Becoming A Reality

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 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.



Share this post

Link to post
Share on other sites

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.



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.


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

    • There's a gluten sniffing dog?????????????  I WANT ONE!  That way, as a service dog, I could take the pup into a restaurant and not be kicked out.  I have always marveled how in Europe, you see some dogs in cafes, sitting besides their owners while they eat. But having a dog to sniff out gluten is just so cool!
    • So, if this supposed damage cannot be seen under a microscope, how does Dr. Fine state with any amount of credibility that the damage is there?  He also needs to distinguish between NCGI and actual Celiac Disease because there is a huge difference. Regardless of what he claims, it is a well established fact that only in Celiac Disease is there villi damage. I am in no way dismissing the very severe symptoms of some with NCGI or its existence as an illness but people without Celiac do not usually have anemia, malabsorption and the resultant vitamin/mineral deficiencies. Their villi do not curl up and die. If there were damage done to a person with NCGI, then if on biopsy, the doctor hits a sweet spot, they would be able to see the damage under microscopic exam. I am also in no way defending the mainstream medical establishment because they certainly nearly killed me with their ignorance.  I know no doctor was looking for Celiac 30 years ago when I was sick but I presented with classic Celiac and they still got it wrong. So, I do hear you on that point but in today's world, we do understand Celiac much better and what Dr. Ford comes out with does not match known science. The problem we have is finding a sure fire way of diagnosing people before their guts are totally trashed.  I am sure testing will become much better and more sensitive for people in the early stages of the disease. I have a very open mind on medical issues and my doctor is a functional medicine MD. They have helped me more than most. But if Dr. Fine wants to be taken seriously, he needs to publish his findings for review by others in the medical field. He should be working with the current medical establishment to enlighten them if he has discovered things they haven't. But when he makes statements like the one I quoted, its hard to take him seriously. BTW....I encourage anyone who becomes ill from eating gluten to be tested for Celiac and if that cannot be proved, then by all means go strictly gluten-free. I know there are people who fall through the cracks but when someone states they need to be gluten-free for health reasons, I believe them!  You don't have to have a diagnosis to want to improve your health with a dietary change.  I am glad your husband has become well on the diet!  That really is the bottom line......  
    • I'm going to hope for a gluten-sniffing dog!  Funny, my 5th grader's science project was about cancer sniffing dogs.  During her presentation, she used our labrador to demonstrate.  She trained our dog to identify food masking as "cancer cells".  It was hilarious!  Our dog actually did it!   Anyway, I can't agree more with Gemini about the TTG measuring dietary compliance.  I continue to test negative to the TTG.   I think the DGP should be included in helping to determine dietary compliance.   Finally, I was saddened to hear that Dr. Fasano's recent research showed that some 20% of children are not experiencing intestinal healing.  We know from other studies that some 2/3 of  adult celiac patients never heal.  It is disheartening!  More post-diagnosis research and better tools to manage celiac disease are desperately needed.  
    • The flu vaccines can also be a bit of a gamble with what strains they put in each year. I've been OK with them generally but one year I had a really bad reaction to it and ended up feeling like someone was shoving razor blades down my throat for the best part of a week 
    • Off and on for a few months. It turned out to be caused by soy in my case. If food seems to help try eating first thing in the morning.  Just make it something easy to digest like the Buckwheat cereal (also high in easily digestable prtein) or toast with a nut butter and a non-acidic fruit. You don't have to try and get down a full breakfast or at least I didn't.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
    Carolyn Clark