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

Where Do I Start?

KristenPK

Recommended Posts

KristenPK Rookie
KristenPK
Posted

We very recently discovered that our daughter has an intolerance to gluten. She tested negative for Celiac, however. I have several questions.... First, do I push the issue and have another/different test done? It's possible for her to have a sensitivity to gluten without being Celiac, right???

We're starting her on a gluten free diet, and it's going pretty well. Do I need to seek help from anyone--GI, nutritionist, etc???

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted
We very recently discovered that our daughter has an intolerance to gluten. She tested negative for Celiac, however. I have several questions.... First, do I push the issue and have another/different test done? It's possible for her to have a sensitivity to gluten without being Celiac, right???

We're starting her on a gluten free diet, and it's going pretty well. Do I need to seek help from anyone--GI, nutritionist, etc???

I don't know how old your daughter is, but general, children under the age of five do not test accurately. She may gluten intolerant without Celiac. A positive dietary response is a good indicator.

Remember, the tendency for Celiac is inherited. You might consider having you and your husband check.

ang1e0251 Contributor
ang1e0251
Posted

Her response to the diet is the key for you. You of course can do more testing but she must be actively eating gluten for more testing. I don't even want to put myself through that. IMO, The fact that she is doing well is enough, I just don't think it's important to know the difference between sensitive & Celiacs, either way she is sick when she eats it. Don't let her be sick.

Maybe someone with more knowledge can give you a reason for further testing. I'm glad for you that your daughter is better.

eeyore Collaborator
eeyore
Posted

People are able to be gluten intolerant without having celiac -I am one of them, being gluten-senstitive.

KristenPK Rookie
KristenPK
Posted
  • Author
I don't know how old your daughter is, but general, children under the age of five do not test accurately. She may gluten intolerant without Celiac. A positive dietary response is a good indicator.

Remember, the tendency for Celiac is inherited. You might consider having you and your husband check.

Interesting...she's only four years old. I'll talk to my husband about possibly testing ourselves as well. I was pretty sure that she could be gluten intolerant without being Celiac, but my doctor didn't seem to agree with me. I think I may have to look elsewhere for help to find someone with more knowledge on the subject.

Thanks for your help!

purple Community Regular
purple
Posted
People are able to be gluten intolerant without having celiac -I am one of them, being gluten-senstitive.

Ditto for my dd. As I look back over her 20 years, I can see little symptoms here and there as she was growing up. She has been gluten-free for 7-8 months (about 95-98 percent of the time). Her PMS has gotten back to normal. She still doesn't always sleep well at night and still has an allergy to dust/pets when she visits our house. She never gets bloated anymore. Never C or D or tummy troubles.

She has not had the Celiac tests but gluten-free diet has cleared up many little things and the extreme PMS. We don't have insurance nor $ for the doctor testing, so as long as I watch/listen to her closely and ask questions then I am comfortable with the gluten-free diet. She also drinks a little soy milk but not much dairy milk. Ice cream and cheese don't bother her. I cook and freeze gluten-free food for her so I pretty much know what she eats and she knows what to eat at potlucks/restaurants. She has had blood in her stools several times so we watch for that.

I watch my other dd closely and my dh too. We eat mostly gluten-free. Its beneficial to all of us b/c of the lack of chemicals/preservatives. I know what is in the food we eat.

fatherof4yearold Rookie
fatherof4yearold
Posted
We very recently discovered that our daughter has an intolerance to gluten. She tested negative for Celiac, however. I have several questions.... First, do I push the issue and have another/different test done? It's possible for her to have a sensitivity to gluten without being Celiac, right???

We're starting her on a gluten free diet, and it's going pretty well. Do I need to seek help from anyone--GI, nutritionist, etc???

you will find one of the frustrating things is you will be told the only way to know if you have celiac is quit eating gluten and see how you feel which is brutal when dealing with a child. My son had a biopsy of his intestine when he was four after 7 months of trying to find out what was wrong. The biopsy showed damage so they said he had celiac, his blood test came back higher then usual so we just went forward with a gluten-free diet. Not sure 4 years later if he has it or not (i don't know how to change my screen name) he is 8 now still gluten-free and gaining weight and healthy as can be. We have never gone back for another biopsy which you are supposed to do but he is doing so well we do not wan to go through the drama of a medical procedure again,

We went to several doctors and ending up at DuPonts childrens hospital and then went to CHOP's gastro who did the biopsy. When we were told we went to a nutristionist who specialized in celiacs. I think you have to do your due diligence and keep searching for answers. The nutrionist was the most helpful you might want to find one ho specializes in celiac. My son does not know life with gluten and so day he will have to discover for himself what he can eat and can't right now he is doing great. Thats my story hope it helps

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,174
    • Most Online (within 30 mins)
      7,748
    yfuvhg
    Newest Member
    yfuvhg
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Heatherisle
      Blood results

      By Heatherisle · Posted

      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
×
×
  • Create New...