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
      127,750
    • Most Online (within 30 mins)
      7,748
    Ajustice
    Newest Member
    Ajustice
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      High blood test numbers - with scales. Any advice?

      By Scott Adams · Posted

      I agree with @RMJ, you have multiple positive tests so celiac disease is likely.  This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease.     
    • trents
      Newly gluten free… withdrawal?

      By trents · Posted

      One small study found that 50% of celiacs react to the dairy protein "casein" like they do to gluten. It is also common for celiacs to be lactose (the sugar in milk) intolerant, though that often disappears in time as the villi heal. About 10% of celiacs react to the oat protein "avenin" like they do gluten.
    • K6315
      Newly gluten free… withdrawal?

      By K6315 · Posted

      Thank you so much Trents (Scott?)! I have started working with a dietitian and did a deep research dive as soon as I got the diagnosis. I am aware of what you mentioned in the first two paragraphs, and was not aware of anything in the third, so I am grateful for that information, and will talk to the dietitian about that. I think I was most interested in the withdrawal process - it gives me hope that, although I have felt unwell recently, I just need to be patient (not a strong suit). I have printed the article you sent and will look at it more closely. Thanks again!
    • Sandi20
      Gluten Free Daily Vitamins for Kids w/ Celiac

      By Sandi20 · Posted

      I really like Thorne!  I've researched thier products.  Thank you so much.
    • trents
      Newly gluten free… withdrawal?

      By trents · Posted

      Welcome to the forum, @K6315! Gluten withdrawal typically lasts for a period of a few weeks. But there is a real learning curve involved in actually attaining to a gluten free dietary state. Much more is involved than just cutting out major sources of gluten such as bread and pasta. It's all the places that gluten is hidden in the food supply that is difficult to ferret out, like soy sauce and canned tomato soup, canned chili and canned pork n' beans, some "lite" pancake syrups, potato salad, flavorings, etc., etc. Gluten-containing grain products are hidden through alternate terminology and found in places you would never expect.  There is also "cross contamination" where naturally gluten free foods come into contact with gluten-containing grains during farming, transportation, storage and manufacturing processes. Then there is the issue of "cross reactivity" whereby you may be having gluten-like reaction to food proteins whose structure is similar to gluten. Chief among these are dairy, oats (even gluten-free oats), soy, corn and eggs. I am including this article that you might find helpful:   
×
×
  • Create New...