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

Hypothyroidism

Nic

By Nic
in Related Issues & Disorders

Recommended Posts

Nic Collaborator
Nic
Posted

Hi, my youngest son so far has tested negative for Celiac although we will be looking into it farther as children under 5 often have false negatives. He has the chronic constipation that his Celiac brother had and also has hyptotonia and developmental delays. I recently learned that these are also symptoms of Celiac. Since he was an infant, every doctor suspected hypothyroidism due to the developmental delays, the hypotonia, and also the soft spot on the front of his head was open until he was two. And it was huge, I could fit the width of three fingers int there. He is also 52 lbs. which is in the 100 % for his age but pretty much only eats fruits, veggies, and pasta. Definitely does not over eat (I will also mention he is tall, 43 inches). My question is, can children test negative for something like this and really have it? Can it maybe just show up later? He tested negative when he was about 1 year old and I don't believe anyone ever looked at it again.

Nicole

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
Hi, my youngest son so far has tested negative for Celiac although we will be looking into it farther as children under 5 often have false negatives. He has the chronic constipation that his Celiac brother had and also has hyptotonia and developmental delays. I recently learned that these are also symptoms of Celiac. Since he was an infant, every doctor suspected hypothyroidism due to the developmental delays, the hypotonia, and also the soft spot on the front of his head was open until he was two. And it was huge, I could fit the width of three fingers int there. He is also 52 lbs. which is in the 100 % for his age but pretty much only eats fruits, veggies, and pasta. Definitely does not over eat (I will also mention he is tall, 43 inches). My question is, can children test negative for something like this and really have it? Can it maybe just show up later? He tested negative when he was about 1 year old and I don't believe anyone ever looked at it again.

Nicole

Hi Nicole, It is not only children that can show a false negative adults do at times also. In countries that test routinely asymtomatic children are checked at age 4 or 5 and then again at puberty. It can take a while for enough antibodies to show up. There are also times when a doctor will decide a low positive is a negative unfortunately. Considering he has a diagnosed celiac brother I would get the panel run again and as soon as he has the blood drawn I would put him on the diet. IMHO dietary response is the true test.

2kids4me Contributor
2kids4me
Posted

Were you wondering about false neg with celiac only, or the thyroid tests?

My daughter tested in normal range when she was an infant and again at 2 yrs. By the time she was 4 - her TSH was over 900 (normal is under 4) and her T4 was 5 (normal is over 12) and she had developed myxedema.

If your child is symptomatic then one would expect low levels of thyroid hormone and high TSH if the thyroid was the problem.

I am glad you are still investigating - something is not right metabolically and I really hope they are not making you feel like you are making him overweight. I went home really depressed after I saw a neuromuscular specialist and the first comment wsa " she is pretty pudgy" then another called her fat....

it felt like they judge first instead of seeing the issue - whcih is - she cant walk, she is gaining weight withiout eating much and something is wrong.

Good luck , I'll be thinking of you!

Nic Collaborator
Nic
Posted
  • Author

I am sorry if I sound ignorant but I really am regarding thyroid issues (my husband is hypothyroid but I never really investigated it the way I do Celiac). I was asking if hypothyroidism can be missed the way Celiac is when they are young. My doctor is actually wonderful about Lucas, he said, "he is in the 100 th percentile, but don't worry, he is not fat, just a big boy". Like I said, he is tall also (in the 90th percentile). He was born 10.8 pounds and 22 and a half inches. But I do not feel as though his food intake supports his weight. He rarely eats breakfast (even though it is served to him daily), snacks on only fruits during the morning, has lunch but does not over eat, and then dinner. An occassional snack in the afternoon and dessert after dinner. I monitor his servings well on any treats that he does eat, for example 3 cookies or 1 brownie, a handful of chips on rare occassions. Am I understanding you correctly that your child tested neg. for hypothyroid first and later tested positive?

Nicole

zip2play Apprentice
zip2play
Posted

Hypothyroid can also be horribly misdiagnosed for adults as well. I am still messing with thyroid conditions and I started seeing DR's about it in May of last year. After finally getting a sonogram, it was found I have 8 nodules on my thyroid. The surgeon and my DR disagree on how to treat it. I am currently waiting for us all to decided! :rolleyes:

Monica

2kids4me Contributor
2kids4me
Posted

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. Scott Adams
      - Scott Adams replied to RDLiberty's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Toothpaste question.

      There is no scientific evidence to suggest that hydrated silica or its relative, silicon dioxide, triggers a celiac-specific immune response or causes intestinal damage in individuals with the condition. The concern you likely encountered online is a common misconception. Here’s the key distinction: the protein in gluten (gliadin) is what causes the autoimmune r...
    2. Scott Adams
      - Scott Adams replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Probiotics

      There is no single "best" probiotic brand universally recommended for celiac disease. The goal of a probiotic in this context is to help support the gut microbiome, which can be disrupted by the damage caused by gluten exposure. The most important factor is not the brand name, but ensuring the product is certified gluten-free, as some probiotics use wheat...
    3. Scott Adams
      - Scott Adams replied to Colleen H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Celiac attack confusion and anxiety

      What you are describing, while terrifying and severe, is an experience that others in the celiac community have reported during a powerful reaction. The systemic inflammation triggered by gluten exposure in someone with celiac disease can absolutely extend far beyond the digestive tract, creating a cascade of symptoms that feel like your entire body is in...
    4. Scott Adams
      - Scott Adams replied to nanny marley's topic in Related Issues & Disorders
      2

      Manitol and mri

      The substance you're likely thinking of is "mannitol," which is a sugar alcohol, and it is indeed used as a sweetener in some "sugar-free" products. However, for an MRI, the drink is almost certainly "Mannite," which is a brand name for a laxative preparation used to cleanse the bowel before the scan. Its primary purpose is not to sweeten but to create a...
    5. Scott Adams
      - Scott Adams replied to bombier's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      KATZ CINNAMON DONUTS

      I'm so sorry to hear you're feeling so unwell, and I hope you recover quickly. While your personal experience of getting sick is absolutely valid, there are a few key inaccuracies in the information you've shared that are important to clarify for anyone else reading. The central misunderstanding is about oats and gliadin. Oats do not contain gliadin...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,789
    • Most Online (within 30 mins)
      7,748
    klholt
    Newest Member
    klholt
    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
      Toothpaste question.

      By Scott Adams · Posted

      There is no scientific evidence to suggest that hydrated silica or its relative, silicon dioxide, triggers a celiac-specific immune response or causes intestinal damage in individuals with the condition. The concern you likely encountered online is a common misconception. Here’s the key distinction: the protein in gluten (gliadin) is what causes the autoimmune reaction in celiac disease. Hydrated silica and silicon dioxide are minerals, chemically inert compounds of silicon and oxygen, and are completely unrelated to gluten proteins. They are widely used as abrasives in toothpaste and anti-caking agents in food powders because they are stable and non-reactive. While any individual can have a unique sensitivity to any substance, there is no mechanism by which these silica compounds would mimic gluten or exacerbate celiac disease. Your diligence in using a certified gluten-free toothpaste is the correct and most important step, as it eliminates the risk of cross-contamination with wheat-derived ingredients like starch. Based on current scientific understanding, the hydrated silica in your toothpaste is not an issue for your celiac management.
    • Scott Adams
      Probiotics

      By Scott Adams · Posted

      There is no single "best" probiotic brand universally recommended for celiac disease. The goal of a probiotic in this context is to help support the gut microbiome, which can be disrupted by the damage caused by gluten exposure. The most important factor is not the brand name, but ensuring the product is certified gluten-free, as some probiotics use wheat-derived starches or are produced in facilities that handle gluten, posing a cross-contamination risk. Furthermore, the specific strains of bacteria can matter; some research suggests strains like Lactobacillus and Bifidobacterium may be beneficial, but individual responses vary greatly. Because the supplement industry is not tightly regulated, choosing a reputable brand that undergoes third-party testing for purity and potency is key. 
    • Scott Adams
      Celiac attack confusion and anxiety

      By Scott Adams · Posted

      What you are describing, while terrifying and severe, is an experience that others in the celiac community have reported during a powerful reaction. The systemic inflammation triggered by gluten exposure in someone with celiac disease can absolutely extend far beyond the digestive tract, creating a cascade of symptoms that feel like your entire body is in revolt. The severe pain, neuropathy, muscle and jaw tension, and intense anxiety and confusion are all potential manifestations of this body-wide inflammatory and autoimmune response. It's a well-documented phenomenon that a celiac attack can provoke a significant neurological and psychological component, including "brain fog," disorientation, and panic-level anxiety. While your first step should always be to meticulously re-check all foods, medications, and even cross-contamination sources, it's also possible that a previously safe product has changed its formula or that you encountered a hidden source. 
    • Scott Adams
      Manitol and mri

      By Scott Adams · Posted

      The substance you're likely thinking of is "mannitol," which is a sugar alcohol, and it is indeed used as a sweetener in some "sugar-free" products. However, for an MRI, the drink is almost certainly "Mannite," which is a brand name for a laxative preparation used to cleanse the bowel before the scan. Its primary purpose is not to sweeten but to create a clear image by distending the bowel and stimulating a bowel movement. While the names sound similar, the function and formulation are very different from a small-quantity sweetener. That said, your concern is valid and should be addressed with your healthcare team. The most important step you can take is to call the MRI department or your referring doctor directly. Explain your specific reaction to sweeteners in detail—mentioning the throat and ear sensations is crucial as it could indicate a more significant sensitivity. They can confirm the exact drink they use, check its full ingredient list for you, and determine if an alternative prep is available or if pre-medication is recommended to ensure your safety and comfort during the procedure.
    • Scott Adams
      KATZ CINNAMON DONUTS

      By Scott Adams · Posted

      I'm so sorry to hear you're feeling so unwell, and I hope you recover quickly. While your personal experience of getting sick is absolutely valid, there are a few key inaccuracies in the information you've shared that are important to clarify for anyone else reading. The central misunderstanding is about oats and gliadin. Oats do not contain gliadin; gliadin is a specific protein found exclusively in wheat. The protein in oats is called avenin, which is similar in structure but is a completely different compound. For the vast majority of people with celiac disease or gluten sensitivity, pure, uncontaminated oats are safe. The reason "gluten-free" oats are necessary is because regular oats are frequently cross-contaminated with wheat, barley, or rye during growing and processing. Certified gluten-free oats are tested to ensure they are free from this cross-contamination. It's possible you may have a separate and less common sensitivity to avenin in oats themselves, or the illness could have been caused by another ingredient or even an unrelated virus. Given your expertise and severe reaction, it would be a good idea to discuss this with a doctor to pinpoint the exact cause. This article, and the comments below it, may be helpful:    
×
×
  • 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.