Re: reintroducing gluten
 

Oh I am sorry, that sounds miserable for all of you. I agree that calling the Dr and seeing if you have options would be good.


This is why my dh will neaver get an official diagnosis. He wouldn't go to the Dr but eventually agreed to try being gluten free. He has had one major accidental exposure and he ended up in the hospital, on more meds that I had post c section, because of the pain.

Re: reintroducing gluten
 

doctor says unfortunately its still too soon if we want an official diagnosis. She can say she is gluten intolerant but not celiac without testing.. She will respect any decision I make.
I'm torn.. It seemed that she had zero reactions after multiple obvious exposure. Then boom she went from being happy and merry to not making it to the bathroom several times (like we were back to before she was PT) to her complaining that her tummies were too warm.. This is her explanation I have no idea exactly what warm means but it is enough to keep her up all night. Then today I a rash appeared on her hands so far no place else but too much of a coincidence..
Part of me thinks I dont need more.. We will keep her off gluten clearly she does react. At the same time why does it seem to need to build up. Is is all gluten or say just a wheat allergy? How careful do we need to be about say cross contamination? I dont want to just ignore things because she seemingly can handle some exposure as I know it could be doing more damage than we are currently seeing. As she gets older though it be nice to have a better idea of exactly what is going on.

Re: reintroducing gluten
 

Yes, it's a hard decision and one that only you and your dh (and she) can make right now.

Here is the big questions to consider. What would you do differently in light of a celiac or not diagnosis? Would it change anything about your day to day behaviour?

And how life interrupting right now are her reactions?

Is an official diagnosis something that you would eventually like to pursue even if not right now?s

Re: reintroducing gluten
 

It may have taken this long for the villi in her intestine to be damaged again. I would be torn too, D. There wouldn't be any difference in daily life for me knowing or not, since the only treatment for Celiac is avoiding gluten, but there are issues that Celiac can bring on that it might be good to know about.

Re: reintroducing gluten
 

A non celiac diagnosis might allow us to relax a bit in some areas such as when it comes to cross contamination, we'd also like to know if its al gluten vs just wheat.

Right now her reactions are concerning and they "disrupt" the days but they are not earth shattering. No worry about needing hospitalization and overall we've been able to get school work done etc. She been gluten free since Friday. The rash is still there but her headaches have passed and stomach is better. She aches but she still has to be careful with getting to the bathroom. Its much better though.

Re: reintroducing gluten
 

She may have both damaged villi that eventually leads to celiac (based on digestive symptoms) and a wheat allergy (rash indicates IgE reaction). You can ask for IgE blood work for wheat and other gluten containing grains as well as the IgA celiac blood work which may come up positive despite the short time she was on gluten. There is also genetic testing to see if you have certain genes associated with Celiac but that doesn't indicate that you actually have the disease.

C has an IgE allergy to wheat, all other gluten grains tested, and several genes associated with celiac. That was enough for us.


Sent from my iPhone using Tapatalk

Re: reintroducing gluten
 

When we did food intolerance testing with my middle child, my ND said that when you reintroduce you want to do a large amount at once to see if there is a reaction. She said it's less reliable and harder to tell when you do it little by little. In our case, ds ceased to react to anything (my theory is the 8 weeks off of gluten, dairy, and eggs caused his gut to heal). On the other hand, I did the diet with him and I reacted strongly to gluten (later found out I carry one copy of the celiac gene which makes you more likely to be reactive even if it's not truly celiac).