Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Well, Some Tests Are+


pricklypear1971

Recommended Posts

pricklypear1971 Community Regular

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.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Roda Rising Star

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!

Link to comment
Share on other sites
pricklypear1971 Community Regular

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.

Link to comment
Share on other sites
Di2011 Enthusiast

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?

Link to comment
Share on other sites
pricklypear1971 Community Regular

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.

Link to comment
Share on other sites
pricklypear1971 Community Regular

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.

Link to comment
Share on other sites
frieze Community Regular

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

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

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.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Julie Riordan's topic in Traveling with Celiac Disease
      1

      Any ideas for travelling

    2. - trents replied to Braver101's topic in Coping with Celiac Disease
      1

      Constant sweating with celiac disease

    3. - Julie Riordan posted a topic in Traveling with Celiac Disease
      1

      Any ideas for travelling

    4. - Braver101 posted a topic in Coping with Celiac Disease
      1

      Constant sweating with celiac disease

    5. - Tlbaked13 replied to djmu's topic in Related Issues & Disorders
      10

      Peripheral Neuropathy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,487
    • Most Online (within 30 mins)
      7,748

    CandiceK
    Newest Member
    CandiceK
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      There are supplements available that can help breakdown minor amounts of gluten such as you might experience with cross contamination when dining out and you order gluten free items from a menu. But they will not help when larger amounts of gluten are consumed. One such product that many on this forum attest to as having helped them in this regard is GliadinX. The inventor of GlidinX is one our forum sponsors so you should know that.
    • trents
      There is such a thing, believe it or not, called gluten withdrawal. Gluten has addictive properties similar to opiates. I know it sounds bizarre but research it. Also, are you compensating for the loss of vitamins and minerals you were getting from the FDA mandated fortified wheat flour products you were formerly consuming?
    • Julie Riordan
      Just wondering can anyone help me out.heading on holidays and don’t really know what expect.if I get glutened are there tablets that you can take
    • Braver101
      Does anyone else get soaking wet sweats just out of nowhere? I’m not in menopause, there’s nothing wrong with me except celiac disease and my thyroid, and I’m taking my medicine. I am 18 days gluten-free but I cannot stop sweating and it makes me freezing cold and I’m soaking wet and changing my clothes literally as I’m changing my clothes the new clothes are soaking wet and nobody will help me. Please somebody out there help me. 
    • Tlbaked13
      Sometimes I end up spitting out a drink of water! But for the most part I do ok with the liquids that I've been sticking to which Is hardly anything carbonated (meaning diet soda mainly)  I drink alot of tea which I make myself lipton cold brew sweetened with half sugar and half Splenda, smoothies when I could in the beginning but made with milk so I'm now using orange juice instead of the milk but it doesn't workout real often I drink black coffee in the mornings with no trouble usually and I've been experimenting with some juices but the sugar content is a set back I'm not a huge water fan but will drink it unfortunately where I live I can't do the tap water I'm the only one who has a problem with it apparently but for some reason I just can't...unless I'm using it in coffee or tea and the tea even took me some time to stand yes I have thought about boost/ ensure but they are very costly for someone who is scrapping the bottom at this time 
×
×
  • Create New...