clarification

[Guest guest]

Liz,

It is my understanding that the blood tests can only indicate the

possibility of celiac. My daughter's blood tests came back negative

twice and finally I had to beg for a biopsy. Her biopsy came back

positive and she is thriving on the gluten-free diet. After the

biopsy the Dr admitted that the blood tests are capable of both

false positives and negatives. Enterolab has a pretty good summary

of why this is if you are interested in reading it. You can find it

on their website at http://www.enterolab.com/Essay/ My advice is if

he reacts to gluten then there is probably a reason.

Good Luck

Jonyce

[Guest guest]

Liz,

my son was dx with gluten intolerance in July, but the blood test showed "neg ative for celiac". After I went back to the doctor and asked how this could be, she told me that some doctors would order a biopsy based on the elevated gluten results, but others would say, just go gf. She recommended that we re-do the blood test in January to see if his gluten numbers have gone down. If we have, then we know we're treating it the right way.

I struggle with that choice all the time. It would be so much easier to say "You have a disease" rather than an intolerance. She also indicated that the blood test may have not shown damage to the intestine as of yet, because we're treating it before the condition is severe. I question that because he's had symptoms since he was about 5 months old (he's almost 5 now).

Long story shorter, we've opted to go to the dermatologist in hopes of getting a confirmed dx there. I believe that his skin condition is actually the related dermatitis herpetiformis. If that is the case, they biopsy the skin and confirm. He doesn't have to do a gluten challenge at all.

Go with your gut. If you want the diagnosis, then get it. Otherwise, if you know that he's gluten intolerant, then treat it like Celiac. I tell people that this is what he has, because, in my heart of hearts, I know he does. The gluten numbers were too high to mean nothing. And he's gained weight for the first time in over two years!

Becki

Re: Clarification

Liz,It is my understanding that the blood tests can only indicate the possibility of celiac. My daughter's blood tests came back negative twice and finally I had to beg for a biopsy. Her biopsy came back positive and she is thriving on the gluten-free diet. After the biopsy the Dr admitted that the blood tests are capable of both false positives and negatives. Enterolab has a pretty good summary of why this is if you are interested in reading it. You can find it on their website at http://www.enterolab.com/Essay/ My advice is if he reacts to gluten then there is probably a reason.Good LuckJonyce

[Guest guest]

I struggle with that choice all the

time. It would be so much easier to say "You have a disease" rather

than an intolerance. She also indicated that the blood test may have

not shown damage to the intestine as of yet, because we're treating it

before the condition is severe. I question that because he's had

symptoms since he was about 5 months old (he's almost 5 now).

I know it seems like because he has had symptoms pretty much all his

life that he should have lots of damage, but the reality is that

everyones body handles gluten differently. I have had symptoms since I

was a baby and I am 32. It took me until I was 31 to finally get the

doctors to test me and then since I had periodically (in the few years

before my biopsy) been on the gluten free diet I did not show much

damage. This is what I have learned in the past few years studying all

the research I could get my hands on involving the intestinal biopsy

and the intestines. The lining of the intestine heals fairly quickly

for most people, so the damage might not be visible if the lining has

had time to heal. And each time you are gf for more than a few days it

heals enough that you have to consume a lot of gluten for a long time

to cause the damage to be bad again. So your doctor is right. If

there were times during you sons life that he would avoid gluten, due

to illness or dislike of food, then the chances are that they have gone

through a healing/damage/healing process that might not show enough

damage to be conscidered "Celiac Disease". Regardless of whether they

call it a "disease" or a "food intolerance" it is basically the same

thing. Celiac Disease is just a severe form of gluten intolerance and

the treatment is the same for both. I am going through a similar thing

with my own children and myself. Since my biopsy was negative, but my

Enterolab showed positive for the genes and antibodies, I put myself on

the diet. My GI doctor has pretty much brushed me off. My children's

doctor is more like yours. He did not want to put them through the

biopsy given that their antibody levels were not very high and it might

not show damage, but since they all improved on the diet, he is

supportive of me keeping them on it and he is monitoring their

progress. They do not technically have CD either, but they are gluten

intolerant and I am not willing to let them suffer through a lifetime

of ailments just to discover they have CD later in life. I went

through that and although my symptoms got progressively worse through

the years, I still did not show enough damage for an official diagnosis

of CD! If I ever accidently get enough gluten for my DH to return,

then I am considering the dermatologist route, too. But I will never

go purposefully back on gluten for anyone or any test again. It took

me a good 6 months to feel better after the 2 month gluten challenge I

did. It was horrible. By the end of it I couldn't eat anything but

rice and chicken and even that hurt...

God bless,

nn

[Guest guest]

nne, I agree. A mother knows how her children react, despite what doctors say. My mother drug me from one doctor to another from 13 to 18 because of severe allergies and that horrible, blistery,weepy rash that was all over my face, arms and legs. The dermatologist, after allergy testing, decided I had an allergy to wheat and put me on a wheat free diet--for only three weeks. He took me off the diet because I was so painfully thin and losing weight. Fifty some odd years later I finally had a diagnosis of Celiac and dermatitis herpetiformis. Over the years many doctors wrote me off as a hypochondriac. I only wish my mother could have lived long enough to hear the real diagnosis, because I truly believe it was hers also. Believe in yourselves and your ability to know something is wrong with your child. Shirley in San Diegofernandofamily@... wrote:

I struggle with that choice all the time. It would be so much easier to say "You have a disease" rather than an intolerance. She also indicated that the blood test may have not shown damage to the intestine as of yet, because we're treating it before the condition is severe. I question that because he's had symptoms since he was about 5 months old (he's almost 5 now).I know it seems like because he has had symptoms pretty much all his life that he should have lots of damage, but the reality is that everyones body handles gluten differently. I have had symptoms since I was a baby and I am 32. It took me until I was 31 to finally get the doctors to test me and then since I had periodically (in the few years before my biopsy) been on the gluten free diet I did not show much damage. This is what I have learned in the past few years studying all the research I could get my hands on involving the

intestinal biopsy and the intestines. The lining of the intestine heals fairly quickly for most people, so the damage might not be visible if the lining has had time to heal. And each time you are gf for more than a few days it heals enough that you have to consume a lot of gluten for a long time to cause the damage to be bad again. So your doctor is right. If there were times during you sons life that he would avoid gluten, due to illness or dislike of food, then the chances are that they have gone through a healing/damage/healing process that might not show enough damage to be conscidered "Celiac Disease". Regardless of whether they call it a "disease" or a "food intolerance" it is basically the same thing. Celiac Disease is just a severe form of gluten intolerance and the treatment is the same for both. I am going through a similar thing with my own children and myself. Since my biopsy was negative, but my Enterolab showed positive

for the genes and antibodies, I put myself on the diet. My GI doctor has pretty much brushed me off. My children's doctor is more like yours. He did not want to put them through the biopsy given that their antibody levels were not very high and it might not show damage, but since they all improved on the diet, he is supportive of me keeping them on it and he is monitoring their progress. They do not technically have CD either, but they are gluten intolerant and I am not willing to let them suffer through a lifetime of ailments just to discover they have CD later in life. I went through that and although my symptoms got progressively worse through the years, I still did not show enough damage for an official diagnosis of CD! If I ever accidently get enough gluten for my DH to return, then I am considering the dermatologist route, too. But I will never go purposefully back on gluten for anyone or any test again. It took me a good 6

months to feel better after the 2 month gluten challenge I did. It was horrible. By the end of it I couldn't eat anything but rice and chicken and even that hurt...God bless,nn

[Guest guest]

It just gets frustrating, which is why I call it CD. People hear "intolerant" and they think it's like lactose intolerance, which is really no big deal. What you said about the short times of healing makes some sence, though. Two weeks before his test, we went gf for 7 days thinking that we would just try it out. He was only back on gluten for two days before he was tested. Perhaps he needed more to test positive for CD.

I say that I have it, because I've been so much healthier since going gf. I was sick for years, and thought it was just hormones after having him. Then, out of support to my son, I stopped eating gluten. I wanted to be able look my son in the eye and say that I don't eat gluten either. Low and behold, I got sick as a dog when I cheated! And every time I get an accidental ingestion, that pesky rash flairs up again. It takes about 1 1/2 months to clear up again over a tsp of soy sauce!

Thanks for the input, and sorry about the long response!

Becki

[Guest guest]

Becki, Don't give up soy sauce, try San J wheat free. It is wonderful and doesn't bother sensitive me at all. Shirley in San DiegoBecki wrote:

It just gets frustrating, which is why I call it CD. People hear "intolerant" and they think it's like lactose intolerance, which is really no big deal. What you said about the short times of healing makes some sence, though. Two weeks before his test, we went gf for 7 days thinking that we would just try it out. He was only back on gluten for two days before he was tested. Perhaps he needed more to test positive for CD.

I say that I have it, because I've been so much healthier since going gf. I was sick for years, and thought it was just hormones after having him. Then, out of support to my son, I stopped eating gluten. I wanted to be able look my son in the eye and say that I don't eat gluten either. Low and behold, I got sick as a dog when I cheated! And every time I get an accidental ingestion, that pesky rash flairs up again. It takes about 1 1/2 months to clear up again over a tsp of soy sauce!

Thanks for the input, and sorry about the long response!

Becki

[Guest guest]

How old is your son?

From: RICHARD WHITLEY Sent: Friday, December 10, 2004 1:09 PMTo: SillyYaks Subject: Re: Re: Clarification

Becki, Don't give up soy sauce, try San J wheat free. It is wonderful and doesn't bother sensitive me at all. Shirley in San DiegoBecki wrote:

It just gets frustrating, which is why I call it CD. People hear "intolerant" and they think it's like lactose intolerance, which is really no big deal. What you said about the short times of healing makes some sence, though. Two weeks before his test, we went gf for 7 days thinking that we would just try it out. He was only back on gluten for two days before he was tested. Perhaps he needed more to test positive for CD.

I say that I have it, because I've been so much healthier since going gf. I was sick for years, and thought it was just hormones after having him. Then, out of support to my son, I stopped eating gluten. I wanted to be able look my son in the eye and say that I don't eat gluten either. Low and behold, I got sick as a dog when I cheated! And every time I get an accidental ingestion, that pesky rash flairs up again. It takes about 1 1/2 months to clear up again over a tsp of soy sauce!

Thanks for the input, and sorry about the long response!

Becki

[Guest guest]

Oh we've had great luck with LaChow. I was referring to an accidental Kikumon exposure. No idea that a certain food had soy sauce in the marinade, or that the chicken was marinated at all. It wasn't listed on the menu.

Thanks

Becki

Re: Re: Clarification

Becki, Don't give up soy sauce, try San J wheat free. It is wonderful and doesn't bother sensitive me at all. Shirley in San DiegoBecki wrote:

It just gets frustrating, which is why I call it CD. People hear "intolerant" and they think it's like lactose intolerance, which is really no big deal. What you said about the short times of healing makes some sence, though. Two weeks before his test, we went gf for 7 days thinking that we would just try it out. He was only back on gluten for two days before he was tested. Perhaps he needed more to test positive for CD.

I say that I have it, because I've been so much healthier since going gf. I was sick for years, and thought it was just hormones after having him. Then, out of support to my son, I stopped eating gluten. I wanted to be able look my son in the eye and say that I don't eat gluten either. Low and behold, I got sick as a dog when I cheated! And every time I get an accidental ingestion, that pesky rash flairs up again. It takes about 1 1/2 months to clear up again over a tsp of soy sauce!

Thanks for the input, and sorry about the long response!

Becki

[Guest guest]

He'll be 5 in January.

RE: Re: Clarification

How old is your son?

From: RICHARD WHITLEY Sent: Friday, December 10, 2004 1:09 PMTo: SillyYaks Subject: Re: Re: Clarification

Becki, Don't give up soy sauce, try San J wheat free. It is wonderful and doesn't bother sensitive me at all. Shirley in San DiegoBecki wrote:

It just gets frustrating, which is why I call it CD. People hear "intolerant" and they think it's like lactose intolerance, which is really no big deal. What you said about the short times of healing makes some sence, though. Two weeks before his test, we went gf for 7 days thinking that we would just try it out. He was only back on gluten for two days before he was tested. Perhaps he needed more to test positive for CD.

I say that I have it, because I've been so much healthier since going gf. I was sick for years, and thought it was just hormones after having him. Then, out of support to my son, I stopped eating gluten. I wanted to be able look my son in the eye and say that I don't eat gluten either. Low and behold, I got sick as a dog when I cheated! And every time I get an accidental ingestion, that pesky rash flairs up again. It takes about 1 1/2 months to clear up again over a tsp of soy sauce!

Thanks for the input, and sorry about the long response!

Becki