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

Celiac Testing For A Toddler?

natalie6691

Recommended Posts

natalie6691 Newbie
natalie6691
Posted

Hi,

I'm new to this forum, so I'm sorry if this is in the wrong place.

My daughter is 19 months old. She was diagnosed with a milk intolerance at 4 months old and was given prescription milk (Nutramigen). The 2 weeks after starting on her new milk, she improved a lot. Then we started weaning her and through her symptoms we discovered she reacted to wheat, soya, gluten, milk and berries.

The pead we saw said it was pointless having her blood tested for allergies because there is always a chance they can come back negative when we know she has a clear reaction. He also said you can have possitive results from allergies you don't have. We decided to keep going as we were and introducing specific foods at seperate times. The last type we tried was gluten 2 months ago and she reacted as normal. Reactions bring her eczema out all over her arms and leg (sometimes on her chest and neck), an upset tummy, nappy rash, runny and smelly nappies.

We've recently seen a new pead because we have moved area, and he mentioned the blood test. He also said there wasn't much point in the blood tests, but talked about a test to perform for celiac disease. He explained we would have to feed her gluten products for 3 months and then she'll be put under general anesthetic(sp) to have a biopsy of her gut taken.

Has anyone had this done? Please could you reply with some information about preopration, the procedure and recovery?

My partner and I don't know what to do for the best. We know she cannot have it done until at least she is 2 years old, so we still have a few months to think about it.

Part of my doesn't see the point. Why put her through all the pain and upset of eating gluten and then going into theatre when we know she reacts? The other part of me thinks we should just carry on as we are, introducing gluten in between introducing the other foods she is allergic to.

Thank you for reading and for any replies. Sorry if it doesn't make much sense.

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

Celiac.com Sponsor (A8-M):


Jungle Rookie
Jungle
Posted

It seems like Dr's sometimes forget that although these tests are routine for them. It is our BABIES. And maybe we should start simpler. If she reacts on gluten then why would you mess with her system when she is so little.

3 months of her reacting seems like a lot of pain, and tears for something which you already know. She does react to gluten.

It seems like too much for such a little one. If after a few years (when she is bigger and can communicate well) they want to try and see if they can get a diagnosis then that is one thing. But it seems like torture to sign up a wee one for 3 months of eczema and and upset tummy, and diaper rashes to confirm what you already suspect.

natalie6691 Newbie
natalie6691
Posted
  • Author

Hi Jungle,

Thank you so much for the reply.

To be honest, I think you have summed up how I feel. She is a baby, and it's not fair on her to have this test without being able to understand what it is for and why. If it is something that she HAS to have, it woudld be a different matter but we can live without it, as we have done for months already.

I think my mind is pretty much made up now. We already have certain foods on prescription without having any tests, so as long as we can still have them (which reduces our weekly food shopping bill by around

mommida Enthusiast
mommida
Posted

It seems like you have made up your mind.

I will tell you about putting our daughter through the gluten challenge. She was about 15 months old and still in diapers/nappies. She ended up with a urinary track infection and was hospitalized for dehydration (3 days on an IV). The blood test was taken the day before she became so ill. She was too sick to do the endoscopy with biopsy. The results from the blod test came back as positive only in one of the panels the day we got home from the hospital.

She had the genetic test done on a gluten free diet and she was positive for both DQ2 and DQ8. Diagnosed "probable Celiac" because she did not have "gold standard" of tests when she was 17 months old.

Life was great on the gluten free diet until she was 6. Celiac-like symptoms started up and seemed worse and she was vomitting up to 5 times a day. She had the endoscopy with biopsy and was diagnosed with Eosinophilic Esophagitus.

There may still come a time for an endoscopy with biopsy in the future. For now you are your child's advocate. I wish I hadn't given her gluten for the blood tests. As it turned out it did make her too sick to have the endoscope, like I thought. At least you can request the genetic test. It is not a perfect test, but you do not have to consume gluten.

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.