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skikat

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skikat Apprentice
skikat
Posted

Hello-

My son is almost 11 months old and seems to have a "gluten allergy"? although, bloodtests for food allergies all came back negative, as well as celiac disease. Is he too young for these things to show up now? How often should he be tested? Is there a difference between allergy and intolerance?

I've started the gluten-free/CF diet 2 weeks ago and seen a dramatic improvement. He is on Neocate formula and it has been a miracle. But, I am confused that all his tests are negative from the pediatrician. He had a swallow study because of problems with textures, but is doing better.

Is this an immune dysfunction? I keep reading about this. What kinds of testing is there to screen for this area? I am concerned about his one-year shots coming up.

Can anyone recommend a support group in the Middle Tennessee area, or a web-site I can go to? I am not getting any guidance from our pediatrician group. They think I am crazy. Please help!

A.L.S.

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Lisa Mentor
Lisa
Posted
Hello-

My son is almost 11 months old and seems to have a "gluten allergy"? although, bloodtests for food allergies all came back negative, as well as celiac disease. Is he too young for these things to show up now? How often should he be tested? Is there a difference between allergy and intolerance?

I've started the gluten-free/CF diet 2 weeks ago and seen a dramatic improvement. He is on Neocate formula and it has been a miracle. But, I am confused that all his tests are negative from the pediatrician. He had a swallow study because of problems with textures, but is doing better.

Is this an immune dysfunction? I keep reading about this. What kinds of testing is there to screen for this area? I am concerned about his one-year shots coming up.

Can anyone recommend a support group in the Middle Tennessee area, or a web-site I can go to? I am not getting any guidance from our pediatrician group. They think I am crazy. Please help!

A.L.S.

Open Original Shared Link

Here is a link to Tennessee Support.

There are many moms with young children with Celiac or gluten allergies here. I am sure that they will be here soon.

Ridgewalker Contributor
Ridgewalker
Posted

Well, I think this website and forum is really the best place to be. The members here are active, helpful, and knowledgeable!

Allergies are not the same thing as intolerances.

Celiac is not an allergy, but an autoimmune dysfunction triggered by gluten.

It is possible to be both Celiac and allergic to wheat, but they are two different conditions.

You can also have non-Celiac gluten intolerance brought on by other medical conditions.

The blood tests for Celiac have a significant rate of false negatives, no matter what you read in medical journals. Real world observances do not agree with the research studies. The rate of false negatives goes up a LOT with small children.

In addition, once you've gone gluten-free, blood tests are useless. These tests look for antibodies, and once you go gluten-free your body stops producing so many antibodies to gluten.

There is a new type of testing that tests stool instead of blood. These tests claim accuracy up to one year after going gluten-free. One lab that does these tests is www.enterolab.com

Some drawbacks to the stool testing is that: insurance rarely will cover it, the tests are not what I'd call cheap, the doctors who developed the tests have not published their studies for peer review, and many doctors do not yet accept them as valid.

Some pros for stool testing include: the long accuracy time after going gluten-free, Enterolab does not require a doctors orders, you can order the tests yourself, schools and daycares will often accept the results, and some doctors do accept them or at least take them into account.

If his tests came up negative to begin with, there's no benefit in retesting after going gluten-free. But if he's doing so much better on the gluten-free diet, that's a good thing!!!

Keep asking questions- this is the best place to be!

skikat Apprentice
skikat
Posted
  • Author
Well, I think this website and forum is really the best place to be. The members here are active, helpful, and knowledgeable!

Allergies are not the same thing as intolerances.

Celiac is not an allergy, but an autoimmune dysfunction triggered by gluten.

It is possible to be both Celiac and allergic to wheat, but they are two different conditions.

You can also have non-Celiac gluten intolerance brought on by other medical conditions.

The blood tests for Celiac have a significant rate of false negatives, no matter what you read in medical journals. Real world observances do not agree with the research studies. The rate of false negatives goes up a LOT with small children.

In addition, once you've gone gluten-free, blood tests are useless. These tests look for antibodies, and once you go gluten-free your body stops producing so many antibodies to gluten.

There is a new type of testing that tests stool instead of blood. These tests claim accuracy up to one year after going gluten-free. One lab that does these tests is www.enterolab.com

Some drawbacks to the stool testing is that: insurance rarely will cover it, the tests are not what I'd call cheap, the doctors who developed the tests have not published their studies for peer review, and many doctors do not yet accept them as valid.

Some pros for stool testing include: the long accuracy time after going gluten-free, Enterolab does not require a doctors orders, you can order the tests yourself, schools and daycares will often accept the results, and some doctors do accept them or at least take them into account.

If his tests came up negative to begin with, there's no benefit in retesting after going gluten-free. But if he's doing so much better on the gluten-free diet, that's a good thing!!!

Keep asking questions- this is the best place to be!

skikat Apprentice
skikat
Posted
  • Author

Thank you so much for all the information. We ordered our "kit" from eneterolab and will keep you posted!

loraleena Contributor
loraleena
Posted

It is my understanding that before age 2 the celiac test is not very accurate. In my opinion an elimination such as what you did is all the proof you need to at least show gluten intolerance.

SandraD1971 Newbie
SandraD1971
Posted

Celiac Disease is in fact an autoimmune disorder and there are definitive tests to determine if your child has celiac.

First, there is a blood screen. If the results show positive, the definitive test includes a biopsy of the small intestine.

If he has an alergy - this is different and I am not sure how they test.

If your child appears to be doing better on the gluten free diet - I recommend finding a new doctor or going to a specialist (GI doctor) for a second opinion. Perhaps your child has an alergy to a food that is often combined with gluten?

The risk of changing your childs diet without a conclusive test will make it difficult to validate the exact cause. For example, if he has an alergy to a food that is often joined with Gluten you may be restricted his diet more than is necessary,

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