Re: Undiagnosed...please read my novel

[Guest guest]

Let me start off by saying I am new to the Celiacs group and I don't

have much experience with all this. My husband was diagnosed less than

a month ago so there is a lot I don't know about the disease.

That said... I can't imagine poisoning my child just so a Dr could tell

me what I already know. I can't tolerate onions, if I eat them I get

horrible stomach pains and diarrhea. I can't imagine being forced to

eat them every day for several months so that I could go for a blood

test to determine if they make me sick! If I felt that my child had

Celiacs there is no way I would feed her foods that made her ill and

caused her mental and physical pain just so

I could get a medical diagnosis. This disease is nasty with it's list

of symptoms and I just can't imagine forcing someone to endure the pain

my husband has been in, and his symptoms are rather mild in comparison

to some of the people on this list. What is the benefit to making your

child sick so you can get a diagnosis? I know that you can take a tax

deduction if you are a Celiac but is it really worth it? Perhaps I am

missing something here? If a GF diet makes your family feel better than

why not do it? My husband has been telling everyone he has Celiac's

disease for a month now and not one person has asked to see a note from

his doctor proving it.

Kris

Becca wrote:

My middle ds was born at 9+lbs. From birth, however, his weight gain

is non existant. He is sloooooow gaining. He has no rear end, no body

fat. He is skin and bones. I tend to have thin kids, but he is the

extreme. We are due to go out of town soon and when we return, I will

be taking him in once again to talk about his weight. He is now 8yo.

He did have a urinary tract issue and sustained some damage to one of

his kidneys. So, I always suspected this was the reason for his poor

weight, but when his brother was taken off all of the foods, he jumped

three growth curves in a matter of months!! That made me start

wondering...

So, I definitely feel like something is going on here, but I don't know

what. I refuse to take my other dc off of gluten and put them in limbo

like my youngest ds is. I don't know if it is Celiac, but I at least

want to rule it out. I don't know if it is worth having my dd do a

biopsy or not.

So I am interested to hear your thought. I am still hoping to

reintroduce gluten for my youngest and make it past the three month

mark.

Thank you for any insight that you have!!

Becca

[Guest guest]

Let me start off by saying I am new to the Celiacs group and I don't

have much experience with all this. My husband was diagnosed less than

a month ago so there is a lot I don't know about the disease.

That said... I can't imagine poisoning my child just so a Dr could tell

me what I already know. I can't tolerate onions, if I eat them I get

horrible stomach pains and diarrhea. I can't imagine being forced to

eat them every day for several months so that I could go for a blood

test to determine if they make me sick! If I felt that my child had

Celiacs there is no way I would feed her foods that made her ill and

caused her mental and physical pain just so

I could get a medical diagnosis. This disease is nasty with it's list

of symptoms and I just can't imagine forcing someone to endure the pain

my husband has been in, and his symptoms are rather mild in comparison

to some of the people on this list. What is the benefit to making your

child sick so you can get a diagnosis? I know that you can take a tax

deduction if you are a Celiac but is it really worth it? Perhaps I am

missing something here? If a GF diet makes your family feel better than

why not do it? My husband has been telling everyone he has Celiac's

disease for a month now and not one person has asked to see a note from

his doctor proving it.

Kris

Becca wrote:

My middle ds was born at 9+lbs. From birth, however, his weight gain

is non existant. He is sloooooow gaining. He has no rear end, no body

fat. He is skin and bones. I tend to have thin kids, but he is the

extreme. We are due to go out of town soon and when we return, I will

be taking him in once again to talk about his weight. He is now 8yo.

He did have a urinary tract issue and sustained some damage to one of

his kidneys. So, I always suspected this was the reason for his poor

weight, but when his brother was taken off all of the foods, he jumped

three growth curves in a matter of months!! That made me start

wondering...

So, I definitely feel like something is going on here, but I don't know

what. I refuse to take my other dc off of gluten and put them in limbo

like my youngest ds is. I don't know if it is Celiac, but I at least

want to rule it out. I don't know if it is worth having my dd do a

biopsy or not.

So I am interested to hear your thought. I am still hoping to

reintroduce gluten for my youngest and make it past the three month

mark.

Thank you for any insight that you have!!

Becca

[Guest guest]

Let me start off by saying I am new to the Celiacs group and I don't

have much experience with all this. My husband was diagnosed less than

a month ago so there is a lot I don't know about the disease.

That said... I can't imagine poisoning my child just so a Dr could tell

me what I already know. I can't tolerate onions, if I eat them I get

horrible stomach pains and diarrhea. I can't imagine being forced to

eat them every day for several months so that I could go for a blood

test to determine if they make me sick! If I felt that my child had

Celiacs there is no way I would feed her foods that made her ill and

caused her mental and physical pain just so

I could get a medical diagnosis. This disease is nasty with it's list

of symptoms and I just can't imagine forcing someone to endure the pain

my husband has been in, and his symptoms are rather mild in comparison

to some of the people on this list. What is the benefit to making your

child sick so you can get a diagnosis? I know that you can take a tax

deduction if you are a Celiac but is it really worth it? Perhaps I am

missing something here? If a GF diet makes your family feel better than

why not do it? My husband has been telling everyone he has Celiac's

disease for a month now and not one person has asked to see a note from

his doctor proving it.

Kris

Becca wrote:

My middle ds was born at 9+lbs. From birth, however, his weight gain

is non existant. He is sloooooow gaining. He has no rear end, no body

fat. He is skin and bones. I tend to have thin kids, but he is the

extreme. We are due to go out of town soon and when we return, I will

be taking him in once again to talk about his weight. He is now 8yo.

He did have a urinary tract issue and sustained some damage to one of

his kidneys. So, I always suspected this was the reason for his poor

weight, but when his brother was taken off all of the foods, he jumped

three growth curves in a matter of months!! That made me start

wondering...

So, I definitely feel like something is going on here, but I don't know

what. I refuse to take my other dc off of gluten and put them in limbo

like my youngest ds is. I don't know if it is Celiac, but I at least

want to rule it out. I don't know if it is worth having my dd do a

biopsy or not.

So I am interested to hear your thought. I am still hoping to

reintroduce gluten for my youngest and make it past the three month

mark.

Thank you for any insight that you have!!

Becca

[Guest guest]

Some school systems are sticklers for that official diagnosis. If you have young children, play dough as wheat in it.....they do art projects with noodles all the time, or cheerios, etc. They have school parties with cupcakes, cake, etc. Not to mention the school lunch issue. I had a special needs child and told them (even with the official diagnosis) and one of his teachers gave him carrot cake! Didn't know there was wheat in flour! The level of stupidity would amaze you. When you have the official diagnosis, they HAVE to pay attention to how the lunches are labeled, making sure no other kid throws a cookie on his lunch, thereby rendering it un-eatable, etc.

--loriann aka Victree the Christian clown

[Guest guest]

>>What is the benefit to making your child sick so you can get a diagnosis? I know that you can take a tax >>deduction if you are a Celiac but is it really worth it? Perhaps I am missing something here? If a GF diet makes your family feel better than >>why not do it?Ummm....I didn't mention this, but the allergist is really on my case about ds eating wheat. We told him about his problems and that we think he is having abdominal pains. He looks at skin testing and declares, "He is not allergic, so wheat is fine!" He also says that since it is latent, it isn't an issue. Finally, he thinks it is his age. Bah!! This child is soooooo happy when he is gluten free. He has a totally different personality eating wheat. The allergist

thinks it is in my head. I never believed that foods could effect a child. But I am a firm believer now. I do get the feeling that as an allergist, he feels a great sense of accomplishment if he gets kids eating stuff. They also talk about the hassel and cost. To me that is nothing. I make all his treats, buy flours at the Asian and Indian market and only buy bread, pasta, and cereal since these are difficult for me to make without dairy and eggs. I honestly don't think it is an allergy. I do believe that if it isn't Celiac it is a gluten intolerance. I have no issues with school since I homeschool. I would have had him tested long ago, but I read many things about Celiac, gluten intolerance, and wheat allergy overlapping and looking very similar at a young age and that testing was not definitive until past two. It also would be a good thing to know if this is something he needs to do rather than a

suspicion. Believe me...I had plans. If I saw any sign of the rash, we were going to go to get a biopsy. ASAP If I grew concerned about his weight, we were going to the ped. You see, I have this kid that can't speak to me and tell me for sure what is going on. I have a dr pressuring me to give him wheat. It makes me feel like a Munchausen mom who is making stuff up What else am I supposed to do? If I could afford genetic testing, I would do it in a heartbeat!! I feel already like I am stuck in limbo land. I certainly don't look at my ds as a possible tax deduction. That is really an unfair assesment. Oh, and there are drs who still have their patients do a period of eating gluten after going gf to confirm diagnosis. So please don't criticise us for a two day failed trial and thinking of repeating the trial due to pressure from physicians when physicians who should

know better are STILL doing it.Becca

[Guest guest]

I wanted to add that there are many times when I need to have documentation that he needs a special diet, etc. If he should outgrow all of his allergies, and I don't have a diagnosis, what dr will give me documentation if I need it? Who will say that he needs a special diet if it is just my own little opinion and my choice. You must admit that a medical diagnosis really does make a difference!!Becca

[Guest guest]

Hi Becca,

I'm very sorry if my post came across as being snide, that wasn't my

intention at all. I hate that e-mail can't convey tone of voice and can

be so easily miss-interpreted. The tax deduction thing was just the

only reason I know of that would require a medical doctors diagnosis as

proof. I was just asking a question and wasn't trying to imply anything

to you or anyone else. I am very confused about all the posts about

schools and needing to fill out forms and such. I have never heard of

kids with peanut allergies having to fill out special forms or needing

a doctors note as "proof" that you have the allergy. My nephew has nut

allergies and it's just something my sister-in-law made the school

aware of and since no one wants a kid going into anaphylactic shock at

school everyone is careful about it. So why all these special forms for

kids with Celiac?

I am also confused by posts lately that are talking about going back to

eating wheat for weeks or months at a time so that people can get blood

work and biopsies done. It just seems to me that if you do better off

of gluten then don't eat it. I have been on WW for over four years and

don't need a doctor (or anyone else for that matter) telling me how I

should eat. I have had several family members say to me "why are you

still doing WW you are thin now?" Well maybe because if I didn't

continue to eat healthy I would go back to being fat...duh!! I do of

course realize that it is very different when we are talking about

children and what they are being fed. Perhaps I am looking at it all

wrong but I see it like this...If I "think" have lead poisoning from

the pipes in my house and I change all the pipes in the house and my

illness goes away, I sure as heck wouldn't eat some more lead and go in

for blood work to "make sure" that it was the lead making me sick. I

realize that may seem like an over exaggeration but given how much pain

my husband has been in for the past three months it sure seems like he

was being poisoned by the gluten. I can however see doing it for a day

or so just to confirm your suspicions but putting a child through weeks

of pain just seems cruel to me. And maybe not everyones reactions to

gluten are as severe as others and a month of eating wheat may not be

so much painful as it is annoying.

As for your doctors reaction I would say it might be time to find a new

doctor. You know better than anyone how you are feeling and how your

children are feeling since you are around them constantly. If your

doctors aren't taking your suggestions to heart or seem to be gaffing

you off without giving you sound reasoning I would ditch them. For

instance I went into my doctor and asked her if she could test me for

thyroid problems. She asked why and I told her I had a family history

and that I had a couple symptoms that were probably nothing but could

be related. She said it sounded reasonable and had me tested. Had she

told me I was overreacting and my symptoms were nothing I would have

gotten upset. If she told me my symptoms were not indicative of thyroid

problems and why she felt I was way off in my assessment I probably

would have listened to her. My point being you need to listen to your

gut instincts. If you really feel you aren't getting good medical

attention then find another doctor.

I think a lot of people tend to think of Doctors as "All Knowing" (not

saying this about you or anyone in specific) and they seem to forget

that they are just normal people with a specialized education. They

aren't always right in their diagnosis and if you don't like what one

has to say or how they treat you then find another one. I worked for

years in doctors offices and it always surprised me what people would

put up with from a doctor. I think people fail to realize that Doctors

are there to provide a service. If you aren't getting good service or

being treated with respect then why keep seeing the same doctor? If you

walked into a restaurant and were greeted rudely, mocked for your poor

wine selection, and the food was cold when it should have been hot,

would you go back to the same restaurant?

Kris

Becca wrote:

>>What is the benefit to making your child sick so you can

get a diagnosis? I know that you can take a tax

>>deduction if you are a Celiac but is it really worth it?

Perhaps I am missing something here? If a GF diet makes your family

feel better than

>>why not do it?

Ummm....I didn't mention this, but the allergist is really on my case

about ds eating wheat. We told him about his problems and that we

think he is having abdominal pains. He looks at skin testing and

declares, "He is not allergic, so wheat is fine!" He also says that

since it is latent, it isn't an issue. Finally, he thinks it is his

age. Bah!! This child is soooooo happy when he is gluten free. He

has a totally different personality eating wheat. The allergist thinks

it is in my head. I never believed that foods could effect a

child. But I am a firm believer now. I do get the feeling that as an

allergist, he feels a great sense of accomplishment if he gets kids

eating stuff. They also talk about the hassel and cost. To me that is

nothing. I make all his treats, buy flours at the Asian and Indian

market and only buy bread, pasta, and cereal since these are difficult

for me to make without dairy and eggs. I honestly don't think it is an

allergy. I do believe that if it isn't Celiac it is a gluten

intolerance. I have no issues with school since I homeschool. I would

have had him tested long ago, but I read many things about Celiac,

gluten intolerance, and wheat allergy overlapping and looking very

similar at a young age and that testing was not definitive until past

two. It also would be a good thing to know if this is something he

needs to do rather than a suspicion. Believe me...I had plans. If I

saw any sign of the rash, we were going to go to get a biopsy. ASAP

If I grew concerned about his weight, we were going to the ped. You

see, I have this kid that can't speak to me and tell me for sure what

is going on. I have a dr pressuring me to give him wheat. It makes me

feel like a Munchausen mom who is making stuff up What else am I

supposed to do? If I could afford genetic testing, I would do it in a

heartbeat!! I feel already like I am stuck in limbo land. I

certainly don't look at my ds as a possible tax deduction. That is

really an unfair assesment. Oh, and there are drs who still have their

patients do a period of eating gluten after going gf to confirm

diagnosis. So please don't criticise us for a two day failed trial and

thinking of repeating the trial due to pressure from physicians when

physicians who should know better are STILL doing it.

Becca

[Guest guest]

Hi Becca,

I'm very sorry if my post came across as being snide, that wasn't my

intention at all. I hate that e-mail can't convey tone of voice and can

be so easily miss-interpreted. The tax deduction thing was just the

only reason I know of that would require a medical doctors diagnosis as

proof. I was just asking a question and wasn't trying to imply anything

to you or anyone else. I am very confused about all the posts about

schools and needing to fill out forms and such. I have never heard of

kids with peanut allergies having to fill out special forms or needing

a doctors note as "proof" that you have the allergy. My nephew has nut

allergies and it's just something my sister-in-law made the school

aware of and since no one wants a kid going into anaphylactic shock at

school everyone is careful about it. So why all these special forms for

kids with Celiac?

I am also confused by posts lately that are talking about going back to

eating wheat for weeks or months at a time so that people can get blood

work and biopsies done. It just seems to me that if you do better off

of gluten then don't eat it. I have been on WW for over four years and

don't need a doctor (or anyone else for that matter) telling me how I

should eat. I have had several family members say to me "why are you

still doing WW you are thin now?" Well maybe because if I didn't

continue to eat healthy I would go back to being fat...duh!! I do of

course realize that it is very different when we are talking about

children and what they are being fed. Perhaps I am looking at it all

wrong but I see it like this...If I "think" have lead poisoning from

the pipes in my house and I change all the pipes in the house and my

illness goes away, I sure as heck wouldn't eat some more lead and go in

for blood work to "make sure" that it was the lead making me sick. I

realize that may seem like an over exaggeration but given how much pain

my husband has been in for the past three months it sure seems like he

was being poisoned by the gluten. I can however see doing it for a day

or so just to confirm your suspicions but putting a child through weeks

of pain just seems cruel to me. And maybe not everyones reactions to

gluten are as severe as others and a month of eating wheat may not be

so much painful as it is annoying.

As for your doctors reaction I would say it might be time to find a new

doctor. You know better than anyone how you are feeling and how your

children are feeling since you are around them constantly. If your

doctors aren't taking your suggestions to heart or seem to be gaffing

you off without giving you sound reasoning I would ditch them. For

instance I went into my doctor and asked her if she could test me for

thyroid problems. She asked why and I told her I had a family history

and that I had a couple symptoms that were probably nothing but could

be related. She said it sounded reasonable and had me tested. Had she

told me I was overreacting and my symptoms were nothing I would have

gotten upset. If she told me my symptoms were not indicative of thyroid

problems and why she felt I was way off in my assessment I probably

would have listened to her. My point being you need to listen to your

gut instincts. If you really feel you aren't getting good medical

attention then find another doctor.

I think a lot of people tend to think of Doctors as "All Knowing" (not

saying this about you or anyone in specific) and they seem to forget

that they are just normal people with a specialized education. They

aren't always right in their diagnosis and if you don't like what one

has to say or how they treat you then find another one. I worked for

years in doctors offices and it always surprised me what people would

put up with from a doctor. I think people fail to realize that Doctors

are there to provide a service. If you aren't getting good service or

being treated with respect then why keep seeing the same doctor? If you

walked into a restaurant and were greeted rudely, mocked for your poor

wine selection, and the food was cold when it should have been hot,

would you go back to the same restaurant?

Kris

Becca wrote:

>>What is the benefit to making your child sick so you can

get a diagnosis? I know that you can take a tax

>>deduction if you are a Celiac but is it really worth it?

Perhaps I am missing something here? If a GF diet makes your family

feel better than

>>why not do it?

Ummm....I didn't mention this, but the allergist is really on my case

about ds eating wheat. We told him about his problems and that we

think he is having abdominal pains. He looks at skin testing and

declares, "He is not allergic, so wheat is fine!" He also says that

since it is latent, it isn't an issue. Finally, he thinks it is his

age. Bah!! This child is soooooo happy when he is gluten free. He

has a totally different personality eating wheat. The allergist thinks

it is in my head. I never believed that foods could effect a

child. But I am a firm believer now. I do get the feeling that as an

allergist, he feels a great sense of accomplishment if he gets kids

eating stuff. They also talk about the hassel and cost. To me that is

nothing. I make all his treats, buy flours at the Asian and Indian

market and only buy bread, pasta, and cereal since these are difficult

for me to make without dairy and eggs. I honestly don't think it is an

allergy. I do believe that if it isn't Celiac it is a gluten

intolerance. I have no issues with school since I homeschool. I would

have had him tested long ago, but I read many things about Celiac,

gluten intolerance, and wheat allergy overlapping and looking very

similar at a young age and that testing was not definitive until past

two. It also would be a good thing to know if this is something he

needs to do rather than a suspicion. Believe me...I had plans. If I

saw any sign of the rash, we were going to go to get a biopsy. ASAP

If I grew concerned about his weight, we were going to the ped. You

see, I have this kid that can't speak to me and tell me for sure what

is going on. I have a dr pressuring me to give him wheat. It makes me

feel like a Munchausen mom who is making stuff up What else am I

supposed to do? If I could afford genetic testing, I would do it in a

heartbeat!! I feel already like I am stuck in limbo land. I

certainly don't look at my ds as a possible tax deduction. That is

really an unfair assesment. Oh, and there are drs who still have their

patients do a period of eating gluten after going gf to confirm

diagnosis. So please don't criticise us for a two day failed trial and

thinking of repeating the trial due to pressure from physicians when

physicians who should know better are STILL doing it.

Becca

[Guest guest]

They don't hide peanuts in other foods. Most times school projects aren't done involving peanuts. Everyone can recognize peanut butter or peanuts. You'd be amazed how many people just don't realize something is wheat. I actually had someone tell me, but noodles don't have wheat in them...they're just flour eggs and water. They church did a project that involved flour, and my son came out with flour all over him, just from stirring the flour. I think making it official makes them more aware. Just think how hard it is for us to not cross contaminate, or look for miniscule amounts of gluten in a product, and we know what we're dealing with. I dread my younger one getting the diagnosis...although I should dread him less since he's more mentally capable of defending himself.

--loriann aka Victree the Christian clown

-------------- Original message --------------

Hi Becca,I'm very sorry if my post came across as being snide, that wasn't my intention at all. I hate that e-mail can't convey tone of voice and can be so easily miss-interpreted. The tax deduction thing was just the only reason I know of that would require a medical doctors diagnosis as proof. I was just asking a question and wasn't trying to imply anything to you or anyone else. I am very confused about all the posts about schools and needing to fill out forms and such. I have never heard of kids with peanut allergies having to fill out special forms or needing a doctors note as "proof" that you have the allergy. My nephew has nut allergies and it's just something my sister-in-law made the school aware of and since no one wants a kid going into anaphylactic shock at school everyone is careful about it. So why all these special forms for kids with Celiac?I am also confused by posts lately that are talking about going back to eating wheat for weeks or mont

hs at a time so that people can get blood work and biopsies done. It just seems to me that if you do better off of gluten then don't eat it. I have been on WW for over four years and don't need a doctor (or anyone else for that matter) telling me how I should eat. I have had several family members say to me "why are you still doing WW you are thin now?" Well maybe because if I didn't continue to eat healthy I would go back to being fat...duh!! I do of course realize that it is very different when we are talking about children and what they are being fed. Perhaps I am looking at it all wrong but I see it like this...If I "think" have lead poisoning from the pipes in my house and I change all the pipes in the house and my illness goes away, I sure as heck wouldn't eat some more lead and go in for blood work to "make sure" that it was the lead making me sick. I realize that may seem like an over exaggeration but given how much pain my husband has been in for the past three

months it sure seems like he was being poisoned by the gluten. I can however see doing it for a day or so just to confirm your suspicions but putting a child through weeks of pain just seems cruel to me. And maybe not everyones reactions to gluten are as severe as others and a month of eating wheat may not be so much painful as it is annoying.As for your doctors reaction I would say it might be time to find a new doctor. You know better than anyone how you are feeling and how your children are feeling since you are around them constantly. If your doctors aren't taking your suggestions to heart or seem to be gaffing you off without giving you sound reasoning I would ditch them. For instance I went into my doctor and asked her if she could test me for thyroid problems. She asked why and I told her I had a family history and that I had a couple symptoms that were probably nothing but could be related. She said it sounded reasonable and had me tested. Had she told me I was ove

rreacting and my symptoms were nothing I would have gotten upset. If she told me my symptoms were not indicative of thyroid problems and why she felt I was way off in my assessment I probably would have listened to her. My point being you need to listen to your gut instincts. If you really feel you aren't getting good medical attention then find another doctor.I think a lot of people tend to think of Doctors as "All Knowing" (not saying this about you or anyone in specific) and they seem to forget that they are just normal people with a specialized education. They aren't always right in their diagnosis and if you don't like what one has to say or how they treat you then find another one. I worked for years in doctors offices and it always surprised me what people would put up with from a doctor. I think people fail to realize that Doctors are there to provide a service. If you aren't getting good service or being treated with respect then why keep seeing the same doctor? If

you walked into a restaurant and were greeted rudely, mocked for your poor wine selection, and the food was cold when it should have been hot, would you go back to the same restaurant?KrisBecca wrote:

>>What is the benefit to making your child sick so you can get a diagnosis? I know that you can take a tax >>deduction if you are a Celiac but is it really worth it? Perhaps I am missing something here? If a GF diet makes your family feel better than >>why not do it?Ummm....I didn't mention this, but the allergist is really on my case about ds eating wheat. We told him about his problems and that we think he is having abdominal pains. He looks at skin testing and declares, "He is not allergic, so wheat is fine!" He also says that since it is latent, it isn't an issue. Finally, he thinks it is his age. Bah!! This child is soooooo happy when he is gluten free. He has a totally different personality eating wheat. The allergist thinks it is in my head. I never believed that foods could effect a child. But I am a firm believer now. I do get the feeling that as an allergist, he fee

ls a great sense of accomplishment if he gets kids eating stuff. They also talk about the hassel and cost. To me that is nothing. I make all his treats, buy flours at the Asian and Indian market and only buy bread, pasta, and cereal since these are difficult for me to make without dairy and eggs. I honestly don't think it is an allergy. I do believe that if it isn't Celiac it is a gluten intolerance. I have no issues with school since I homeschool. I would have had him tested long ago, but I read many things about Celiac, gluten intolerance, and wheat allergy overlapping and looking very similar at a young age and that testing was not definitive until past two. It also would be a good thing to know if this is something he needs to do rather than a suspicion. Believe me...I had plans. If I saw any sign of the rash, we were going to go to get a biopsy. ASAP If I grew concerned about his weight, we were goin

g to the ped. You see, I have this kid that can't speak to me and tell me for sure what is going on. I have a dr pressuring me to give him wheat. It makes me feel like a Munchausen mom who is making stuff up What else am I supposed to do? If I could afford genetic testing, I would do it in a heartbeat!! I feel already like I am stuck in limbo land. I certainly don't look at my ds as a possible tax deduction. That is really an unfair assesment. Oh, and there are drs who still have their patients do a period of eating gluten after going gf to confirm diagnosis. So please don't criticise us for a two day failed trial and thinking of repeating the trial due to pressure from physicians when physicians who should know better are STILL doing it.Becca

[Guest guest]

I agree, I have only been GF since Feb. but it never ceases to amaze me

some of the stupid thing people say to you. One person I was trying to

explain it to, when I said it was a autoimmune disorder asked me if it

was like AIDS and could they catch it. The level of ignorance is

unbelievable sometimes.

>

> Some school systems are sticklers for that official diagnosis. If

you have young children, play dough as wheat in it.....they do art

projects with noodles all the time, or cheerios, etc. They have school

parties with cupcakes, cake, etc. Not to mention the school lunch

issue. I had a special needs child and told them (even with the

official diagnosis) and one of his teachers gave him carrot cake!

Didn't know there was wheat in flour! The level of stupidity would

amaze you. When you have the official diagnosis, they HAVE to pay

attention to how the lunches are labeled, making sure no other kid

throws a cookie on his lunch, thereby rendering it un-eatable, etc.

>

> --

> loriann aka Victree the Christian clown

>

[Guest guest]

Hi Becca - When I read your post, this is the line that really stood

out for me, and I just wanted to remind you that the tests really only

rule it IN (when positive). Negative test results for Celiac don't

necessarily rule it out. That is the trickiest part of diagnosing

this disease. It's also the worst part of the propect of doing a

gluten challenge. You still may not know for sure. The only thing

that really rules it out is if the gene test is negative.

Sue in Denver

>

> I don't know if it is Celiac, but I at least want to rule it out.