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Worriedtodeath

Those Of You On A gluten-free Diet And Retested

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Forgot to say that the Gluten-free Casein-free diet has been a miracle and that she has had the greatest height AND weigth increase in over a year according to the ped. THe diet is working and working great. Hubby and the ped would like a REASON now as to WHY and one that can be confirmed and duplicated and you know how scientists are. There is always a reason and that reason should be reproduced without fail. I say that is a pipe dream with this disease and unobtainable.

Thanks

Stacie

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Hubby is just concerned that we are missing what really caused her to be sick and that perhaps gluten really wasn

Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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That's what I've tried to explain to hubby. If it is something else, then wouldn't it still be here somewhere??? Wouldn't we still have tummy issues or something to indicate that gluten isn't the cause? You don't remove gluten, have a 100% improvement and no other issues at all and it not be gluten. That's why I thought of the panel test. If other drs use it somehow then maybe we can too. I know our gi won't so I have to find someone else for the ped to listen to. OR deal with this everytime we go to the ped.

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The problem is this can go on forever.

There are plenty of biopsy positive people who got told they would "grow out of it" ...

Baby has had 2 panels one in the very beginning that was ridiculously low and the other when on wheat 80 days that was higher but still not anywhere close to positive numbers. Her very old school gi says you should have IGG and IGA and ttg readings

Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Good Lord that is horrible! I would never be able to do that. CC alone should be enough to let you know you still have a problem or at least with us it does. I just wish I had something with what we all ready have that could be of use somehow. I did discover my old upper and lower gi's presented with what now would be considered early Celiac's but way back in the dark ages no one took samples and no one had ever heard of gluten to make that dx.

Hopefully someone will begin develop a new "normal" for babies in those biopsies.

Thanks

Stacie

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You'd have to feed that kid gluten for a looonnnngg time to hope to get a positive now. Like a year or two??? It's stupid to make anyone sick for a long period of time just for an official test. Especially a kid who is still growing and developing right now. You could try enterolab testing - that's still good for up to a year after going gluten-free. Otherwise you could do a gene test - it won't confirm or eliminate celiac, but if she does have one of the known genes, maybe that's enough to convince your husband?


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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This is what I think based on my personal experiences!

I would continue with your daughter's gluten-free diet! Her growth and development depend on her body's ability to absorb nutrients, if she happy, healthy and growing normally than you should not change anything! Maybe at another time in her life when growth and development are not so critical, you could investigate finding an official diagnosis!

My children have growth delay problems and I know that they would be sooooo much healthier if we had just known about Celiac disease about ten years ago!


Sandra

two children with Celiac disease, ages 13 and 17. Celiac diagnosis

through blood tests and biopsies.

gluten free (or at least trying) Nov. 2006

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You'd have to feed that kid gluten for a looonnnngg time to hope to get a positive now. Like a year or two??? It's stupid to make anyone sick for a long period of time just for an official test. Especially a kid who is still growing and developing right now. You could try enterolab testing - that's still good for up to a year after going gluten-free. Otherwise you could do a gene test - it won't confirm or eliminate celiac, but if she does have one of the known genes, maybe that's enough to convince your husband?

It seems to methat since babies are growing so quickly they repair much more quickly. As we get older our repair system slows down but for a baby the damage may repair as fast as it is made. This means the biopsy is much more tricky since the villi are repairing as fast as they are damaged and its much more tricky (need more luck) to find them damaged.. . This doesn't mean however damage is not being done.

As kbtoyssni say's this is such a critical time ... whymes about and take risks?


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Yeah, I "know" how scientists are. <_<

In science, one observes a condition.

One comes up with a hypothesis as to what could be the cause of the condition.

The hypothesis is based on observations of other things

The hypothesis is tested out by experimenting

The results are noted

If the hypothesis is correct, the testing situation shows that changing something A has result B

If the hypotheis is not correct, the testing situation shows that changing something A has had no change

(there is a margin of error or a tolerance of + or - , but we won't go into that detail much now )

It is important for the other variables not to change during the experimental testing

it is important to document the changes that were observed

If it were just a scientific test, then the results should be able to be documented in other situations, if the test was being used to prove a theory

If the theory is already proven, and the results documented, them running the test again trying to disprove the observed result, or verify the result further, is okay if you're talking about scientific inquiry for the sake of research but really rather stupid if you're talking about the health status of a very small child.

go back to, it is important to document the changes that were observed.

Sounds like somebody missed that part, so I'd be asking him what his "issues" are.

The doctors just exist to run tests, and he's stuck in that rut of trying to generate revenues by ordering tests over and over again. Whether or not he is capable of making a correct diagnosis will not make your child have or not have a gluten sensitivity, the two things are not cause and effect no matter what. Gluten sensitivity is not the same thing as full blown Celiac. It takes different individuals different amounts of time to develop full blown auto immune disease from the time of initial exposure to wheat, rye, and barley glutens. This is because of many factors, such as their genes, enviroment, triggering infections, exposures, type of diet consumed, etc.

Your child is only 2.

Some people go for decades before their symptoms become acute enough for test results to show antibodies and damaged intestines.

It's been decades since I learned this "science" stuff and I just typed it all down from memory, so I may have not listed it in the perfectly correct jargon, but you get the idea.

There is one more thing to note. The current treatment, just eliminating gluten from the diet, has absolutely no harmful side effects whatsoever, other than the nuisance factor in terms of interacting with others in public. That and having to be careful in the home of cross contamination.

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