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

New Here, Looking For Info, Have Some Questions


Guest GoofyG

Recommended Posts

Guest GoofyG

I've just started hearing about Celiac disease. I've been looking up some info. My children are young so I don't know if effects them yet or not. I have a 3 yr old who weighs 24lbs. She has only gained 4lbs since she was 2. My 11mos old weighs 15lbs. Both of them eat all the time, and they eat a lot. They both love everything, they never turn their nose to anything. their teachers can't believe how much they eat. I was going to talk to their pediatrician about this. I wasn't for sure if they were old enough though. I'm still looking up info. I just don't know why they both don't put weight on. The both have been diagnosed with Failure to thrive. I hate that title, I feel like I've failed with them. I'm also noticing that they are trying Gluten Free for ADD and ADHD. I wonder if that would have helped with my ADHD. If anyone knows anything about kids, or if my kids may be to young. I'm just lost on why they don't gain weight, when they eat everything. If I'm in the wrong place then I'm sorry.

The oldest has been test for CF, and she doesn't have it. They now test the babies after you have them in the hospital where I live. SO I know neither of my kids have CF.

When they do a metabolic test. Does that test for celiac disease too?

FRUSTRATED


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Welcome!

I think you are on the right track researching this on your own so that you are informed and aren't just relying on the doctor's opinion.

I found something interesting on failure to thrive. There can be several reasons for it, but since your kids eat a lot, most of them can be ruled out. Here's what's left. I found this information at Open Original Shared Link

Cystic fibrosis, chronic liver disease, and celiac disease are conditions that limit the body's ability to absorb nutrients. These are known as malabsorptive disorders - the infant may eat a lot, but his or her body doesn't absorb and retain enough of that food. Celiac disease results from a sensitivity to a dietary protein found in wheat and certain other grains. The immune system's abnormal response to this protein causes damage to the lining of the intestine, interfering with its ability to absorb nutrients.

an intolerance of milk protein. This condition can initially lead to difficulty with absorbing nutrients until it's recognized. It can also put an entire class of food out of reach, restricting the child's diet and occasionally leading to failure to thrive.

I don't think it would hurt a bit to have them tested for celiac disease. It's a blood test. Be sure they do all five of the tests ... someone else will post what they are. Many docs only do the IgA, but it's not enough.

Archived

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

  • 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 replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    3. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

    4. - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

    5. - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748

    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • 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.