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

New Here

party-of-eight

Recommended Posts

party-of-eight Newbie
party-of-eight
Posted

Hello everyone!! I just got back from the doctor with my 9yo. I requested to have her tested for celiac disease. Almost 2 months ago we discovered that the rash my husband has on his backside is DH. He has been gluten-free for a month and a half and he has had some great improvements in his health(and his rash). We have not had him tested yet because we would rather wait until the 1st of the year for deductable reasons.

So anyway, with all of the reading and research I have been doing on gluten-free living and celiac disease I have come across numerous symptoms that match my 9yo daughter. She has....

-Extensive dental problems(the rest of my kids have barely had a cavity)

-She is short

-She bloats badly around her middle

-She craves carbs and sneaks food constantly

-She can be irritable and moody

-She had a severe problem with dairy as a baby (I breastfed her and had to eliminate dairy)

-A few years ago she had her blood clotting factors come back way outside normal. By the time we saw a specialist they were closer to normal

-She gets dark circles under her eyes

-She sleeps more than my other kids

I took her to the doc today who begrudgingly ordered the blood tests but insisted that they would probably come back fine. She claimed that celiac disease starts in infancy and children with celiac disease are thin and small (which my daughter isn't). I know that that isn't always true.

So am I crazy?? Do these things sound like a cause to suspect celiac disease in a child with a father who has DH?

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Hello everyone!! I just got back from the doctor with my 9yo. I requested to have her tested for celiac disease. Almost 2 months ago we discovered that the rash my husband has on his backside is DH. He has been gluten-free for a month and a half and he has had some great improvements in his health(and his rash). We have not had him tested yet because we would rather wait until the 1st of the year for deductable reasons.

So anyway, with all of the reading and research I have been doing on gluten-free living and celiac disease I have come across numerous symptoms that match my 9yo daughter. She has....

-Extensive dental problems(the rest of my kids have barely had a cavity)

-She is short

-She bloats badly around her middle

-She craves carbs and sneaks food constantly

-She can be irritable and moody

-She had a severe problem with dairy as a baby (I breastfed her and had to eliminate dairy)

-A few years ago she had her blood clotting factors come back way outside normal. By the time we saw a specialist they were closer to normal

-She gets dark circles under her eyes

-She sleeps more than my other kids

I took her to the doc today who begrudgingly ordered the blood tests but insisted that they would probably come back fine. She claimed that celiac disease starts in infancy and children with celiac disease are thin and small (which my daughter isn't). I know that that isn't always true.

So am I crazy?? Do these things sound like a cause to suspect celiac disease in a child with a father who has DH?

No crazy lady here!! Your doctor is ill informed. Celiac can occur at every age.Your children may have a genetic pre-disposition as well (although no guarantee that they will develop celiac disease). In most people, it takes an average of 12 years for an official diagnosis. It was formerly known as a childhood disease. It is diagnosed in all ages and unfortunately often too late, when other more serious diseased have moved in.

Please insist on a full Celiac Panel for your daughter. Gene tests are also available. The gene testing will let you know if you are genetically susceptible to Celiac at twenty percent, or not capable of developing celiac disease.

Please keep us informed and hope we can be helpful. :)

Skylark Collaborator
Skylark
Posted

Your doctor has not read anything on celiac since medical school, and I suspect that was a long time ago. Celiac is genetic and the single biggest risk factor is a first-degree relative with celiac. It does not always start in infancy and in fact can start any time in life.

If the blood tests come back normal, find a more openminded doctor and push for a biopsy. Once the testing is done you can try her on the diet, as not everyone who is gluten sensitive gets positive results on the celiac tests.

BeckyWJ Rookie
BeckyWJ
Posted

My daughter was 9 yo when we figured out her migraines and hallucinations were caused by gluten. Some people thought we were crazy by believing gluten could cause her problems. But after a little over a year being gluten free, the skeptics are skeptics no more. Even had an er doctor say it could be a psychiatric issue. And we found out it was gluten on our own because no doctor ever mentioned celiac disease. So she's never even had a formal diagnosis. She had a celiac panel done with some slightly elevated numbers after we discovered gluten took care of the problem.

All that to say, most doctors are ill-informed about celiac. Some act like it's not even a "real" disease. Research proves otherwise. So...once you're finished with testing, even if results are negative, you could put her on gluten free anyway and see what the results are. Just like your dh...results don't lie.

Yes, your daughters symptoms could be caused by gluten. And I think you're a great mom for figuring this out and insisting her dr do the blood tests. Insist on having a copy of the results...some people on here can decipher them pretty well!

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. cristiana
      - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

      Hi @KathyR37 and a very warm welcome here. I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana
    2. trents
      - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    3. Theresa2407
      - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

      thank you for your advice. I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated. I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    4. KathyR37
      - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and gloves when cooking for them. One huge problem...
    5. Scott Adams
      - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are fee...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,816
    • Most Online (within 30 mins)
      7,748
    KTH
    Newest Member
    KTH
    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

    • cristiana
      New here

      By cristiana · Posted

      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      New here

      By trents · Posted

      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      Probiotics

      By Theresa2407 · Posted

      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      New here

      By KathyR37 · Posted

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      New here

      By Scott Adams · Posted

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.