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

Best Test To Diagnose An 11 Yr Old?

Kimberly57

Recommended Posts

Kimberly57 Newbie
Kimberly57
Posted

Hi all,

First, I want to introduce myself. I'm Kimberly, mom to three, 11, 10 and 6. I live in Morgan Hill, CA. I was very recently diagnosed with celiac and have been happily symptom free since following a gluten-free diet. It took 9 years and countless tests to get diagnosed. I'm very grateful.

My every mom instinct and my heart tell me that my 11 yr old son has celiac. I would like to get a definite diagnosis for several reasons, but because of my many misdiagnoses and a reluctant pediatrician, I've been dragging my feet. I want to get the test that will best diagnose him. What should I ask for?

Thanks so much,

Kimberly

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

Welcome to the board, Kimberly!

All of your first degree relatives, regardless of symptoms, should be tested. All children, siblings, and your parents.

"Q: Why do my family members need to be screened for celiac disease?

When the diagnosis is established in one family member, their first- degree relatives (parents, siblings and children) should have blood tests for celiac disease. This is because at least 10% of family members will have the disease, even if they are asymptomatic. Screening is also recommended for second-degree relatives (grandparents, grandchildren, aunts, uncles and cousins) as they are also at an increased risk for celiac disease. Family members who already have an autoimmune disease are at a greatly increased risk to have celiac disease (25%).

The reasons to diagnose family members prior to the development of symptoms include the prevention autoimmune diseases and malignancy." (taken from: Open Original Shared Link

If your pediatrician isn't willing to test your children, contact a local Celiac support group and ask for a recommendation from their members. Your children, regardless of symptoms, should definitely be tested.

The bloodwork they need done:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Some goods sites with info:

www.celiacdiseasecenter.columbia.edu

www.celiaccentral.org

www.celiacdisease.net

gfpaperdoll Rookie
gfpaperdoll
Posted

all you need is enterolab.com

Good for your mommy instincts...

cyberprof Enthusiast
cyberprof
Posted
Hi all,

First, I want to introduce myself. I'm Kimberly, mom to three, 11, 10 and 6. I live in Morgan Hill, CA. I was very recently diagnosed with celiac and have been happily symptom free since following a gluten-free diet. It took 9 years and countless tests to get diagnosed. I'm very grateful.

My every mom instinct and my heart tell me that my 11 yr old son has celiac. I would like to get a definite diagnosis for several reasons, but because of my many misdiagnoses and a reluctant pediatrician, I've been dragging my feet. I want to get the test that will best diagnose him. What should I ask for?

Thanks so much,

Kimberly

I just went through a similar process with my 14 yo son. (You can read it in my signature.) My bloodwork was negative and so was my son's. The blood tests are good at ruling IN celiac (e.g., if you have postitive bloodwork for gluten antibodies, then you definitely have celiac.) but are not definative in ruling it out. My feeling is that I did not have enough "damage" to my small intestine to show up in the blood work. My son, too. That's a good thing!

If you have the blood test and it's negative, you might be able to push for a referral to a GI doc based on your celiac diagnosis. Sometimes docs respond to things like Happygirl listed - like the Celiac Center @ Columbia's info. That's what we did. However, the GI offered to do an endoscopy on our son but my husband didn't like the risks, which are small but there nonetheless. It was the right decision for us but I honestly respect parents who have had the endoscopy done - you just have to be comfortable with your decision because it is your child. Certainly, if my son doesn't have some improvement soon we may do a 'scope to rule out other things. But he just went gluten free last week, after receiving the Enterolab results.

We decided to do Enterolab (paid out of pocket) because my son didn't want to go gluten free without "proof", and being a teenager it is hard to get teenagers to do something if they don't "believe" in it.

It was the best decision because we now know that he has one celiac and one gluten sensitive gene, which is why he is having lots of symptoms - mainly non-GI symptoms like growth failure. He has encouragement to stay gluten free and casein (Milk) free too.

All of my worry was based on "mother's instinct" and I am glad you are listening to yours.

Best of luck,

~Laura

Puddy Explorer
Puddy
Posted

I have a question about testing children, also, although mine are much older....21 year old twins and 23 year old son. They are all without obvious symptoms, but then so was I. If the doctor does the blood tests for the IGA levels, etc. and they come out negative, do I request the gene test, also? I'd like them to know if they are carriers of the gene as I am. If they don't have the gene, am I correct in thinking that they don't have to worry about developing celiac disease later in life. I read that on another site somewhere. Thanks for your help.

happygirl Collaborator
happygirl
Posted

This may help: Open Original Shared Link

Puddy Explorer
Puddy
Posted
This may help: Open Original Shared Link

Thanks so much, happygirl. That is exactly the same site I had read about it on, just couldn't remember where I saw it!

I'm printing it out to take to my doctor.

Thanks again.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,961
    • Most Online (within 30 mins)
      7,748
    Noa
    Newest Member
    Noa
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.