[EHHMom]

Can someone set me on the right track?
We had been considering GF CF diet for several months for 3 yo ds with PDD however we were holding off to introduce it at a better time so that we could evaluate it on its own merits. Long story short we wanted to research it because it is a big committment but we also did not want to start when he was going through all of the EI testing, evaluations and doctors appointments and we also wanted to wait until he got established with his SLP and OT.
Well he caught a fever/stomach virus at the end of May and was pretty sick for two weeks. He didn't eat much during that time. And when he recovered we started to notice that he was avoiding wheat and dairy. In the struggle to find substitutes we just took it as an opportunity to introduce GF and CF. (The change in language and behavior has been remarkable -- but that's another story!) He is now pretty much wheat free and dairy free but not entirely GF.

My Question: Is there a value in still getting the IgG,IgA,and IgE tests or could the fact that we have removed wheat (not other GF yet) also dilute

down the value of the tests?
Any links would be appreciated.

Thanks in advance for your advice.

 

[krissi]

I definitely think there's still value, especially if he's not entirely gluten free. In DD's case, we ran a food allergy panel after she had already been 100% GFCF for several months (I think it had been 6 months total). She was still through the roof with her allergy to gluten and gliadin, and she tested very positive for cow's milk allergy also despite not having had it in a long time. We tested her with some Activator X Butter Oil last week (because we wanted to do some of the Weston A Price cavity treatment stuff) and unfortunately still got a reaction even though she's been dairy free for close to a year now.

I have heard that not having eaten the foods in a while might diminish the allergic response. But because dairy and wheat aren't the only potential allergens, especially if you're looking at a leaky gut, I'd still have the test done. It's much better to know than not. We would have never had a prayer of finding all of DD's food sensitivities through trial and error alone.

 

[jaidymama]

I personally don't have much experience with this, but have a close friend whose dd has a wheat/gluten allergy. It is her experience that it is extremely difficult to avoid wheat/gluten... therefore, I would like to add my two cents that wheat by products can be found in medicines, natural flavors, etc. My friend got to the point of calling the manufacturers of each product they were using to double check the ingredients (unless is specified wheat/gluten free).

My own son has allergies that we can't pinpoint, and I figure it's worth it to get whatever testing is necessary (although I'm pretty much opposed to blood draws and lean more towards finger prick testing...) Anyways, I know these things don't answer your question, but I thought I would add it anyways.

Good luck, I have seen from my friend's family how much effort it takes to track down allergies, and then to make the life changes that go along with it.

 

[Megamama]

We only just started the GF/CF and let me tell you it's been lovely. Eli has normal bowel movements already!! I don't feel like I need to test for anything else until we're well established with this, at this point. When he was 2 he had a test for celiac that was negative, and yet, he seems to be intolerant (at the least, allergic at the most) to gluten.

Keep in mind there are differences in allergy and intolerance. A child might not show as allergic to these products on a test, but may still be intolerant. (e.g., I am lactose intolerant, but not allergic to dairy).

Later, if this diet doesn't seem to provide all the answers I think I might need I will try testing for yeast, and other blood panels. I am giving him acidopholus daily (and yes, I checked the ingredients..as I did with his vitamins) just in case.

We had a bit of a "regression" yesterday after marked improvement almost immediately with behavior, but today he is better again. I think he actually just didn't get enough sleep. I am worried about his immune system after the 5 tummy bugs we had this winter, though, so we're being super careful about germs right now.

 

[azedazobollis]

My daughter Zobey tested positive for a gluten sensitivitywith a result of 48 on her gliadin Ab (IgG). From what I understand once you eliminate glutens from the diet, the results will not reflect the true sensitivity.
Celiac.com is a great place to read up on this.
In your OP, you said that wheat and dairy were eliminated. Gluten is in nearly everything- it isnt just wheat. Therefor, getting the test done may be appropriate at this point.

 

[Jewelie]

anyone ever hear of GFCF or allergy testing for SID alone (w/o ASD or other dx)?

thanks,
julie

 

[krissi]

I have heard of using GFCF for SID; food sensitivities can manifest themselves in any number of ways and certainly aren't exclusive to ASD. I am even on a low allergen/GFCF diet myself because I've found it greatly helps with my mood and mental clarity.

It is true that gluten is in a large number of grains and not just wheat. When you do the GFCF diet you have to also eliminate oats, barley, semolina, and a number of other grains. The only grain DD was eating at the time of her test was rice and she still tested extremely high to all grains. We ended up having to eliminate rice too, lucky us...NOT. I didn't even know it was possible to be allergic to rice.

: This is why I'm starting to think that her gut must have been in truly terrible shape.

Anyway, I like to recommend the yahoogroup GFCFKids for anyone looking into the GFCF diet. It is an awesome resource and helped us get started last year when we first started looking into this stuff.

 

[EHHMom]

Thank you all for your reply! All the replies were very helpful. I am going to see a DANS nutritionist on Thursday and then plan to work with our ped. on the tests.
I'll let you know how it goes. Good luck to all of you & yours this week.
EHH

 

[amycurlygirl]

My son is on a dairy, soy and gluten free! Talk about tough! We also try to limit his sugar intake. Possible fructose malabsorbtion issue.
Going to an allergist in Oct. just to get this whole diet thing straightened out.
What can he eat???

I would ask myself if your son could show anymore improvement than he already has had.
The only reason I keep pressing on is due to my sons reactions still. He screams/cries in his sleep about 6 times a night at 17mths.
He had stomach biopsies done that were negative for any issues, yet he is a new and different kid on his limited diet.

Testing in my opinion isn't bad if it's non-invasive. I wish we hadn't had put him through all we did. Even his allergy testing before he was a year was all negative. FYI-we're going to a different allergist this time. Hopefully we can find something this kid can eat and be a happy sleeper.
I can't even find anything to supplement with. Everything I've tried causes some sort of reaction. Rashes, severe reflux, bm issues, etc...

A great site for info is ----- www.enterolab.com
We did testing through them. The findings aren't very accepted by the medical community yet. It's a good site for explaining about the testing though. It's really technical.
Good luck!