Got The Other Three Kid's Tests Back

[TammyTE]

So out of my 5 kids no one tested true positive as celiac.  Here are the results all together:

 

10yo girl:

Total IgA   Ref Range   52-290 mg/dL                                                                      73- Sufficient    

Anti-Tissue Transglutaminase IgA (tTG IgA)  Ref Range <4.0 U/mL                     <1.2 - Negative

Anti-Deamidated Gliadin IgA (DGP IgA\0  Ref Range <20 U/mL                             2 - Negative

Anti-Gliadin IgA (AGA IgA) Ref Range ,20 U/mL                                                       6 - Negative

Anti-Gliadin IgG (AGA IgG) Ref Range <20 U/mL                                                    43 – Strong Positive

 

8yo boy:

Total IgA   Ref Range 48-266 mg/dL                                                                        107 -Sufficient                                

Anti-Tissue Transglutaminase IgA (tTG IgA)  Ref Range <4.0 U/mL                     <1.2 - Negative

Anti-Deamidated Gliadin IgA (DGP IgA\0  Ref Range <20 U/mL                              2 - Negative

Anti-Gliadin IgA (AGA IgA) Ref Range ,20 U/mL                                                       2 - Negative

Anti-Gliadin IgG (AGA IgG) Ref Range <20 U/mL                                                    15 - Negative

 

 

6yo girl:

Total IgA   Ref Range 33-185 mg/dL                                                                        126- Sufficient                 

Anti-Tissue Transglutaminase IgA (tTG IgA)  Ref Range <4.0 U/mL                     <1.2 - Negative

Anti-Deamidated Gliadin IgA (DGP IgA\0  Ref Range <20 U/mL                              2 - Negative

Anti-Gliadin IgA (AGA IgA) Ref Range ,20 U/mL                                                       2 - Negativve

Anti-Gliadin IgG (AGA IgG) Ref Range <20 U/mL                                                     24 – Weak Positive

4yo girl:

Total IgA   Ref Range 33-185 mg/dL                                                                        57 - Sufficient                                      

Anti-Tissue Transglutaminase IgA (tTG IgA)  Ref Range <4.0 U/mL                     <1.2- Negative

Anti-Deamidated Gliadin IgA (DGP IgA\0  Ref Range <20 U/mL                             1 - Negative

Anti-Gliadin IgA (AGA IgA) Ref Range ,20 U/mL                                                       3 - Negative

Anti-Gliadin IgG (AGA IgG) Ref Range <20 U/mL                                                    34 – Strong Positive

2yo girl:

Total IgA   Ref Range 17-94 mg/dL                                                                         68 -Sufficient                                  

Anti-Tissue Transglutaminase IgA (tTG IgA)  Ref Range <4.0 U/mL                   <1.2 - Negative

Anti-Deamidated Gliadin IgA (DGP IgA\0  Ref Range <20 U/mL                           2 - negative

Anti-Gliadin IgA (AGA IgA) Ref Range ,20 U/mL                                                    3 - negative

Anti-Gliadin IgG (AGA IgG) Ref Range <20 U/mL                                                 34 – Strong Positive

 

 

 

I got my 8yo son and 2yo daughter tested earlier than the other three. When my 2yo test came back the Nurse Practitioner told me I should treat her as celiac because she is so young and things weren't adjusted for her age. But in comparing these tests, it looks like the lab *does* adjust the ref range of the total IgA for age right?  When I took 2yo to the GI doc she told me that they no longer use all the numbers on this test. They only look at the first two lines and she tested negative. End of story.

 

Oh and my 8yo son is the one that they didn't order the correct test and we had him retested. He had been off gluten for a few days but I was hoping it didn't make a difference. Now I am wondering because he is the one I  notice having trouble on grains. <roll eyes>

 

I would love to know thoughts from those of you in this forum with much more experience than me!

 

 

 

 

 

 

 

 

 

 

 

 

 

[mushroom]

Yes, the ranges have been adjusted for their ages.

 

Here is what the University of Maryland and Columbia University have to say about the AGA-IgG blood test:

 

"A positive AGA-IgG blood test indicates that the body may be mounting
an immune system response to gluten ingestion, but it's considered less
specific than other celiac blood tests. However, a positive AGA-IgG
test can indicate celiac disease in a patient with IgA deficiency."

 

_Source:

_{Open Original Shared Link. University of Maryland Center for Celiac Research. Accessed Feb. 14, 2011.}

_{Open Original Shared Link. Celiac Disease Center at Columbia University. Accessed Feb. 14, 2011.}

 

While I strongly disagree with the GI who says none of the other tests are significant, (unless she meant that the findings were not significant, which I don't think she did), it is true that a positive AGA-IgG in an IgA-sufficient child is not as meaningful as if any of the other tests were positive.

 

As you know, tests can be falsely negative in those with gastrointestinal damage.  And your children could all be non-celiac gluten intolerant.  Your two-year-old is pretty young for accurate test results, anyway.

 

I am sorry you did not get any definitive answers.

[TammyTE]

Thanks. So does that mean the NP didn't know what she was talking about?  She basically said that if you "adjust this for her age" my 2yo should be considered celiac.

 

What would you do in this situation?

[mushroom]

I'm not sure what the "this" is that she was talking about adjusting.

 

Just fill me in a bit here because going back over your posts, I understand the problem with your two-year-old, but don't have a handle on the symptoms of the other two.  Can you sketch in for me what led up to the testing?

[nvsmom]

A positive AGA test indicates there is a problem and that it is probably celiac. If you don't think it's celiac, you should ask the doctor what they think the problem is.   Perhaps if you suggest going gluten-free for a few months and have their AGA IgG retested after that, their AGA IgG tests might come down (like it appears your son did) and then you'll have an answer.

 

If my kids' test came back like that, and I strongly suspected gluten was a problem for one even though he tested negative, I would REALLY consider putingt them all on a gluten free diet...In fact, my three kids tested negative but I think gluten was an issue for a couple so I made them all gluten-free... and I was right, they are doing much better.

 

...I don't know why the medcal community discourages people from trying the gluten-free diet until the damage is bad enough for very obvious positive blood tests or biopsies. I just don't understand their thinking.... But that's just me and my own personal opinion, and not neccessarily the right opinion. 

 

Best wishes to your kids. i hope they are all well.

[TammyTE]

Thanks for the input Nicole.

 

Nirole -  We have done various "diets" over the years. It all started when I figured out my oldest couldn't do red40 food dye when she was about 2yo. When my 8yo son was 2-3yo he was having horrible behavioral and speech problems, night terrors, eczema (which they have all battled over the years), lots of behavior that would point to autism spectrum but I don't think he is autistic.

 

In 2007 (ds was age 3) Took out preservatives and all food dyes - In 3 days his speech jumped over a year in ability and his speech therapist told us he didn't need therapy anymore. His night terrors stopped. He now made eye contact and could sit for more than 3 seconds.

 

Some things that still lingered were: sensory seeking, aggression (at times), slow speech and later he was (is) a struggling reader. He also would have trouble with his bowels and sometimes wet his pants and not even know it.

 

Since then we have tried various elimination diets. I noticed bedwetting stopped for my oldest two on an elimination diet (the one Dr. Doris Rapp suggests in her books), skin got better, behavior was good. But when we added things back in I never could find the culprit. We did it again and same thing happened. There was never an immediate "reaction" to any one thing. I don't know if it was a build up or a combination of foods or what.

 

Fast forward a few years. It is 2010 and I now have five kids.   We try the SBP (Spectrum Balance Protocol) diet. Mainly for my ds who is struggling with his schoolwork. It's basically a grain free, dairy free, bean free, nut free, sugar free (and some other things free LOL) diet. We followed this diet for about 10 months. During this 10 month period we were all doing really well. After the initial 2 weeks of detox. blech!  Everyone's poop was perfect. We all lost weight. Not that my kids really needed to but they never got to be horribly skinny so it seemed just fine. No one was sitting on the toilet forever trying to "go". No eczema on anyone. Behaviors were great!  My son was beginning to make progress reading.

 

I was nursing my youngest during this time. I got a great deal on some farm fresh eggs. This was an easy protein that was allowed on the diet so we went egg crazy for a bit. I noticed my youngest started getting eczema. My next youngest shared a bite of boiled egg with her one day and she broke out into hives. I then put two and two together and figured she was allergic to eggs. I went egg free and her skin cleared up. She weaned a month or so later.

 

It had now been about 10 months on the diet. I was burnt out. Didn't know what to do or what the right decision was. Was it really worth it to be free of all these foods?  Maybe it was just one thing we were eliminating and the rest would be okay. constantly second guessing. Lots of other stress in our life at the time and long story short I gave up on the whole diet. My kids ate Little Ceasar's pizza and Kentucky Fried Chicken for the first time. They started eating peanut butter again. I would sometimes slip up and my youngest would get something with egg in it. Her eczema came back. She would get splotchy at times and I thought it was eggs but turns out it was peanuts. Over time I figured out that she is allergic to eggs and peanuts. She has been free of those for several months now and the eczema is gone and no hives.

 

Once we went off the diet her poop got nasty. It became very goopy/mushy and had this sort of powdery residue that you could not get off her bottom unless she got a bath. Everyone else's poop got bad too. The first few months my son's looked like he didn't even digest his food. If he ate oatmeal it looked like he vomited oats into the toilet when he had actually pooped. Now everyone is constipated but will sometimes have diarrhea. My youngest (the 2yo) still has the weird mushy poop. My son has backpeddled in his reading ability and behavior is CRAZY for all of them. I am constantly bloated and just feel so tired all the time. My head itches constantly which it would do before the SBP diet but not while we were on it. We have all gained weight. The kids look like normal chubby kids that are ready to hit a growth spurt, but I have gained a good 30-40 lbs. yikes!

 

I'm not sure if that is what you were wanting or not. LOL  Maybe you can see something from outside the box that I am missing. I just don't know what to do at this point.

[mushroom]

YES!!  That is what I wanted to know.  You are too close to it.  You have to step back and look at it.  Read your own post as if you were reading someone else's post, a new forum member.  And think about it.  Don't read the rest of my post until you've done that.

 

 

 

 

Your instincts are spot on.  Your kids and you all do better off gluten!!  It doesn't matter a damn what any of their stinkin' tests say, you are to my mind all definitely gluten intolerant (with a bit of egg and peanut and oats thrown in for good measure!!).  Go back on the diet and live happily ever after.  Once you are all fit and healthy, go back to your GI and show her how well you are all doing.  Keep a notebook of the kids' progress so that you can demonstrate to her why you are doing what you are doing.   And then insist that she diagnose your children as gluten intolerant so that the schools will make the appropriate accommodations for them.  If I were you I would try gluten free first because you might not have to eliminate all that other stuff, just the eggs, oats, peanuts.  But if that doesn't work, by all means go back on the other one, whatever makes you all healthy.  And yes, it is all worth it.  Look at the stress you have been under lately

 

Good luck and best wishes.

[Cara in Boston]

I see 4 positives there . . . and the one kid that is negative was gluten free before testing so I wouldn't consider his tests to be useful.  A "weak" positive is a positive.

 

My son tested negative on all IgA tests . . . even though he does not have a deficiency.  Only his IgG tests were out of range.   This was confusing to the pediatric GI that we saw.  He also didn't have any symptoms (except behavior) and a "low probability" on the genetic test.  The first doctor said he couldn't possibly have Celiac Disease.  By that time, I had been tested too and was positive.  This was too much of a coincidence for us, so we took him to a celiac specialist.  They did a biopsy and found he had extensive damage.  

 

4 (and maybe 5) of your kids have a problem with gluten.  Just because the numbers were not high "enough" to convince your doctor, they are out of the normal range.  You should all be gluten free.

[nvsmom]

Wow. I agree with Neroli, you have done a great job in the past of finding the offending foods and eliminating them.  And with five kids?? That is a LOT to keep track of. You've done a great job.  It sounds like you should revisit your past results and just stick with what you've done before (with some tweaking).  Go with Neroli's advice, she is one of the most knowledgable veterans around here; I know I learned a lot from her too.

[TammyTE]

Thank you all so very much.  I admit I am getting overwhelmed here. Playing private investigator for each of the kids and myself gets a bit confusing.LOL I think part of my problem is that when *I* am not eating right my mind doesn't function at 100%. Therefore, I miss some things with the kids.

 

It is frustrating that these doctors don't want to work *with* me and take some of the information I have read or found personally with my family and use it to see the big picture. They just blow me off and dismiss what I am saying.   It's especially frustrating when we are the one paying them.

 

My main thing is that I don't want to eliminate foods that don't need eliminated. So what do you think of this plan?

 

-Keep all the preservatives and artificial colors out of everyone's diet for now.

-Keep 2yo off peanuts and eggs as those are obvious allergies.

(one thing I am wavering on is keeping everyone off peanuts. My other children's blood test for allergies showed peanuts as a problem but that can be false positive. None of them have a severe reaction like she does.)

-Take everyone off gluten.

 

Do this for a while (how long??) and see how everyone does. I'm guessing we will show positive results within a week or so and definitely by one month. If we don't see good results by one month(?) then continue to avoid gluten but also:

 

-avoid dairy

 

*or*

 

-avoid other grains

 

Which would you do? Dairy or other grains?

 

My son's blood test for allergies showed allergies to tons of grains and beans. But again, those could be false positives.

 

Last thing.  They all seem to have inhalant allegies to pollen, dust, mold, cats and dogs. The allergist prescribed Zyrtec and Flonase. I really don't want to do those things. Should I wait till we get the diet back in order to try those meds?  I hate changing too many things as once as then it's hard to know what helped.

[mushroom]

You are right to take things slow instead of rushing in.  So what would I do??

 

Definitely eliminate the gluten.

Eliminate the dyes and preservatives (you seem to have been able to do this before, right? )

Keep your two-year-old away frorm peanuts and eggs.  Are your other children responsible enough to make sure she does not get them if they are in the house?  If not.... we don't have peanuts in the house, but have plenty of other nuts, especially almonds.  Hubs has peanut butter and maybe your other kids could too, but you can get other nut butters, especially almond, although it is more expensive.  This ball is in your court for sure.

 

See how this works.  Since we don't have biopsies we don't know if there is intestinal damage.  Even if the tTG is negative it is possible to have that damage, and if there is damage that person will probably have problems digesting the lactose in milk.  Again, there are plenty of other milks around, rice probably being the cheapest, but avoid Rice Dream.  Sometimes hard cheeses are tolerated when milk and ice cream aren't.  You can get ice creams made from coconut milk.  You can also get Lactaid milk which contains the enzyme for digesting it which works for some.  Dairy, if it seems to be a problem, is something you can play around with a bit, testing if it is lactose or casein that is the problem.

 

I would personally keep some other grains in to start with but again this is your choice.  You can start with them and then remove if you do not see any progress after a couple of months.  Remember that not everyone heals at the same rate so while one or more are improving it could take another longer to get to that point and you can't assume that it's because of another food intolerance; it could just be rate of healing.  You may notice changes within a couple of weeks but I would wait a couple of months.  Then, so long as you are seeing improvements, keep going.  If you are not progressing then it's time for change.  Some grains allows you the option of rice and pasta and expands everyone's diet if they are tolerated.  Maybe just start with rice at first since it is usually the best tolerated.  Tinkyada pasta is just rice flour.  And I think Pamela's baking mix is just rice, potato, tapioca starches. 

 

Sometimes with the allergy blood tests, because the body is in a hyperreactive state it reacts to things it otherwise would not.  But legumes (beans, peas, etc) are a possible allergen - I found out they were for me - but don't go looking for allergens all over the place yet.  You want to keep as many foods available as possible, is the way I see it.  If you can get everyone stable on no gluten, no dyes, no preservatives, and if necessary, no dairy, then you can try one food at a time with everyone, only one new thing a week.  I am having visualizations of six notebooks of foods and symptoms dancing around in my head and I can see why you have been stressed out     Fortunately, you have a pretty good idea by now of what works from your previous trials so you are not starting from scratch.

 

Several posters on the forum have reported that Zyrtec helps them a lot with everything, not just nasal problems.  Don't start them both at once and don't start Zyrtec right away if you decide to try it, so you can evaluate whether it makes a difference when you add it in.

 

Just remember, from now on you are the boss, what you say goes.  So you can take back control of your life and your children's lives. 

 

I hope you all improve rapidly and that this plan proves to be a winner for you.  I wish you all the best of health.

[TammyTE]

Thanks for helping me think it through. We are primarily using sunflower seed butter from Trader Joe's. My other kids are not the best at keeping PB out of 2yo's reach. ;-)  We haven't had eggs in the house but recently my husband fixed some. 2yo somehow got in contact and had eczema and diarrhea. So I might keep eggs in the house and use them *in* stuff but probably not doing scrambled eggs anytime soon. LOL

 

Dairy - You know....I'm pretty sure I am lactose intolerant. When I eat dairy I get lots of mucous and am constantly clearing my throat. Often times ice cream or a glass of milk will send me straight to the bathroom. My sister is lact. int. wore than that. When we eliminated dairy before I noticed my ds and I having the worst gas pains and such when trying a glass of milk. Interestingly, we did pretty good with raw milk, but it was pricey so we just went dairy free. ;-)  So maybe I should take our dairy for a bit. I wonder if just taking out all dairy except butter would work. We were eating small amounts of butter before and seemed to do okay. It seems to be milk mostly that disagrees with some of us. In your experience would it be better to go completely dairy free for a time just to help things heal faster or would that make a difference?

 

I don't have a problem going gluten-free really. In a lot of ways, it's been a lot more stressful not knowing what to feed everyone than being on a restricted diet. I have lots of great recipes that my kids love. Thankfully they are all great eaters. That's one thing all these diets have done for us.

[mushroom]

For most celiacs they are intolerant to lactose only, until the time their villi heal and they can start making the enzyme to digest it again.  This means cutting out milk, cream, ice cream, frozen yogurt at a minimum.  Some can tolerate yogurt; I could, along with cheese and butter and even sour cream where the cultures digest the lactose.  You can test yourself and your son out with a piece of hard cheddar cheese.  If you have problems with that, better to go dairy free, as cheese is mostly milk fats and proteins, not sugars, and is digested by different enzymes.