost completely normal when they are older. So that whole Scoffing over kids with ASD etc, just proves to me that lucky -doesn't know anything at all about ASD.

Having said that - there are of course misdiagnoses, just as there are with everything in life. Are you guys honestly saying that you expect 100% diagnosis rate? Because science just isn't there yet.

0

Share this post


Link to post
Share on other sites

I totally agree about the benefits of diagnosis!! It can change lives.

It's not so much the misdiagnosis rate but the way the misdiagnosis is handled for me: denial from the specialists, closed minded thinking, little to no collaboration, etc. Of course this isn't the case with all.

0

Share this post


Link to post
Share on other sites




Oh sure, I get you, my son (when suffering severe malabsorption) was diagnosed with toddler diarrhea. He then became severely aneamic to the point where he couldn't breathe properly, couldn't stand up or play and developed a heart murmur. All the while I was telling the Paed about our family history of coelaic, she did the blood tests which were negative and then tried to tell me that was the gold standard in testing. :rolleyes: Boy, don't they absolutely despise when a lowly citizen knows more about something medical than they do!

0

Share this post


Link to post
Share on other sites

Found this article this morning. How significant is it when there were only a thousand or so in the study?

http://www.ottawacitizen.com/health/Obese+women+more+likely+have+children+with+autism+study/6428724/story.html

This is an article from Jan. 2012.

http://www.ottawacitizen.com/health/Definition+autism+about+change/6043448/story.html

0

Share this post


Link to post
Share on other sites

Yes they do!! I am so sorry about your son, I assume he is doing better now?

0

Share this post


Link to post
Share on other sites

Found this article this morning. How significant is it when there were only a thousand or so in the study?

http://www.ottawacitizen.com/health/Obese+women+more+likely+have+children+with+autism+study/6428724/story.html

This is an article from Jan. 2012.

http://www.ottawacitizen.com/health/Definition+autism+about+change/6043448/story.html

I found the article that said a Mother's blood sugar could affect the baby's brain especially interesting. I wouldn't have guessed that connection.

0

Share this post


Link to post
Share on other sites

I think there may be a country to country thing here, you can't just diagnose autism here, you have go to a number of different specialists here, its actually quite a long and tedious process. But still - at the end of the day, special Ed teacher is not the same as a specialist, and if going though this process has taught me anything then yes - ASD is on a scale, no to people are alike, they all have strengths and weaknesses just like anyone else. It can be mild or severe and every shade in between. And with early intervention - a child who was diagnosed with quite bad ASD, given the right services can be almost completely normal when they are older. So that whole Scoffing over kids with ASD etc, just proves to me that lucky -doesn't know anything at all about ASD.

Having said that - there are of course misdiagnoses, just as there are with everything in life. Are you guys honestly saying that you expect 100% diagnosis rate? Because science just isn't there yet.

From my experience when I walked through the process with my sister last summer in the USA, we only went to one neurologist and got the diagnosis. However, I think that because there are so many different specialists who can diagnosis, there is no way they can all share the same views and be kept up to date on the changes and new information. I have various students who have a diagnosis and they all have their diagnosis from different types of doctors: psychiatrist, psychologist, or neurologist. If doctors GI docs can't get celiac right, how can all these different doctors keep ASD straight?!

Just my opinion...

0

Share this post


Link to post
Share on other sites

Found this article this morning. How significant is it when there were only a thousand or so in the study?

http://www.ottawacitizen.com/health/Obese+women+more+likely+have+children+with+autism+study/6428724/story.html

This is an article from Jan. 2012.

http://www.ottawacitizen.com/health/Definition+autism+about+change/6043448/story.html

Hmm, I know a few people with Autistic children (as you do when you start going through the process) and all the mothers are normal or below average weight wise. I was very thin when pregnant as was my SIL. I did read somewhere that twins have a 30 times higher rate of Autism than singletons - which is interesting.

0

Share this post


Link to post
Share on other sites

Hmm, I know a few people with Autistic children (as you do when you start going through the process) and all the mothers are normal or below average weight wise. I was very thin when pregnant as was my SIL. I did read somewhere that twins have a 30 times higher rate of Autism than singletons - which is interesting.

I thought the same thing. My sister is very thin!

0

Share this post


Link to post
Share on other sites

My husband and I just watched a phenomenal movie yesterday called "Temple Grandin" about the life of an autistic woman who went on to do amazing things in her life, and even those without one. I highly recommend this inspiring film! It will encourage anyone with an autistic person in their life!

Temple was born in 1947, a time when autism was still blamed on a "cold, distant, un-affectionate mother". She holds a Ph.D now, and teaches in the animal science department at Colorado State University, has written many books on the experience of autism from the "inside" as well as helping those who live with autistic people. Temple also presents at autism seminars.

Here's the Wiki about her, here is her own website.

There are several videos on YouTube of her speaking on autism, all good viewing.

I know there is still much uncertainty about causes, but it is so heartening to know that many people on the autism spectrum can thrive, function, and contribute great things to the world. I speak as one who has a sibling with Asperger's. His life has been so hard because of the difficulties that go with AS; he is over 60 now, born before the "spectrum" was understood as it is now {sigh}.

0

Share this post


Link to post
Share on other sites

Couple random thoughts ...

I absolutely believe that autism is on the rise, and that it's not just a case of "misdiagnosis." My son is autistic - he was diagnosed at 18 months. We suspected at 15 months. He had SO many of the characteristics that we just "knew". But when we talked to our pediatrician about our concerns, he completely blew us off. Told us boys talk later, let's wait and see, etc. etc. etc. I'm so glad that we didn't listen to him. I have talked to other parents and my experience was not at all uncommon - for every child that is diagnosed, there are so many who are autistic but are undiagnosed.

We also had to go through a long process to get a diagnosis. We filled out extensive questionnaires on his behavior at home and saw a developmental pediatrician who spent several hours talking to us and observing Will before giving us a diagnosis. I'm sure there are some kids out there who are getting cursory examinations and coming out with a diagnosis of autism, but that was not our experience at all.

I think my last point is that to me it almost doesn't matter. 1 in 88, 1 out of 100 ... the point is that there are a lot of people out there with autism and we as a society haven't figured out how to handle it. We were fortunate to be able to get intensive early intervention and I'm not exaggerating when I say that it gave me my son. Prior to therapy, he had no words not even mama. Literally just walked around the house carrying the dog leashes and spinning their food bowls over and over. Very rarely interacted with us or even looked at us, never smiled. Now at age 4 he would be considered "high functioning". His language is catching up to age level, he interacts with us all the time and is starting to play with peers. He's the happiest kid I know. Even though he has a lot of issues, particularly socially, he has come so far it's incredible. But we had to spend our retirement, fight with insurance (many insurance companies don't even cover autism, which is beyond my understanding how they can deny paying for a neurological condition), and borrow from family to make it happen. We put off me going back to work so that I can take charge of his treatment. But not everyone can do that. I really wish that there would be an equal focus on how we can get these kids the help they need b/c it really does make a huge difference in the long run.

Ok stepping off my soapbox now!

0

Share this post


Link to post
Share on other sites

Sometimes I wonder if some of these 'diagnosis' that they are labeling children with are really disabilities at all. There is no doubt that those with the most serious forms of autism need to be given all the help possible to achieve a more normal and productive life. But autism has many spectrums and some of the more mild forms, like Aspergers, produce adults that are very productive and very intelligent and high achievers. They may lack a bit in social areas, have a bit more difficulty making friends and would have worn the label of shy nerd in past years. People have differences and that isn't always something that needs a label or intervention. I have to wonder how many of our past scientists and inventor etc. would have been labeled in the past. And the impact those labels and interventions would have had on their discoveries.

As a parent of two daughters on the "Austim Spectrum" I will say this: I agree that some forms of the spectrum disorders are misdiagnosed as with any disorder. I also agree any serious forms should be given their full attention as required. I must say that it truly is impossible to understand something unless you have walked it and I learn that with every day I live. That said, my daughters, whom you would not know had full blown childhood Autism resembled the behavior of Helen Keller at best when they were young. You might give them a diagnosis of high functioning "Asperger's" today, given that we dedicated every waking moment and resource to their education and therapies. So diagnoses can be quite relative and subjective. They are very important for obtaining services for children and people with these very real disabilities. Just as they are for us with Celiac's in understanding and becoming healthy and whole again. I guess what I'm trying to say is it took a world to get these two girls to where they are now, people give up their lives, unseen, unheard, not just a diagnosis or not. I hope you don't mind my sharing... thanks :)

0

Share this post


Link to post
Share on other sites

...I really wish that there would be an equal focus on how we can get these kids the help they need b/c it really does make a huge difference in the long run.

Beautifully said, Kelleybean. It seems almost criminal to hold back what these kids need when they can do so much with the right environment and the right kind of help. That sticks with me from the movie I mentioned, and it is the name of a book..."Different, not less".

I am so glad you were able to do what you did for your son and that he is doing so well!

0

Share this post


Link to post
Share on other sites

As a parent of two daughters on the "Austim Spectrum" I will say this: I agree that some forms of the spectrum disorders are misdiagnosed as with any disorder. I also agree any serious forms should be given their full attention as required. I must say that it truly is impossible to understand something unless you have walked it and I learn that with every day I live. That said, my daughters, whom you would not know had full blown childhood Autism resembled the behavior of Helen Keller at best when they were young. You might give them a diagnosis of high functioning "Asperger's" today, given that we dedicated every waking moment and resource to their education and therapies. So diagnoses can be quite relative and subjective. They are very important for obtaining services for children and people with these very real disabilities. Just as they are for us with Celiac's in understanding and becoming healthy and whole again. I guess what I'm trying to say is it took a world to get these two girls to where they are now, people give up their lives, unseen, unheard, not just a diagnosis or not. I hope you don't mind my sharing... thanks :)

I am glad your children were able to get the help they needed and are now doing much better. I have walked in your shoes and still do so daily. I have never said that folks who are having difficulties should not get help or treatment. But I do not think it should be a diagnosis given by one doctor who only sees the kids a couple times in the instances of children who are not severely impacted. All avenues should be explored before a diagnosis is given but that doesn't mean that treatment and therapies to make life easier shouldn't be done if the person is having problems that are interfering with their lives and learning.

Just looking at the high numbers of us celiacs who were labeled as depressed, hypochondriacs and IBS sufferers and then the doctors stopped looking for the real cause of our issues. It would be a shame if some of the children now being labeled as Aspies in reality had other issues going on but don't recieve help for them because their ped diagnoses Autism without checking to see if other things are actually impacting their function.

1

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
      104,145
    • Total Posts
      919,571
  • Topics

  • Posts

    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,177
    • Most Online
      1,763

    Newest Member
    lolobaggins
    Joined