• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Rate this topic

Recommended Posts

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:
Ads by Google:


Guest jhmom

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

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

0

  • Forum Statistics

    • Total Topics
      108,925
    • Total Posts
      943,546
  • Member Statistics

    • Total Members
      67,163
    • Most Online
      3,093

    Newest Member
    suzala
    Joined
  • Topics

  • Posts

    • Ouch I am sorry . I know how painful bone,  joint, muscle pain can last weeks for me . Hopefully you'll be able to clear it quickly if otherwise you have been healthy this season. As others suggested some TLC , vitamins, mineral to assist may help. I find accupuncture helpful too or massage. As for a gluten-free pizza I can no longer have them due to additional intolerances to milk. I in past days found sabatassos gluten free pizza carried at my local Costco pretty yummy if you can find it.
    • Maybe it was not the chili.  Maybe you are sick with the flu?  Sometimes, we jump to the conclusion that celiac disease is the cause of our current symptoms.  I know I have done this.   Hormel is NOT considered good, but it is gluten free and safe.  I give it to my kid on top of gluten-free pasta or corn chips in her thermos.   Add plenty of cheese and it is pretty good.  Though I admit, I used to think the burritos and strips I purchased at the beach shack as a kid were SO good!  😆 Even bad cooks can make a simple chili.  Follow any recipe, but sub out the spices for Carroll Shelby’s Chili mix which is even certified gluten-free.   My recipe is 2 or 3 pounds of cooked ground beef, 32 oz can of beans (I usually make my own beans), a can of diced tomatoes, and Hatch’s green chili’s.  I suppose you could add some cocoa to change it up.  Do not hold me to this recipe regarding the ratios of ingredients as I do not follow one as my batch size changes, etc.  I cut back on the spices when I see my family sweat!  😆    
    • This is really a general post about alkalinity and being in the news these days. Alkalinity is totally trendy, but I encourage people to educate themselves about this and not rely on trends. I don’t mean to suggest that I know everything there is to know about this, but, for example this site (http://www.foodenzymeinstitute.com/articles/digestion-in-the-stomach.aspx?list=bydate) states: [Certain enzymes are] only active within the pH range of 3.0 to 5.0 and require the acid to maintain that pH. Pepsin is very specific in its action and is simply incapable of digesting food enzymes, which are very large molecules and are more than just protein. This sites (https://www.livestrong.com/article/459954-the-acid-base-balance-in-the-digestive-system/) states Antacids increase the pH in the stomach, which might make the enzymes in the stomach less effective. I think the focus on alkalinity and acidity in our foods currently en vogue is a huge distraction and a big waste of time. To me, it represents the two steps backwards in the notion of progress. I’ll end with Dr Andrew Weil — https://www.drweil.com/health-wellness/balanced-living/healthy-living/why-alkaline-water/ “Don’t waste your money. Alkaline water is being aggressively marketed for its purported health benefits. It is touted as the solution for everything from helping the body better absorb nutrients to reducing the risk of high blood pressure, high blood sugar, and heart disease, as well as boosting energy, helping you lose weight and slowing the aging process. It is also said to be “more hydrating” than any other type of water. Alkaline water is supposed to achieve all this by correcting the body’s pH, its acid-base balance. In fact, the human body needs absolutely no help in keeping its pH constant. “ /rant
    • After my hiatus hernia was diagnosed they advised me to eat small meals spread out across the day, maybe that may help?
    • Ah I've googled it, as you guessed I was thinking of chilli con carne, this is something different!  Sorry I can't be of help.                      ps, no offence, am sure it's lovely but I did find this hilarious: https://deadspin.com/the-great-american-menu-foods-of-the-states-ranked-an-1349137024 
  • Upcoming Events