Jump to content

  • 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):

Push For Diagnosis Or Just Wait?

KenzMom

Recommended Posts

KenzMom Rookie
KenzMom
Posted

My daughter (18 months) had her check up today and she incredibly grew an inch and half in less than a month! The nurse measured her twice just to make sure that was correct lol. She had dropped down to the 25th percentile and she just jumped up to the 75th percentile for height again. She went gluten free the day of her scope (which was April 2nd) and she has been doing very well! 

 

Here's the thing-- 

Bloodwork was neg for celiac (although they did not do the DGP tests). Boderline IGA levels. 

No celiac damage in biopsies

Biopsies did show yeast infection in esophagus as well as eosinophils and inflammation in the stomach. 

Tested completely negative for all 25 food allergies

 

Her pediatrician does not think she has celiac and does not think there is a possibility that they missed it or she showed false negative. Her opinion is  "if she does better off of gluten then just keep her off of gluten". Which I understand, but I feel she has some significant issues in her GI system that should be tied to a cause. If it's not celiac, then WHAT would cause the stomach inflammation, yeast infection in esophagus, all of her digestive issues, slow in growth, etc.....

 

Would you push to test for celiac again? maybe when she's older?  Does it sound like it could be something else? 

 

 

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

Celiac.com Sponsor (A8-M):


Brit1612 Apprentice
Brit1612
Posted

Wow, that is great to hear that she is growing well.  Do you feel confident that the last height check was accurate as well?  Am I understanding right that the growth has come since going gluten free?  We were told by our immunologist, if our son's growth picks back up again after going gluten free, that would be enough for her to diagnose him (along with the other things, even with the negative test results).  Our stories are similar, I feel for all the worrying and wondering you are going through!  How have her GI symptoms been now that she has been gluten free for a while?

 

I think the hardest thing is getting accurate test results when they are so little especially since her IGA was a bit low (am I remembering correctly?).

 

Good luck to you, hope some of these other's have more helpful info for you (I could use it as well :)).

KenzMom Rookie
KenzMom
Posted
  • Author

She was measured by the pediatrician and at the GI office just before her scope and they were the same measurement...I am very picky and careful to make sure she is laying straight when they measure her. So I do feel that her measurements have been accurate and yes she has grown that much since going gluten free. 

 

GI symptoms are MUCH better!!

No more distended belly. Diarrhea only twice a week. She still gets gas and bloating every now and then but  it is manageable and she does not seem to be in pain (and she's not as smelly!). She's sleeping through the night, she's eating much less--she was a HUGE eater before going gluten free-- Every time I have wondered if she got cross contamination (because I am still learning) she has been bloated. Still on Prevacid for reflux so I can't tell if that's better or not. 

 

Yes, IGA was at the lowest end of the spectrum. The docs seem to only pay attention to the "facts" in front of them and not what the Mom is over here saying. 

whitefairy30 Rookie
whitefairy30
Posted

Hi.

Do you test the HLA ? 

KenzMom Rookie
KenzMom
Posted
  • Author

Hi.

Do you test the HLA ? 

 

No- no HLA was tested. Forgive me, but I am not sure what HLA is or why it is tested? 

Brit1612 Apprentice
Brit1612
Posted

She was measured by the pediatrician and at the GI office just before her scope and they were the same measurement...I am very picky and careful to make sure she is laying straight when they measure her. So I do feel that her measurements have been accurate and yes she has grown that much since going gluten free. 

 

GI symptoms are MUCH better!!

No more distended belly. Diarrhea only twice a week. She still gets gas and bloating every now and then but  it is manageable and she does not seem to be in pain (and she's not as smelly!). She's sleeping through the night, she's eating much less--she was a HUGE eater before going gluten free-- Every time I have wondered if she got cross contamination (because I am still learning) she has been bloated. Still on Prevacid for reflux so I can't tell if that's better or not. 

 

Yes, IGA was at the lowest end of the spectrum. The docs seem to only pay attention to the "facts" in front of them and not what the Mom is over here saying. 

That's great to hear that her symptoms are doing better, and that she is growing.  It seems as though the diet is helping her; I guess the only question is "NCGS" or "celiac".  One thing I am not sure of, maybe someone else can answer this, is do kids have the growth issues with NCGS that they do with celiac?  Since growth has been an issue for us as well, I have been wondering if NCGS could cause that as well????? 

 

I think I have already asked you this but has she had the genetic testing done?  It doesn't tell you much but it could help convince you that you are going down the right path.

KenzMom Rookie
KenzMom
Posted
  • Author

I looked up HLA-- i believe that is the genetic testing? We have not done that...does insurance cover genetic tests? 

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

Celiac.com Sponsor (A8-M):


Brit1612 Apprentice
Brit1612
Posted

At this point we have so many medical bills and can't even tell you how much of what they paid for.  But I know they atleast paid a portion of it because I wasn't asked to pay upfront or anything.  Our son came back positive for both of the main genes.

whitefairy30 Rookie
whitefairy30
Posted

Yes HLA it's the genetic test and if she comes out negative that roules out celiacs for ever, but is she's positive for dq2 or dq8 it's very likely she'll develop celiacs, so maybe go gluten free. 

ravenwoodglass Mentor
ravenwoodglass
Posted

Yes HLA it's the genetic test and if she comes out negative that roules out celiacs for ever, but is she's positive for dq2 or dq8 it's very likely she'll develop celiacs, so maybe go gluten free. 

While rare there are diagnosed celiacs without one of those 2 genes. Having one of the 2 genes does not make it "very likely" she will develop celiac many people carry the genes but never develop celiac. 

ravenwoodglass Mentor
ravenwoodglass
Posted

OP- it sounds like your little one is responding very well to the diet. It is great news that she is recovering so quickly. If it was my child I would keep her gluten free. If you do decide to test later you will have to challenge but with the preschool years being so important for growth and development I think you are wise to continue with the diet for at least now. 

murphy203 Rookie
murphy203
Posted

Great to hear that she is doing better!!

Archived

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

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

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...