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Well, Some Tests Are+

pricklypear1971

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pricklypear1971 Community Regular
pricklypear1971
Posted

Doctor just called and some of my son's Celiac panel is positive.

Mother effer. Not what I wanted to hear for him.

I'll get more info next week.

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Roda Rising Star
Roda
Posted

Well at least you will be able to support him. I found at first having a child with celiac more challenging than just myself. Now that the youngest one has been gluten free for a year it is a lot easier. He has really come around and has accepted it. He is a trooper. He will be 7 tomorrow and navigates pretty good for a little guy. Keep us posted on what else you find out. HUGS!

pricklypear1971 Community Regular
pricklypear1971
Posted
  • Author

Thanks.

This is further complicated by him having Thalassemia trait (it's assumed trait, dx is by elimination and a group of nonspecific tests). He also appears anemic , which can also be Celiac (or Thalassemia). I'm wondering if we need a genetic test for that now, too.

Sigh.

Di2011 Enthusiast
Di2011
Posted

Thinking of you pricklypear :( From what I have just read Thalassemia is even less known, undiagnosed etc than celiac/gluten intolerance. I hope you have a good doc to help through the coming days/weeks/months. You remember to get those test results and publish here. "some" positive sounds like positive yes?

pricklypear1971 Community Regular
pricklypear1971
Posted
  • Author

Thinking of you pricklypear :( From what I have just read Thalassemia is even less known, undiagnosed etc than celiac/gluten intolerance. I hope you have a good doc to help through the coming days/weeks/months. You remember to get those test results and publish here. "some" positive sounds like positive yes?

Thanks. Thal trait is actually very common. But it is dangerous not to know you have it since it can mess with bloodwork and you appear anemic. It makes the Celiac thing a nightmare...since you don't really know of you're anemic and absorbing it is an issue. There's a genetic test for the trait and I think we need to do it so we know exactly what we're dealing with. Giving a Thal person iron can be deadly if it's not needed. Unbelievably, he's a very difficult case....

I don't know what came back +, if it's iga only then it could be an autoimmune reaction or another intolerance. We are doing an endoscopy and now have to find a doc, plus keep him on gluten which is a challenge since its school break and he's "gluten light" or gluten-free now at home.

His genetic test was mildly suggestive if Celiac genes - dont don't know if I gave him everything I have or if hubs contributed something.

pricklypear1971 Community Regular
pricklypear1971
Posted
  • Author

Well, today is the doctor's appt. I am awake at 3:30 am and my brain is going 20o mph.

We haven't told him where we're going or that a test is +. We've been discussing what to do, and thinking of the challenges ahead. So, we have headaches.

Y'all will love this one - my stepson is on town and has shown up sick/recently ill AGAIN. Talks about throwing up, getting sick a lot. Still has constant mouth ulcers. And says wheat products make him feel weird and doesn't like them. WTF????????

We always assumed stomach upset was milk with him - he was truly allergic as a small child. Now he just has a problem with lactose (according to him).

But after being around him for 2 days he spends half his life on "urgent" bathroom visits.

I mean holy crap. Seriously?????

This kid developed migraines as a teenager, and a jaw bone deformity, and is skinny as a rail and shorter than expected based on childhood size (he was a tall, well built kid and now he's skinny and just not physically "balanced" - hard to describe other than you'd never think childhood pics of him were him....

I'm just rambling but anyway you get the picture. It's just been a slap in the face.

frieze Community Regular
frieze
Posted

Well, today is the doctor's appt. I am awake at 3:30 am and my brain is going 20o mph.

We haven't told him where we're going or that a test is +. We've been discussing what to do, and thinking of the challenges ahead. So, we have headaches.

Y'all will love this one - my stepson is on town and has shown up sick/recently ill AGAIN. Talks about throwing up, getting sick a lot. Still has constant mouth ulcers. And says wheat products make him feel weird and doesn't like them. WTF????????

We always assumed stomach upset was milk with him - he was truly allergic as a small child. Now he just has a problem with lactose (according to him).

But after being around him for 2 days he spends half his life on "urgent" bathroom visits.

I mean holy crap. Seriously?????

This kid developed migraines as a teenager, and a jaw bone deformity, and is skinny as a rail and shorter than expected based on childhood size (he was a tall, well built kid and now he's skinny and just not physically "balanced" - hard to describe other than you'd never think childhood pics of him were him....

I'm just rambling but anyway you get the picture. It's just been a slap in the face.

how old is stepson? and remember that he could have gotten the genes(if he is indeed celiac) from his mom. good luck

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pricklypear1971 Community Regular
pricklypear1971
Posted
  • Author

So, an update...

Genetics: he didn't get my half Celiac gene but did get a half gene from Dad. He got my half Dq8 "autoimmune risk gene" and my weird half dq2 gene that I never see mentioned anywhere.

Celiac panel: negative and he isn't iga deficient.

Vitamin panels - deficient in D, low C, and K may be low ( he wasn't fasting, will need to retest).

General metabolic panels, etc. suggest he was starting to get sick (he did have a virus 6-7 days after blood work was drawn), and possible digestive issues (perhaps beginning of leaky gut).

So, we're going to try specific supplaments for 3 months or so, a month gluten-free, milk free trial in March during a school break, and take it from there.

His iron/ferritin is consistent with Thalassemia trait B - his iron stores are low normal....

So, no scope for now. Just a trial in March and more blood work to check deficiencies and then more Celiac bloodwork in a year.

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