Blood Work And Biopsy

[lin7604]

my son was having tummy aches last dec and it was daily for about 2 weeks. He would also get a headache with these. His dr tested him for celiacs and it came back positive. Since dec he has had no issues of tummy aches at all until the beginning of aug. he has been fine since. He is now scheduled to go for his biopsy on sept 7th. is it true that if the blood work comes back positive that it's pretty much a guarrentee that the biopsy will show celiacs? he is a super picky child and i am dreading this diet change! he has never had a issue with growth, always on top of the charts, no other side effects at all, so i found this strange that he has a possibility of this when he gets maybe a symptom 1 or 2 a year?

[kb27]

my son was having tummy aches last dec and it was daily for about 2 weeks. He would also get a headache with these. His dr tested him for celiacs and it came back positive. Since dec he has had no issues of tummy aches at all until the beginning of aug. he has been fine since. He is now scheduled to go for his biopsy on sept 7th. is it true that if the blood work comes back positive that it's pretty much a guarrentee that the biopsy will show celiacs? he is a super picky child and i am dreading this diet change! he has never had a issue with growth, always on top of the charts, no other side effects at all, so i found this strange that he has a possibility of this when he gets maybe a symptom 1 or 2 a year?

A positive blood test for celiac usually means he has it. From what I hear here, the biopsy is more hit-or-miss (more false negatives). I would go gluten-free after the biopsy no matter what the result and see if his bloodwork goes back to normal on a gluten-free diet.

My son had no outward symptoms at all. We only found out he had celiac because he had low iron levels and they wouldn't improve, so a doc ran the celiac panel on him and it came back positive. Even though your son may not have GI problems, if he has celiac and he eats gluten, then he is doing internal damage and putting himself at risk for more problems later on.

It's not easy changing to gluten-free at first, but it does get easier with time. And there is a lot of "normal" delicious food out there that is also gluten-free.

(And it's ok to experience dread, frustration, anger, sadness, etc. - going gluten-free is a big deal. Luckily there are lots of people here who can help you through it!)

[GottaSki]

Welcome!

Your son's positive blood work already indicates he has Celiac Disease. You should request a copy of the blood work as some doctors order only one celiac antibody test, when the whole celiac blood panel should be used.

While the endoscopic biopsy has been the "gold standard" in diagnosing Celiac for many years, this is no longer true. Many doctors will not diagnose without endoscopy and it is wise to document the extent of his current intestinal damage whether or not the biopsy is positive. Your son's biopsy may or may not be positive. The intestine is quite long and damage can be spotty, especially in children. Before the procedure ask the doctor how many biopsies they take for Celiac Disease - many doctors do not take enough. You want at least 6 samples.

It is fortunate that your son does not have symptoms on a daily basis, but if he continues to eat gluten more damage will occur and he will become ill more often. There are some people with Celiac Disease that never have digestive symptoms, there are some with daily digestive symptoms - there is no set standard for what symptoms and test results your son should have. There are numerous symptoms besides digestive problems that Celiac causes - take some time to read up on all the symptoms.

There are ways to replace all of the favorite foods of picky children with gluten-free alternatives. It is a tough transition, but does get much easier with time. This forum is a great resource to learn about Celiac Disease as well as ask any/all questions - it also happens to be the best place to get support during the transition to gluten-free -- young or old, we all had to go thru it too.

Good luck to you and your son

[Mom-of-Two]

I may be confused but why did they wait between Dec and now, with a positive blood test, to do a biopsy and begin the gluten free diet?

Which tests did he have done, that were positive? My 8 year old had positive labs, and went on to have a NORMAL biopsy- but has been gluten free about 6 weeks or so. Some drs still believe the "gold standard" of the biopsy but I believe with diagnosing children, things are really going to change. Children are little, they don't have long enough to get the damage one would expect to see with celiac, and it can be very patchy- they could take one sample which is totally healthy, and 2 inches down a spot could be damaged that they miss, and therefore call the biopsy negative/normal. We were surprised that my daughter's biopsy was normal because her labs (tTG) were high, she is vitamin D deficient, and she is positive on the endomysial antibody (I also have celiac so clearly the genetics is already present) My celiac dr told me that being positive on the endomysial antibody normally coorelates to gut damage, in other words she fully believes my daughter has the damage on the inside, whether they saw it or not.

He has been consuming normal amounts of gluten? Good luck with the procedure, I hope you get some answers there but if not, it's time to start the gluten free diet for your son either way!

Come back for some advice on how to get started!

[nvsmom]

I agree with the others, a bpositive blood test means he is celiac. I recieved a positive blood test and the doctors didn't even bother with the endoscopy. I have celiac without a doubt.

I've had it my entire life too. I remember some big stomach aches as a kid, but not everyday. I wasn't hugely symptomatic but I have got more symptoms as I aged.

... I also developed more autoimmune diseases, and I believe it could be in part because my celiac was untreated for decades. I ended up with a near fatal clotting problem and now my thyroid is failing. If you help him stay gluten-free, that could help him avoid complications due to celiac and perhaps prevent other problems from appearing.

Hugs and best wishes.

[lin7604]

thanks everyone. I have heard from many that there is a sensitivity, intolerance and full blown celiacs and they are all different. I am not sure what exact testing they did on him but she tested for many things and she said he came back positive and needed to be tested further, to see if it was a sensitivity, intolerance or full blown celiacs. The reason why he waited so long wa sb/c they messed up his appt and it got lost! yup! we had a shortage of dr's in dec and they said it may take a bit to get him in, so i figured, ok, i will hear soon... well low and be hold he has no complaints at all after that and i totally forgot until aug came and he started to have tummy aches again. then i went in for a appt and she put a rush on it. We weren't sure if it was a anxiety thing too, as at that time he was having anxiety issues and once that went away he was fine, so it was a coincidence of timing... then again in aug, same thing... so the dr wasn't sure if it's a nervous thing causing tummy aches, etc... she said they can have false poitives in blood work as well or the numbers could relate to a different problem, not just celiacs. so she urged me to get the biopsy to know forsure...

once we get the biopsy done of fri they said it can take 3-4 weeks till we get results. then if it's positive then they will set us up with a nutritionist appt. i am just so confused as the numbers could of ment something else, or it could be wrong or as i also have been told it could be a sensitivity, intolerance or full blown celias... so many options, not a clue to know where this is taking us.

[lin7604]

oh and i forgot to mention that they said they will take several samples during the biopsy. a few in the oesophagus, small intestine and stomach.

[eatmeat4good]

As far as I know, there are no false positive blood tests for Celiac. If he was negative, you would be looking at gluten sensitivity or intolerance, or possibly Celiac that did not show up in the blood tests, but the fact that his blood test was positive means he is Celiac.

Some Dr.'s no longer require the endoscopy to verify the bloodwork for diagnosis of Celiac, especially in children.

Anxiety and depression are consistent with Celiac disease.

[GottaSki]

I understand how frustrating and unclear the diagnosis process can be. Then comes learning to remove gluten which sounds overwhelming. IT IS worth it to improve your son's health and does get much easier with time.

There is no reason not to remove gluten immediately after the endoscopy. The treatment for Gluten Intolerance and Celiac Disease are identical - remove ALL gluten. Waiting a month or more to see a nutritionist is another month causing damage, not healing.

He has positive blood work with symptoms (digestive system and anxiety are both symptoms) - these should not be dismissed because he doesn't have symptoms every day. There are some people with Celiac Disease that have NO symptoms for many years, but still have significant damage.

Good luck on Friday

[lin7604]

well we had the biopsy and got the results almost a month later and yes it came back positive. mild but positive. we seen a nutritionist of friday and are now removing Gluten from his diet. She told us we will be re tested levels in march at our next appt with the surgeon to see if we are on the right track and his levels are getting lowered... so now we are trying to use up all the items we have and replace them with a gluten-free one... he seems to understand it and why but it's just hard as he's so super picky....

[nvsmom]

((HUGS))

I would recommend only using up a few of the favourite gluten items and tossing out (or giving away) the rest. Every time you feed him gluten you will be hurting him. Perhaps let him use up the last of the cookies or gold fish crackers, but bin the rest as soon as you can. It will make it much easier for you to cook if you have gluten-free supplies like soy sauce and mixes. Don't forget about cc. Items like sugar and baking powder might have been contaminated by a measuring cup with flour on it; I would advise you to go through almost everything and check it for gluten or cc over the next week.

Stock up on some gluten-free treats too. It makes the transition easier if there are a visible treats around so one doesn't feel deprived.

Best wishes to you and your son.

[mushroom]

I agree with nvsmom. Do one shelf of the pantry at a time - take out everything and check for gluten and only put back what is gluten free. Any unopened packages or cans, a food bank would thank you for them. I know it sounds wasteful to toss things, but the alternative is causing further damage to your son. Only keep his very favorite things and ration them out with longer and longer in between so he gets used to not having them.