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

Maybe My Expectations Were Too High?


cdmom1

Recommended Posts

cdmom1 Rookie

Hi Everyone-

Well my 8 year old son has been gluten-free for 3 months now. Although he has adjusted well to the change in diet, nothing about him seems any different than before we started (he never had any visible problems, just short and thin). He has not gained any weight, and has not grown either. I have heard many people say how within a couple of months their children started putting on weight, and their kids shot up a few inches. I don't see any change. Our endocrinologist does not want to see him until he is a year gluten free to continue testing him for GH deficiency.

I guess I am just frustrated and probably need to be more patient. Guess I was hoping for some quick visible results but that clearly isn't happening. Anyone else have a child that took long to show some changes?


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



Celiac.com Sponsor (A8-M):



precious831 Contributor

How much does he weigh now? How tall? Last year when my DD went gluten-free, she gained 3lbs in a month. So the GI doctor and us were very happy about that. Then after that not much. A whole year has gone and she's gained about 2 lbs. She's 3 now and weighs 28 lbs. Now they're concerned again. The doc said to try going grain-free, which is hard because she avoids so much foods due to food allergies, I feel like I'm gonna lose my mind. I'm worried too because she has not grown much. She's been grain-free for close to a month and I'm really praying this it the answer.

I'm also grain-free, I can't tolerate any grains.

Hope this helps.

  • 2 weeks later...
CeliacMom2008 Enthusiast

I don't remember exactly when our son's growth spurt hit, but I don't think it was in the first 3 months. In fact, I'm almost positive it wasn't that soon. And he really did grow a ton. I think it was more about the 6 month mark, because if I remember correctly it was between spring pants and fall pants that I noticed the huge change. He was 8 1/2 when diagnosed.

T.H. Community Regular

My son was short, but not as thin as he was short.

His growth has not jumped up at all, but he's doing better in other ways. Emotionally more calm, less tired, etc... But he's still a little shorty, about a year later.

cyberprof Enthusiast

Hi Everyone-

Well my 8 year old son has been gluten-free for 3 months now. Although he has adjusted well to the change in diet, nothing about him seems any different than before we started (he never had any visible problems, just short and thin). He has not gained any weight, and has not grown either. I have heard many people say how within a couple of months their children started putting on weight, and their kids shot up a few inches. I don't see any change. Our endocrinologist does not want to see him until he is a year gluten free to continue testing him for GH deficiency.

I guess I am just frustrated and probably need to be more patient. Guess I was hoping for some quick visible results but that clearly isn't happening. Anyone else have a child that took long to show some changes?

You can see some info in my signature. My son went gluten-free/DF and has done great, but it was six months before he went into puberty (he was 15.5) and he began to grow after that. Prior to going gluten-free/DF his bone age was 12.5 and he looked like a 12 year old. At 15, he weighed 96 pounds and had only gained four pounds in the years between age 12 and 15.5. Now he's 6'1" and is still growing at age 17.

Just my (non-expert) opinion is that older kids (above age 5 or 6) don't recover their growth curve as fast as kids ages 3-5. But trust that he is getting healthier, bit by bit.

My son was always sick before going gluten-free. He "looked" sick all the time. He didn't sleep well. He also fell off the growth chart. The year before he went gluten-free/DF I told his pediatrician that something was wrong, I just didn't know what it was and asked him to test for leukemia, diabetes, thyroid cancer etc. The doc listened to my mother's intuition, but the doctor didn't consider or even mention celiac. I'm rambling but my point is that over then next few months you may see some good changes in your son as his body heals. The growth is just a part of that, and it will happen for your son. My best to you and your son.

Archived

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


  • 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
      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
      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
      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
      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
      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.