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:
    Support Our Content
    eNewsletter
    Donate

Wwyd? Negative - Of Course

jayhawkmom

Recommended Posts

jayhawkmom Enthusiast
jayhawkmom
Posted

Ok, so the doctor's office just called. Finally, after numerous days of waiting - our baby's tests came back. Of course they are negative. He's been gluten free since October, I knew they would be.

The nurse suggested I no longer restrict him from *anything* other than the foods he has RAST tested positive for - above a class 1. That means no eggs, no peanuts. But, she said that his soy and dairy were so low that we should not be restricting. Well - I know for a FACT he reacts to both dairy and soy.... so I will NOT reintroduce those to him. (in fact, he has terrible diaper rash from eating an EnerG cracker yesterday - SOY!)

Would you, if you were in my position, reintroduce gluten to see if there is a reaction??

I can't even begin to tell you how torn I am about this. If he doesn't HAVE to be gluten free... why force it? However, if his tests were negative (meaning both tTg and EMA were as low as they could be) because he's been gluten free and I reintroduce and he gets sick... I don't think I could live with myself.

What's a mom to do???

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

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted
The nurse suggested I no longer restrict him from *anything* ....

My guess is that you routinely restrict him from things like coffee, alcohol, deep fried foods, etc. What's one more thing that's probably bad for him?

And wouldn't it be easier to give all the kids the same type of food?

Since these tests appear to be very unreliable in small children why don't you just keep him gluten-free until he's 7 or 8 years old? You can always test him later, and you may find that after a few accidental challenges that he's better off without gluten, or that it doesn't seem to make him very ill (but if this is the case you might want to strongly consider a challenge and blood tests when he's older. There's no point in assuming everything's fine when you consider the rest of your family's reaction to gluten).

As long as you make sure all your kids get a good nutritional balance of food, there's no reason to worry that you are depriving them of anything.

jayhawkmom Enthusiast
jayhawkmom
Posted
  • Author
My guess is that you routinely restrict him from things like coffee, alcohol, deep fried foods, etc. What's one more thing that's probably bad for him?

Very good point!!! :)

Since these tests appear to be very unreliable in small children why don't you just keep him gluten-free until he's 7 or 8 years old?

As long as you make sure all your kids get a good nutritional balance of food, there's no reason to worry that you are depriving them of anything.

As you can see from my sig - my 8.5 year old son was tested for Celiac at 2 and again at 4 due to a myriad of symptoms. It wasn't until "just now" that he had a positive blood test. It all started with us starting to severely restrict the amount of gluten in the house. So, he wasn't eating it every day. As it went longer and longer between times that he was exposed to it... the reactions would come more and more rapidly. (Typical... isn't it?)

So, I'll just continue to feed my baby boy the same foods that we are eating. And, when he's much older and not relying on me for all his meals, we'll see where we need to go to either prove or disprove Celiac.

Thank you!!!

Jestgar Rising Star
Jestgar
Posted

Hang in there. There are a lot of people on the same journey.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,311
    • Most Online (within 30 mins)
      7,748
    kayd.sloan
    Newest Member
    kayd.sloan
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Canker sores

      By Scott Adams · Posted

      Canker sores can definitely be frustrating, especially when you're already managing a strict gluten-free lifestyle and have been diagnosed with celiac disease for so long. While these painful mouth ulcers aren’t exclusive to celiac disease, they can be linked to nutritional deficiencies—particularly of iron, folate, or vitamin B12 (as @trents mentioned )—which are common in people with celiac, even those who are very careful with their diet. Ongoing fatigue and aches might also suggest that your body isn’t fully absorbing nutrients or that there’s some underlying inflammation. It could be helpful to get bloodwork done to check for these deficiencies, and possibly even a full nutritional panel. Sometimes, new sensitivities or hidden sources of gluten or additives like sodium lauryl sulfate (common in toothpaste) can trigger symptoms like canker sores too. Since your reactions are so severe and you're highly vigilant, it might also be worth considering whether any other autoimmune conditions could be involved, as they can develop over time and overlap with celiac. Consulting with your doctor or a celiac-informed dietitian may help pinpoint the cause and bring relief.
    • knitty kitty
      Ocd making gluten fears unmanageable. Need advice

      By knitty kitty · Posted

      @Dora77, You shouldn't worry about getting glutened through your skin.  You would have to touch a gluten infested doorknob and then put your hand in your mouth.   I'd be more concerned with your mom's heating up gluten bread in the oven and boiling gluten noodles.  These methods cause particles of gluten to become airborne which would then enter your nose and be swallowed, going into your digestive tract.  I have to avoid the bakery aisle at the grocery store for this reason.  An M95 mask helps. If you get nutritional deficiencies corrected, your immune system will calm down and be less reactive to gluten expose.  Vitamin D helps regulate the immune system.  Thiamine and Niacin help make digestive enzymes which would help digest any accidental gluten exposure.  Thiamine helps Mast cells not to release histamine, an inflammatory agent released as part of the reaction to gluten, and also a neurotransmitter that causes alertness and anxiety, and the flight or fight response.  Pyridoxine will help improve the OCD.  Remember your brain is part of the body.  Vitamin deficiencies affect your brain and mental health as well as the rest of your body.  
    • Jacki Espo
      Canker sores

      By Jacki Espo · Posted

      I do not have evidence other than anecdotal but I am certain when I have gotten these it's the result of eating gluten (back when I did).  I don't get them now that I don't eat gluten. 
    • Dora77
      Ocd making gluten fears unmanageable. Need advice

      By Dora77 · Posted

      What really bothers me is if worrying about getting cc‘d from touching the same door knob as others touched is valid. Seems like an extremely unlikely way to get glutened but i read people saying that.    If thats true then theres realistically zero chance i dont get cc‘d in a non gluten-free household unless i Cook Everything myself and wash my hands multiple times in between and store all of my stuff separately
    • trents
      Canker sores

      By trents · Posted

      Welcome to the forum, @Mrs. Cedrone! Among the various causes for canker sores, are "Nutritional problems like too little vitamin B12, zinc, folic acid, or iron" https://www.webmd.com/oral-health/canker-sores Could you be deficient on something?
×
×
  • Create New...