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

What Should I Do


scaredparent

Recommended Posts

scaredparent Apprentice

I am afraid. I am reading about how tricky it is to diagnois this disease. Is there an age that it might be undiagnoseable? My son is 15 mo old and they did the blood work to day and on Nov 3 we are doing an endoscopy and a colnoscapy and a dumping study. Is it better to wait or go ahead with the test. When my son was born he weighed 8lbs7oz and he is now only 19lbs15ozs. I am very confused adn don't know what to do. I have 5 children how do you cook with out putting the rest of the children and yourselves on the diet? He got sick at 3 mo old when I started him on baby cereal. I see alot of your children just like my son. Heelp I am despart for answers?


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



Celiac.com Sponsor (A8-M):



jenr69 Rookie

Hello. Try not to be afraid. I know it is scary. My 19 month old doesn

celiac3270 Collaborator

I'm not sure about doing an endo at 15 months......not sure it's bad, either, but just questioning how old one should be before undergoing slightly more invasive testing. I know I've seen posts about how young is too young for the endo; try a search.

I'm almost 14 and I have a nine-year-old brother (almost 10). I'm the only one in my family who has celiac according to bloodwork, though I think my mom has it cause she gets bloated after eating large amounts of gluten and my brother might cause he is REALLY skinny like I was....he weighs the same that I did at his age. Anyway, if you have five children, four of which aren't celiac and yourself...mabye a husband.....then it would be quite expensive to go on a gluten-free diet. People will tell you that you just need to avoid the special products, but that leaves you with Lays potato chips, a select few other mainstream brands, and then the basics (fruit, veggies, meat, etc.). While this is okay for adults, it isn't very child-friendly....anyway, I you don't need to put your entire family on the gluten-free diet. You do, however, need to be very careful about keeping all the foods and cooking things separated and making sure everyone in your family knows how serious this.

You'll need separate pots, pans, a toaster, and cooking things (spatula, whisk, etc.). You may not need all this right away, but you will eventually. Make sure that if you use one fork to stir some gluten-noodles, you do not use that same fork to stir something else or to feed your little one. If a knife goes into a jar of jelly or peanut butter or cuts butter, then touches a glutened food and double-dips, it has just contaminated the food. You'll read this all over, but it's important to be really scrupulous about this. Read around and you'll find some posts on cross contamination. I remember quite a few, but don't recall where they are on the board....a quick search should take care of that.

-celiac3270

P.S. Oh, I forgot to mention, keep a postive attitude....you'll get used to coping with the diet and however long it takes, eventually it will all fall into place. If it takes you a year to learn the diet and eliminate all the hidden sources of gluten from your child's diet, it's okay. You're lucky to have caught it this early, so if it takes awhile to work out all the specifics of the diet or if you mess up a few times, don't panic. :D

tarnalberry Community Regular

lol... I'm one of those people who'd say you can just stick to naturally gluten-free foods. I guess my kids (years in the future) are going to be shocked when they get to school and see food come in packages. ;-)

ryebaby0 Enthusiast

This is the worst part of diagnosis -- the waiting, the panic, the grieving, the worry. Consider yourself lucky that your doctors thought of celiac as a problem. It is also easier to manage a child's food allergy if they are very young. But a healthy life is precious, and worth the effort.

My advice is to go slow, don't read too much (it just gets so overwhelming to try and figure everything out and raise a bunch of kids) and do whatever works for you. For some people, that's "whole food" cooking. For some, it's everybody goes gluten-free (but that is very expensive if you are using prepared foods). Some people very successfully have a "split" household. For most of us, it's some combination of those depending on the day of the week and how much else we have to do.

My son has been gluten-free for 1 year, November. My husband is probably celiac disease as well, and it took us this long to think of half the family being gluten-free as a real problem. It's just part of the routine now. You're going to feel overwhelmed for a while, but it will get better. Take it day by day, activity by activity. You can do this!

Joanna

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,182
    • Most Online (within 30 mins)
      7,748

    Portia
    Newest Member
    Portia
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
    • thejayland10
      thank you, i have been doing that the last few weeks and will continue to do so. I had not had my ttg iga checked since I was diagnosed 14 yrs ago so I am not sure if they ever dropped below the 15-20 range.    all my other labs are completely normal but I am concerned that this may be signs of refractor celiac or something else since I'm so careful with gluten-free diet 
×
×
  • Create New...