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Disney323

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Disney323 Apprentice

...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
...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

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
...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
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
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
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

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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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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