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. trents
      - trents replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers?
    2. Scott Adams
      - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger...
    3. Wheatwacked
      - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide. Both linked to cancers. Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers. A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor. Sourdough...
    4. jenniber
      - jenniber replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      5

      Celiac support is hard to find

      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    5. RMJ
      - RMJ replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      need help understanding testing result for Naked Nutrition Creatine please

      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means. However, the way the result is presented does look like it is below the limit of what their test can measure, so that is good.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,118
    • Most Online (within 30 mins)
      7,748
    Shiwaji
    Newest Member
    Shiwaji
    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

    • trents
      Blood Test for Celiac wheat type matters?

      By trents · Posted

      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers? 
    • Scott Adams
      Blood Test for Celiac wheat type matters?

      By Scott Adams · Posted

      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger both hyperthyroidism or hypothyroidism, worsen autoimmune thyroid diseases like Hashimoto's, and lead to goiter. Other side effects include gastrointestinal distress. The risk is highest for individuals with pre-existing thyroid conditions, and while dietary iodine rarely reaches toxic levels, unsupervised high-dose supplementation is dangerous and should only be undertaken with medical guidance to avoid serious complications. It's best to check with your doctor before supplementing iodine.
    • Wheatwacked
      Blood Test for Celiac wheat type matters?

      By Wheatwacked · Posted

      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide.  Both linked to cancers.  Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers.  A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor.  Sourdough natural fermentation conditions the dough without chemicals. Iodine was used in the US as a dough modifier until the 1970s. Since then iodine intake in the US dropped 50%.  Iodine is essential for thyroid hormones.  Thyroid hormone use for hypothyroidism has doubled in the United States from 1997 to 2016.   Clinical Thyroidology® for the Public In the UK, incidently, prescriptions for the thyroid hormone levothyroxine have increased by more than 12 million in a decade.  The Royal Pharmaceutical Society's official journal Standard thyroid tests will not show insufficient iodine intake.  Iodine 24 Hour Urine Test measures iodine excretion over a full day to evaluate iodine status and thyroid health. 75 year old male.  I tried adding seaweed into my diet and did get improvement in healing, muscle tone, skin; but in was not enough and I could not sustain it in my diet at the level intake I needed.  So I supplement 600 mcg Liquid Iodine (RDA 150 to 1000 mcg) per day.  It has turbocharged my recovery from 63 years of undiagnosed celiac disease.  Improvement in healing a non-healing sebaceous cyst. brain fog, vision, hair, skin, nails. Some with dermatitis herpetiformis celiac disease experience exacerbation of the rash with iodine. The Wolff-Chaikoff Effect Crying Wolf?
    • jenniber
      Celiac support is hard to find

      By jenniber · Posted

      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    • RMJ
      need help understanding testing result for Naked Nutrition Creatine please

      By RMJ · Posted

      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means.  However, the way the result is presented  does look like it is below the limit of what their test can measure, so that is good.
×
×
  • 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.