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

Just Found Out I Have Be Glutening My Son


Nic

Recommended Posts

Nic Collaborator

Back when my son was first diagnosed, I called all of the places we eat at or order from to see what he can still eat. I called my Chinese take out place and asked them if there is soy sauce in the fried rice. They said "no" only after a very difficult time of getting them to understand that I don't want to order any right now. So I went in to ask them in person and again they said there was no soy sauce in the rice. Now we eat with my mother every Friday night and have been alternating between the Chinese Food and one other place for the entire time he has been supposedly gluten free. About a month ago I noticed that the rice looked darker and I thought there has got to be soy sauce in here. I went back to the place and the same person said, "yes, there is soy sauce" in the rice. I asked to see it and they showed me those little packets. Surely you do not cook with these packets so then they show me a big bucket of soy sauce, second ingredient is "wheat". I almost fell over. This poor kid has been still symptomatic on and off for a year. No one knows why, we blame it on lactose (which I do believe he has a problem with) or IBS. No, it is probably the gluten I have been feeding him every other week. I am very upset with myself. What I do find odd though, is that he had a celiac panel run in the spring and it tested negative for antibodies. Why would he test negative if he certainly has been eating gluten at least 2 times a month for a year?

Nicole


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Maybe the soy sauce is such a small amount that it's enough to cause symtoms/damage, but not enough for it to be in his bloodstream. I was tested by Enterolab and had both the antibodies and autoimmune antibodies and was gluten-free. However, the antibodies did not show up in my bloodwork. Since they're in the intestine, they are doing some damage, but not enough for them to leak into the bloodstream. You can read more about this at www.enterolab.com, but I'm not suggesting he needs to be tested by them as you already know he has it.

Don't feel bad, we all make mistakes.

key Contributor

I don't think you can feel bad, but I personally have discovered that I will stay sick if I eat out. I can't eat out without getting sick from gluten, so I have given up. It is very frustrating, because I think even products in the grocery store that are on shared lines can have a very high risk for cross contamination ,but it usually isn't listed.

I am trying to cook most of my food from scratch and eat mainly unprocessed foods, because it is better for my family and I am tired for feeling sick. So far it is working wonderfully.

I think if it was a small amount then it would make him test negative.

You didn't knowingly feed your child wheat, but I wouldn't eat there again. They can't be trusted.

Monica

wonkabar Contributor

Don't beat yourself up over it...mistakes happen. You did everything you could; it sounds like there was a communication barrier. We unknowingly gave our son gluten for an entire week by giving him Apple-Cinn Quaker Ricecake mini's. His poops became gross again and his behavior was just awful until we realized that the cross-contamination was what the problem was. Isn't "mother guilt" a wonderful thing?? :P

Nic Collaborator

The guilt is horrible. Of course we won't eat there again and I feel sorry for him because for some reason, fried rice is like his favorite take out food (nothing else, just the rice :blink: ). I have checked into a bigger restaraunt and they said they will cook according to the our dietary needs but I can't imagine it will taste the same without the soy sauce (that I obviously never knew was there).

Nicole

penguin Community Regular
I have checked into a bigger restaraunt and they said they will cook according to the our dietary needs but I can't imagine it will taste the same without the soy sauce (that I obviously never knew was there).

Nicole

You could always ask them if they could use gluten-free soy sauce (kari-out has one) or use tamari when making things for your kid. Couldn't hurt to ask...

Even then, you could always add either of those things after the fact :)

Sarah8793 Enthusiast

Sorry this happened to you. I know I feel guilty when I accidentally gluten myself, but when it is your kids it is even a worse feeling. The most important thing is that you are vigilant and when you suspected something you asked and took action. I'm finding more and more that I can't eat out, mainly because of cc. Don't be too hard on yourself, this is a learning process. :)


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



Celiac.com Sponsor (A8-M):



TCA Contributor

A good friend of mine said that there is one thing guaranteed to come with motherhood - GUILT!!! I gave my son syrup with gluten and felt terrible. I'm so glad you figured it out. Try not to beat yourself up too bad

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748

    Jamie0230
    Newest Member
    Jamie0230
    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
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...