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Becoming A Reality

mommy2joseph&david

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mommy2joseph&david Newbie
mommy2joseph&david
Posted

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

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jjrobin Newbie
jjrobin
Posted

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

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FreyaUSA Contributor
FreyaUSA
Posted

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.

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      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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