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Toddler Just Diagnosed-please Help


scotties-mom

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zachsmom Enthusiast

I wish I could just get a list of all the foods everyone has posted...

But as you will find ... many stuff in the regular grocery is gluten free... you just have to look. I have 14month old who was thought to have had it since 4 moths of age..w hen cereal was intorduced,,,, he had a horrible roto virus encounter... But I have and am there really in your shoes. but On land olakes .. they have a flour recipie and other recipies for gluten free folks.. I found it yesterday and thought I had died... But may regulare foods are gluten-free... dont get down... its like riding a bike.. hard and then easy...


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Kibbie Contributor

Hey I just sent you with a msg that lists everything I keep in my panrty and a typical day of meals for my daughter (she is 21 months old) My grocery bills were high at first while I was getting stocked up, and trying new things... now its about where it was before we went gluten free! (My entire family is gluten-free except DH he iis gluten light he only has gluten at lunch... I'm cheep and get him regular bread because he is the only one in the house who eats it)

So check your msgs!

sally123 Newbie

My 6 year old son was just diagnosed with celiac as well and we are trying to figure out what to eat. He is a very picky eater and likes very few fruits or vegetables. It is even more challenging to find food now. The bread we've tried is terrible. I think the cereal is too, but luckily he likes it. Also, I'm frustrated because the breads/cereal seem to have no nutritional value at all - 1 g of fiber in most of the cereal. My son is the only one in the family with celiac - we've been tested. I hate to make him feel left out and eating "special" foods alone, but I would rather have my 3 yr old eating high fiber cereal and bread. Plus, it's too expensive!

My biggest problem is that I have no idea what products are OK. I found lists from various websites listing products, but then when I read the ingrediants I see "modified food starch". Conversely, I find other products that seem to be gluten free, but I have no real way of knowing. I'm so confused. I also need to be able to tell school what is OK and what is not, but I don't know myself.

Also, we want to do holiday baking this week. Does it work to just substitute gluten-free flours into normal recipes. I haven't tried anything yet.

Any advice for a new celiac mom is welcome.

thanks

par18 Apprentice

Hi,

I think this is the toughest of all situations a family is faced in dealing with Celiac. You as a parent are most responsible for the diet choices of your son. How you go about it will be depend on not only yourself but also the other members of your family. The more the whole family can eat the same things (naturally gluten free food like meats, fruits and vegetables, dairy etc) the less "singled out" your son will feel. No one including adults wants to be singled out. It will also get everyone in the family eating healthier. If you have to buy a lot of prepared gluten free items for just one member it will become expensive. Also the more gluten is involved in the meal for the other members the more chance of accidental contamination. It also increases the time it takes to prepare meals. If all of you eat many of the same things it will be cheaper. The picky aspect of the whole family is something that will have to be overcome. If your son is to succeed then healthy eating must start now. Parents can do the most good in this area by setting a good example. The children may not think much of it now but they will thank you later when they understand how important it is. Hope this helps.

Tom

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    • knitty kitty
      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • 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.
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