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:
    Help Celiac.com:
    eNewsletter
    Donate

Anxious For Diagnosis


Capegin

Recommended Posts

Capegin Rookie

Hello,

My DD (15 months) had a blood test for Celiac on Monday, and the pediatric GI seemed to think there's a good likelyhood it will be positive given her symptoms. While we wait for results, I'm worried about three things:

1. It will be positive. I'm worried I'll get overwhelmed or confused by all of the ingredients to avoid and I'll make mistakes. I'm worried her extreme irtitability won't improve and I will continue to struggle to enjoy her sometimes. I'm worried about the guilt I feel about that.

2. It will be negative. Then we are back at square one, after waiting, allergy testing, experimenting with cutting out Lactose, etc.

3. I'm worried about the CF test the GI also ordered. Neither my husband nor I are carriers, but the doctor explained there can be mutations. I know it is very rare, but I'm terrified.

Overall I'm just worried and a total mess right now.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



MitziG Enthusiast

First, breathe! Stop worrying about what is beyond your control. If she tests positive for celiac, you will do what the rest of us have done- you will learn! Yes, there will be mistakes and setbacks, in the beginning, it is overwhelming. But after 6 mos or so it will be second nature.

Now, if the test is negative, you are NOT at square one. Chances are still good that she is non-celiac gluten intolerant, or just too little to show enough antibodies yet. So, if that is the case, embark on a strict gluten-free diet for a few months anyway. It can take months to see improvement in some people, so don't give up if you don't see immediate results.

It may also be in her interest to do stool testing through enterolabs. While it is controversial, a lot of people have found the answers they needed to resolve their heealth issues that way. If the celiac test is negative, it can point you in the right direction for identifying problem foods.

As for CF....with neither of you being carriers, it is very remote that is what you are looking at. Don't assume the worst, it usually isn't.

The fact is, gluten can mess you up bad. You can feel like you are dying, and look like it too. It makes you crazy, depressed and irritable. It fogs your brain. The list goes on and on. I'd think it is a safe gamble that you will get to the bottom of this by dealing with food issues, but it could take some time. Stick around here, you will get lots of encouragement and learn a lot.

Link to comment
Share on other sites
Sesara Rookie

We are in the same boat as you...Tuesday, we had the blood work done on my 21 month old, and they have already scheduled a biopsy and seem fairly confident that we are probably getting a Celiac's diagnosis out of this. We actually already had to do a CF test, and I was terrified by it - it's a normal reaction, and I can't even begin to detail me relief when it was negative - I would take a Celiac's diagnosis over a CF diagnosis any day of the week.

We too are just beginning to navigate the waters of gluten free, and it is confusing - I look at a package and wonder - does maltodexrin have gluten in there somewhere, what if the soy sauce they used in this beef jerky has gluten, where on earth can we take him to eat that he will be safe as he grows up, etc. But I can already tell that this forum is a wonderful resource from parents who have BTDT and will be able to help answer those sorts of questions.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,457
    • Most Online (within 30 mins)
      7,748

    Kitty-Kat001
    Newest Member
    Kitty-Kat001
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      And the fact is, no two celiacs will necessarily respond the same to gluten exposure. Some are "silent" celiacs and don't experience obvious symptoms. But that doesn't mean no harm is being done to their gut. It just means it is subclinical. 
    • AlyO
      Thank you, Trents.  I appreciate your helpful and friendly reply. It seems more likely to be a bug.  It has been a pretty severe bought. I feel that I don’t have enough experience to know what signs my little one shows after exposure to gluten. 
    • trents
      Hannah24, be aware that if you are on a gluten free diet, you will invalidate any further testing for celiac disease (except genetics) and would need to go back to eating significant amounts of gluten for weeks or months to qualify for valid testing.
    • knitty kitty
      Hello, @Hannah24 Have you had a DNA test done?  Celiac Disease is genetic.  You must have at least one gene to develop celiac disease.  You don't have to be consuming gluten for a genetic test.   Anemia, diabetes and thiamine deficiency can cause false negatives.  Some lucky people are seronegative, but still have celiac disease.  Peripheral neuropathy, tingling in hands and feet are symptoms of vitamin deficiencies.  Vitamin C, Thiamine B1, Niacin B3, Pyridoxine B6, and Cobalamine B12 can each cause peripheral neuropathy.  These same vitamins are needed to produce blood cells.  Most undiagnosed Celiacs suffer from nutritional deficiencies. The DNA test would be helpful.
    • trents
      We do hear of cases of remission but they generally eventually revert back. I wouldn't push your luck.
×
×
  • Create New...