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

16 Month Old Just Got Diagnosed With Celiac. Now What?!


Mizyellow

Recommended Posts

Mizyellow Rookie

Hello all,

My name is Raegan and my son Harrison was just diagnosed with celiac. He was born fussy. He had colic, vomiting, gas, foul stools, and most recently weight loss and failure to thrive. He has a mild IGa deficiency and due to continued weight loss the drs at Children's performed a scope Monday morning (not my favorite morning) and we got the results back today as indicative for celiac. I am actually fairly familiar with celiac and understand the basics. However I am unsure of how throuough I need to be. Do I get rid of my toaster? I am planning to just be gluten free in this house at least at first to minimize the accidental exposure. I am nursing so i know I need to be strictly gluten-free until i am done. If someone could give me a few pointers on what to do specfifically around the kitchen to prepare for this new lifestyle. We are already egg and dairy free due to allergies so the actual food part will be easy enough. Thanks!


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Yep, you'll need a new toaster. And you also should replace anything thats been scratched (such as pans and pots), colenders that have been used for wheat pasta, wooden spoons, plastic utenciles, and such.

Look at the bright side, it got caught relatively early :)

mommida Enthusiast

As a nursing mother to a Celiac you need to check your health care items too. (skin lotions, deodorant, shampoo and conditioner) My son loved to grab my hair and my daughter would pet my face when they were nursing. :rolleyes:

You need to be as careful as you can be. There just is no way to tell you how much exposure is safe. It is the amount your son's immune system recognizes as gluten that triggers the response. Some people are very sensitive with violent gut reactions and some people have really no sysptoms and get diagnosed later in life for anemia.

It is going to be a bit harder with the egg free- dairy free restrictions for gluten free, but it is doable. :)

Ollie's Mom Apprentice

Just wanted to say that if you suspect you may have a problem with gluten as well (or even if you don't!) You should request a full celiac blood panel for yourself asap. Celiac is hereditary. If you go gluten-free for nursing, then realize some of your "symptoms" go away, it would be awful if you couldn't consume gluten for a challenge at a later time. Just some food for thought.

Mizyellow Rookie

Lotions? How do I check those out? I never thought about those. I went shopping this evening to try to replace MY ENTIRE kitchen's worth of foods and I was incredibly overwhelmed. If it didn't have gluten, it had egg. The magnitude it starting to set in. I am terrified to accidentally poison him with gluten. H e puts EVERYTHING in his mouth still. Does it mean that it is really bad if it showed up this early?

StephanieL Enthusiast

We are dairy, egg, gluten and all nut free. My DS was dx at 3. The age at which they are dx doesn't mean it's any worse BUT it is great because the sooner it's found and the sooner your little one goes gluten-free, the better for him!!

Takala Enthusiast

You can check out lotions, etc, by doing a search engine query of:

gluten free name of item you are wanting to purchase

such as "gluten free baby lotion"

I have very sensitive skin :rolleyes: and have been known to react to unknown ingredients in some baby stuff :angry: such as the (probably) cross contaminated cornstarch in non-talc baby powders, some "natural" deodorants <_< , shampoos with wheat (triticum) or cross contaminated oats (sativa), etc. I got so frustrated with some of these expensive, supposedly "allergy-free" baby product companies which kept changing their ingredients lists from one status to another, (yes, I am pointing to you, "Burt's Bee's, and that soy crap you now use, because I have a dog with allergies and I don't want to cross contaminate HIM if he licks me) I have an emergency fallback system of using just a few ingredients and actually getting BETTER results, anyway.

Deodorant in a pinch: dry baking soda. It seems this would not work, but it works really, really well.

Hair rinse: pure apple cider vinegar, mixed 1 part to 7 parts water, (and in a spray bottle for a detangler) this corrects the pH and makes hair shiny and ease to comb out, and it's CHEAP, besides that

hair conditioner: pure shea butter or pure coconut oil, a tiny pea sized dab rubbed into your hands and then thru your hair, after the cider rinse

moisturizer: pure shea butter or pure coconut oil or pure almond oil

Soap: been using some Alaffia African liquid soaps (some of these are labeled gluten free) or the Dr. Bronner's liquid soaps, or plain Ivory bar soap. There are other shampoos and soaps that are also gluten free, but these are available at the places I am purchasing the gluten free ingredients I use in baking, and they will lather in our well water, which is another characteristic that most people here are not having to deal with.

My husband uses Dove brand shampoos because they are supposed to call out the gluten on their labels, but, they really a bit too perfumey for me. He has super short hair so he isn't having to deal with my hair, which is longer, thicker, more ornery, drier, colored, and seemingly water and soap repellant, trying to get something shampoo- like to actually make suds in it. :rolleyes: Good Gosh, I would have to use a quarter cup of shampoo and half the water heater tank to then get it out ! Some people with this type of hair will just rinse their hair with plain water daily, or a little bit of baking soda in water, then condition it, which works well in the summer for me. (You can also visit the Long Hair Community blog, category "natural hair care," or "co conditioning" for more ideas, which also work for shorter hair. Uh oh, I just checked their site and they are having an ongoing upgrade right now which has made some of their old threads disappear. Anyway, some people don't use shampoo very often, as I have explained, just conditioned and then rinsed well with water and then used vinegar and a small amount of oil. )

__________

As for the kitchen, if you are having to work thru your kitchen items, at the minimum get a new toaster and the toaster oven is handy as the racks can be washed or scrubbed. New colander for gluten free pasta. New cutting board. New spatula. New dish sponge/scrubbie type of thing. If your old sharp knife holder is full of crumbs, out it goes. New plastic storage type containers for leftovers. (if you like Cool Whip, you're in luck, as these make handy ones). I also got new potholders and new bakeware, but not all at once, just what I had to have. If you have old teflon, it goes bye- bye. If you have old cast iron, burn off the old finish in the oven, and re- season it. (I clean dedicated cast iron with water, baking soda, and cider vinegar and a paper towel). As you purchase these, get a pack of sharpie pens and make each new item gluten-free or GLUTEN FREE so there is no question by other people on its status. If you need to roll out a pie crust, use wax paper and a regular drinking glass, this will save you having to replace the rolling pin right away.

If you want to test out recipes for breads and cakes, I suggest using the bun-in-a-cup type recipes (with the substitute for egg, of course) that are baked in the microwave in about a minute and a half, using small, single serving ceramic dishes which are easy to clean. This will keep you from making a large batch of something that you end up not liking, and then spending a big gob of money on it. This way, also, if you keep the ingredients on hand, you can then quickly make up a fresh sandwich bun or two if you are far away from the store and need it in a hurry.

Gluten free rice cakes and corn tortillas are very versatile and can be used for most bread situations in a pinch, as can rice pasta, so don't worry. This is do- able.


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



Celiac.com Sponsor (A8-M):



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 McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Accuracy of testing concerns

    2. - McKinleyWY posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Accuracy of testing concerns

    3. - trents replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

    4. - Peace lily replied to AristotlesCat's topic in Super Sensitive People
      118

      Gluten Free Coffee

    5. - Teaganwhowantsanexpltion replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

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

    • Total Members
      133,237
    • Most Online (within 30 mins)
      7,748

    Nancy MacManus
    Newest Member
    Nancy MacManus
    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, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
    • Teaganwhowantsanexpltion
      Thank you I will i have been on a strict gluten free diet ever since I got diagnosed but sometimes places lie about there food so there r some things that do get contaminated which causes me to throw up on end for several hours until I can't hold myself up anymore 
×
×
  • 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.