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

Newly Diagnosed 16 Mo Old


mcarbone

Recommended Posts

mcarbone Rookie

Hi parents out there. My daughter was diagnosed with Celiac a couple of months ago. I am having a hard time trying to figure out if i make my 4 year old go gluten free or not. Up to this point i have not completely. Not sure what to do when he wants something that is not gluten free that i dont have the same thing that is gluten free for my daughter. Just wondering how others deal with this situations.


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



Celiac.com Sponsor (A8-M):



gfgypsyqueen Enthusiast

I don't think I follow the norm on this topic, but I'll tell you I do with my kids. Five food allergies spread between the three of us. There is just no possible way that I can justify making perfectly safe meals and snacks everyday that 100% safe for all of us. Just too hard and in my opinion, it sets a bad example. Maybe not bad, but definately a difficult mindset. What do you do when they go to school? Not everyone in the class will be eating gluten-free snacks just because of one child.

So to me, if you do not have Celiacs, you do not need to be on this diet. They can eat gluten-free at home and gluten when they go out and that will not cause any harm. And, my kids get similar, but NOT the same foods. Everybody gets a snack, but one might have Oreos and the other might have a gluten-free/CF donut. Everybody eats a hot dog for lunch, some have bread and some do not.

Oldest child developed nut allergy at 2. It is anaphylactic (big believer in MedicAlert bracelets from young ages). She is not a celiac. But turns out dairy was causing her significant problems. We found that out after she continually left yogurt out, which her sister ate and she is allergic to. Third time the baby ate the real yogurt the older child lost the right to have yogurt in the house. Same reason milk left. Shockingly the older child was severly lactose intolerant and we didn't know it. She is much better off without the milk and she does not leave ANY unsafe food around anymore :)

Youngest started having health and growth issues under 1 yr old. At 2, I demanded testing for Celiacs. After many arguements with Dr...eerrrr..it shouldn't be this hard......she was finally made gluten-free and CF and she no longer goes to that DR. She will be three soon. Happy, healthy, and doing good. Within 5 mths of being on the gluten-free/CF diet and being a toddler, she knows she cannot eat all foods and asks if a new food is safe for her. She tells people that offer her food that she needs special food. I love it.

The rules that work for us:

Buy everything possible that everyone can eat.

Lable all boxed foods so the kids can easily pick safe snacks.

No unsafe snacks at low levels that toddlers can reach.

No foods contain nuts in the house.

Some shared equipment with nuts food is allowed if no other options are available. The nut allergy child does not eat these foods.

All baking is gluten-free/CF/nut free.

Almost all dinners are 100% gluten-free/Cf/nut free. Pizza, pasta, and school lunches may or may not be gluten-free.

Strict no sharing of food rule.

Strict no double dipping rule.

Strict no food anywhere except at the table. (Eliminate the house of crumbs issue.)

Actually assigned seats at the table has been helpful. (Crumbs and germs from that child stay with that child. Yes, table are cleaned after each meal)

I've told the kids since they first got the diagnosis that certain foods hurt their tummy. They learn that for some people their bodies just don't like certain foods. Not everybody is a Celiac, not everybody has a nut allergy. But that is just food. They are healthy and so what if they can't eat EXACTLY the same as everyone else. We make safe chocolates that I can't buy for them. They go trick or treating and exchange Valentine candy, but they do not eat it. Safe candy bags are provided and I take out what item they can eat and bring the resat to work. We make and frost cakes and donuts. We make most things they want. As we go grocery shopping they learn to identify harmful foods/hidden foods like nuts. As they got older they learned to read labels. even my 2 yr old runs her finger along the ingredients list and then tells me it is good for her. She can't read!

As I said, I don't think I follow the norm in this mindset, but it works for us and that is key. Take what you can from above and see what works for you and your family.

Best of luck and your kids will figure it out pretty quick. It does get easier.

PS: the best bribery is paying the older child every time he/she is asked to give a food to the younger child that is not safe. As in the older child has to learn to read labels and spot the unsafe foods for the younger child. This happened once accidentally for us and the older child read labels aggressively every since!

zenmama Newbie

we are working on this as well. dd (15 mo) has Celiac and ds (3) only has seasonal allergys. While I dont mind gating gluten-free (I am also a vegetarian), Dh isnt a fan of it so we are woring out the kinks as we speak!

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. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

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

      Bob red mill gluten free oats

    3. - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    4. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    5. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

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

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
×
×
  • 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.