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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,559
    • Most Online (within 30 mins)
      7,748
    Valerie Ensor
    Newest Member
    Valerie Ensor
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • 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.