Jump to content

  • 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):

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
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...