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

16 Mo. Old Ds Just Diagnosed W/celiac

Disney323

Recommended Posts

Disney323 Apprentice
Disney323
Posted

This is my 1st post and I'm glad I found this site. I am sure I will get most questions answered. The only reason we had our son tested was because he has no interest in eating and doesn't gain much weight. He is currently 19 lbs. He has had no other symptoms. Normal bowel movements, no tummy aches that we know of, no vomiting and doesn't seem to be in any type of distress. Dr. said 1 part of the test was an abnormal # and the other 2 parts of it were normal. Whatever that means. He is being sent for a biopsy in 2 weeks. I am so nervous. What can I do while we wait? TIA

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

TIA:

First, welcome to the Board. Second, there are many mothers or family members with young children that have celiac issue, or just issues.

I also am glad that you found us. The knowledge is here.

happygirl Collaborator
happygirl
Posted

Disney:

Welcome to the board...I am happy you have found us!

His results could indicate that your child has a problem with gluten, which is probably Celiac.

Your child needs to continue to eat gluten before the biopsy. Do not start the diet until after the biopsy. Talk to your son's doctor and ask to have the full blood panel run. There are FIVE parts to the Celiac panel. You want the bloodwork and biopsy run while he is eating gluten. You also need to make sure that the GI takes multiple biopsies in multiple sites in the small intestine. Celiac can be a patchy disease. A biopsy can rule "in" Celiac but cannot rule "out" Celiac, because the damage can be easily missed. To ensure a better chance, multiple biopsies from multiple locations are needed.

Here is the link to the full tests. Dr. Green is a leading Celiac researcher and physician at Columbia University and this is their website:

http://www.celiacdiseasecenter.columbia.ed...C05-Testing.htm The reason that it might be worth it to have the full testing done, is so that you have done it while he is eating gluten, and don't have to go back at some point to "challenge" gluten. At the very least, it is worth printing out the info about the tests, the importance of using all five tests, and discussing it with your doctor.

Celiac patients vary GREATLY in their symptoms....from severely debilitated to absolutely no symptoms, and everything in between (mild to moderate to not nice at all!). Some people have diarrhea, some constipation. Some gain weight, some lose weight. I think these contradictions indicate why Celiac is called a "medical chameleon" and often hard to diagnose.

All this being said....there are people who don't have Celiac but have non-Celiac gluten intolerance. They don't have the intestinal damage, but still have a problem with gluten. The Celiac panel does not test for gluten intolerance. So, even if the results are negative by chance, it still might be worth it to try the diet. Plus, testing in children under 2 is difficult, as their immune system is still developing...so he *could* have Celiac and it not show up on the biopsy. The bloodwork and his symptoms indicate *something* is going on....and it very well could be a problem with gluten. I think trying the gluten free diet would be worth a shot, no matter what.

Best of luck, and let us know what we can do to help!

Laura

rez Apprentice
rez
Posted

I agree w/ previous posters. I would ask which tests were run and which test was abnormal. There are two blood tests that are very specific to Celiac and two others which can mean many other disorders as well. Good luck.

jayhawkmom Enthusiast
jayhawkmom
Posted

I find it interesting that they would test a child so young, who had no symptoms. Do you or your husband have Celiac? So many doctors are clueless about Celiac, so I'm just fascinated to read about one who sent a kiddo with no symptoms for testing.

Bravo to your doctor!! =)

My older son was sent for testing at 2, because he was failing to gain weight. He weighed 24 lbs at one year... he weighed 24 lbs at 2 years. The blood tests, from what I was told, were negative. At 8.5 - he had positive blood tests, much to my dismay.

I agree with the others, you need to get a hold of the actual results of the blood tests, it seems as if there are missing pieces ... and you need to keep your little one on a gluteny diet until after the endoscopy.

There are actually 5 parts to a Celiac panel. Some doctors will only look at a portion of that... others will consider the whole picture.

You should see results for:

tTg

Gliadin Antibodies - IgG & IgA

EMA

and total syrum IgA.

The gliadin antibodies are often "dismissed" by some doctors, although... clearly they indicate an autoimmune reaction to gluten, with or without Celiac disease. However, when it's only the IgG anti-gliadin antibody that is positive, it usually requires further investigation. My daughter and I are examples of that. Endoscopies came back clear for villi damage, yet... other "damage" consistent with latent Celiac.

My older son had positive tTg, IgG, & IgA antibodies. Combined with a positive dietary response and the total disappearance of a DH type rash once gluten free.... it's pretty obvious.

Gosh... I'm rambling here, sorry about that!!!

Once you have your baby's results.... if neither you or your husband are Celiac, you might want to have some testing done yourselves. One of you very well may be.

Best wishes to you.

Disney323 Apprentice
Disney323
Posted
  • Author

Thanks to all of you who responded to my post. I spoke with my son's dr. today and she said that the IGA and serum came back normal but the one specific for celiac (which I have no clue what it is) came back at 97% and it should be only about 19%. Neither my husband or I have Celiac (that we know of) I do suffer IBS and am wondering if it has anything to do with it. We will both be tested once our son is confirmed. I will go into the GI with many questions. Thank You very much!

jayhawkmom Enthusiast
jayhawkmom
Posted
Neither my husband or I have Celiac (that we know of) I do suffer IBS and am wondering if it has anything to do with it.

Celiac is very often misdiagnosed as IBS!!!

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

Celiac.com Sponsor (A8-M):


Kibbie Contributor
Kibbie
Posted
This is my 1st post and I'm glad I found this site. I am sure I will get most questions answered. The only reason we had our son tested was because he has no interest in eating and doesn't gain much weight. He is currently 19 lbs. He has had no other symptoms. Normal bowel movements, no tummy aches that we know of, no vomiting and doesn't seem to be in any type of distress. Dr. said 1 part of the test was an abnormal # and the other 2 parts of it were normal. Whatever that means. He is being sent for a biopsy in 2 weeks. I am so nervous. What can I do while we wait? TIA

My daughter is 23 months currently and was diagnosed with Celiac Disease at 18 months old. Fruits and veggies are safe to eat and from there it will depend on what your son likes to eat!

what does he like to eat?

Disney323 Apprentice
Disney323
Posted
  • Author

what does he like to eat?

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. marlene333
      - marlene333 replied to Grace Good's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Bee balm lipbalm not gluten free

      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    2. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      jmartes, Thank you for sharing more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is...
    3. Scott Adams
      - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    4. catsrlife
      - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady...
    5. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,263
    • Most Online (within 30 mins)
      7,748
    Elyn Joy
    Newest Member
    Elyn Joy
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • marlene333
      Bee balm lipbalm not gluten free

      By marlene333 · Posted

      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    • Mari
      Related issues

      By Mari · Posted

      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      Patiently Waiting to See Results

      By catsrlife · Posted

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
×
×
  • 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.