Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

New To The Group
0

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.

0

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

http://www.kinnikinnick.com/

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

0

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.

0

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
0

  • Forum Statistics

    • Total Topics
      104,654
    • Total Posts
      921,620
  • Topics

  • Posts

    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
    • I don't have a lot of faith in the allergy testing naturalpaths do. I had them done, but really it wasn't very helpful. Foods that were okay on the blood work- I was still having obvious reactions to. Skin testing through an allergist didn't show up food allergies either. I agree the food elimination diet is a better way to go and doesn't cost a bunch of money. I did a whole 30 diet a while back that could have been helpful if the foods I reacted to were corn, dairy,  soy, grains and sugar- but I react to more than that.  I do need to do a major elimination diet- just haven't gotten up the willpower yet.   
    • Quick search gave too many responses to TGI Fridays but none to TGI Fridays Buns (or similar) so... I was talking with my sister-in-law (Gluten Intolerant) and she spoke highly of a pre-packaged bun from Fridays. I was hesitant but she gave me one (apparently you can buy them from the restaurant?) and I tried it. Since I'm slow to react I won't know about gluten for a bit but I can definitely say it is the closest to "real" I've had in years! Spongy, doesn't crumble while eating a sandwich and tastes good. Color me impressed! I tried to determine the manufacturer or if Fridays actually makes them but I can't locate anything worth pursuing. Anyone have information on this? Thanks in advance.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,654
    • Most Online
      3,093

    Newest Member
    bentcreekmom
    Joined