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

I'm Starting My 5 Y.o. On A gluten-free Trial


horsegirl

Recommended Posts

horsegirl Enthusiast

I was diagnosed with gluten intolerance (thru Enterolab as well as elimination diet) 2+ years ago.

I also have other food intolerances. I'm managing quite well, & have been able to reintroduce eggs.

My 5 y.o. DD has had chronic constipation since age 2, as well as frequent tummy aches & lots of gas. She seems to tire easily, has some anxiety/mood swings, though is generally an amazingly happy child. She was tested (blood) through Prometheus labs a year ago (their Celiac Plus panel), & was still within normal range on the gluten antibodies. She does possess 1 copy of the HLA-DQ8 gene (which she had to get from my DH because I'm double DQ-1, & I have no DQ8 at all). We've tried lots of things to try to manage the constipation/GI symptoms, including Miralax (when it gets bad enough), a short dairy elimination trial (with some success), & daily prunes. With her pediatrician's agreement, we've decided to start the gluten-free trial with her tomorrow, for a month. She already eats gluten-free more than 50% of the time, since that's how I cook. She also frequently makes gluten-free choices on her own (breads, snacks).

Now we're making everything 100% gluten-free for a month, to see what effects it has on her GI & other symptoms. She's in total agreement with it, & even asked to do it because she's tired of tummy aches.

My question though is, do we really need to put her through any other tests for gluten intolerance/celiac disease (other blood tests, EGD)? My feeling is, I know she's at risk because I'm already diagnosed, & she has several symptoms. I don't need a "formal" diagnosis for her, do I? Or is seeing any positive changes on the elimination trial enough?

Any suggestions or ideas would be appreciated.


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



Celiac.com Sponsor (A8-M):



horsegirl Enthusiast

I guess when I post so late at night (west coast time) it gets lost in the new posts!

Anybody have any suggestions or advice?

Thanks again.

Darn210 Enthusiast

If your pediatrician is on board with it, then I think you should be good. If you find that your daughter needs to be gluten free and you have trouble with the school system (that's really the only thing I can think of), then you've got your pediatrician backing you up.

sugarsue Enthusiast

Since it's fairly non-invasive, I would do a celiac panel blood test if you have not already done it and then go gluten free. I have one dd with a positive gluten intolerance test and one with negative. Both are gluren free now and doing amazingly. There is no doubt in my mind that they need to be gluten free. I do struggle sometimes whether they have celiac but if they/we need to figure that out when they get older we can cross that bridge.

So many people think you need gluten to be healthy and it's just not true so your child will be better off with your family history and her history.

GOOD LUCK!

I hate gluten Apprentice

Since she has already been tested and carrys one of the Genes and is starting to be sympomatical, I would do it. I did do the panel on my son and he was neg but have seen a life changing difference in him since going gluten free anyway. (my family has a long history of autoimmune dz, I also went gluten free after a neg blood test and it has been a life saver.) I saw a gi doctor on my peds request for the celiac panel, and have not seen my ped since. I will be going to him in may with my child (5 also) check up and a list of major quality of life improvements that we have been struggleing with for years. As you prob. already know, if it is a gluten intol. there may also be a casien intol. I will be giving up casien- milk- on both of us after three month. ( I know I am having problems with it, but thats what they say is ideal to wait 3 months after starting the diet) my childs school has been great, but he is still in preschool. I talked to his k and they seem to be on board as well. One month is not going to hurt anything other than results on a blood test. Good luck in your decision.

Jestgar Rising Star
Since it's fairly non-invasive, I would do a celiac panel blood test if you have not already done it and then go gluten free.

This is a good thought, but since she's mostly gluten-free already, a negative result wouldn't really tell you much. If your doc is backing you, I say just go with the diet.

MammaG Newbie

Do the diet. There really isn't much else to say. You are Celiac she has the gene and is having symptoms- It would be hard to say she doesn't have it. If you really want something else to test then do the poop test like you did through enterolab. -I did it for me and my son. But I think you already know what you'll find out.


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



Celiac.com Sponsor (A8-M):



626Belle Newbie

I agree with your decision to test out the diet.

I don't have kids, but a year ago, I started having these horrible symptoms. My blood panel came back negative for celiac, but I had also been gluten free for 2 weeks already because I was absolutely miserable and finally something was working. I'm not going back anytime soon for testing because I would have to endure that pain again just to hope for a diagnosis.

horsegirl Enthusiast

I'm curious to see why you say I'm celiac? Just wondering, because since my bloodwork & biopsy were both negative, my doctor diagnosed me with "non-celiac gluten intolerance". I don't know that there's truly a difference between the 2 titles, & I know that with my neurological problems on gluten, I'll never eat the stuff again.

Like I said, just curious, since you're the first one to say I have actual celiac.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,786
    • Most Online (within 30 mins)
      7,748

    Kate827
    Newest Member
    Kate827
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      @Manaan2, have you considered the possibility that she might be cross reacting to some food or foods that technically don't contain gluten but whose proteins closely resemble gluten. Chief candidates might be dairy (casein), oats (avenin), soy, corn and eggs. One small study showed that 50% of celiacs react to CMP (Cow's Milk Protein) like they do gluten.
    • Lily Ivy
      Gluten withdrawal is temporary, eat well!!
    • Manaan2
      I realize I'm super late in the game regarding this topic but in case anyone is still reading/commenting on this one-does anyone who is especially sensitive have their personal observations to share regarding Primal Kitchen brand?  My daughter was diagnosed almost 2 years ago with celiac and within 6 months, her follow up labs were normal and a year later vitamin levels significantly improving, but we are still battling GI symptoms; particularly, constipation, so much that she has been on MiraLax every day since she was 3.  We've managed to get her down to a half cap every other day but without that, she continues to have issues (when she has a known, accidental ingestion unfortunately it takes a lot more MiraLax and additional laxatives to help her).  I was searching for something else and found this and am wondering if anyone has any specific comments regarding Primal Kitchen.  I feel like we are so incredibly careful with diet, logging diet and symptoms to look for patterns (we've had multiple dieticians help with this piece as well), not eating out, contacting companies and of course, there is always room for improvement but I'm running out of ideas regarding where her issues could be coming from.  Even if the Primal Kitchen is contributing, I'm sure it's not the only thing contributing but I can't help but think there must be handful of things that are working together and against her.  The ingredients list distilled white vinegar, but also white wine vinegar and balsamic, then "spices" which I'm always cautious about.  However, after contacting the company, I felt more comfortable allowing her to consume their products but over time I've realized that the front-line customer service support people don't always provide the most accurate of information.  Thanks for reading to anyone that does.   
    • Bebee
      Thank you knitty kitty!!  I appreciate your help and knowledge!
    • knitty kitty
      Welcome to the forum, @Bebee, Yes, Celiac Disease has genetic commonalities with MS, hypothyroidism, arthritis, Reynaud, and rosacea.   Usually a gluten challenge is done before endoscopy with biopsies taken,  however I would not recommend a gluten challenge before endoscopy with biopsies for you since you have been gluten free for so long and have so many concurrent autoimmune diseases.   You can still have the endoscopy with biopsy samples taken now.  After several months with dietary changes, you can have another to compare results and check that intestinal health has improved.   You can get a genetic test for Celiac disease which shares genetics with other autoimmune diseases that you have.  Eating gluten is unnecessary for genetic tests. For the rosacea, get checked for SIBO (Small Intestinal Bacterial Overgrowth) that could be causing gastrointestinal symptoms as well as causing skin issues.  Our skin is a reflection of our gastrointestinal health.     Following the Autoimmune Protocol Diet has been helpful in keeping my own rosecea, eczema, and dermatitis herpetiformis and other autoimmune diseases in check.   Be sure to be checked for nutritional deficiencies that occur easily in gluten free and dairy free diets. Keep us posted on your progress! References: Clustering of autoimmune diseases in patients with rosacea https://pubmed.ncbi.nlm.nih.gov/26830864/ And... Celiac disease and risk of microscopic colitis: A nationwide population-based matched cohort study https://pubmed.ncbi.nlm.nih.gov/36939488/
×
×
  • Create New...