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

No Celiac Symptoms

marcar6

Recommended Posts

marcar6 Newbie
marcar6
Posted

Hello,

My son is 8 years old and weighs 41-lbs and hasn't grown for 6 months according to his doctor's reports. He is a picky eater at times. My son has always been small, so when he was 6 years old, his physician did a bone age determination resulting in a bone age of a 4 year old. He is quite active and is actually ADHD and very intelligent. Two weeks ago, he had bloodwork done and his doctor called me yesterday (Sunday) regarding his results. All bloodwork was in normal range except for the Celiac Tests. If I am remembering correctly, she said that the amounts would be in the normal range of 0-10 and his score was 70, and another score was at 79. To be honest, I know she said something about G and A,and TTT, but I didn't understand it at all, so I don't know which was which.

The Endocrinologist called me today and asked a million medical questions regarding genetics and current symptoms. My son is actually a healthy boy except for being delayed in growth. He does not get stomach problems except if he has the flu or something, which is seldom. (once every couple of years) They are going to call me with a date to get a biopsy of his intestine soon. My question is this....Are there other instances where someone would test high for celiac, but really not have it or have something else? Are there others out there with this type of symptom-free- diagnosis out there? By the way, there is no one in either family that has this disorder. I have Leinden Mutation, Pre-Ovarian Failure at 35 yrs., and my older sister has Crohn's Disease. No cancer of colon in family histories. Is there anybody that knows what could be going on here? Another thing was that the specialist asked about height and he thinks that this small stature has nothing to do with Celiac Dx. He thinks that he will grow to be at least 5'10" tall, give or take 2 inches.

Any help or concerns would be appreciated at this time as we are all a little confused and anxious.

Sincerely,

Marla

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

He actually may be symptomatic, the failure to grow and the ADHD can both be the result of undiagnosed celiac. False positives on blood work are basically unheard of but false negatives are common. Keep him on gluten until after the biopsy is done. The day the biopsy is done take him gluten free. You are in a great place to learn what you need to do to transition to the lifestyle. You should also have everyone in the family tested now even if they don't seem to be symptomatic. Silent celiac or celiac without strong GI symptoms can cause just as much damage to the body as to those who have daily D.

  • 2 weeks later...
bincongo Contributor
bincongo
Posted

He actually may be symptomatic, the failure to grow and the ADHD can both be the result of undiagnosed celiac. False positives on blood work are basically unheard of but false negatives are common. Keep him on gluten until after the biopsy is done. The day the biopsy is done take him gluten free. You are in a great place to learn what you need to do to transition to the lifestyle. You should also have everyone in the family tested now even if they don't seem to be symptomatic. Silent celiac or celiac without strong GI symptoms can cause just as much damage to the body as to those who have daily D.

I am a new Celiac. I told my daughter to ask her doctor about being tested. She was told if she didn't have any symptoms that she didn't need testing. Is this not true or is this just a doctor who doesn't know enough about Celiac. I haven't had time yet to go through this whole web site to check this out.

Skylark Collaborator
Skylark
Posted

I am a new Celiac. I told my daughter to ask her doctor about being tested. She was told if she didn't have any symptoms that she didn't need testing. Is this not true or is this just a doctor who doesn't know enough about Celiac. I haven't had time yet to go through this whole web site to check this out.

Celiac can be silent. People with silent celiac don't have GI symptoms but they are are still at high risk for vitamin deficiencies and osteoporosis. All of your first-degree relatives should be screened, whether or not they have symptoms.

GFinDC Veteran
GFinDC
Posted

Right, try a search on silent celiac or latent celiac. Symptom free people are in danger just like people with symptoms. And there are many, many symptoms besides digestive issues that are related to celiac.

bincongo Contributor
bincongo
Posted

Right, try a search on silent celiac or latent celiac. Symptom free people are in danger just like people with symptoms. And there are many, many symptoms besides digestive issues that are related to celiac.

Thanks to all you guys. I really think my daughter has Celiac because all the symptoms she has had for years but when I told her mine she said she didn't have any of those. She also had had a lot of problems getting pregnant and she was married six years before getting pregnant. Can anyone be specific about what blood tests should be ordered.

sb2178 Enthusiast
sb2178
Posted

antibody tests:

IgA and IgG AGA

IgA TTG (IgG TTG if available)

IgA EMA

total IgA

there are also DGP (deaminated gluten peptide, maybe?) antibody tests, which may or may not be available.

She absolutely must be eating significant amounts of gluten for the tests to even have a chance of being valid.

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
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    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

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.