Waiting On Biopsy Results

[ArPlasma]

Greetings,

I am new to the forum. My 6- year-old son just had his biopsy done today and we will not have the results until his next GI appointment( jan 31).

Talking to the GI who did the biopsy stressed me out a bit about the probability of a negative result. Then what? He said they suggest staying on gluten and testing blood levels again in 6 months, then do a repeat biopsy if blood levels still positive.

My son did not have any visible damage, which I felt like they were expecting to see some( I should have asked how much of an indicator it was). We have been staying on a normal gluten diet until the biopsy( we don't eat a lot of bread but my son has had a sandwich or at least a few crackers containing gluten in it consistently on a daily basis but we eat mostly rice/ beans/ potatoes/ veggies). Not sure how much of an impact it is on the absence of visible stomach damage( which I am in a sense relieved that it is not as bad as it could otherwise be).

For reference, his blood tests results were as follow:

Tissue transglutam AB IGG 46

Tissue transglutam AB IGA>100

Endomysial AB(IGA) positive 1:160

Also Celiac runs in my husband's family( 3 aunts and uncle diagnosed, a brother self diagnosed with gluten sensitivity but who may well be full blown Celiac given his symptoms).

Also my son is quite tall and his pediatrician did not want to test Celiac at first because he did not fit the picture, I insisted. His 'symptoms' are above belly button pain, chronic constipation, migraine headache, knee, arm, feet oain, blank stares( for lack of better description, he sometimes looks like he is not there, absence seizures have been ruled out). He also has a speech delay which we don't know if it has anything to do with it all. His auditory brainstem response are also poor though no obvious reason on MRI.

Also my husband blood test came back positive on the TTG IGA, not on other tithers.

The idea of leaving him on gluten in case of a negative biopsy results is not appealing at all to me especially since the GI admitted himself that they were not absolutely sure what to do with positive blood tests and negative biopsy as in not sure what is really happening in the body.

Anyway, as I said earlier I am quite stressed out about this. This conversation with the GI made me doubt that Celiac was the real culprit or at least part of the reasons for my son's symptoms. Sorry for the long post!

[greenbeanie]

Welcome to the forum! It's a very stressful process, but I hope you get clear results. My daughter did not have damage visible during her endoscopy, but her biopsy came back positive (at age 4). With multiple positive blood tests, it certainly sounds like celiac. Our diet was much like yours beforehand - really not all that much gluten on a daily basis. I did make sure she had at least one small serving per day for the month before testing, and it was enough. I'm sure everyone's different, though. Hopefully they took enough biopsy samples during your son's endoscopy to reduce the chances of missing spotty damage. They took 12 (if I remeber correctly) from my daughter, and not all of them showed damage but there was enough villous atrophy for a clear diagnosis.

My daughter is also tall for her age - in the 90th to 95th percentile for most of her life. We also had several doctors refuse to even consider the possibility of celiac because she is tall. They were quite sheepish after her results came back. Interestingly, her growth curve actually leveled out after six months gluten free, which is the opposite of what everyone expected. I'm not concerned at all because she is obviously healthier and happier now, but it is odd. She had lots of symptoms since very early infancy, and most of the earliest symptoms were neurological/sensory/reflex-related. She did have GI symptoms too, but they were not our most urgent concern. Doctors thought she had mild CP at one point, and also tested her for seizures. Fortunately, almost all of these problems improved dramatically with no additional intervention once she started a gluten free diet (and previous physical therapy and other treatments had had little effect).

For what it's worth, I think you're right that it was be crazy to keep feeding your son gluten for another six months, just for the sake of retesting later. Maybe you could ask them to run the DGP tests if they haven't already, but after a full initial round of testing is done (sounds like it pretty much is), I'd certainly try the diet and see if it helps. But having said that, I hope you get a clear diagnosis this time around so there's no uncertainty about how to proceed.

[GottaSki]

Welcome!

 

With familial history, strong positive antibodies - including EMA-IgA which indicates intestinal damage - and symptoms I can't imagine a reason to keep this child on gluten for another six months.  That the doctor suggested this - especially before the biopsies have been processed leaves me to wonder how much experience/training this doctor has with Celiac Disease.  Do you by chance know how many samples of the small intestine were taken?

 

Regardless of the outcome from pathology, with such strong positive blood work -- removing gluten immediately upon completion of the endoscopy is the next best step.  After all, response to diet is often the most important part of the equation in young kids. Keep in mind that should his antibodies come down after six months gluten-free that would be an indication of gluten being the issue AND you will have prevented six more months of continued damage.

 

Take a look at this thread...it contains a wealth of information to help you and your family thru the transition:

 

Newbie Info 101 - Celiac Disease - Coping With - Celiac.com Celiac Disease & Gluten-Free Diet Forum

 

Oh...it might be wise to have both hubs and son have the rest of the celiac panel completed before removing gluten:

 

DGP-IgA

DGP-IgG

Total Serum IgA

 

but if your docs are being difficult about ordering tests -- I certainly wouldn't wait to help your son!

 

Hang in there

[africanqueen99]

Our GI DX my oldest even with a negative biopsy and her blood work in the "positive, but not crazy high" category.  She was willing to look beyond the "golden standard" and focus on the entire package (sibling DX, lack of growth for over a year, GI issues, etc).  Perhaps your GI will do the same?  Either way, what's the harm with stopping gluten to see if his symptoms lessen/disappear.

 

PS - my oldest also does those blank stares - almost like she's looking right through me.  I've mentioned it to a few people and they all look at me like I'm nuts.  You are the first person to know what I'm talking about!

[ArPlasma]

Thank you both for the replies.

We had our first gluten free dinner tonight( at least I hope so as I have not done a deep kitchen cleaning/ sorting out session yet). One of my husband's aunts sent us a gluten free care package with a bunch of her favorite products. It was very nice and very much welcome as I am a bit on the overwhelmed side of things.

I agree that blood test numbers and family history strongly suggest that we should start a gluten- free diet now. I am just a bit unsure on how to proceed right now, where to start, etc. I will be going through the link. ( Thanks! ).

My son also has some nervous( ?) ticks and what looks like spasms at times.

That would be interesting if his growth levels a bit, he's been consistently outside the growth chart, above the 99th percentile, taller than his 8 year old cousins. Which seemed to comfort his pediatrician about the improbability of Celiac disease( before blood tests).

Also for reference, the GI said they took 15 samples, which seems like a decent number.

Waiting is definitely not my forte.

[ArPlasma]

Our GI DX my oldest even with a negative biopsy and her blood work in the "positive, but not crazy high" category.  She was willing to look beyond the "golden standard" and focus on the entire package (sibling DX, lack of growth for over a year, GI issues, etc).  Perhaps your GI will do the same?  Either way, what's the harm with stopping gluten to see if his symptoms lessen/disappear.

 

PS - my oldest also does those blank stares - almost like she's looking right through me.  I've mentioned it to a few people and they all look at me like I'm nuts.  You are the first person to know what I'm talking about!

Thanks. The GI clearly said he would not give a Celiac diagnosis without damage, he is adamant about the 'golden standard'.

My son's teacher and a few family members have noticed these stares. Funny because that's something my husband and FIL do from time to time as they lose track of the conversation for a bit. They sometimes start a sentence then pause out of the blue for a few seconds. It can be quite annoying but has become somewhat of a family joke for them.

The first GI we saw in the practice mentioned these stares were not uncommon to him. It was the first time a doctor seemed to have an understanding of it or that I did not feel a bit crazy after explaining it and no explanation could be conjectured.

[GottaSki]

15 samples is very good...sticking to the "gold standand" of biopsy is outdated, but at least he took numerous samples...hopefully at least one will indicate celiac and allow this doctor to diagnose your son.  While I don't hope your son has measurable damage, I do hope you will not be left in diagnostic limbo.

 

Transitioning to gluten-free is not easy...read all you can and don't be hard on yourself during these early days...it simply takes time.

[ArPlasma]

Thanks for the encouragement. We are taking it one day at a time, trying not to think too much about the consequences/ meaning of a negative/ inconclusive biopsy. My husband and I have decided to keep our son on at least 6 months trial of the gluten-free diet even if the biopsy is negative. If positive, it will obviously be a lifetime commitment.

[nvsmom]

Thanks for the encouragement. We are taking it one day at a time, trying not to think too much about the consequences/ meaning of a negative/ inconclusive biopsy. My husband and I have decided to keep our son on at least 6 months trial of the gluten-free diet even if the biopsy is negative. If positive, it will obviously be a lifetime commitment.

 

With positive tTG  tests and a positive EMA titre, it is basically a sure thing that he has celiac disease. Even if the doctors find no damage at all (which can happen), I think your son should be on the gluten-free diet for life.  I also had the same positive tests but my titre was not as high, his is really very high for a child, and my doctor and  I were both satisfied that it was celiac after considering my symptoms.

 

Take a look at page 12 of this report by the World Gastroenterolgy Organisation:

Open Original Shared Link

 

The chart shows the sensitivity of the tests your son had done which expresses what percentage of all positive tests are caused by celiac disease. The sensitivity of the tTG IgA is 91-99%; so he has a 1-9% chance that it isn't celiac causing his positive test.  The tTG IgG has a similar sensitivity. The EMA IgA has a sensitivity of 98-100%! If you consider all those tests together, it's pretty much a sure thing that he has celiac disease, and it's wonderful you caught it at such a young age.

 

Don't let him keep eating gluten.  If the doctors want to retest him, do it after he has been gluten-free for 6 months or a year and they can observe how his antibody levels have fallen. I would bet money that his EMA IgA (which only shows up in advanced disease) will have fallen to normal, and that his tTG levels will have come down a great deal.... That doctor who wants him to keep eating gluten is just... cruel! Why would he do that to a child? 

 

As for his height, celiac disease can affect growth hormones which can affect growth in children, but it is just one symptom like migraines and arthritis. No celiac patient has all symptoms.  With hindsight I know that I had celiac disease since infancy, but I too was a very tall child, 95th - 100th percentile. I was a slim to skinny kid but I still broke 100lbs by grade 4 due to my height, and in grade 6 I was 130 lbs and 5'8" - tallest in my school... but I still had a tummy ache after most meals.

 

I hope you will keep him gluten-free for life. So many health problems (like thyroiditis, diabetes, cancers) crop up in celiacs who keep eating gluten.    Good luck with testing the rest of the family, and with helping your dh switch to a gluten-free diet too.

[ArPlasma]

Thank you for the link to the report nvsmom. I'vebeen reading through it( in addition to your reference on page 12 for the differ serologic tests accuracy) and I will definitely keep it handy for future reference.

We have started our son on the gluten- free diet and sorted out/ cleaned out things in the kitchen. I think for now, it might be easier to keep everything at home gluten free.

Without a diagnostic, I am not sure how cooperative his school will be and things like school parties might be tricky to navigate.

[nvsmom]

Understandable. I have three boys who are gluten-free but don't have a diagnosis. It's tricky to keep them healthy when around others who don't understand the disease... Actually it's tricky to keep them gluten-free whether other people know about celiac disease or not. It is all on us, but it will get smoother and easier. Hang in there.

 

Someone else posted this link about diagnosing kids which I thought was interesting too:

Open Original Shared Link

[ArPlasma]

Thanks for the article!

[Cara in Boston]

We go to Boston Children's Hospital Celiac Center and I feel very fortunate we have access to such doctors.  When we were first going through testing with my son at age 5 his results were confusing.  Our first doctor would not order further tests because he had no symptoms, was tall, and only had positive blood tests on the IgG panels.  By that time, I had been tested and found to be positive too.  This was just too much of a coincidence for me, so we took him to a specialist.  They did a biopsy on him and he was found to be VERY positive (rarely is there visible damage, by the way . . .)

 

My biopsy was negative, but going gluten free resolved the many symptoms I had - I had no idea it was food related, I just thought I was getting old.

 

Joe's doctor was going to diagnose him and start the diet even if his biopsy was negative, based on his blood tests and MY blood tests.  She explained that a biopsy could miss the damage, there could be no damage yet (why wait?), or lots of other reasons.  A negative biopsy only means damage was not found . . . NOT that you do not have Celiac Disease.  On the other hand, finding damage does indeed confirm a diagnosis.

 

She also explained that people should consider the gluten-free diet as the "final test" . . . go gluten free and see if it helps.  If it does, you have more information to work with.  In my case, all my GI symptoms went away.  I also had lots of neurological symptoms (dizzy spells, brain fog, numb fingers and toes, etc.) and those cleared up as well.  I have read that it is not uncommon for people with neurological symptoms of Celiac to have little or no intestinal damage.  Your son's zoning out sound like he might be having some of these issues . . .

 

Finally, you do not need a doctor's permission to go gluten free.  The diet is perfectly healthy (providing you are eating healthy foods) and for most, makes them eat even healthier.  It does not make a lot of sense to keep eating gluten until there is measurable damage . . . better to stop while there is no damage but certainly a reaction going on.

[ArPlasma]

Cara I wish more doctors would look deeper into it. I asked for further testing for my younger son and his pediatrician was not keen on it at all. We have started the gluten-free diet with our older son since we're passed biopsy stage. We plan on remaining on it no matter what the results of the biopsy are. The GI said he sticks by 'gold standard' so no obvious damage, in spite of high numbers and strong family history,means no diagnostic in his book.

Even if we don't get the diagnosis, we will be sticking to gluten-free.

Also we retested my DD this morning since they made a mistake and did not prescribe the right test( not Celiac panel test).

We are 6 days gluten-free so far.

[ArPlasma]

Our appointment was cancelled by GI's office at last minute(1 h 30 before!) and rescheduled for next week. so still no results. However the doctor asked that we see the nutritionist right after seeing him. This is taking for- ever.

Anyway, DS is still doing great off gluten, no tummy ache in 3 weeks now! Woohoo! And he is asking what has gluten. He told me that they were passing cookies as a treat today at school but they had gluten in it so he had his special ones. He did not seem too upset about it.

We are all learning.

[Cara in Boston]

Sorry you are still waiting.  From start to finish, our testing took almost 4 months.  Since Joe's #1 symptom was ATROCIOUS behavior, it was a very long 4 months.

 

I feel fortunate that he was diagnosed as a child.  He seems to have a much better attitude about food in general.  He would rather feel good than risk getting sick by trying a questionable (but delicious looking) treat.  Once I was stressing about food being served at a birthday party he was attending (I didn't want him to feel bad eating his "different" pizza) and he said, "mom, it's only food.  I'm not going to the party for the food."  Smart boy.  (I wish I had the same relationship with food.)

 

Always trust your instincts.  If you can, try to find a doctor that will look at all the (obvious) evidence.  You may find that down the road you need a doctor's note to ensure compliance at schools and camps.  Even if the note says "gluten intolerance" . . . that will be enough.

[ArPlasma]

Thanks Cara! Yes, My main concern at this point is the enforcement of his diet at school and wish we can get an 'official' statement of gluten intolerance to make things easier at school and everywhere else.

I had to chuckle at your mention of m& ms preference vs. cupcake because I had this discussion today with DS. There was a party at school( again?!) and everyone else had a cupcake but him. He told me he did not mind at all, m& ms are his favorite. I guess he never liked cupcakes, always ate the frosting only saying cakes and cupcakes were not good for him, they made him feel funny.