• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Becoming A Reality
0

3 posts in this topic

I think up until this morning I really was just able to talk about this and think nothing of it...but since we are giong to Joseph's consult here in about an hour and then have his pre-op appt set up for 1 it is all real. My mom called me this morning and I just started crying :( .

I do not want my son to be ill in anyway, but I want all the problems he is having to end as well. I know the worst ogf the biopsy is the having him put under (we went through this when he had tubes put in), but I am just scared to know the truth. Glad to know diet change will fix the aliments, versus meds, but I just cannot imagine.

I also have a 3 month old baby and I am worried sick that hecould have celiac as well. Though looking at the way he is growing now, no way. We will probably never know as once Joseph's celiac is confirmed, we are all going gluten free. How do you all do it...how do you make that change and make everyone understand this is not fluke thing. It is real and it hurts out kids when they have gluten.

Tina

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Hi, I have really no advice. My son has not been Dx with Celiac's, we are in the beginign stages, but I am 110% positive that is what he has.

My Mom just does not get it. A friend does, b/c she too has the disease. And personally I think I do to, in some form. LOL!! But, my Miom thinks I am being way over protective. Wish she could have been there with me last nite while my baby was puking his guts up b/c he had gluten yesterday. :(

One day, hopefully the word will get out that this i sjust as bad as any other allergy, you might not be able to see it, but the suffer's sure feel it.

Jenn

0

Share this post


Link to post
Share on other sites

Me and my three kids were all confronted with celiac disease over this last summer (I've been gluten-free since March, kids since June...July? :blink: ) It has been hard, but when you see little things you had no idea that were related to their reactions to gluten disappearing, you'll be more and more convinced how necessary and important this is.

How to do it? As quickly and as thoroughly as possible. I know, not real helpful, huh? Fortunately, with peanut allergies on the rise, people are more aware of allergies in general and, if you're faced with people who just don't get it, I've gone the "allergic to wheat" route. My 15 yr old son puts it like this, "It's not an allergy. I won't drop dead if I eat it. What will happen is that I'll get so sick that for the next week I'll wish I were dead and for the next couple weeks after that I'll feel like crap." We also use the poison analogy. Eating gluten for us is like eating arsenic. A little today may not kill us, but over time, it will. (Since my father died two years ago from horrible complications associated with undiagnosed celiac disease, this holds a lot of meaning for me and my kids.)

Also, you say your baby isn't showing any signs of celiac disease. As you probably know, 3 months is a little young to actually show signs at all, but, here again, my three kids all have celiac disease. They were all in the 95th percentile in height and in the 25-50th percentile in weight (tall skinny family so it looked right.) Anyway, slow growth is only one possible symptom of celiac disease. My three kids all have different symptoms (one with no obvious symptoms, too.)

Good luck and I think you're planning the right thing, all going gluten free. My DH, who has NOT been tested, is doing it with us (I attribute it toward a strong survival instinct on his part, lol!) He's also incredibly supportive and has never bemoaned not eating something gluten filled (at least in the presence of the rest of us.) It will make it so much easier on you and your son to have the family support.

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
      106,452
    • Total Posts
      930,631
  • Member Statistics

    • Total Members
      63,875
    • Most Online
      3,093

    Newest Member
    CJmommy
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hello I was diagnosed Dec 15 of last year and went totally gluten-free the next day. I actually got worse before I got better - it's a steep learning curve - but now, 4 1/2 months later I'm finally seeing improvement.  Hang in there. 
    • Called my GI doctor today to make sure he is going to look at my small intestine and do biopsy for Celiac for my EGD and he is. Thanks for the tip everyone about have to start eating gluten again. The office told me to break my gluten free diet and start eating gluten everyday until my EGD. Here's to being miserable again for a few weeks 🍻🍞😩
    • I can completely relate! The horrible mental effects that I have been living with for years is the absolute worst side effect of eating gluten, HANDS DOWN. Worse than the endless tummy aches, worse than the constant diarrhea, worse than the week long migraines, worse than the daily fatigue and body pain.... I honestly though there was something seriously wrong with me and hated my life because of how I felt mentally. I always felt like I was drowning, not in control of my thoughts, trapped in some unexplained misery. My head was always so cloudy, and I was mad because I always felt so slow and stupid. I would feel so lethargic and sad and empty while at the same time be raging inside, wanting to rip out of my own skin. I was mean, terrible, would snap at the people closest to me for no good reason and just felt like I hated everyone and everything. Think of how crappy you feel when you have a terrible cold and flu - I felt that crappy, but mentally. Some days were really bad, some were mild. I always thought it was because I was getting a migraine, or because I had a migraine, or because I had just overcome a migraine, because I didn't sleep well, because....always a random reason to justify why we have all these weird unrelated symptoms before we get diagnosed. I'm happy to say that I have been gluten-free for about 2 months now and though I am not symptom free, the first thing that improved was my mood. I no longer feel foggy and miserable. For the first time in years, my head is clear, I can actually think, and I feel positive and like I am in control of what's going on in my head. I don't hate the world. I don't spend every day bawled up on the corner of the couch depressed and angry. The release of these horrible symptoms is enough to never make me want to cheat, no matter what I have to miss out on. So insane how a little minuscule amount of a stupid protein can wreck such havoc. 
    • I wanted to collect some of the info on NCGI in one place so that visitors who test negative but may still have an issue with gluten can be directed there. I'll add to this post as I find new links, but feel free to add or contribute anything you think may be of use!  Matt ---   Useful links: An overview from Alessio Fasano, one of the world's leading researchers on celiac and gluten sensitivity: https://www.youtube.com/watch?v=VvfTV57iPUY Umberto Volta, another leading researcher in the field gives some of the latest findings about NCGI:  Presentation slides from Dr Volta's visit to Coeliac UK  - NCGS about halfway through A scholarly overview from celiac disease magazine: https://www.researchgate.net/profile/Knut_Lundin/publication/232528784_Non-celiac_Gluten_Sensitivity/links/09e415098bbe37c05b000000.pdf A good overview from a sceptical but fair perspective: https://sciencebasedmedicine.org/a-balanced-look-at-gluten-sensitivity/ Another overview: https://celiac.org/celiac-disease/understanding-celiac-disease-2/non-celiac-gluten-sensitivity-2/ University of Chicago's excellent celiac site's take: http://www.cureceliacdisease.org/category/faq-non-celiac-gluten-sensitivity/ A compelling account in the British Medical Journal from an NCGI patient: http://www.bmj.com/content/345/bmj.e7982 Here's some positive news about a potential new test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 NCGI in children:    NCGI and auto immune study: https://www.ncbi.nlm.nih.gov/pubmed/26026392 Also consider: Fodmaps: http://www.kcl.ac.uk/lsm/research/divisions/dns/projects/fodmaps/faq.aspx This Monash study: http://fodmapmonash.blogspot.co.uk/2015/03/the-truth-behind-non-celiac-gluten.html suggested some who think they're reacting to gluten should actually be reducing fodmaps Sibo: http://www.webmd.boots.com/digestive-disorders/small-intestinal-bacteria-sibo  
    • I was just diagnosed in March and I totally feel you. I'm having a hard enough time with determining which lip glosses are safe, let alone all my face products etc. I feel like this 'grey area' is the biggest annoyance with Celiac. So many foods/cosmetics I thought were safe after reading the ingredient list are actually not safe at all! One website says it's safe, one says its not. All these unfamiliar ingredients and even after googling term after term still so many grey areas!! I'm sure in time it gets easier and second nature and you learn by trial and error but holy this constant uncertainty is super annoying haha.
  • Upcoming Events