Jump to content

  • 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

Testing Daughter For Celiac

Nantzie

Recommended Posts

Nantzie Collaborator
Nantzie
Posted

I'm surprisingly upset about this, considering what a God-send finding out about celiac has been for me personally.

My daughter just turned 4, so she has been potty trained for a while now. I'm not even involved in the process anymore, if you know what I mean. The whole time I was involved in the process, everything looked normal.

A few weeks ago they called me from preschool because she had diarrhea several times that day, and didn't make it to the potty in time one of those times. I asked the teachers as much as I could about it, and it raised my suspicions a little. But she had been through a period where she was getting one cold after another, and then really bad allergies. And then when I took her to the doctor about her allergies, the doctor said that she's definitely allergic to something because she's got such dark circles under her eyes and said that they even call them "allergic shiners". Crud!

I had told her that mommy needs to see your poop, which she would forget about and flush and THEN tell me. After a few days, I did end up seeing it and it's pale (kinda the color of a cardboard box, but a little yellower), but it wasn't floating. I knew right then that I needed to arrange to have her tested, but I still kept thinking that maybe it was from being sick.

Well, this afternoon, I saw it again, and it's the same color, this time floating, and foamy. Crud!

I ordered the Enterolab $99 gluten test, rather than the whole panel. I can't afford the whole panel right now.

I'm going to make an appt with her doctor to let her know what's going on, and let her know about Enterolab and the test I ordered. I would wait and jump through the hoops, but I'm not up for a fight with her doctor if she still has old information on celiac. I just want her to be healthy.

I know that both my kids are susceptible to gluten problems since they both have two copies of the genes, but I was praying that they wouldn't have any problems until they were at least a few years older so that they could understand a little better.

Nancy

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

Celiac.com Sponsor (A8-M):


alexisb Rookie
alexisb
Posted

It sounds like you're on the right track. I'm very sorry that this has surfaced, but you are so blessed to be aware of celiac as you're parenting. Good luck and let us know what happens.

Guest nini
Guest nini
Posted

four is not too young to learn about the diet and get the hang of it. It's actually better to start younger in my opinion. My daughter was 3 when we went gluten-free, and she is now 6 and has a very good handle on the diet and knows to ask before eating ANYTHING...

it's not the end of the world if your children have to be gluten free, in fact they will end up eating healthier than the rest of their peers... I am constantly getting feedback about how healthy my child eats and how HER choices are always healthier choices...

TCA Contributor
TCA
Posted

I think it's easier to start when they are young, that way they don't feel so much like they're missing out on things. Just be thankful you found it and hopefully can prevent other health issues. good luck!!

Ursa Major Collaborator
Ursa Major
Posted

Nancy, since your kids have two celiac genes, it's safe to say that your daughter has now developed celiac disease. As you're waiting for your enterolab kit, you might as well put her on the gluten-free diet, to make her feel better as soon as possible. You don't have to eat gluten for the enterolab tests!

And why not put the whole family on a gluten-free diet to make life easier for you, and prevent your son from developing full-blown celiac disease? That's what I would do, anyway. And if they have two copies of the genes, your husband must have given them one, and would probably benefit from being gluten-free as well.

Guest cassidy
Guest cassidy
Posted

I'm sorry to hear you are going through that.

At least you understand everything and you know about the diet since you are dealing with it. That will make it easier for her, but it still is not good news.

Nantzie Collaborator
Nantzie
Posted
  • Author

Yea, you all are right. My daughter is such a picky eater that I was just crossing my fingers that it wouldn't surface for a couple more years. But then there was a post a week or so ago where one of our members thought her young daughter who would only eat veggies (I think that was it) might have a gluten problem. We all gave her some just regular mommy advice on that type of stuff, and then when she put her daughter gluten-free, she started actually wanting to eat other things. I hope that's true for my daughter. I had never thought about that being a possibility.

And I should put everyone on a gluten-free diet. Definitely my kids. My husband was such a horrible &$% about celiac at first, called me a hypochondriac, told me that I wanted to be sick so I could get attention, blah, blah, blah, that I haven't even told him I got the kids genes tested. Especially since his family was just as bad, if not worse, and that means they carry it. I REALLY don't want to have THAT conversation. I have to say that my husband and his family have completely turned around in regard to ME having celiac. They're all really great now. BUT, if I was to suggest that they may need to be tested for it, it would get really ugly again. But I'll do it. I just have to get the guts and find the appropriate time.

Hopefully my husband will be willing to be tested at least.

Nancy

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

Celiac.com Sponsor (A8-M):


Gentleheart Enthusiast
Gentleheart
Posted
Nancy, since your kids have two celiac genes, it's safe to say that your daughter has now developed celiac disease. As you're waiting for your enterolab kit, you might as well put her on the gluten-free diet, to make her feel better as soon as possible. You don't have to eat gluten for the enterolab tests!

And why not put the whole family on a gluten-free diet to make life easier for you, and prevent your son from developing full-blown celiac disease? That's what I would do, anyway. And if they have two copies of the genes, your husband must have given them one, and would probably benefit from being gluten-free as well.

Hi Ursula,

May I interject a question because of what you said? If a person has a celiac gene And a gluten intolerant gene and Enterolab also says they have active antibodies and mild malabsorption, is it just assumed that they have actual celiac? At that point is a biopsy the only way to know or do you pretty much know from that kind of stool result? Thanks!

Ursa Major Collaborator
Ursa Major
Posted
Hi Ursula,

May I interject a question because of what you said? If a person has a celiac gene And a gluten intolerant gene and Enterolab also says they have active antibodies and mild malabsorption, is it just assumed that they have actual celiac? At that point is a biopsy the only way to know or do you pretty much know from that kind of stool result? Thanks!

Well, Enterolab can't diagnose you with celiac disease, but with gluten intolerance. Since the treatment is the same (and if you're gluten intolerant you'll likely develop active celiac disease sooner or later) it doesn't really matter. There are some experts who would like the distinction in diagnosis abolished altogether.

And once you're diagnosed by Enterolab, a positive response to the gluten-free diet is all that is needed to confirm a diagnosis, a biopsy wouldn't be needed. Biopsies are an unreliable method of diagnosing celiac disease anyway. They'll only catch it if extensive damage to the villi is done, but not if there is only mild damage.

Personally I believe that it is preferable to PREVENT that extensive damage with a gluten-free diet, before it gets so bad that you're desperately ill.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    4. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    5. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748
    bigwave
    Newest Member
    bigwave
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.