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Still Angry Sometimes After 2 Years


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#46 Ollie's Mom

 
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Posted 28 November 2011 - 06:31 PM

I do believe that following a gluten-free diet can cause a sensitivity to gluten.


Following a gluten-free diet would only exacerbate sensitivity to gluten in those who have a gluten sensitivity.

Would you say the same thing about someone who follows a "strawberry free" diet? You don't eat strawberries all year until they are in season... yep, that'll possibly cause a strawberry sensitivity. Or replace strawberry with lettuce. Or carrots... or pumpkin... Does that make logical sense? Hmmmm... no, I don't think so. I've never heard of a lettuce sensitivity.

And while your analogy is like comparing apple and oranges in many respects (and for the record, it is Asperger's Syndrome, not disease - and note the correct spelling - every effort at making it sound less like like a sandwich made of rear ends is a plus,) the Asperger's community is currently fighting against the inclusion of Asperger's Syndrome into the manual as simply "Autism."


I have Asperger's.

The issue is not simply that the DMS-V is eliminating the term "Asperger's" and lumping it under the category of "autism." The line between a high functioning autistic (HFA) and someone with Asperger's is blurred to say the least (much like the line between Celiac and gluten intolerance). What many people fear is that those with Asperger's will no longer be considered to be on the autism spectrum at all, eliminating access to services that some of them desperately need. All this because a doctor has determined that no, they can't be on the autism spectrum because they... have a job / have a spouse / have a degree / can read and write / have such and such IQ / etc etc.

I have Asperger's and I am autistic. No one I have met who has Asperger's is fighting the change in the DSM because they don't want to be labelled autistic - they all know and accept that they are autistic.

Your view of the world is much too black and white.
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#47 Katrala

 
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Posted 28 November 2011 - 06:40 PM

The line is most definitely blurred, but to not distinguish Asperger's has serious implications in education, among other factors.

To avoid getting too off topic, I'd be happy to discuss this via private message. Both my father and my son have Asperger's.
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Positive Celiac (Blood & Biopsy) - April 2011
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#48 sandsurfgirl

 
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Posted 28 November 2011 - 06:40 PM

I do believe that following a gluten-free diet can cause a sensitivity to gluten.


You're joking right? Please tell me the science behind that statement. I'd love to hear it.

There is zero rationale for that. In the case of a food allergy, eating the same food over and over again can cause an allergy but this is not allergy, not histamine response and you aren't talking about eating the same food over and over again. So I don't see how there's any way your statement makes any sense.


I love how you're correcting an person with Asperger's about their own condition. I think you're the one who corrected my grammar incorrectly on another thread.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#49 Lisa

 
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Posted 28 November 2011 - 06:44 PM

Intellectual discussions are welcome and productive. Let's keep personal out of it, please. :D

And here is reminder of the Board Rules:

Any claims you make here should be based on legitimate sources, or be expressed as opinion, experience, or inquiry. You should remain on topic and be consistent with the theme of the forum as a whole.
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Lisa

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#50 Katrala

 
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Posted 28 November 2011 - 06:48 PM

You're joking right? Please tell me the science behind that statement. I'd love to hear it.


No, I'm not joking.

It's not uncommon for some people to experience a heightened sensitivity to gluten the longer they are on the gluten-free diet.

I love how you're correcting an person with Asperger's about their own condition.


I'm not correcting a person with Asperger's regarding anything, unless you're referring to the spelling of Asperger's Syndrome.

I think you're the one who corrected my grammar incorrectly on another thread.


I have no idea what you're talking about.
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#51 Ollie's Mom

 
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Posted 28 November 2011 - 06:57 PM

The line is most definitely blurred, but to not distinguish Asperger's has serious implications in education, among other factors.

To avoid getting too off topic, I'd be happy to discuss this via private message. Both my father and my son have Asperger's.


We could continue via PM if you'd like, but I find that open discussions are usually better. Even more so if there are others out there lurking who are looking for this type of information.

For me, it doesn't matter if someone labels me HFA or an "aspie" - either way, it is a label, and either way there will be those who think "less" of me because of it. And I have had doctors tell me that there is no way I can have Asperger's because I have a job, a husband, a degree, etc., and I know that they are wrong (these are GP's who don't specialize in this stuff anyway, much like how they don't specialize in gluten intolerance / celiac...), but I know that they are wrong.

Luckily for me, I was not diagnosed until after I had exited the school system (it was a rough time, I'll admit...), but it allowed me to learn how to survive in a world of neurotypicals (NT's). I can't specifically comment as to the implications of being labelled "HFA" vs. "aspie" when it comes to schooling, because I never had to deal with that. Also, I think that the way autistic children are handled in the school system varies from location to location (I am in Canada).

If they eliminate Asperger's from the DSM, then it is possible that people like your father and son won't be recognized as being on the autism spectrum at all. I think that is a greater negative than having your label shifted to HFA.
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#52 Katrala

 
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Posted 28 November 2011 - 07:09 PM

We could continue via PM if you'd like, but I find that open discussions are usually better. Even more so if there are others out there lurking who are looking for this type of information.

For me, it doesn't matter if someone labels me HFA or an "aspie" - either way, it is a label, and either way there will be those who think "less" of me because of it. And I have had doctors tell me that there is no way I can have Asperger's because I have a job, a husband, a degree, etc., and I know that they are wrong (these are GP's who don't specialize in this stuff anyway, much like how they don't specialize in gluten intolerance / celiac...), but I know that they are wrong.

Luckily for me, I was not diagnosed until after I had exited the school system (it was a rough time, I'll admit...), but it allowed me to learn how to survive in a world of neurotypicals (NT's). I can't specifically comment as to the implications of being labelled "HFA" vs. "aspie" when it comes to schooling, because I never had to deal with that. Also, I think that the way autistic children are handled in the school system varies from location to location (I am in Canada).

If they eliminate Asperger's from the DSM, then it is possible that people like your father and son won't be recognized as being on the autism spectrum at all. I think that is a greater negative than having your label shifted to HFA.


My only reason for mentioning PM is because this is off-topic from the original poster's comments.

I have always used the terms Asperger's and HFA interchangeably. Those Aspies (and parents of, as I typically interact more with children than adults) that I've dealt with are not opposed to calling themselves autistic, but to having the Asperger's label removed entirely. Research funding is a main component of most arguments I've heard.

And you are correct that there is a potential for some people to no longer qualify for the label. That does concern me, as laws regarding special education services in public schools (and universities) may no longer apply.

Even the diagnosis for Asperger's is slightly varied - specifically regarding the presence (or lack thereof) of a language delay before age 5. Dr. Tony Atwood mentions in his book the presence of a language delay not ruling out Asperger's, while some doctors refuse to test for it with a language delay.
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#53 Jestgar

 
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Posted 28 November 2011 - 07:18 PM

My only reason for mentioning PM is because this is off-topic from the original poster's comments.

It is a great topic and should be continued given the number of people that try the gluten-free diet for Autism, and other issues.

Please do start a separate thread about it so SSG can get feedback for her rant. :)
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#54 Lisa

 
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Posted 28 November 2011 - 07:23 PM

With respect to the original OP, I would suggest that a new thread on Celiac and Aspergers. I would find that interesting, as I would suspect other members would as well.
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Lisa

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#55 Chad Sines

 
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Posted 28 November 2011 - 08:10 PM

Many people with diagnosed celiac with blood tests and biopsies and everything that makes the label inarguable also notice that they seem to become more sensitive to gluten when they stop it. Does that mean they do not have it either? It just does not make sense to me to use the statement to suggest that "non-celiac" will get more sensitive; therefore, they are not celiac when the same thing happens to a diagnosed celiac.

Many have varying degrees of it from massive immediate spells to gradual building up. It makes a lot of sense that with so many varying degrees, they would also show varying stages under lab testing. Add to that that many docs do not even know what to look for.

It just feels careless to me to suggest that someone might not have celiac if the biopsy or blood test does not show it. The treatment is not dangerous, so even if someone is wrong, who cares so long as they get relief. Now granted a person should do what they an to ensure a correct diagnosis within reason and be sure to get checked out if they find they are not improving, but there are a LOT of GIs who will take a positive reaction to going gluten-free as a positive diagnostic test. And yes, some refuse the term unless everything shows it, labs, biopsy, etc.
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#56 sandsurfgirl

 
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Posted 28 November 2011 - 08:13 PM

It is a great topic and should be continued given the number of people that try the gluten-free diet for Autism, and other issues.

Please do start a separate thread about it so SSG can get feedback for her rant. :)



LOL Yes back to my rant!!!

The fact that there has been an argument about this just goes right along with the nonsense that happens with testing. It's not cut and dry and the paths aren't clear. There aren't too many "typical" celiacs because it presents so many ways, further complicating matters.

I told my new GI how I was talked out of testing 8 years ago. He is an exceptional doctor in regards to celiac. He said a lot has changed in 8 years and maybe he would've misdiagnosed me back then too. That gave me hope that there is growth at least on his part and maybe on the part of other docs. I hope so.
  • -1
Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#57 Katrala

 
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Posted 29 November 2011 - 03:06 AM

Many people with diagnosed celiac with blood tests and biopsies and everything that makes the label inarguable also notice that they seem to become more sensitive to gluten when they stop it. Does that mean they do not have it either? It just does not make sense to me to use the statement to suggest that "non-celiac" will get more sensitive; therefore, they are not celiac when the same thing happens to a diagnosed celiac.


If you are referring to my comments, I never mentioned either people with celiac or without celiac. An anecdotal symptom is that *some* people experience an increased sensitivity to gluten after going gluten-free.

The increased sensitivity to gluten is different than the internal damage that is happening with celiac disease.

It just feels careless to me to suggest that someone might not have celiac if the biopsy or blood test does not show it.


I'm a teacher.

If I refer a student for testing for special education services and all the tests come back to say that that student does not have a learning disability of some sort, I am not going to insist they have a learning disability.

However, I may change something I do for them in classroom when I find that it makes them more successful - including offering accommodations and/or modifications that are very similar to those offered to students with learning disabilities. This positive reaction to the change in the classroom does not mean that I can now say they have a learning disability.

It would seem careless to me for a doctor to diagnose celiac disease in a patient where the tests come back negative. Telling them to try a gluten-free diet isn't careless, of course. Dietary response *alone* can say that there is an intolerance of gluten, but it can not diagnose the flattening (or lack thereof) of the villi in the small intestines.

If your body doesn't respond well to gluten - don't eat it. If your body doesn't respond well to whatever - don't eat it.

There is a difference between NCGI and Celiac Disease. One is not greater or more important than the other.

From this website: http://www.celiac.co...rent/Page1.html

My whole point at the beginning of the thread was that both conditions need to better studied. More doctors and researchers need to be aware of *both* conditions so that they can look at them separately. If a patient comes to them who tests negative for celiac, the doctor can think of NCGI and suggest a gluten-free diet as a treatment and then follow up to check on the patient's response.
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#58 Di2011

 
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Posted 29 November 2011 - 03:31 AM

is it time to end this topic?
or is it revealing?
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#59 cait

 
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Posted 29 November 2011 - 03:31 AM

I think part of the problem here is that the tests aren't totally reliable. There are cases where someone tests negative but does have intestinal damage-- just beyond the range of the scope or in spots that weren't biopsied. So you're absolutely right that both need to be studied more. I just don't think we can say with 100% certainty that everyone who tests negative for celiac doesn't have it. Both the blood tests and the biopsies have false negatives sometimes. So it's possible for someone to get caught in the false negative range for both.

I had negative blood tests and a negative biopsy for celiac. However, nobody ever ordered the full panel of blood tests, and the number of biopsies taken was less than some of the recommendations I've seen. More importantly, my dad has blood and biopsy positive celiac, my genetic tests show risk factors. Knowing that, and knowing how I responded to removing gluten and how I respond to traces that sneak in, it's actually safer for me to act as if I DO have celiac despite the negative tests.

I understand your original point and am not trying to jump into the argument here-- I just think there are some shades of gray. Which again points to what you're saying about needing to study both further.

Really not trying to add fuel to the argument here. Just trying to pull together the arguments and show the common ground. Probably failing, so feel free to ignore my post. This convo has probably gone on long enough.
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Dad has Celiac
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Dunno what that makes me, but I'm not going back.
Now corn, soy, and dairy free

#60 beebs

 
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Posted 29 November 2011 - 03:38 AM

The bloods alone have a up to a 40% false negative rate in children under 5 and around 15% false negative in adults, and the damage it the intestines is often patchy - so can be missed in the biopsy samples. That is actually common knowlege among Celiac specialists and in pretty much every medical journal.Negative test does not always mean you are not celiac- I can understand you holding onto the point if the tests were like 99% acurate - but they aren't.

Although I do agree - more studies are needed for all gluten intolerance and Celiac!
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