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What To Do? Not Celiacs?

mama2

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mama2 Apprentice
mama2
Posted

I have celiacs. Runs in my Family. My DD just turned 3 has had many symptoms. Ped sent us to see a GI doc they ran the full pannel...they said came back negitive. However she had a elevated allergen count? Not sure what that means. Anway, was at the Doc with her today for her 3year check-up. DD is on a Gluten light diet because I find it easier to cook gluten-free for all of us (started that after the pannel was done). In the past 5weeks she has been doing great. Her doc thinks just keep her on the gluten light diet for now... if symptoms reappear then go gluten-free. Would like some advice... the only gluten she gets right now is at pre-school snack time. Do I stay gluten-light or go Gluten-free?

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Ursa Major Collaborator
Ursa Major
Posted

The celiac disease tests are extremely unreliable in kids under six, and yield many false negatives. If you have suspected celiac disease, she probably has it. In which case a gluten light diet will keep damaging her bowels until she gets really sick at some point. It would be much better if you just put her on a 100% gluten-free diet, in order to avoid that from happening. You might be surprised how much better she will be when being completely gluten-free, in comparison the being gluten light.

mama2 Apprentice
mama2
Posted
  • Author
The celiac disease tests are extremely unreliable in kids under six, and yield many false negatives. If you have suspected celiac disease, she probably has it. In which case a gluten light diet will keep damaging her bowels until she gets really sick at some point. It would be much better if you just put her on a 100% gluten-free diet, in order to avoid that from happening. You might be surprised how much better she will be when being completely gluten-free, in comparison the being gluten light.

I thought they were inreliable. Had no idea that they were until age six. Is there a such thing as Gluten senceitive?

jen2be2 Explorer
jen2be2
Posted

I just had a gluten-free whose child had a -blood work result but a + biopsy. I think they say that 20% of people who have celiac disease do not have + bloodwork results.

I would look into genetic testing to see if she is a carrier. If so, then if I wanted a for sure answer, then I would consider a gluten challenge with biopsy even if the blood results are -.

mama2 Apprentice
mama2
Posted
  • Author

I just wanted to add my DH also has celiacs in his family too. So my DD has it on both sides.

Ursa Major Collaborator
Ursa Major
Posted
I just wanted to add my DH also has celiacs in his family too. So my DD has it on both sides.

There you go, even more confirmation that she probably has it! And yes, there is such a thing as non-celiac gluten sensitivity. The symptoms are just as bad, the treatment is the same, but test results (other than with Enterolab) will always be negative.

happygirl Collaborator
happygirl
Posted
There you go, even more confirmation that she probably has it! And yes, there is such a thing as non-celiac gluten sensitivity. The symptoms are just as bad, the treatment is the same, but test results (other than with Enterolab) will always be negative.

Actually, the antigliadin IgA or IgG can indicate gluten sensitivity (delayed allergy, intolerance). IgG food allergy/intolerance testing is done by many companies, not just enterolab, and can be done via bloodwork also, and for multiple foods.

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mama2 Apprentice
mama2
Posted
  • Author
Actually, the antigliadin IgA or IgG can indicate gluten sensitivity (delayed allergy, intolerance). IgG food allergy/intolerance testing is done by many companies, not just enterolab, and can be done via bloodwork also, and for multiple foods.

See she also had the food allery test done and did not show any allergies but it did show she had a high allergen level/ count?

Ursa Major Collaborator
Ursa Major
Posted

Gluten intolerance is NOT an allergy, and therefore gluten will never show up in allergy testing. Allergy testing is completely useless to determine gluten intolerance.

mama2 Apprentice
mama2
Posted
  • Author
Gluten intolerance is NOT an allergy, and therefore gluten will never show up in allergy testing. Allergy testing is completely useless to determine gluten intolerance.

Thank you, my DH and I are STRONGLY thinking about 100% gluten-free for our DD. I am also going to have my DH tested for celiacs since he has a family history too.

happygirl Collaborator
happygirl
Posted
Gluten intolerance is NOT an allergy, and therefore gluten will never show up in allergy testing. Allergy testing is completely useless to determine gluten intolerance.

non celiac gluten intolerance (like any food) is often referred to as a "delayed allergy" ... it is not a classic allergy (IgE mediated), but the intolerance. Mainstream labs test for IgG/delayed allergy/food intolerance testing, including Quest labs.

An intolerance will not show up in traditional IgE allergy testing. It can show up in IgG delayed food allergy testing.

Open Original Shared Link

"Delayed Food Allergies/Sensitivities

This type of allergy, often called 'food sensitivities', does not involve IgE antibodies and the release of histamine which cause very obvious symptoms soon after the ingestion of a food. Instead they are the result of IgG antibodies becoming sensitized to certain foods. IgG antibodies don't cause the release of histamine but they do release other immune chemicals designed to inactivate or destroy invaders in the body. These chemicals can cause damage and resulting inflammation to your own body tissues in the process. As a result, they too can cause symptoms, especially if you develop sensitivities to a number of different foods. Symptoms from food sensitivities may appear up to 3 days after the offending food was ingested and last for weeks afterwards. Symptoms are wide ranging and can affect multiple body systems."

mama2 Apprentice
mama2
Posted
  • Author
non celiac gluten intolerance (like any food) is often referred to as a "delayed allergy" ... it is not a classic allergy (IgE mediated), but the intolerance. Mainstream labs test for IgG/delayed allergy/food intolerance testing, including Quest labs.

An intolerance will not show up in traditional IgE allergy testing. It can show up in IgG delayed food allergy testing.

Open Original Shared Link

"Delayed Food Allergies/Sensitivities

This type of allergy, often called 'food sensitivities', does not involve IgE antibodies and the release of histamine which cause very obvious symptoms soon after the ingestion of a food. Instead they are the result of IgG antibodies becoming sensitized to certain foods. IgG antibodies don't cause the release of histamine but they do release other immune chemicals designed to inactivate or destroy invaders in the body. These chemicals can cause damage and resulting inflammation to your own body tissues in the process. As a result, they too can cause symptoms, especially if you develop sensitivities to a number of different foods. Symptoms from food sensitivities may appear up to 3 days after the offending food was ingested and last for weeks afterwards. Symptoms are wide ranging and can affect multiple body systems."

Very interesting website ... learning a lot. My DD has bloating, cramps, D along with contipation (sooooooooo many pooping issues), skin rashes (they NEVER know what causes it, all these come and go... have a hard time pinpointing foods. BUT I can say this since I have been cooking gluten-free she is sooooo much better. So IgG delayed testing is what I should ask to be done?

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