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Getting my kids tested- what are the odds?

Alibu

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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.

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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

 

 

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      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
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      Fruits & Veggies

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      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

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      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
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      26F!
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