reintroducing gluten
 

We eliminated gluten from Margarets diet about two years ago. She was five and still not potty trained and often complained of stomach pains (warm tummies( skin rashes and was pretty underweight.. A TG-IgA test was a "weak" positive.. SO it was suggested more tests would be needed but at the time we also felt it unnecessary to go though the whole biopsy etc...
Well blah blah fast forward 2 years we have decided for medical reasons we need to know.. It also means introducing gluten back in...
We gave her her first exposure on Thursday and she has had one gluten something every day since from two salteen crackers day one to a slice of sprouted 7 grain bread today.. So far she hasn't had any complaints at all..
Last night however she did wet her bed which could just be a freak thing or the fact she had a fudge stripped cookie yesterday which had milk :doh.. She also admitted she didn't quite make it to the bathroom one time and had a "little accident" because of it. She changed and cleaned up before I could see what that exactly meant. The loose bowls were always her biggest gluten reaction. I asked if she had any stomach pains though and she said no.
Neither I or her doctors have any doubt to her gluten sensitivity but the idea of her NOT being full celiac is VERY appealing not having to overly stress over any level of cross contamination sounds like heaven.. Is the fact she isn't having huge obvious immediate gluten reactions a good sign?
Or am I celebrating too soon?

Re: reintroducing gluten
 

I wouldn't celebrate just yet. Hug I am glad she is not having really bad reactions. Praying you get clear answers.

Re: reintroducing gluten
 

I'm not sure. I know after my DD1 was off gluten for a few years she quit reacting to it. Her response was tummy stuff too, which did not come back when we reintroduced. We always hoped it would help her SPD and ADHD symptoms too but after 3 years we figured if it was going to help that it would have done so already and it didn't.


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Re: reintroducing gluten
 

Are you reintroducing her in order to get more testing done?

It's probably a good sign that she has reacted minimally to some exposure. I know that my dd reacts very quickly to any gluten exposure.... We also have a strong history of celiac disease in my family and those with celiac also react strongly and immediately to exposure.

However, I also agree to not celebrate too early. ;) Because everyone's reactions are different.

If you're reintroducing in order for testing, how long does she need to be on it until you can move forward with that?

Re: reintroducing gluten
 

Yes and 90 days. I know her reactions can take up to three days to really show. So far though nothing. I'm hopeful but cautious.

Re: reintroducing gluten
 

A former neighbor f ours had cut out gluten and also an extended family member who was diagnosed with celiac and both were able to start eating it again in moderation. probiotics like acidophilus and bifidus help digest it better

Re: reintroducing gluten
 

I would be hesitant to celebrate. I hope it is a good result. I can understand wanting a definitive answer.

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Re: reintroducing gluten
 

I already knew she takes a bit to have a bad reaction however we were told if she did then of course we were to stop... her doctor is pretty careful thankfully.

Re: reintroducing gluten
 

Could you try to only introduce fermented grains at this point? It is pretty easy to do sourdough bread, pancakes, biscuits etc. I know my daughter acts spazzy, to put it kindly, if she eats regular non fermented wheat. I get stomach issues and even joint pain if I eat non fermented wheat. Some suggested reading are Dr. Natasha Campbell's GAPS gut and psychology syndrome and Dr. Weston Price's Nutrition and Physical Degeneration.

Re: reintroducing gluten
 

We could so far though she has been fine..

Re: reintroducing gluten
 

Has it really been two years?!

Hope it is just a sensitivity and not Celiac!

Re: reintroducing gluten
 

She's been gluten free since July of 2015.. (minus some accidental exposures) It was here lack of still not being anywhere close to being potty trained and five that prompted the doctor to say lets try this.... With in just a week or so we started to see major improvements and about a month latter the huge frequent accidents stopped.
Honestly Ive wondered if she has more a sensitivity than full Celiac. She had accidental but obvious exposure before and it takes a bit before she reacts. She doesn't seem to be super sensitive to cross contamination as others. We have no family history that we know of. I've been tested (just blood) and nothing, Ive seen no difference in my own body going gluten free or reintroducing it. Margaret has always had a sensitive stomach. Not sure if anyone remembers me being concerned with her lack of bowel movements after birth for example.
Id still like to keep her overall gluten free we as a family are mostly GF and its because were mostly low carb whole foods type family. We buy little "GF subsitute" stuff which I mostly find junk anyways so staying this way wont be a huge deal. I buy her GF sandwich bread and we use a GF pasta and I keep a bag of GF chicken nuggets on hand as my JIC go to..thats honestly about it. Oh I keep a GF flour blend around a well which we use for baking but it takes me several months to go through a small bag.. and I buy GF oatmeal. I think that is about it...

SO far she has had
day 1: two salteen crackers from the salad bar at our grocery
day 2: 1/2 PBJ sandwich on Nature own sprouted 7 grain bread and about 1/4 cup near east rice pilaf
day 3: sandwich as above and two fudge striped cookies (which she had a dairy reaction to)
day 4 :- some chicken noodle soup (annies)
day 5: today multigrain crackers

Re: reintroducing gluten
 

I think you're doing the right thing. :yes If she's not reacting to what you've exposed her to so far I don't think there's any reason to expose her differently. I'd just continue until either she reacts and can't tolerate it or you get to the point you can do the testing. :yes

It will be good to have those definitive answers. :tu

Re: reintroducing gluten
 

Well it took almost 10 days of exposure but life eventually caught up.. she started having trouble with loose bowels stomach pains and headaches. She now wants little to do with continuing obvious exposure.. I'm not sure how I want to proceed from here.

Re: reintroducing gluten
 

That's rough. :(

I'd probably put a call in to the doctor and see what he says. Maybe they can test earlier than the 90 day mark? It seems if she is reacting to it now it may show up in tests??? But maybe not yet. I don't know.

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.


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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).