Trying To Understand My 8 Yr Old Sons Blood Work

[jacksonsmummy]

I ihave had my son on a low sugar, no gluten, Dairy,peanut, soy,..... elimination diet due to a constellation of odd symptoms. He had rashes, low grade temps, chronic head ache, tummy aches, mood swings, joint pain and low energy. We brought back corna nd he was fine, we brought back soy and he was fine but I tied wheat and he started with thee temp and rashes... same when I tried Dairy. So we went back to gluten and diary free. Last week he saw a Rheumatologist and he ran a TON of tests. He said the Celiac test may not work because he already had him Gluten free for over 6 weeks. Well it can back with a positive ttg Ab, Igg  the rest were negative. Is this a significant result? I am waiting on a call to explain what I am looking at but I would love any input you expert parents might have!

[shadowicewolf]

Too long off of gluten for any celiac tests to come back positive, unless of course, he was still being cross contaminated on a day to day basis.

[jacksonsmummy]

But what I am saying is that he did has a positive test, it was the ttg Ab Igg which I am told can be positive off gluten because it is not an indicator of Glten being present but an antibody associated with the Leaky Gut component

[nvsmom]

But what I am saying is that he did has a positive test, it was the ttg Ab Igg which I am told can be positive off gluten because it is not an indicator of Glten being present but an antibody associated with the Leaky Gut component

I have not heard about the link of ttg IgG to a leaky gut. I know ttg IgA is often linked to other diseases (infections like e. coli or autoimmune like Hashimoto's or crohn's) so I assume ttg IgG is as well, but I don't know the connection to a leaky gut.

 

I do know that the ttg tests are pretty specific to celiac (about 90-95% specific meaning that 5-10% with a positive test will have another disorder). Chances are that he has celiac. As you know, once people stop consuming gluten they'll stop making the auto antibodies but as your son's test shows, there is often a lag time - tests don't become negative immediately. I would guess, and this is only a guess, that his ttg IgG would have been higher if he was still eating gluten (based on his symptoms).

 

For further testing, your son should be eating gluten so the results are accurate. He could repeat his blood tests or do an endoscopic biopsy... or you could simply put him back on the gluten-free diet.

[Cara in Boston]

My son (diagnosed at age 5, he is now 8) only tested positive on the IgG tests - all his IgA tests were normal.  The doctors were confused.  One said he didn't have it (no symptoms, normal IgA) but we took him to the celiac clinic at Children's Hospital Boston and they were concerned about the IgG tests.  They did a biopsy and it was positive.

 

If his blood test is still positive after being gluten free for 6 weeks, I would take that as a STRONG indicator that he should be gluten free.  A biopsy at this late date might come back negative, but you already have the positive blood test.  At the very least, he is gluten intolerant.

 

Sometimes celiacs damage can cause people to be intolerant to dairy too.  This goes away once the gut has healed.  

[jacksonsmummy]

Thank you! I talked to the Dr, today and he said that he strongly suspects Celiac. He is sending us on Monday to Mass General for Children and we will see GI. If they do the Biopsy I want him on Gluten again before the test so we know for sure what we are dealing with. It is interesting what you said about Dairy. I have had him off Dairy as well because he is symptomatic on that too. I live in the Boston Area as well.

[Cara in Boston]

Our experience at MGH was not good.  We LOVE the hospital - all our primary care doctors are from there, I delivered my second child there, etc.  However, after Joe's initial blood screening, we went to the pediatric GI there and got terrible service.  The doctor (Katz?) was condescending when I questioned his diagnosis (or non-diagnosis) "You've read too many magazine articles . .. "  "Don't go messing with his diet, it can be dangerous . . ."   He said Joe didn't have it because he didn't "look ill" and his genetic test indicated he had a "low" possibility of having celiac disease.  He just left it at that.  Didn't try to figure out why he was out of range on all his IgG tests.  By then I had read all about the different ways celiac could present and that the genetic test really isn't that helpful (you don't need the common genes - anyone can develop it).  Also, I had a positive blood test by then too, so I knew something was up.    We had the opposite experience at Children's.  Our doctor there (Weir) is a Celiac researcher, so she was up on all the latest information.  She repeated the blood tests and since he was still positive on the IgG tests, she ordered the endoscopy.  They found "extensive" damage.  They even did an endoscopy on my other child - even though he had zero symptoms and negative blood tests.  He has always had discolored teeth and that was enough.

 

In any case, This was more than two years ago.   I just read an article about MGH opening a brand new celiac clinic, so maybe you will get a doctor who is better informed.  Make sure you know as much as possible so if you hear something wrong like I did, ("If he had celiac, he would be having diarrhea every day.") you will know the doctor doesn't really know what he is talking about.  

 

Definitely keep him eating gluten until after the test.  Remember, if the test is negative, it only means that damage was not FOUND, not that it isn't there.  Do not take a negative biopsy to mean he doesn't have celiac.  After the test, try the diet and see for yourself.  Think of it as the final test.

 

Children's Hospital has a wonderful support group for families with kids with celiac.  You don't have to be a CHB patient to join.  The first thing they do is send you a big welcome packet full of gluten-free products and treats.  My son was THRILLED when this arrived.  His brother was jealous - which helped us transition smoothly into his "special" diet.  They have a facebook page if you want to check them out.

[jacksonsmummy]

Thank you so much for the input! I called back because when I made the GI appointment they asked if I wanted the Celiac clinic or GI. I wasn't sure which they wanted me to go to so I said GI. When I double checked after reading this the Rheumatologist said he wanted my son seen in the Celiac clinic. I changed the appointment and we will be going Thursday afternoon. The woman on the phone couldn't tell me whether or not to put him back on Gluten. The poor kids is afraid to eat it knowing how yucky he feels. I know they are not doing a biospy Thurs so I will just tell them that if they are planning to do one I want him back on gluten for at least a month or so before the test so we know exactly what we are dealing with. I was thinking back and remembered that when he was like 2 he had an ultrasound of his belly because it was so round it was out of proportion to his size. After the scan they said " nope just a little Buddah belly" Well that Buddah belly looks like some one stuck a pin in it now! I was amazed how fast his tummy flattened out! WIth in 3 weeks of the diet. Wait.... both my kids have discolored teeth!! WHat does that mean??

[mushroom]

You are lucky!  The new celiac clinic MGH has opened is being run by Dr. Alessio Fasano, the renowned Dr. Fasano, the  "King" of celiac (or at least its most famous researcher)!!!    He used to be in Maryland and has apparently been lured away.

[jacksonsmummy]

Really? This is new territory for us. I have always know " something"  was wrong He has had Migraines, " abdominal Migraine" with projectile vomiting, pretty wild mood swings... rashes.... I started by eliminating chemicals in the house as much as we can. We use soap nuts for laundry, chem free cleaners and soaps..... the eliminated artificial flavors and colors as well as nitrates and as many preservatives as we can. Finally in desperation I did an elimination diet and found he reacted to Gluten and milk. From there the Dr did the testing.  I so appreciate your input and kindness

[jacksonsmummy]

Dr Fasano is WONDERFUL! He was so kind and so weet with my son. He said it all looks to be celiac but because he was Gluten free for 6 weeks when they tested his blood he wants to retest in 3-4 weeks. He wants my son to have Gluten twice a day until the test and see if we can't tease out the IGA antibodies. He is already IGG positive but he said the fact that we gluten free when tested could have taken the IGA down. He said rarely there are patients not IGA deficient but that never show those antibodies so if he comes up IGG only again then the next step is a biopsy. I was afraid he would be upset with me for doing the elimination with out a Dr over seeing it but it was the opposite. He was glad I took action when the allergist wouldn't test food allergies on an 8 yr old. I am more than pleased with him and feel good that we have a plan. I am a little scared putting him back on though, he hates how it makes him feel!