Jump to content

  • 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:
    Support Our Content
    eNewsletter
    Donate

Getting my kids tested- what are the odds?

Alibu

Recommended Posts

Alibu Explorer
Alibu
Posted

A little background:

I was recently tested for celiac and my results are not conclusive (positive TTG, negative EMA).  I have a biopsy scheduled for tomorrow.

I asked my pediatrician if my kids (ages 14 and 11) need to be tested because my TTG was positive, and he ordered the test (he'll pretty much order anything, LOL).  Anyway, I'm totally freaking out because my 11 year old was born with multiple severe food allergies to milk, egg, peanuts, tree nuts, and sesame.  He also had horrible eczema, most of it food related, but he still has an extremely flaky scalp.  He's outgrown milk and egg (yay!) and has been enjoying lots of foods since then.  He also has high-functioning autism, ADHD, and OCD.  

So the thing is....this kid has been through SO much.  He was almost placed in a hospital because of his refusal to eat at a young age and because of his food allergies, his choices were very limited.  Wheat was pretty much our go-to.  Now that he can eat a lot of foods, his world has opened up and to see his face when he tries a new food that he loves makes me so happy.  One of the things that gives him the most joy in the world is going out to restaurants.

You see where I'm going with this.  I'm TERRIFIED of his test coming back positive.  My daughter...she can handle it.  It would suck, but we could deal.  I just can't stand the thought of taking all of that away from him.  I almost canceled the test because I don't know how I would face it.

I know I'm probably jumping the gun.  There's still a very real possibility that my biopsy will come back negative.  I've been doing a lot of research and it looks like there's a much lower rate of positive biopsies with the combo of positive TTG and negative EMA.  I think it was like 10% or something.

But if it DOES come back positive....what are the odds that I have passed this down to my kids?   And yes, I know it's not the end of the world and that things could be much worse, but this poor kid has had to deal with so much, I just don't know how I would break it to him.

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

Celiac.com Sponsor (A8-M):


Ennis-TX Grand Master
Ennis-TX
Posted
2 hours ago, Alibu said:

A little background:

I was recently tested for celiac and my results are not conclusive (positive TTG, negative EMA).  I have a biopsy scheduled for tomorrow.

I asked my pediatrician if my kids (ages 14 and 11) need to be tested because my TTG was positive, and he ordered the test (he'll pretty much order anything, LOL).  Anyway, I'm totally freaking out because my 11 year old was born with multiple severe food allergies to milk, egg, peanuts, tree nuts, and sesame.  He also had horrible eczema, most of it food related, but he still has an extremely flaky scalp.  He's outgrown milk and egg (yay!) and has been enjoying lots of foods since then.  He also has high-functioning autism, ADHD, and OCD.  

So the thing is....this kid has been through SO much.  He was almost placed in a hospital because of his refusal to eat at a young age and because of his food allergies, his choices were very limited.  Wheat was pretty much our go-to.  Now that he can eat a lot of foods, his world has opened up and to see his face when he tries a new food that he loves makes me so happy.  One of the things that gives him the most joy in the world is going out to restaurants.

You see where I'm going with this.  I'm TERRIFIED of his test coming back positive.  My daughter...she can handle it.  It would suck, but we could deal.  I just can't stand the thought of taking all of that away from him.  I almost canceled the test because I don't know how I would face it.

I know I'm probably jumping the gun.  There's still a very real possibility that my biopsy will come back negative.  I've been doing a lot of research and it looks like there's a much lower rate of positive biopsies with the combo of positive TTG and negative EMA.  I think it was like 10% or something.

But if it DOES come back positive....what are the odds that I have passed this down to my kids?   And yes, I know it's not the end of the world and that things could be much worse, but this poor kid has had to deal with so much, I just don't know how I would break it to him.

I have Asperger, ADHD, Bipolar, and am OCD...think Sheldon big bang theory lol. Yeah it can be hard I will admit...but alot of the autism issues become less severe on a gluten-free and dairy free diet...I also have a peanut issue like him and a issue with soy..whole dang list onto of celiac. Anyway, I turned to a new fun things. I invent and create foods with things I can eat in the kitchen. Heck have a blog here about it, I also started a gluten free bakery to give me purpose and help with that "I want to give people and help people, be useful" thing I got going. The OCD is great for celiacs and cooking, you measure stuff to the gram, do temps to exacts, over analyze  everything and figure out what causes what textures, flavors, etc. You also become OCD clean and avoid contamination like hte plague....dog once bitten twice shy, something makes you sick your avoid it like crazy....actually great for this disease lol.

This might be a blessing in disguise, a gluten free household is much easier to manage with all gluten removed from the house....I mean crumbs makes us sick, residue, that poof from the bag of flour can dust and CC the whole kitchen and god forbid we inhale it. His health will improve on a gluten free diet...honestly look up the relations between autism and gluten....

There is hope, I am proof of it, I might not go out much, have many friends, or function well in society, but I found my purpose, I found something I enjoy doing, and life is looking up.

High chance you passed on the gene if you have it...chances it is active in your kids is less. But it can happen, regardless a gluten free diet would be great for your 11 year old. IF you need help with anything I know where to find everything, I can even set you up with ways to save on buying gluten free foods, snacks, etc. The recipe blog I have here has all kinds of fun recipes....

kareng Grand Master
kareng
Posted

People with autism  have a high rate of Celiac.  Your doctor is supposed to test him for Celiac.

 

https://www.celiac.com/articles/24962/1/Celiac-Disease-Linked-to-Nearly-Every-Inflammatory-Disorder/Page1.html

 

 

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will...
    2. Jacki Espo
      - Jacki Espo replied to CDFAMILY's topic in Related Issues & Disorders
      5

      Covid caused reoccurrence of DH without eating gluten

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure.
    3. Mari
      - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      1

      New Celiac Mama in My 30s

      Hi Tiffany. Thank you for writing your dituation and circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines. Way back when I was in my 2...
    4. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      My only proof

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but...
    5. knitty kitty
      - knitty kitty replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

      Fascinating.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,959
    • Most Online (within 30 mins)
      7,748
    jenny44
    Newest Member
    jenny44
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.