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

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

  • 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. dixonpete
      0

      Inoculation and video development

    2. Juliane
      - Juliane replied to Colleen H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Stomach burning and neuropathy

      Yeah, that sounds super familiar. When inflammation levels are high — especially at the start of changing your diet — the body often develops a fructose and lactose intolerance. Unfortunately, the only thing that really helps is cutting out anything that isn’t lactose-free or that contains sugar. So basically, stick to meat, veggies, fish…
    3. RMJ
      - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea

      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight. My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she...
    4. Colleen H
      - Colleen H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Stomach burning and neuropathy

      Hello I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet. Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I...
    5. sleuth
      - sleuth replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      Of course my son is on a 100% gluten free diet. I wish his symptoms were not debilitating as there are right now. He cannot work, even when a miniscule of cross contamination occurs. It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc. It's literally neurological inflammation. Not to be taken lightly here. We...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,841
    • Most Online (within 30 mins)
      7,748
    Humble V
    Newest Member
    Humble V
    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

    • Juliane
      Stomach burning and neuropathy

      By Juliane · Posted

      Yeah, that sounds super familiar. When inflammation levels are high — especially at the start of changing your diet — the body often develops a fructose and lactose intolerance. Unfortunately, the only thing that really helps is cutting out anything that isn’t lactose-free or that contains sugar. So basically, stick to meat, veggies, fish…
    • RMJ
      Nausea

      By RMJ · Posted

      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Stomach burning and neuropathy

      By Colleen H · Posted

      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By Scott Adams · Posted

      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
×
×
  • 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.