Need Advice About What To Ask For

[cmc811]

Hello,

 

I'll try to keep this as short as possible.....I need to know what you all suggest as far as testing for my kids. Here's the background:

 

*I have presumed Celiac disease. tTg mildly elevated, ANA mildly positive, C4 mildly low (notice a trend???) and I have definite symptoms. Thyroid antibodies negative as well as all the confirmation tests done after a positive ANA. Biopsy is scheduled for 3/5, but regardless of the results I will be going gluten-free because I know I have an inflammation problem and that's all I know to try at this point.

 

For my kids.....both boys, aged 5.5 and barely 3.

 

*5 yr old; symptomatic, but pediatrician doesn't think Celiac is the cause. Ordered tTg-IgA at my insistence which was completely negative at <1. Total IgA was 120 with reference range of 24-300, so normal. I asked for DGP and she didn't feel was necessary. She is viewing each of his symptoms individually but yet they're not getting better. The behavior symptoms have been better since removing food dyes but not totally resolved. Besides the behavior issues he has chronic constipation despite a careful diet (high fiber, all whole grain, lots of water, fresh/raw fruits and veggies, etc), respiratory issues, skin issues and seemingly reduced immunity since he has molluscum for the 2nd time which the dermatologist said was extrememly rare. She encouraged a gluten free diet for him because she thought it could be contributing regardless of his test results....

 

*3 yr old; some of the same skin issues as brother, but virtually asymptomatic at this point from my perspective.

 

So, once I go gluten-free we will have a 100% gluten free house, which means any testing for them needs to be done NOW while they're eating gluten. I'm not as worried about the 3 yr old, although I do want testing for him if my biopsy is indeed positive, but its really the 5 yr old that concerns me. I know I could just say screw the medical community and take him gluten free but I'm afraid I will regret that later. If he indeed is Celiac I would like a formal diagnosis to help get him the accomodations he needs at school and such.

 

So...........what would you do? Normally I would just call a GI and make him an appt but they are require referrals it seems. What particularly should I ask the pediatrician for? DGP? something else? And would the recommendation be the same for the asymptomatic child?

 

I'm so frustrated and I sincerely appreciate your advice!

[nvsmom]

The DGP IgA and DGP IgG are definitely the best tests for kids. The tTG IgG would be helpful too as soe people, and it seems more common in kids to me, tend to test positive in only IgG based tests even though the have normal IgA. You could also request the older Anti-gliadin antibdy tests (AGA IgA and AGA IgG) but they aren't as reliable. I would not bother with the EMA IgA as it usually isn't positive if the tTG IgA is not.

This report has the sensitivity and specificity of the tests listed on page 12: Open Original Shared Link

You could ask for the endoscopic biopsy, and possible have the (area beside the) rash biopsied for dermatitis herpetiformis,although if the rash is not itchy, that probably is not it.

My boys tested negative too, and I was denied further testing. I have celiac disease, thyroiditis, and another immune disease so I am guessing that two of my three kids have celiac disease too even though their antibody levels did not show it. I decided to make them gluten-free too even though doctors did not advise it for sone reason. They are doing much better gluten-free.

[cmc811]

Thank you so much for your insight. I'm sorry you've had the same experience though

 

As far as his rash, it really doesn't appear to be DH and the dermatologist seemed very informed about celiac and encouraged me to pursue it more with him, but she didn't have any concerns about his rash being DH. It has a very classic molluscum appearance and I actually agree that the diagnosis is correct.

 

I'm hoping the pediatrician will order the tests you mentioned but in the event she won't, does anyone know a way to get them done without a dr order?

[cyclinglady]

I would get them tested (ask the ped or GP) now before going gluten free.  It's standard protocol for those with celiac disease to have children, parents and siblings tested.  

 

My daughter was symptom free, but our GP gladly tested her.  He never argued at all.  She was not positive, but that doesn't mean she won't ever get it (with two parents with gluten issues, what are the odds?).  She'll get retested if symptoms develop.  Anemia was my only symptom at the time of my diagnosis and later found that I had osteoporosis, osteopenia and a few months later a few fractures.

 

Our house is gluten free except for gluten noodles that are prepared in a special pot, spoon and colander for my daughter.  I give her pre-packaged gluten items to be eaten out of the house.  I did make sure she was eating lots of gluten the month or two prior to her testing. 

 

My blood test came back mildly positive.  My biopsy a Marsh Stage IIIB (moderate to severe damage).  I would recommend a bone scan if you have severe damage.  

 

Take care.  

[cyclinglady]

Find another doctor…….

[GottaSki]

I think you can get your ped to order them.  Emphasize that because your home will become gluten-free because of your diagnosis, your family will lose the best opportunity to test all of your children.

 

Running both DGPs is important as they will indicate if the child has an issue with gluten that has not yet caused enough mucosal damage for tTG antibodies to be found in the blood.

 

Drives me crazy that doctors want to see damage before they'll diagnose children of those with Celiac Disease who are symptomatic...someday this will change.

 

For now, be firm that these tests are necessary - period.

 

Hang in there Mom

[cmc811]

Thank you! I just sent an email to her requesting the ttg igg, dgp iga and dgp igg. I also explained that we will be gluten free by the end of next week, regardless of my biopsy results, and I really want the full testing done before we lose the opportunity. We'll see what she says. I have a feeling it will be "make an appt to discuss" which is going to infuriate me. Why don't we do the tests and then make an appt to discuss results???

 

I get nervous in those situations and have a hard time demanding tests when I'm told it's not necessary. I do much better with email where I can include links to my sources and such. I really need to get over that, but I've never done well with confrontation.

[GottaSki]

I understand completely....took me years to become firm and determined with my doctors.  Undiagnosed Celiac makes us into strong self-advocates.

 

When you do have doctor appts, I find it helps to bring a written list of all symptoms, questions and tests I want ordered...it helps keep things on the right track during those rushed visits with authoritative doctors  

[Cara in Boston]

I think I responded to another one of your posts, so I hope I don't repeat myself.

 

I agree with everyone else that you should insist on a full blood panel (or just the missing tests) before the house goes gluten free.  But even then, kids can have negative blood tests (and a negative biopsy) and STILL have celiac disease.  But you are right, if you can confirm it with medical tests, it will be easier to stick to the diet and require others (school, camp, college, etc.)  to be just as strict.

 

I am betting you see a HUGE improvement when everyone is gluten free.  My son's behavior went from absurd (we basically couldn't go anywhere because he was so unpredictable . . . the slightest frustration would set him off and no consequence seemed to matter.  He was really quite irrational.) to "typical 5 year old boy within days of going gluten free.  He is no angel, but our behavior problems are what I would expect every family to deal with.  

 

Even if everyone seems to be negative, keep in mind that celiac can be "triggered" at any time in your life so ongoing testing is needed.  Our doctor (at the Celiac Clinic at Children's Hospital Boston) recommends my other son being tested (blood panel) every two years . . . sooner if we start to see symptoms.  Even though I only cook gluten free, he is still eating gluten outside of the house.

 

Good luck.  Be firm.  Tell the doctor you need this done for peace of mind, you will forever worry if you don't know for sure.  That can't be healthy, right?

[cmc811]

So I think I'm in need of a new pediatrician, which is very unfortunate because I have really liked her in every situation but this one....

 

Got the phone call today from her nurse that she didn't order the tests because she doesn't see the value...grrrr! Hubby actually talked to her and explained our concerns about going gluten-free without full testing because testing will then be invalid. She seemed to get his point and said she would pass the message to the doctor. We didn't hear back so this is what I just sent her in an email:

 

"Cody talked to Lisa today and expressed concerns about not doing further Celiac testing, but I wanted to contact you. He is still having symptoms and we have made a decision that we will be trying a gluten-free diet to see if mine and his symptoms are resolved. It may be that we have non-celiac gluten sensitivity, which can't be tested for so ruling out Celiac definitely is important to us. Going forward, having Celiac diagnosed offers protection under the disabilities act and will require future daycare providers, teachers, school officials to make sure he stays 100% gluten free in their care.

I have done extensive research and from everything I have read I believe doing the DGP or deaminated gliadin peptide antibody (both IgA and IgG) would be worthwhile. This article is from Canada (Open Original Shared Link), but it shows how 20 patients diagnosed with Celiac through biopsy were negative on the tTG-IgA test and only 1 was IgA deficient. I know that is a small sample size but what if Jacob fits in that group? A passage from the conclusion: "Based on our results AGA II (deamidated gliadin antibody) seems to be equivalent to, but not better than TTG-IgA; however, it may have additive benefits in celiac screening as the combination of the two tests can increase the sensitivity without really lowering the specificity."

I feel there is much more risk in not running the test and missing the diagnosis vs the risk of doing the blood draw."

 

If she stands firm and refuses to order testing I might come unglued......

Other than personal referrals, any tips on finding a pediatrician that knows more than the basics about Celiac? I'm at a loss for how to get these tests ran and it's making me super frustrated.

[GottaSki]

Contacting a local Celiac support group might produce a good recommendation.

 

Great email....hope your current Ped comes around

[africanqueen99]

<--- Chronic physician firer...

 

I feel you.  It's a shame that they are making you jump through the dog and pony hoop.  You are the mother - you get to decide what tests you'd like.

[cmc811]

Contacting a local Celiac support group might produce a good recommendation.

 

Great email....hope your current Ped comes around

Well, time for plan b.........here is the doctor's response to my email:

 

"I discussed today with the GI doctors at Seattle Children's. The current evidence-based recommendation is to screen with TTG (Jacob's was negative) and do no further testing if TTG normal. The new test mom mentioned, DGP, is recommended for a subset of patients who need it. It is not a screening test and nobody would know how to interpret the results for Jacob, even if we did it. It is not so simple as a blood draw. The results might be unclear and that does add risk of unnecessary tests and procedures. So when in doubt, we go with what the overall medical evidence (not just one study) shows.

In the future, schools and daycares will honor any doctor's note about what Jacob can and cannot eat, and it has nothing to do with an official diagnosis that has been made. We do this for kids all the time and have few problems with it.

My apologies for another long-winded reply. I would recommend a face to face visit if you/mother wants to discuss further."

 

So, I guess I'll give it a rest through the weekend and hopefully get my biopsy result back next week. After that I'll ask my GI what she recommends for the kids. She doesn't see pediatric patients but I discussed his symptoms with her previously so I'll see what she can do based on family history if my biopsy is positive. The frustration continues......

 

The other tactic I have up my sleeve is seeing what the dentist has to say. Our youngest son has no digestive symptoms but he has been diagnosed with dental hypoplasia. His two front teeth have significant spots on them and were that way when they came in. I'll see what he knows about Celiac and the connection. Maybe his expertise can get us somewhere. I'm willing to try just about anything at this point!

[GottaSki]

Well, time for plan b.........here is the doctor's response to my email:

 

 The new test mom mentioned, DGP, is recommended for a subset of patients who need it. It is not a screening test and nobody would know how to interpret the results for Jacob, even if we did it. It is not so simple as a blood draw. The results might be unclear and that does add risk of unnecessary tests and procedures. So when in doubt, we go with what the overall medical evidence (not just one study) shows.

 

 

Grrrrr

 

"Overall medical evidence shows (not just one study", yet she is dismissing the need for a complete celiac antibody panel and is in fact basing her decision on one single test result -- and leaving multiple symptoms without diagnosis.

 

It is very simple to read a DGP test...the lab gives a range and if the antibodies are higher than that range it is positive -- just liike the tTG!  If it is positive the body is producing antibodies to one of the two peptides in the gluten protein.  In simple terms the body is having a reaction to gluten.

 

She and whomever she consulted with at Children's GI need more training with regard to Celiac Disease and NCGS symptoms and testing.

 

If your biopsy is positive...you children will need to be tested with complete antibody panels every three years or if any symptoms are present.  I would ask your GI for a note for your Ped.

 

Wait for your results and perhaps try to contact a local celiac support group -- if there is one.

 

Hang in there

[cmc811]

Her answer was not only frustrating but is leaving me very discouraged about finding a different doctor that might listen. To my knowledge the GI dept at Seattle Children's is where he would be referred to by any PCP in this area. If they aren't more knowledgable than what hope does that give me?

 

Celiac might not be the problem but I'm not willing to say it's been ruled out based on the ttg-iga alone. Too much evidence supports it can be falsely negative in kids. I don't know what the issue is but my instinct has been telling me for far too long that something is up with him. He's only gained 2 lbs in 1.5 years (total weight 38 lbs at 5.5 yr old), often complains of pain around navel, frequent waves of nausea with no vomiting, fatigue and constipation. all that coupled with the fact that I likely have celiac and he for sure has alopecia areata makes me more than a little suspicious!

[GottaSki]

Don't worry too much yet...I found this webpage on Celiac for Seattle Children's:

 

Open Original Shared Link

 

Under the causes and diagnosis sections it clearly states that family members need to be tested and the testing includes antibodies to gluten and other proteins.

 

If your Ped talked with a GI that does not specialize in Celiac and NCGS they are not the last resort.  Do try to find a celiac support group in your are -- especially a R.O.C.K (Raising our Celiac Kids) chapter to find a doc with celiac knowledge.  Oh...I found this list:

 

Open Original Shared Link

 

and do wait to remove gluten for the kids until you have your biopsy results and see if there are better options...it really is worth getting data before gluten is removed from their diet.

 

Hang in there!

[cmc811]

Thanks so much!

 

I actually just found the Swedish GI page too and it looks like I can make an appt there without a referral. I'll wait for my biopsy results and then we'll likely end up there.

 

Thanks for all your encouragement. It's such a frustrating process but feeling icky everyday is frustrating too!

 

*Added: I just remembered one more finding that probably is relevant. His RBC is low. His is 3.77 and the reference range is 4.50-5.10 and his MCV is high (90.9 with normal being 73.6-90.0). I was told these were insignificant findings because his HGB and HCT were normal. Everything I have read suggest iron-deficiency anemia, which of course, is a symptom of celiac.

[cyclinglady]

I am not an expert, but I have been very anemic. I have a genetic anemia that has to do with small red blood cells (MCV) and had iron deficiency before my celiac disease diagnosis. Ferritin levels (iron stores) is a good indication of iron-defiency anemia. I could process iron but could not store it because of the celiac disease. My red blood cells are always tiny and it puts my hemoglobin just under the range. My body has always compensated for it. The iron deficiency anemia really pushed down my hemoglobin levels where it was difficult for me to even talk.

Once my celiac disease anemia resolved, I no longer consider myself anemic despite the genetic anemia.

I guess I am trying to say, don't assume he is anemic just because he is low on red blood cells and and they are big.

[Cara in Boston]

Me again . . .

 

My older son tested negative on all the blood tests (when I had the whole family tested after younger son's diagnosis).  Our doctor (a celiac specialist) still requested he have an endoscopy because he had strange discolorations on his teeth.  His biopsy was negative too . . . and now, a few years later, his teeth seem completely normal.  He is not gluten free, but eats about 80% less than he used to eat.

 

Our dentist knew ZERO about Celiac Disease or the symptoms related to teeth.  She barely knew anything at all about Celiac Disease.

[ArPlasma]

Me again . . .

 

My older son tested negative on all the blood tests (when I had the whole family tested after younger son's diagnosis).  Our doctor (a celiac specialist) still requested he have an endoscopy because he had strange discolorations on his teeth.  His biopsy was negative too . . . and now, a few years later, his teeth seem completely normal.  He is not gluten free, but eats about 80% less than he used to eat.

 

Our dentist knew ZERO about Celiac Disease or the symptoms related to teeth.  She barely knew anything at all about Celiac Disease.

This makes me wonder about my other son again. He is on a gluten free diet right now because our home is gluten free and he is not in school yet. His teeth have started some discoloration( like oDS1 who is diagnosed Celiac), he's had chronic urticaria for 8 months now and tested right below the positive cutoff for Celiac. The doctor said that his teeth discoloration cannot be Celiac related because he is not old enough, not his secondary teeth. Also, his pediatrician refused to refer to pediatric GI giving same reason as original poster.

Our local GI Celiac specialist are really strict on the golden standard and need both blood and positive biopsy to diagnose.

In the month and half that DS2 has been gluten free he has gained 3/4 of an inch, he had not grown in the 4 and half months before and barely at all for 8 months. His pediatrician said it happens, probably not related to him being gluten-free now. How can one be sure?

I am worried about starting school without a diagnosis seeing how hard it is to protect ODS1, he was just glutened this week after dodging a teacher giving him a pouch of goldfish crackers a few days before. He kept saying:'it's my fault, my fault, I did not ask' all while being sick.

This is tough!

I wish some docs would be more proactive when there is a family history to keep kids safe.