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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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    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      High DGP-A with normal IGA

      By trents · Posted

      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      My genetic test results have arrived - I’m homozygous for DQB1*02, meaning I have HLA-DQ2. I’ve read that this is one of the genes most strongly associated with celiac disease, and my symptoms are very clear. I’m relieved that the results finally arrived, as I was getting quite worried since my symptoms have been getting worse. Next step, blood test. What do these results imply? What should I tell my family? I’m concerned that this genetic predisposition might also affect other family members.
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      Two months. In extreme situations like this where it’s clearly a smoking gun? I’m in LA so went to a very big hospital for pcp and gi and nutritionist 
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