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

Latent Celiacs, What Advice Were You Given?

AGH2010

Recommended Posts

AGH2010 Apprentice
AGH2010
Posted

Hi everyone!

Was hoping to learn from what others have been told. My daughter tested positive on the ttg and EMA tests but her biopsies came back completely. Her doctor said she got to go down way too the bottom of her small intestines and too over 8 biopsies so she's fairly confident she would have caught some damage if it existed.

I've got her on the gluten-free diet nonetheless to see if it helps with her chronic constipation - and also because she's clearly making antibodies to gluten so why feed it to her unnecessarily.

I've been doing my own research and have seen the studies out there on latent celiacs but was interested in hearing what other people's doctors have suggested for kids with positive blood tests but negative biopsies.

Thanks in advance!

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

Celiac.com Sponsor (A8-M):


StephanieL Enthusiast
StephanieL
Posted

We were given the option to scope every year or go gluten-free and see if the ttg levels fell. We chose option #2 and have been gluten-free for 2 years now. After a few issues (thyroid stuff) DS finally is WNL for his bloodwork.

dcns65 Apprentice
dcns65
Posted

My 17 year old daughter had positive blood work, negative biopsy and decided to go gluten free. The doctors gave her the choice of being tested again in a year while eating gluten or go gluten free. For us it was the strong family history, thyroid issues already starting and knowing another girl who suffered for months before she was diagnosed. My daughter also did not want to risk getting sick as she headed off to college next year. Even after 6 months of being pretty much gluten free her numbers were still not in the normal range.

AGH2010 Apprentice
AGH2010
Posted
  • Author

So it sounds like it's typical for doctors to leave it up to us to decide whether or not to go gluten-free. I can't imagine the constant scoping and basically waiting for there to be damage.

Our doctor said that we don't need to worry about cross-contamination since she does not have celiac yet. Anyone hear that from their doctor as well? Obviously would make things much easier if that's true.

StephanieL Enthusiast
StephanieL
Posted

Our doctor said that we don't need to worry about cross-contamination since she does not have celiac yet. Anyone hear that from their doctor as well? Obviously would make things much easier if that's true.

Um...no, I don't think so. If she has elevated ttg's and + EMA, then those numbers won't fall to being within normal limits without being totally gluten free which does include cross contamination

T.H. Community Regular
T.H.
Posted

Our doctor said that we don't need to worry about cross-contamination since she does not have celiac yet. Anyone hear that from their doctor as well? Obviously would make things much easier if that's true.

Obviously, I'm not a doctor. However, IMO, there doesn't seem to be enough research into this disease, testing, and gluten thresholds to warrant that automatic recommendation. It may be true, but it seems possible that it isn't. You'll probably have to make up your mind on that based on your and your daughter's experiences.

My son tests negative on the blood test, so he doesn't even HAVE celiac disease, but after my brother, myself, and his sister both came back positive, we had him on the gluten-free diet, too. He had problems clear up that had been bothering him for years.

Because he lives in a gluten free household and we're buying food for Celiacs, we always had gluten-free food that avoided cross-contamination. On a couple recent trips though, my husband allowed him to have 'just' gluten free food without worrying about cross-contamination. That's how we found out that it makes him sick. It's done it every time since then, too.

According to your doctor's theory, he shouldn't have a problem with cc, because he doesn't have Celiac Disease. Someone forgot to give my son's body the memo. ;) We've had to make our own judgement about how much gluten our son can tolerate. We are still working on figuring out how much he needs to avoid, but cc is definitely an issue for him.

I don't know that we would have figured it out without having gone completely off gluten first, though.

lil'chefy Apprentice
lil'chefy
Posted

We were given the option to scope every year or go gluten-free and see if the ttg levels fell. We chose option #2 and have been gluten-free for 2 years now. After a few issues (thyroid stuff) DS finally is WNL for his bloodwork.

What is WNL? What thyroid stuff?

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

Celiac.com Sponsor (A8-M):


StephanieL Enthusiast
StephanieL
Posted

What is WNL? What thyroid stuff?

WNL= within normal limits. Sorry, the medical professional escapes from me at times.

After 18 months of DS's ttg's remaining high and a few off TSH levels and the help of people here I demanded we see an endocrinologist. In March DS was put on synthroid. His ttg's at 24 months were finally normal. The thyroid issues (I believe) were causing his ttg's to remain elevated even though he was totally gluten-free and cross-contamination wasn't the issue.

Mom-of-Two Contributor
Mom-of-Two
Posted

Hi there! I appear to have a "latent" celiac kiddo as well- I had my kids tested back in April after learning I myself have celiac disease, in January. Just wanted to get a baseline on them, they didn't have abdominal symptoms. My 8 year old came back with a ttg of 78.20 so he sent her for a scope, which was totally normal, also 8 biopsy samples, very good GI dr at a children's hospital, I feel the endoscopy and biopsies were done excellently. However, since her villi were "beautiful" as the GI dr said to us, he was not willing to diagnose her as celiac. He also didn't run any other tests on her, only tTG and the total IGA number. He told us she is likely in the latent form of the disease and may never develop symptoms- to feed her normally and re-test every 6 months or come back if she gets symptoms!

Went for a second opinion at the Cleveland Clinic where I am seen myself, this pediatric GI dr specializes in childhood celiac- guess what, he told me the same thing!! He tested her for the EMA and Vitamin D, CBC, iron. She was vitamin D deficient, and POSITIVE on the EMA. At that point, I had my answer, not to mention the genetics since I have celiac myself- they DID try for gene testing for her, but insurance denied it twice. Not paying out of pocket when I am proof of the genetics! He also got the biopsy results to have his pathology take a look, just to be certain nothing was missed- everything was normal, he said if there were any abnormal number of cells or anything, that he could use that to diagnose, but, not even increased lymphocytes.

So, we have decided to be gluten free and raise her with celiac, which is my suggestion to you as well! Why hang around and wait for your child to get damage, we are lucky that our kids don't have damage YET! Damage means vitamin deficiencies, maybe trouble digesting lactose, and eventually symptoms of celiac disease. For kids, growth issues as well, I just can't take that chance for my daughter. I am sure you feel the same.

I do wish I would have gotten a biopsy confirmed diagnosis on her, but what can you do? I wanted to deny it, after two good doctors told me to NOT put her on a gluten free diet. But I will not wait around for my very HEALTHY kid to get sick! And, I will NOT keep re-scoping the kid to check for damage! Good grief!

Good luck to you, sounds like our kids are quite similar!

StephanieL Enthusiast
StephanieL
Posted

Just to add too, our Cleveland Clinic Dr. called Dr. Fassano at the Maryland Celiac clinic and he was the one who said to either biopsy every year till there was damage or to go gluten-free and see if the ttg's came down and if so, that was our answer (being Celiac).

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

    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • 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.
×
×
  • 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.