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Disney323

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Disney323 Apprentice
Disney323
Posted

...dr. says our 17 month old son doesn't have celiac. He had a biopsy 10 days ago. He feels this could be a milk allergy. Our son was on hypoallergenic formula from 4weeks until 1 yr. becuase he had reactions to the milk. He ran more blood tests today for other foods because he feels this is a food allregy. Our son has damage in his small bowel and his esophogus. We have to have him dairy free for 2 weeks, if no improvement then on prilosec. Any thoughts about this? Could it still be celiac? (he tested high on one of the blood tests, but not the serum or ttga)

Andrea

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confused Community Regular
confused
Posted
...dr. says our 17 month old son doesn't have celiac. He had a biopsy 10 days ago. He feels this could be a milk allergy. Our son was on hypoallergenic formula from 4weeks until 1 yr. becuase he had reactions to the milk. He ran more blood tests today for other foods because he feels this is a food allregy. Our son has damage in his small bowel and his esophogus. We have to have him dairy free for 2 weeks, if no improvement then on prilosec. Any thoughts about this? Could it still be celiac? (he tested high on one of the blood tests, but not the serum or ttga)

Andrea

Which blood test was high, was it the IgG?

And what new blood test did he run for food allergies?

paula

Disney323 Apprentice
Disney323
Posted
  • Author

Hi Paula,

I believe it was the Igg or the IGA. Honestly, I've had so many things thrown at me I don't know which end is up. He is running tests for milk, whey, wheat, fruits. and a lot more that I just don't know of. IGE too which I believe is for milk. Thanks for writing.

shayesmom Rookie
shayesmom
Posted
...dr. says our 17 month old son doesn't have celiac. He had a biopsy 10 days ago. He feels this could be a milk allergy. Our son was on hypoallergenic formula from 4weeks until 1 yr. becuase he had reactions to the milk. He ran more blood tests today for other foods because he feels this is a food allregy. Our son has damage in his small bowel and his esophogus. We have to have him dairy free for 2 weeks, if no improvement then on prilosec. Any thoughts about this? Could it still be celiac? (he tested high on one of the blood tests, but not the serum or ttga)

Andrea

The biopsy can only rule Celiac IN, it can never rule it OUT.

No matter what the results are, I would also follow up with an elimination diet in conjunction with keeping a food journal. It truly is the most accurate way of figuring out food issues.

Also, there are plenty of people out there who are gluten-sensitive and yet will never test positive for Celiac Disease....they just don't have the genes predisposing them to celiac disease. And yet, if you remove gluten from diet, they improve dramatically. This is one of those grey areas where you may have to follow through with your own methods of "testing" and rely on what you are actually observing. It's not an ideal situation (as compared with official doctor diagnosis), but it will give you accurate results.

Of course, this is all up to you to decide on how to proceed. Personally, I'd be worried about a prescription for Prilosec considering it can block calcium absorption and has been linked to osteoporosis in older people. There isn't any information on how it affects bones in young children. If it were me, I'd follow up with further allergy tests and dietary trial before committing to medication. Perhaps you can talk to your doc about following through with an elimination diet and having him also observe any changes.

With small bowel damage, the culprits are usually gluten, dairy, soy and/or corn. That's not to say that other food allergies couldn't be present....just that these foods are most commonly linked to small bowel damage.

2boysmama Apprentice
2boysmama
Posted
Also, there are plenty of people out there who are gluten-sensitive and yet will never test positive for Celiac Disease....they just don't have the genes predisposing them to celiac disease. And yet, if you remove gluten from diet, they improve dramatically.

This is us to a "T" (in fact Vicky was the one who helped me finally figure that out! LOL). Removing gluten from our diets has improved our health in SO many ways - and yet we don't carry the genes for celiac disease - "only" for gluten sensitivity.

pwalasik Newbie
pwalasik
Posted
This is us to a "T" (in fact Vicky was the one who helped me finally figure that out! LOL). Removing gluten from our diets has improved our health in SO many ways - and yet we don't carry the genes for celiac disease - "only" for gluten sensitivity.

What are the genes that indicate gluten sensitivity versus the genes that indicate possible predisposition for Celiac Disease? Thank you for any information regarding genes/ HLA typing.

shayesmom Rookie
shayesmom
Posted
What are the genes that indicate gluten sensitivity versus the genes that indicate possible predisposition for Celiac Disease? Thank you for any information regarding genes/ HLA typing.

Celiac Disease genes (as recognized in U.S.)

HLA-DQ2

HLA-DQ8

(Celiac genes recognized in other countries but not in U.S.)

HLA-DQ9

HLA-DR3

HLA-B8

HLA-DQ7

Gluten sensitivity genes

HLA-DQ1

HLA-DQ3

HLA-DQ5

HLA-DQ6

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Christine E Newbie
Christine E
Posted

From what I've read, children under three generally do not have positive blood tests because their immune systems are not fully developed until around age three. My son has gene DQ2, and the diet was successful at 13 months, but he has never had a positive blood test. His endoscopy showed "changes" in the cilia.

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      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
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      Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?
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