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Becoming A Reality

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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.



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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.



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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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    • They didn't. The labs were run two and a half weeks ago and before I got confirmation on here that it should be done despite my drs saying otherwise. I was glutened the week prior anyway so it would've been high regardless.  It's all very frustrating. So I guess I'll wait five or six months and go back and demand it vs asking about it. 
    • Did they run a DGP IGA?  While your DGP can take over a year to come down, I still think you should be getting tested every six months until you see a downward trend.  I am not making that up.  Google it.   My DGP was off the charts when I was glutened last summer.  My symtoms were severe, yet at diagnosis, I just had anemia.  It took six months for all symptoms to completely resolve (rashes and hives took the longest and three month to regain dairy).  What I am saying is that symptoms for celiac disease can change.    
    • Long pause because I wanted my latest lab results and they took forever.  Cortisol, ACTH, estadiol, vitamin a and whatever else were all fine. They are retesting my thyroid in four weeks. I definitely bought the wrong product and glutened myself a few weeks back so I guess that has to wait which really irritates me. My gliadin iga ab was greater than 100 almost two yrs ago at diagnosis so I guess sometime next yr I'll redo that and hope it's down :-/. Trying to do all the right things and get bad information from doctors.  Thanks for all the info you've shared and helped me with. I've had lab work every month since May and will next month for the thyroid again. Sigh. 
    • Hi Carle, Congrats on your symptoms going away.  I did seem to have reactions to rice for a while after going gluten-free.  But after some years on the gluten-free diet I can eat it again.  So reactions can change over time. I was searching for an article on gluten in common store products, but didn't find it.  There was a group that did testing on some common grocery products like beans, rice, corn etc that we would normally consider to be gluten-free naturally.  But they found some level of gluten in some of them.  So it's not impossible to pick up something off the shelf that ought to be naturally gluten-free and find it is contaminated.  That may have happened with the rice you ate.  A quick rinse of water before using the rice might help.
    • Hi Doit, The reference ranges to the right of the test result show the values the result ought to be in for normal readings (no celiac disease).  Your results appear to show no higher than normal results that I can see. However, you aren't following the recommended process for celiac disease blood testing.  The blood test is supposed to preceded by 12 weeks of daily gluten eating.  That is generally enough time to cause a sufficient quantity of antibodies to build up in the blood stream to be detectable by the tests. Not having antibodies in the blood stream doesn't mean you aren't being damaged.  People with DH (dermatitis herpetiformis) sometimes test negative on the standard blood tests.  My theory is possibly because the antibodies are concentrated in the skin instead of the blood.  In gut damage, it is possible the antibodies are concentrated in the gut, instead of the blood.  After some time they show up in the blood also.  The thinking is the antibodies go where the work is.  Anyway, theories aside, it takes very little gluten to kick off an immune response.  Those antibodies are not aimless soldiers.  They start doing their work and destroying gluten and gut tissue even if you don't feel symptoms.  Did you know there are some people who have no GI symptoms of celiac disease but still have it?  They call that silent celiac.  So going by symptoms is not a good way to judge actual damage in the gut. You are wise to go in for followup testing, but the followup testing is hopefully to show compliance with the gluten-free diet, and lower antibody test results.  Have your close family members been tested for celiac disease?  It sounds like they should be.   There is a 5% higher chance of them having celiac than the general population. Welcome to the forum!
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