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
      128,373
    • Most Online (within 30 mins)
      7,748
    Joanne Walko
    Newest Member
    Joanne Walko
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Test results

      By Scott Adams · Posted

      For someone with celiac disease who might have extreme villi damage the term "cross-reactivity" gets thrown around a lot.  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.
    • Scott Adams
      Help Understanding Test Results

      By Scott Adams · Posted

      This test was positive according to the original post, so the next normal step would be a biopsy: TTG IGG - 9 U/mL (0-5 range) @Brown42186 Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • trents
      Hunger, nervous stomach or Hpylori?

      By trents · Posted

      Connie, spinach is high in oxalates. Many celiacs do not tolerate oxalates well.  If you are still battling dermatitis herpetiformis, you may want to look into a low iodine diet as well as reviewing possible sources of gluten cross contamination.
    • Scott Adams
      Hunger, nervous stomach or Hpylori?

      By Scott Adams · Posted

      Do you eat outside your home, especially in restaurants, as this can be a source of cross-contamination. If you need to take dapsone still your diet may not be 100% gluten-free. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Connie Smitj
      Hunger, nervous stomach or Hpylori?

      By Connie Smitj · Posted

      I was diagnosed 5 years ago. I also have celiac rash which is no longer an issue thanks to maintenance dose of dapsone.  I ate spinach with lemon juice  and had terrible pain after. My mother whom I suspect had undiagnosed celiac disease developed a duodenal ulcer that turned into a sarcoma late in life . My celiac clinic suggests seeing my family doctor.
×
×
  • Create New...