Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

New To The Group

3 posts in this topic

Hello everyone,

My name is Misty and I wanted to introduce myself. I was diagnosed with celiac disease at age 2, although my mother was told I would "outgrow" it. Well, they reintroduced gluten in my diet around age 5 and I seemed fine. I have been fine since then, I am now 29 years old. Now I learn that I still "have" celiac disease although I have NO symptoms, no complications, nothing.

I have a 12 year old daughter who seems symptom free but I also have a 21 month old who I just KNEW had Celiac's. She has a distended belly, she's EXTREMELY gasy and her stools are VERY strong smelling. I mentioned it to the doctor, she thought there was no reason to test her but agreed just to aleviate my fears (we have also lost a son to SIDS when he was 4 months old so my doctor is quite understanding). She ordered a Celiac Panel for Faith. 3 of the 4 results were negative but one came back with a "weak positive". She felt there was no need for worry because the other results were negative but I wasn't satisfied with that. I orderd the stool testing through Enterolab. I received the results this morning and she tested positive for gluten sensitivity.

Now I am reaching out for any help I can get. I'm struggling, depressed, sad for her and just very emotional right now. I am also 38.5 weeks pregnant so I'm feeling a full range of things right now. Worried about the baby, worried about SIDS, worried about Faith.... UGH, it's all so overwhelming.

I have ordered Danna Korn's book this morning and I'm looking for any other information I can find. I have no clue where to start. There are so many things that Faith just LOVES that it looks like she can't have anymore, i.e., ketchup, mustard, ice cream, Cheerios..... how do I explain to this 21 month old that she can't have those things anymore?

Thanks for listening.


Share this post

Link to post
Share on other sites

Ads by Google:

Hi Misty, welcome to the board!

I understand how you must feel right now it may seem overwhelming but it will get better. I am sure you are just happy to finally know what is wrong with your little one. After she is on a gluten-free diet she will not live in pain anymore, that is a very comforting thought! You mentioned you were diagnosed as a child are you currently gluten-free too?

She can still enjoy mustard and ketchup, Heinz and French's are both gluten-free. As far as the Cheerios, maybe you can find another gluten-free cereal for her that she will like. I like Rice Crunch-Ems.

Here are some links that have been very helpful to me:

Mainstream gluten-free Products

Support Groups

What it's like to have celiac disease

I hope this has helped you and hang in there :D


Share this post

Link to post
Share on other sites

Thanks for the reply Stacie. I didn't know about Heinz and French's. See, I'm learning already.... :)

No I am not on a gluten-free diet. I haven't had any problems since age 5 and my mother always told me I outgrew it. I didn't realize that is supposedly not the case until I started suspected that Faith had it and I was researching. I just learned that I must still have it even though I have NO complications whatsoever. Strange that I can have this and be symptom free, especially for 25 years so far.

I will check out the sites you sent me. Thank you so much. I want to learn all I can and help my daughter adjust to this.


Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • Hi Viviane, No, the antibodies to gliaden are learned by the immune system.  They won't be forgotten by the immune system ever.  The antibodies to gliaden are specific to the protein gliaden that is part of wheat protein.  Once learned, the learning never goes away. Usually the doctor will do an endoscopy to confirm celiac disease damage to the gut lining (villi).  The endoscopy is usually after a positive antibody test, which you had already it sounds like.  You shouldn't stop eating gluten until the endoscopy is completed and test results are received.  If you stop eating gluten too soon, the test results can be faulty. Several people have reported having their gall bladders removed before being diagnosed with celiac disease.  Gallbladder problems and celiac disease seem to go together for some people. Welcome to the forum!
    • It's not fun at first EG1707, but after a variable amount of time you get used to it.  I used to be pretty paranoid about gluten cross contamination, and I am still careful of it, but it isn't a big worrisome thing.  I take precautions and do fine most of the time.  Not being the exact same as everybody else isn't all bad.  Most of your friends can probably shovel all kinds of junk in their gullets and never even think twice about it.  They may have free reign to eat as they please, but they will also have the possibility of eating many more chemical preservatives, flavorings, colorings, and emulsifiers.  Maybe those things aren't automatically bad for them, but they aren't a normal part of a food either.  They are added purely to enhance sales revenue.  Sticking with a mostly whole foods diet you will be able to avoid most of that stuff.  Your liver may thank you for that.  Fewer chemical additives to process isn't such a bad thing. Recovery is not an smooth road sometimes.  The immune reaction is fired up and ready to rumble when we first go gluten-free.  Our guts are also damaged and easily bothered by any kind of minor irritation, that may not cause a problem later on.  Our gut bacterial flora is probably a swamp of unhealthy bacteria that needs to be rehabilitated into a healthy mixture.  None of these things are going to happen over night.  But they can all improve and lead to better health.  And most likely will as time goes by.  But we have to stick it out to give our system time to recover. Additional food intolerances may crop up but they are not insurmountable either.  I struggled with my health for years after going gluten-free, but am so much better now.  I even have some energy now to do things and that is a great thing.  We may not be dealt an easy card, but there are others with much worse situations.  Our disease/condition is one where the treatment is known, the answer is just a diet change, and we don't need strong drugs to combat it.  We have to take care of ourselves, rather than doctors taking care of us.  But that's a good thing. The less gluten, the more whole foods the less processed foods, the better for a beginner IMHO.  There's always time to branch out to more adventerous foods after healing a while.
    • hey, i had a bad reaction with very similar symptoms pre celiac, report your side effects to your doctor or the cdc. im not against vaccines at all but i would be very caucious getting it again especially if your not elderly/ high risk and its not completely nesscessary, i find washing your hands regularly and not touching your face goes a long way
    • I was told by one of my customers at a farmers market I should see about getting a government grant, to expand my gluten free snack line and get a trailer to sell seeds, candied nuts, almond butters, and gluten-free granola at events. Being on a tight budget as is, and selling this stuff so I can afford my own consumption of food is hard enough. So needless to say this idea of getting the trailer on a grant and living my dream of providing gluten-free snacks to others to make life easier for them and being able to set up at events, is very enticing. Now how would I go about doing this is my problem....due to the ataxia and brain damage I have looking at and trying to understand the numbers and legal mumbo jumbo is like trying to read a alien language. Can someone simplify this for me and tell me if it is a good idea or just another dream.
    • Your future has not been taken away.  You just have to be very careful eating out.  I have a handful of restaurants that I trust to cook my food correctly.  I ask a billion questions too (speak with a manager, ask if food is prepared in it's own dedicated facility and if they have dedicated fryers, ask about the workers and the sanitation practices)  If you don't feel comfortable eating after getting answers, then don't eat.  I've been in several social situations with family, friends and work where I've had to settle for a glass of wine.  I will explain why I can't partake if asked.  Honestly the only time I eat out is when I know that it's safe, I'll take my food on trips away from home, or I'll eat before going out with friends/family. As far as the kissing thing you mentioned.  My husband is understanding.  He'll make sure that his mouth is clean, brushed teeth and if he has a doubt he'll kiss my cheek.  It's really not the end of the world, it might feel like it, but it'll get better...  My daughter is 13.  She hasn't had her first kiss, she knows that she'll have to tell whoever it is about her disease.  If it's someone worth having, they will stick around.  Think about it as a way to weed out the bad ones  ...   
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member