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

14 Year Old With Negative Blood And Biopsy

annmom

Recommended Posts

annmom Newbie
annmom
Posted

My 14 year old son has had a number of problems in the last year or so that seem to indicate a likelihood of celiac disease. He is delayed in growth and puberty (bone age of 12 for a 14 and 1/2 year old). He is anemic (HgB of 12.8 norm =13.6). He has a slightly elevated sedimentation rate (norm = 1-15, his is 23). He has occasional problems with stomach pain which can last all day. He also has trouble with headaches. He is positive for both celiac genes DQ2 and DQ8. His aunt (my sister) and his cousin (my brother's daughter) have both been diagnosed with celiac based upon extremely high numbers on the celiac panel. His blood test and biopsy were both negative so the doctors (pediatrician and gastroenterologist) are saying celiac is ruled out but I am thinking it is still a possiblity. I am frantic about missing his growth spurt because it is being inhibited by undiagnosed celiac disease. Anyone have ideas for what I should do next?

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

Celiac.com Sponsor (A8-M):


flagbabyds Collaborator
flagbabyds
Posted

You could find the gluten free diet without the docs prescription and see if he feels better. That is sometimes the best diagnosis tool because you can see if he could possible be a celiac. If it doesn't help, then put him back on gluten and see if he gets worse.

Just do some trials and errors and see what works and makes him feel better.

Jnkmnky Collaborator
Jnkmnky
Posted

Is he refusing to go gluten free if the tests don't indicate a need? I'm neg for everything, but my body doesn't like gluten. Would your son consider doing the diet for a few months to make HIS own decison? That may make him feel as though he has the control.

Simply-V Newbie
Simply-V
Posted
My 14 year old son has had a number of problems in the last year or so that seem to indicate a likelihood of celiac disease. He is delayed in growth and puberty (bone age of 12 for a 14 and 1/2 year old). He is anemic (HgB of 12.8 norm =13.6). He has a slightly elevated sedimentation rate (norm = 1-15, his is 23). He has occasional problems with stomach pain which can last all day. He also has trouble with headaches. He is positive for both celiac genes DQ2 and DQ8. His aunt (my sister) and his cousin (my brother's daughter) have both been diagnosed with celiac based upon extremely high numbers on the celiac panel. His blood test and biopsy were both negative so the doctors (pediatrician and gastroenterologist) are saying celiac is ruled out but I am thinking it is still a possiblity. I am frantic about missing his growth spurt because it is being inhibited by undiagnosed celiac disease. Anyone have ideas for what I should do next?

Well with the genes he has, I'd try to get him on a gluten-free diet for a while just to see if it helps. Otherwise, I'd start looking at other autoimmune disorders. From my research (dont ask me to quote sites, cuz I've read like 100 in the last 3 days so they all blend together) Celiac disease is linked to other autoimmune diseases such as Diabetes type 1, Thyroid issues. Its also prevalent in people with Lactose intolerance and food allergies, though these two could be side effects of Celiac, I haven't seen any research on it.

If he won't do the gluten-free diet, I'd have him do a food diary. Including times, amounts, and any symptoms he has during the day.. like headaches, tiredness, listlessness, attention problems, sleep problems. And the days when he has stomach pains, start looking at what he ate that day and the day before (or even the day before that). You may see the same things come up time after time.

Just my two cents..

nettiebeads Apprentice
nettiebeads
Posted

I agree with the others. The celiac tests are notorious for false negatives in adults and even more so in children. I'm sure your son doesn't consider himself a child, but physically speaking his age could have skewed the tests. Also, maybe he hadn't been consuming as much gluten as needed for the test's accuracy...myriad of scenarios as to why the negs. My current gp doesn't think that the tests are as reliable and sensitive as they should be. Probably in the future. Anyhow, with his genetic markers, I would strongly suspect celiac. The food diary is a good idea. Also just do a trial gluten-free diet. The diet challenge is a valid diagnostic tool; that's how I was dx'd 9 years ago, nothing else was done. No gluten, no problems. Gluten, problems galore. None of my other dr's since have questioned me or told me I still need to do the "official" tests. Your son is of the age to reason for himself, but I'm sure being male, he would love to be in a higher percentile on the growth chart.

Keep us posted; has he checked out the teen site on this forum? And having family members for him to talk to will help too.

Annette

mommida Enthusiast
mommida
Posted

I agree with the others, try the gluten free diet. It would appear that males don't seem to suffer from the symptoms as often as females. The genetic markers that he tested positive for are linked with other auto-immune diseases, that a gluten free diet can help. The book, Dangerous Grains, may help you make this decision.

L.

annmom Newbie
annmom
Posted
  • Author

Thanks for all the advice. My son is willing to try the gluten free diet so I think we will make it a go. He has been checked out for other auto immune diseases and tested negative on them - diabetes and thyroid problems so celiac seems the most likely. Does anyone think it is worth it to do the enterolab stool samples too?

Ann

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

Celiac.com Sponsor (A8-M):


nettiebeads Apprentice
nettiebeads
Posted
Thanks for all the advice. My son is willing to try the gluten free diet so I think we will make it a go. He has been checked out for other auto immune diseases and tested negative on them - diabetes and thyroid problems so celiac seems the most likely. Does anyone think it is worth it to do the enterolab stool samples too?

Ann

It's quite a chunk of money and you already know his gene type. Think positive - maybe with him off gluten he'll hit a growth spurt and you'll need the money for new clothes!

Annette

Guest nini
Guest nini
Posted

I say just go for the gluten-free diet and see how he does... my daughter's blood test was negative (although I'm convinced they did not do the correct tests) but she responded miraculously to the diet. She was three at the time, she just turned six, and she's doing exceptionally well on the gluten-free diet.

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. nanny marley
      - nanny marley replied to nanny marley's topic in Related Issues & Disorders
      3

      Manitol and mri

      Brilliant thankyou for the information I will contact them tomorrow, I was just concerned because I'm already in a bowel flare too , and I didn't want to take anything that would cause me more issues , especially with the way sweeteners make be feel I've had a really bad throat from this type of stuff before , and it upsets my digestive system too and I have...
    2. 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...
    3. 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...
    4. 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...
    5. Scott Adams
      - Scott Adams replied to nanny marley's topic in Related Issues & Disorders
      3

      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...
  • 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

    • nanny marley
      Manitol and mri

      By nanny marley · Posted

      Brilliant thankyou for the information I will contact them tomorrow, I was just concerned because I'm already in a bowel flare too , and I didn't want to take anything that would cause me more issues , especially with the way sweeteners make be feel I've had a really bad throat from this type of stuff before , and it upsets my digestive system too and I have a wedding in a week 😳
    • 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.
×
×
  • 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.