Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Please Help! I Need Some Expert Opinions.


pinkdljj

Recommended Posts

pinkdljj Rookie

My daughter, Julia, had diarrhea when she was 14 months old for 7 weeks. I finally figured out it was the gluten. I have celiac disease myself and it took me 10 years to finally diagnose it after being sick for way too long. Once I stopped her gluten and had enterolab test her stools, her diarrhea stopped. Her enterolab tests revealed she has antibodies against gluten and has 1 celiac gene and 1 gluten sensitivity gene.

Now she has been off gluten for 8 months. She has been accidentally gluttened and she vomited and had diarrhea within the first 24 hours.

This last weekend I found her in the bathtub with ritz crackers while we were on vacation. I was waiting for the diarrhea and vomiting, but nothing happened. So I was confused so I gave her a chocolate chip cookie at the grocery store the next day. Still nothing. Then I gave her a graham cracker and nothing. What is going on? Did the sensitivity leave? I don't know what to do. She loves the gluten, of course, but is it really hurting her in ways I can't see? After convincing her doc she had a sensitivity and now this, it is strange.

Please, if anyone has experienced with this it would help me understand. What is the best thing to do for her? Do I treat her as if it is poison or let her have some? Any help would be much appreciated.

I want her to live a normal "child" life, but I'm determined to not let her get sick from gluten.

Thanks for any input. This whole thing is very confusing. The ped's tests all came back negative for celiac and gluten allergies but enterolab came back positive.

Leslie


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



Celiac.com Sponsor (A8-M):



Ridgewalker Contributor

I know how confusing it is. I've been there, and I still go through it. But you've got to stop giving her the gluteny food. You know she is gluten intolerant. Let me sum up what you just wrote:

-Your daughter had diarrhea for 7 weeks, and it stopped when you took her off gluten.

-Her mother has Celiac, which is more hereditary than doctors will have you believe.

-She has a Celiac gene and a gluten intolerance gene.

-Her gluten intolerance was confirmed when she was accidentally glutened, which gave her GI illnesses.

The sensitivity didn't leave. Unless it was caused by another underlying disease, the intolerance/Celiac can't leave. What's happening right now is confusing, I know, but some people's bodies apparently heal enough that they don't have a VISIBLE reaction every time they get glutened. But damage can still occur on the inside.

Other people keep the strong reaction their whole lives... it's so individualized.

If you keep feeding her gluteny foods, though, she's going to get sick eventually.

slmprofesseur Apprentice

The gluten could affect her growth long term, motor skills, and behavior. Is it worth the risk?

Lockheed Apprentice

I know I got celiac disease from my mom's side of the family.. at 5'2" I'm the tallest female even though my dad is 6'3" after having had polio as a kid. I shouldn't be this short. And if you tell me it's not the celiac's disease I'll point out that at 20 I was diagnosed with osteoporosis because no one thought to check my complaints and they kept on feeding me wheat anyways. Just because she's not having outward signs or symptoms doesn't mean that there isn't internal damage being done. Not to mention that sensitivities are more a dosage response issue. A smaller dose triggers a smaller response but frequent small doses lead up to a large dose in the system and an inevitable large response. So low gluten is not even an option.

pinkdljj Rookie

Thanks everyone for the advice. It's sometimes hard to do the right thing when there are no outward symptoms, but I know that keeping her gluten free is the very best for her. I didn't have symptoms until I was really sick. If I can prevent that from happening to her than it is my responsibility as her mom.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

    2. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

    3. - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

    4. - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

    5. - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,363
    • Most Online (within 30 mins)
      7,748

    NAC
    Newest Member
    NAC
    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

    • Scott Adams
      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...