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Still Angry Sometimes After 2 Years
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99 posts in this topic

The ONLY reason I was able to get "officially" diagnosed (+bloodwork and biopsy) 6 years after gi dr told me I couldn't be celiac(-bloodwork) is because I "failed to mention" to my new gi dr that I had been tested before! Even the new one wouldn't diagnose me until he saw the pathology report even with poitive bloodwork and the completely scallopped and barren moonscape he saw with his own eyes (I have the pics he took during endoscopy). Now if I hadn't done research ONLINE I would have never thought to revisit the celiac issue with a dr.I would have continued to have my gp throw antidepressants @ me ("ya know they help somepeople with IBS!") PLEASE! Spare me the "I can't figure it out so it must be in your head routine" ugh. Sorry I guess this is a touchy subject for me still!

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She's a fool for not looking at other causes. Gluten is not the root cause of all problems. She could have something very serious (non-gluten) going on that she is ignoring because she's convinced she has celiac. She refuses other testing because she's so certain (testing, btw, that is paid by insurance.

Gluten is in many processed foods. My statement was regarding that people who avoid gluten (and thereby processed foods containing gluten) are likely to feel better.

If you would like to take my statements and turn them into absolutes, I don't care. I qualify my responses purposefully.

Katrala you are very new to the diagnosis and the disease and you are so interested in being right you could care less about facts. It means nothing that she came up negative "times two." THE TESTS ARE FAULTY. Somebody wrote about the fact that they came up negative more than once on a scope until their famous celiac doctor put a camera in their intestine. The scope doesn't go down far enough and they miss it.

You're not blunt. I'm blunt. You lack simple human compassion towards someone that obviously needs help. Why don't you steer her to this website or give her some suggestions? Maybe she does need more testing or maybe she needs more time on the diet. I think the "fool" is someone who could help another suffering human being, but instead chooses to stand by and call them names like silly and fool.

You said she got somewhat better being gluten free but still feels like crap. Well heck girl, that's pretty much everyone for awhile. For me it was 6 months. Everyone heals at a different pace. Some never get truly well if the damage went on a long time. Maybe she like everybody else has other intolerances due to gut damage. Maybe she needs to eat clean or go dairy and soy free for awhile.

I laughed out loud at your statement about processed foods. You think Kinnikinnick donuts or Udi's bread isn't processed? Gluten free substitute foods are just as processed as anything else that comes off a machine.

Why do you care if she calls it celiac? Calling it celiac is what I tell EVERYONE who diagnosed by dietary response to do. Why? Because number one it helps people comply with the diet. It also helps others take it more seriously. And it just makes things easier and more clear. Intolerance just doesn't sound serious to people and if you would read other people's stories on here, which I doubt you do, you'd see the grief and hell they have gone through from family members who flat out don't believe them or even give them gluten purposely to "prove" it's all in their heads.

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That is sort of how I have gotten around the issue before. I'll start chit chatting with the patient and tell them I have celiac. Most people ask me then what it is so I tell them. I'll tell them it might be worth mentioning to their doctor to get at least blood tested. I also tell them they can get a lot of information from the internet and to read about it. I have even taken the time to write down ALL the proper tests for a couple of people who were interested.

Hi Roda,

Thanks for your story. It is nice to hear that you and the kids are doing well. It is a hard thing to see your child in pain or distressed :unsure:

Given what you have said (in the post I've quoted here) I think there are probably a great many people that you have helped. :D They just haven't been back to thank you. So here is the big THANKYOUTHANKYOUTHANKYOU from all those people who went back to their doctor better informed or went gluten free and are feeling better :)

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I agree with Sandsurf that if that woman feels better gluten free then so be it who cares what she calls it. I also agree with Katrala that other problems/testing should be explored. She can still be convinced she is celiac and eat gluten free if she so chooses, but should be open to other possibilities and not have blinders on either. And yes, not everything is gluten related.

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I agree about getting tested for everything, I think sometimes alot of people tend to think its gluten because it might be easier than the alternatives - ie Crohn's etc. I still need a biopsy at some point - which of course will show up nothing in terms of Celiac as I am gluten free, but to rule everything else out as well.

When my 5 year old went to the above mentioned specialist a couple of weeks back - and keep in mind he had negative bloods and negative biopsy (showed gastritis, inflammation, GERD etc but no villi damage) he said not to challenge him yet - he wants him to have one good year at school (as he starts next year) He missed about about a year of a 2 year pre school stint through illness and has only just come good after being gluten-free and on medication for a year. So negative bloods/negative biopsy - but he still thinks that he could absolutely have Celiac (family history obviously) But having said that - family history is one person officially diagnosed - and one of the lucky 20%, the other 80% will most likely never get a diagnosis - so to say that you should only think Celiac to be a cause if there is a family history is a bit naive to be honest.

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You're not blunt. I'm blunt. You lack simple human compassion towards someone that obviously needs help. Why don't you steer her to this website or give her some suggestions? Maybe she does need more testing or maybe she needs more time on the diet. I think the "fool" is someone who could help another suffering human being, but instead chooses to stand by and call them names like silly and fool.

You said she got somewhat better being gluten free but still feels like crap. Well heck girl, that's pretty much everyone for awhile. For me it was 6 months. Everyone heals at a different pace. Some never get truly well if the damage went on a long time. Maybe she like everybody else has other intolerances due to gut damage. Maybe she needs to eat clean or go dairy and soy free for awhile.

I laughed out loud at your statement about processed foods. You think Kinnikinnick donuts or Udi's bread isn't processed? Gluten free substitute foods are just as processed as anything else that comes off a machine.

Why do you care if she calls it celiac? Calling it celiac is what I tell EVERYONE who diagnosed by dietary response to do. Why? Because number one it helps people comply with the diet. It also helps others take it more seriously. And it just makes things easier and more clear. Intolerance just doesn't sound serious to people and if you would read other people's stories on here, which I doubt you do, you'd see the grief and hell they have gone through from family members who flat out don't believe them or even give them gluten purposely to "prove" it's all in their heads.

Whew.

Go back and read what I've written. It's like you want to disagree with me so badly that you aren't even really reading (i.e. the "blunt" comment.)

Just because gluten is a problem for me doesn't mean that it's a problem for someone else. I'd hate for my friend to spend months hoping to recover by going gluten-free when there could be something very serious going in. That's not a lack of compassion, that's just common sense.

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Just because gluten is a problem for me doesn't mean that it's a problem for someone else. I'd hate for my friend to spend months hoping to recover by going gluten-free when there could be something very serious going in.

Which is totally the right thing - she should be looking at all avenues for her illness.

I think though, because it takes some of us years and years and many, many tests and loads of doctors to arrive at our diagnosis (or lack thereof) it's worth keeping in mind that sometimes tests come back negative even for celiacs. If you are one of the the "had a blood - positive, had a biopsy positive" without years of struggle - then from what I can gather you are in the 'lucky few' - which is awesome, but a negative, two negative, three negative biopsies still does not mean you aren't Celiac, less likely yes - but any Dr who knows anything about it knows that it is not as black and white as that.

The one that really really scares me is when you hear stories that someone has a high positive on the bloods and a negative biopsy and then are told "its not gluten" Just like that, no further investigation! :blink: WTF!!???

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Whew.

Go back and read what I've written. It's like you want to disagree with me so badly that you aren't even really reading (i.e. the "blunt" comment.)

Just because gluten is a problem for me doesn't mean that it's a problem for someone else. I'd hate for my friend to spend months hoping to recover by going gluten-free when there could be something very serious going in. That's not a lack of compassion, that's just common sense.

If she is a friend of yours, then get her on this site. Go over everything with her and make sure she is totally gluten free including her cosmetics and beauty products. Support her in going clean in her diet and cutting out the usual other offenders like dairy and soy for awhile.

Let her know that you found out from people who have lived it that is is possible to have celiac and come up negative on the tests so she feels validated and supported.

And on top of that encourage her to get more testing to rule out other things and be safe.

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I had a blood test many years ago when i had a bad spell. Off and on throughout my adult life I had these spells that were almost cyclical. I cannot explain anything behind that at all. I assume it was negative because the doc never mentioned it again. They took out my gallbladder thinking that was the issue. I seemed to get a little better but then had massive issues from no GB. Fastforward to last year. I literally was vomiting 24/7, dizzy, brain fog, desperate and major quality of life issues. My personality changed from outgoing to someone who never got out. At 3 am one morning while hurling and wondering if I would ever get better or just die of this mysterious illness, I recalled that doctor asking if I had ever been tested for Celiac. No idea what triggered that memory. I knew it had to be negative since I never heard about the test. Still I decided what harm could there be to avoid gluten. In two days the 24/7, daily nausea and vomiting stopped. Sure, I have a lot of ongoing issues with recovery. I seem to be intolerant of certain things like milk and soy and who knows what else. I may not be taking CC serious enough. That said, my self diagnosis saved my life. Do I care what a blood test shows? Nope. Do I care to have another upper endoscopy...he** no. It is not like there is anything they could do if they had a positive result.

Many of us find this by trial and error. If it ends the misery that is a good indicator. Many physicians accept that as proof. I spoke with one doctor recently who indicated that alone would be enough for him to sign off on a Celiac diagnosis.

What I know is removing gluten took away 95% of the extreme issues I had. To me that is not an intolerancet issue. I am current lactose intolerant. I get some lower GI issues, but nothing that feels like it could end my life. With gluten, I get major quality of life issues. I honestly thought I was dying. That is more than intolerance and I need no GI or test to diagnose that as Celiac.

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Here's a good example of how faulty the tests are. Two of the women who post here have become close personal friends of mine.

One of them was misdiagnosed with lupus and put on very strong medications for years that made her really sick. She was in and out of hospitals, treated for adrenal insufficiency- more strong medication and was nearly dying. On her blood tests only ONE of the markers was high. The doctor told her she didn't have celiac disease. She went gluten free anyways and it literally saved her life. She is 6 feet tall and weighed 97 pounds at diagnosis. If she had listened to the doctor I shudder to think of what could've happened.

Another close friend of mine came up negative twice on scopes and negative on blood tests. Her naturopath suspected celiac and had her go gluten free anyways. She still has a lot of illness but has made huge improvements being gluten free. If she gets CC'd it knocks her down for days.

On my blood tests only one marker was high and the others were normal, yet pretty much all of my very long list of illnesses cleared up when I went gluten free. My latest health challenge is endocrine related. I don't think anybody knows if it could have happened because of celiac, but up until mid September I had been doing great and was working out and really active.

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I think most doctors are not specialists in our issues. It is ignorance. I knew nothing about celiac until a friend of mine was diagnosed. I was even more surprised when I was diagnosed. My diagnosis was accidental. I went in for a endoscopy for acid reflux. My primary care doctor also did not know about celiac, but I am glad that he sent me to a specialist. I spent a great deal of time educating myself about the desease and I share my information with my doctor. I guess I am really lucky, he is willing to take on this information and do further research rather than be skeptical. I feel for everyone out there because an earlier diagnosis would be better for all. I pushed for my daughter's testing and she was diagnosed. We all should focus on what we can do to help heal and educate others. I do believe that any doctor who withholds diagnosis willingly should be removed from practice. Ignorance is going to happen. Education is the best way to deal with it.

What really makes me mad is not the ignorance of doctors, but the refusal of people to get tested when a relative has the desease. The worst is learning of others who ignore the positive test all together and go on eating gluten. I have heard more horror stories about people who are lucky to know but choose to do nothing about it.

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Gluten intolerance / sensitivity and celiac disease are different things.

I disagree with this. Personally, I think Celiac Disease is one part of Gluten Intolerance spectrum. To use an analogy, I think it compares to Asberger's Disease being part of the Autism spectrum.

It frustrates me that doctors don't take Celiac Disease seriously, and they don't even begin to have a clue about gluten intolerance, which is just as serious. And I personally hate the label "Gluten Intolerant." It makes it sound like a minor problem and not the serious issue it is. People (including doctors) seem to take it more seriously if you say you have Celiac Disease instead. "Disease" sounds much more serious than "Intolerance." But all the problems with Gluten Intolerance can be just as harmful as Celiac Disease.

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I agree with you. Intolerance is a minor issue, ie eating this gives me gas or maybe the runs. For most people on here, their issues are serious when consuming gluten.

Imagine the difference in perception to I have a peanut allergy vs intolerant of peanuts. What springs to your mind when you hear both statement? One means you will die, the other means you probably get stomach cramps. I may forget to tell you about peanuts if you just get gas; however, i will be super safe if i feel you might die from it.

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"Celiac and gluten sensitivity are different." So WHAT? The intolerant/sensitive people on here and the self diagnosed people on here have been just as sick if not sicker than many of the celiacs. And as Beebs pointed out, the TESTS ARE NOT ACCURATE much of the time. You have no choice but to diagnose yourself in most cases. There aren't that many of us who had cut and dry diagnosis like you did. Lucky you. And if someone is intolerant and not full blown celiac they will likely have NO CHOICE but to self diagnose because it would be a rare doctor who could diagnose that.

This is such a timely topic for me and I thank Sandsurfgirl for making this statement. I am a full blown, officially diagnosed Celiac, via blood work which came back off the charts. I am extremely lucky to be able to say that but, quite honestly, even if my blood work came back negative, I would still have gone gluten-free because I was literally on the threshold of death when I was diagnosed. A couple of more weeks and it would have been the ICU and a feeding tube. I think eating gluten free is easy compared to dying of starvation.

My husband I have suspected of having some kind of gluten issue ever since my eyes were opened with my diagnosis. He, like myself, has always had low body weight, even though he eats like a teenage quarterback. He never suffered in your face symptoms but I began to notice that whenever he glutened up, he would be very burpy after wards. He never gets burpy after a gluten-free meal. He also popped anemic a couple of years ago but, as usual, his PCP didn't think that was any big deal. However, over the summer, I began to notice he was getting too thin. He eats like a damn horse, no exaggeration! He weighed himself and had dropped to a low of 128 lbs! To say I was alarmed was an understatement. He is 5' 7" tall.

He also suffers from fatigue to the point where he falls asleep on the couch every night after dinner. I had him gluten up and asked my thyroid physician, who diagnosed me, to do a Celiac panel on him. Went today to get the results and to my horror, she forgot to include the total IgA in the panel, making the whole test invalid, even though his other numbers were very negative for a gluten problem. He did have gene testing done when I was diagnosed 6 years ago and he came back positive for a double DQ-1....gluten sensitivity. Needless to say, I am so frustrated as he was losing weight to the scary point yet we still have no answers. A point of interest is that he is on the low side for Vitamins D and B complex...not in your face deficient but low enough she wants to supplement. So...we have anemia, lower vitamin counts than they should be and weight loss. He went totally gluten-free 2 1/2 weeks ago and has gained 5 pounds back. Is there a connection? I hope so but whatever happens, he has told me he is staying gluten-free for life. He also doesn't want to be jerked around by the AMA but it is all is so infuriating that Celiac's or gluten sensitives have to put up with this BS to find any answers. Any other disease state and these doctors would be getting sued for their ignorance and screw-ups.

I disagree that there is a lot difference between full blown Celiac and gluten sensitivity. You can still develop malabsorption from sensitivity alone, due to all the inflammation in your gut. My advice to anyone in these same shoes is never doubt yourself when it comes to the body you live in. Once you learn the ropes of the gluten-free diet, it's easy to follow and stay on. Yes, I said easy. You don't even have to tell your doctor because it's none of their damn business what you eat. My husband has been very thin his whole life and now that he is in his early 50's, gluten issues come to the forefront. You can't fool your body anymore. If something like 97% of Celiacs are undiagnosed, then why the hell aren't doctors more aware of this and doing whatever it takes to screen people in a common sense fashion? Why? Because we get better on our own, without all their pills and meds and appointments. If many more people ate like us, doctors would have plenty of free time!

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Gemini I am so sorry your husband has gone through this. His story like everyone else demonstrates perfectly how serious the flaws in these tests are. The flaws in lack of education for doctors. The flaws in the entire system when it comes to this disease.

The sad thing is that those of us who are passionate and knowledgeable about what needs to change are often dealing with other health issues and we don't have the energy to write congress and petition medical organzations. Or we're picking up the pieces of our lives and accomplishing things we couldn't accomplish for so long.

Despite the studies that Skylark shared, I still think that intolerant people have celiac but it's just not showing up on tests.

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I disagree with this. Personally, I think Celiac Disease is one part of Gluten Intolerance spectrum. To use an analogy, I think it compares to Asberger's Disease being part of the Autism spectrum.

I disagree.

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

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."

But all the problems with Gluten Intolerance can be just as harmful as Celiac Disease.

Yes, but while some symptoms are the same, what is happening on the inside is different. This is the part that doctors and researchers need to focus on.

NCGI are and Celiac Disease are two different monsters that share a common coping tool. Research needs to go into *both* of them.

Despite the studies that Skylark shared, I still think that intolerant people have celiac but it's just not showing up on tests.

This affects me like my perceived lack of compassion affects you.

Science says X, but I believe Y, so I say that X is not true. It's enough for me to have a headache that I can be assured is not celiac-related.

People with NCGI need *more* research done into their condition. Not to have it covered up by celiac disease when information regarding NCGI could help them.

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I had a blood test many years ago when i had a bad spell. Off and on throughout my adult life I had these spells that were almost cyclical. I cannot explain anything behind that at all. I assume it was negative because the doc never mentioned it again. They took out my gallbladder thinking that was the issue. I seemed to get a little better but then had massive issues from no GB. Fastforward to last year. I literally was vomiting 24/7, dizzy, brain fog, desperate and major quality of life issues. My personality changed from outgoing to someone who never got out. At 3 am one morning while hurling and wondering if I would ever get better or just die of this mysterious illness, I recalled that doctor asking if I had ever been tested for Celiac. No idea what triggered that memory. I knew it had to be negative since I never heard about the test. Still I decided what harm could there be to avoid gluten. In two days the 24/7, daily nausea and vomiting stopped. Sure, I have a lot of ongoing issues with recovery. I seem to be intolerant of certain things like milk and soy and who knows what else. I may not be taking CC serious enough. That said, my self diagnosis saved my life. Do I care what a blood test shows? Nope. Do I care to have another upper endoscopy...he** no. It is not like there is anything they could do if they had a positive result.

Many of us find this by trial and error. If it ends the misery that is a good indicator. Many physicians accept that as proof. I spoke with one doctor recently who indicated that alone would be enough for him to sign off on a Celiac diagnosis.

What I know is removing gluten took away 95% of the extreme issues I had. To me that is not an intolerancet issue. I am current lactose intolerant. I get some lower GI issues, but nothing that feels like it could end my life. With gluten, I get major quality of life issues. I honestly thought I was dying. That is more than intolerance and I need no GI or test to diagnose that as Celiac.

This sounds so much like what I went through, even though no doctor suggested the celiac screen, even with family history. I was tested for Lymes disease, MS, Lupus, cancer, etc, etc.

I finally did an elimination diet when I was profoundly depressed and had nausea, vomitting and diahreaaha every day. Amazing.

Another thing that amazed me is that I saw a 50 year old woman write the Dr. that took over Dr. Gott's article that she has Osteoperosis and can't tolerate the prescription drugs prescribed by her M.D.

It's been well documented and studied that early onset Osteopenia and Osteoperosis is connected with celiac disease. The columnist recommended that she continue with the drug therapy, just change brands.

Because of this post, I'm going to write him a letter and copy the medical literature I have about bone disease being related to celiac disease. Maybe if he chooses to re-address the topic, more people (and possibly more MD's, they read the paper) will get informed.

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Another thing I do is remind my doctors about testing for celiac disease. Instead of making small talk with them when they come in the exam room, I'll ask "How many patients did you test for celiac disease last month?" If they say "Um...none", I remind them that 1 in every 133 Americans have celiac disease, so if they're seeing between 25-30 patients a day, they should be ordering the panel at least every month. Or I'll ask how long it's been since they ordered a celiac panel.

I didn't know if I was being effective of not, but recently a doctor burst into the room and said "We got one!" She was really excited! A patient had a positive blood panel.

I copy medical articles for my doctors, too. I talk to the nurses and medical assistants about it, especially in the specialists office. I think it's worthy to try to educate the medical field. They get bombarded with drug reps and articles. I don't care if I'm repetative, I'm trying to get it to sink in. Hopefully that means someone won't have to go through what some of us went through. (Diagnosed or not.)

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Another thing I do is remind my doctors about testing for celiac disease. Instead of making small talk with them when they come in the exam room, I'll ask "How many patients did you test for celiac disease last month?" If they say "Um...none", I remind them that 1 in every 133 Americans have celiac disease, so if they're seeing between 25-30 patients a day, they should be ordering the panel at least every month. Or I'll ask how long it's been since they ordered a celiac panel.

I didn't know if I was being effective of not, but recently a doctor burst into the room and said "We got one!" She was really excited! A patient had a positive blood panel.

I copy medical articles for my doctors, too. I talk to the nurses and medical assistants about it, especially in the specialists office. I think it's worthy to try to educate the medical field. They get bombarded with drug reps and articles. I don't care if I'm repetative, I'm trying to get it to sink in. Hopefully that means someone won't have to go through what some of us went through. (Diagnosed or not.)

LOVE IT!!!! Keep it up :D:D

The Celiac Sprue Association will supply you with brochures too, which you can litter the waiting room. ;)

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Another thing I do is remind my doctors about testing for celiac disease. Instead of making small talk with them when they come in the exam room, I'll ask "How many patients did you test for celiac disease last month?" If they say "Um...none", I remind them that 1 in every 133 Americans have celiac disease, so if they're seeing between 25-30 patients a day, they should be ordering the panel at least every month. Or I'll ask how long it's been since they ordered a celiac panel.

I didn't know if I was being effective of not, but recently a doctor burst into the room and said "We got one!" She was really excited! A patient had a positive blood panel.

I copy medical articles for my doctors, too. I talk to the nurses and medical assistants about it, especially in the specialists office. I think it's worthy to try to educate the medical field. They get bombarded with drug reps and articles. I don't care if I'm repetative, I'm trying to get it to sink in. Hopefully that means someone won't have to go through what some of us went through. (Diagnosed or not.)

Marilyn!! I think that's fabulous. Keep up the good work and I think I will add it to my repertoire of Dr. visit chit-chat . . . and anybody else thinking of following Marilyn's example, don't forget to remind your OB/GYN's that infertility can be caused by celiac disease. ;)

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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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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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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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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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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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    • 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!
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