Skip Biopsy?

[mom2easton&eli]

My son just turned 2. At his 2 year checkup it was noted that his height has decreased by 30% on the charts and he has had loose stools for the past few months. The doc suggested we do a blood and stool test. They tested for Celiac and the doc was very vague with info on the subject and said that one part of the test came back positive, and one part of the test came back negative. I had never heard of Celiac and asked the doc how to spell it. He reluctantly told me and then said that once parents get online and find more info on the subject, they eliminate wheat from the diet, thus causing a negative biopsy. He said the hospital will be calling me this week to set up an appointment and that they are scheduling in to December at this point. After doing some online research I do not feel right about continuing to give my son things that may be poisoning his little body. I do not feel I can sit around waiting for a phone call to set up an appointment and then sitting around again waiting until December to do the biopsy. I saw that some people on here had mentioned to skip the biopsy and just try the diet. Well, now I have a ton of questions. If part of the blood test was positive, then how likely is it that he has it? Is the biopsy test for other allergies as well as the gluten? Do I need to get the test in order for doctors to track him successfully? Do I stop giving him milk products in the beginning assuming I decide to just go ahead with the diet? The reason I am so concerned is because I do believe my son may be having some behavioral problems due to this and I really want him to start growing again. Will his growth be stunted forever, or will he go back up to the 70 percentile where he always was? Sorry so many questions.

[fullofhope]

I also have a 2 yr old who at 18 mo had signs of celiac. I actually opted not to do any test on him except the diet. Within a few weeks he was like a whole dif child- no more hyperactivity, no more 3 hr tantrums, his rashes went away, his stools became more normal, he bacame less obsessive about doors being shut and schedules staying the same. Like night and day. Also within 4 mo he was growing again. That was the only test I needed. Nowhere in his records does it say celiac, but that's okay with me. The doc still tracks his height and wt and all that, and I figure that's all he needs to do. About the dairy- I"d do gluten free first, it's not as easy as it sounds! and see what changes, then eliminate dairy. We'd already been avoiding dairy, so our next step after gluten was soy, and that has made things even better. Best wishes!

[chasesparents]

I don't know how to answer your question about the blood test, my doctor told me that my son's tests were positive for celiac disease. We actually had the biopsy done first, which showed that his small intestines where full of ulcers. If I could do it again, I would have had the blood test done first and put him on the diet second, if the diet showed good results, I would have skipped the biopsy all together. But I was clueless at the time.

After being on the diet for a week, my 18 month old son showed a massive improvement in his health and his attitude, he was normal again. At 18 months he was in a 10 percentile for height and weight and now at 3 years old, he is 85 percentile. If your son indeed has celiac disease, he will not be stunted forever. You will see a MAJOR improvement within a few weeks, even a few days (my son was not walking yet at 18 months, on his 4th day of being gluten free he was walking !!!!!!) So give the gluten free diet a week or 2 and see how much he changes, if he changes alot and becomes normal again. Then you know your answer.

[mom2easton&eli]

Okay, thank you both sooo much. I have already started the diet! He is eating rice as we speak. This will be so hard. He is not enjoying it much, but I think he will gut hungry enough. I have to hide all my birthday cake so he will not be asking for it. It looks like I will be shopping at the health food store tonight. Thanks again.

[chrissy]

depending on what tests the doctor ran, your son may or may not have celiac. if i were you, i would stick to your doctors advice until you are a little more certain about what you are doing. if, for example, your doctor ran an anti-gliadin test and a TTg test and the TTg was negative and the anti-gliadin was positive, then your son could have something other than celiac disease, as there are other conditions that can raise those levels. if the TTg was positive, it would be more likely for your son to have celiac. if your doctor did not run a total IgA serum test, also, then there is the possibility that he could be IgA deficient, which would mean that the normal celiac tests that are run would be useless without further, more specialized testing.

since your son is only 2, the celiac tests are not going to be as accurate. an endoscopy with biopsies can also show eosinophils, which are "allergic" cells, which would indicate your son has food allergies which could be causing his growth and gi problems.

alot of people on here have an awful lot of good advice, but remember that their advice is based on their own experiences. so far, your doctor has not given you any "bad" advice. i can understand his caution in not wanting you to do something that could possibly lead to further delaying of answers for why your son seems to be having some problems.

[mom2easton&eli]

Thank you. I will take everyone's advice into consideration. My husband and I were thinking we might try a combination. I wonder if we could go gluten free for a few weeks and see if he improves and then just feed him a small amount of gluten after that for the biopsy? I do not know a thing about this so that may be a crazy idea.

[azmom3]

Thank you. I will take everyone's advice into consideration. My husband and I were thinking we might try a combination. I wonder if we could go gluten free for a few weeks and see if he improves and then just feed him a small amount of gluten after that for the biopsy? I do not know a thing about this so that may be a crazy idea.

I'm not an expert on this, but I have heard over and over again on this site that you need to have quite a bit of gluten every day for quite some time in order for blood tests or biopsies to show celiac disease. If you eliminate it, the tests will come back negative and you will never know. If changes from the diet are good enough for you, than that's fine, but I would not have a biopsy done if he's not eating gluten...that would not help you at all. Good luck! You'll find so much info here...keep asking questions and reading other posts and you'll be more knowledgeable than most doctors in no time.

[gfp]

My son just turned 2. At his 2 year checkup it was noted that his height has decreased by 30% on the charts and he has had loose stools for the past few months. The doc suggested we do a blood and stool test. They tested for Celiac and the doc was very vague with info on the subject and said that one part of the test came back positive, and one part of the test came back negative. I had never heard of Celiac and asked the doc how to spell it. He reluctantly told me and then said that once parents get online and find more info on the subject, they eliminate wheat from the diet, thus causing a negative biopsy. He said the hospital will be calling me this week to set up an appointment and that they are scheduling in to December at this point. After doing some online research I do not feel right about continuing to give my son things that may be poisoning his little body. I do not feel I can sit around waiting for a phone call to set up an appointment and then sitting around again waiting until December to do the biopsy.

I agree.... you need the RESULTS of the blood test and you need to make sure you get a full panel

Open Original Shared Link

The WHOLE LOT are needed, specially total serum IgA especially in a 2 yr old since the tests are less likely to be positive in a 2 yr old (you can read here and find out why)

You can get the blood taken NOW.... (or tomorrow) ...

I saw that some people on here had mentioned to skip the biopsy and just try the diet. Well, now I have a ton of questions. If part of the blood test was positive, then how likely is it that he has it?

Well... he is reacting and perhaps the biopsy would be negative or only show mild damage BUT let me answer in parts...

Is the biopsy test for other allergies as well as the gluten?

NO ..... in adults it can also screen for long term damage from many years of gluten and nasty consequences BUT these are pretty much pointless in a 2 yr old! (I don't wanna start listing them because they really are irrelevant in a 2 yr old and quite frightening)

Do I need to get the test in order for doctors to track him successfully?

NO.... and if they want to track him as he gets older then it should be by blood tests not invasive surgery.

Do I stop giving him milk products in the beginning assuming I decide to just go ahead with the diet?

VERY VERY good question and one I cannot answer. Personally (as a male with no kids) I would say you should continue with milk... he is still in a lactase producing phase and the continued lactase production is partly dependent upon him using it. HOWEVER.... you can discontinue gluten AND keep monitoring for antibodies against casein ..... and the milk will help his growth because that's the way 2 yr olds are designed.... but he might be intolerant to it.

The reason I am so concerned is because I do believe my son may be having some behavioral problems due to this and I really want him to start growing again. Will his growth be stunted forever, or will he go back up to the 70 percentile where he always was? Sorry so many questions.

Never too many questions.... BUT .. those questions are completely seperate.

Behavioural problems and growth percentile.

Behavioural problems are worth addressing... growth percentile is pretty much not IMHO as a 5'10 (1/2) male.

Growth percentile is based on how kids grow on average and on average the average american has weight issues. I blame a large amount of your nations health on parents wanting to see their kids in the top 50 percentile YET the majority of these kids then grow up and have weight issues. The top 50% is not a competition ... but it ends up being like this....

This is just MY OPINION.... but the facts are that the percentiles are averages and that obesity is a (excuse the pun) growing problem. I'm not saying this is the sole cause of obesity I am saying basiing your 'normal' growth on kids who then turn out to be obese is not clever!

Anyway... the bottom line is kids naturally develop at different rates.... whether he ends up 5'4" or 6'4" is irrelevant unless you want him to be a pro-basketball player. So I would say relax.. take care of the real issues not artifical ones created by percentiles.

Having said all that.. he probably will catch up

[mom2easton&eli]

Wow thank you very much. You are all so informative. Thank goodness for the internet.

[chrissy]

having a biopsy WILL give you other information, not just info about celiac. the eosinophil cells i mentioned before will likely be there if your child has food allergies. a biopsy will tell you if your child has undiagnosed gerd, (which can effect growth and behavior) or if your child has eosinophilic esophagitits----food allergies can also affect growth and behavior.

ask your doctor's office for copies of your son's bloodwork, and if the most up-to-date tests were not run, have them run them.

our ped gi usually just runs a total IgA serum and a TTg anti-body test. some doctors run some of the older tests also.

[Michi8]

Growth percentile is based on how kids grow on average and on average the average american has weight issues. I blame a large amount of your nations health on parents wanting to see their kids in the top 50 percentile YET the majority of these kids then grow up and have weight issues. The top 50% is not a competition ... but it ends up being like this....

This is just MY OPINION.... but the facts are that the percentiles are averages and that obesity is a (excuse the pun) growing problem. I'm not saying this is the sole cause of obesity I am saying basiing your 'normal' growth on kids who then turn out to be obese is not clever!

Anyway... the bottom line is kids naturally develop at different rates.... whether he ends up 5'4" or 6'4" is irrelevant unless you want him to be a pro-basketball player. So I would say relax.. take care of the real issues not artifical ones created by percentiles.

Having said all that.. he probably will catch up

Just to clarify, the growth charts in North America are based on formula fed infants. You cannot accurately compare a breastfed infant to those charts, as the typical growth rate is very different...and studies have shown that a breastfed infant is less likely to be an overweight child. Also, height and weight are monitored on different charts...a child can be in one percentile for weight and a different one for height.

However, the point of the growth charts is not to have children compete to be in the top percentile, it is to ensure that whatever curve a child starts on, that they remain fairly consistant. When a child who is in the 50th percentile dramatically shifts to a different curve in growth it's a warning sign that something may be amiss.

Michelle

who has a child in the 90-95th percentile since birth, one consistently in the 50th, and one in the 70th

[chrissy]

as an added note of interest-----it is supposed to be of concern when a child changes across 2 major lines of the growth chart-----up or down.

[mom2easton&eli]

I agree that percentiles are not for competition. The main reason for my concern with the height is because that was our first red flag that something is wrong. My husband is 6'3" tall and to have a son in the 40 percentile who has always been in the 70's, is a major concern to me. Also, my son has a younger bro who is 6 months now and is wearing pants that my 2 year old had on the day my youngest was born. He is in the 70th something percentile for his height. Also to address the obesity issue, we are far from obese. I am 27 and after 2 kids still wear a size 4-6, my husband is almost underweight. He is 145. I am trying to talk him in to getting tested for Celiac because he is having some kidney pains and has had his urine checked and there was nothing wrong with his kidneys. He has also had learning issues in his childhood. However, those issues have helped him to think "outside the box", making him pretty successful at being self employed without a degree.

Oh and I also want to clarify, I am very, very grateful for my doctor. I mean no disrespect to him whatsoever as I am seeking possible alternatives to the advice he has given me. I am so glad he had my son tested and has brought this disease to my attention. Without him referring us to be tested, my son may have lived a life of being sick and not thriving. I just want to do what is best for my son and what my instincts tell me to do (insticts and other's input, that is).

[mom2easton&eli]

Hi just 2 more things real quick; my son, his name is Easton by the way, has always been in the 40th percentile for weight and at his check up remained in the 40th something percentile that is why I have not brought up weight as concern, just the height.

Also, what do you think about entrolab or whatever that thing is I have been reading about?

Thanks.

[chrissy]

alot of people swear by enterolab and believe wholly in it. i don't believe there are any "peer reviewed" journals that address dr. fine's work. (somebody correct me if i am wrong) i personally would not use them myself as i think the amount of people they diagnose with gluten problems is way too high to be accurate. my family is involved in a celiac study at this time being done through the university of california, urvine. they are studying what genes are involved in celiac disease----they know there are more genes involved than the DQ2 and the DQ8 genes. it seems fishy to me that enterolab seems to be the only place in the world that "knows" what other genes are involved and that being the only ones with this "knowledge", they have chosen to patent their info (or technique) to make money. i could be totally off base with my feelings about enterolab-------i'm sure someone else will post some positive info about them.

[mom2easton&eli]

Oh that sounds interesting. I am glad research is being done. Yeah I can understand where you are coming from on Enterolab. This is all so confusing.

[Guest nini]

IF you are going to go through with the biopsy DO NOT start the gluten free diet yet. It will skew any chance of a positive dx... That being said I can only tell you our experience. I was positively dx'ed with Celiac via blood work (full celiac panel) and positive dietary response. My dr. did not have me do the biopsy because ALL of my levels on the Celiac panel were very elevated.

My daughter was three when I was dx'ed and had a plethora of health issues and was failure to thrive, anemic and having behavioral issues as well. Her blood test was negative (meaning only Not Positive) and we did not do the biopsy on her either. She was dx'ed with Gluten Intolerance via positive dietary response and genetic predisposition (me).

At this young age if you want to pursue the biopsy, yes it will be hard to continue to feed him things you feel are poisoning him, but kids do heal much faster than adults. My personal feeling is to skip the biopsy and just try the diet. You do not need a dr.s permission to go gluten-free and you do not need a dx of Celiac to continue to have a Dr. monitor your child's health, and you do not need to be consuming gluten to explore OTHER possible health issues. Eliminating gluten from the diet before completing testing for CELIAC will only skew the results looking for celiac, it won't skew results looking for anything else. And if you have a positive dietary response, then you have your answer. It's really not as complicated as it's made out to be. Continue to research and make the most educated decision for your family that you can make. IF you would prefer testing your husband and yourself for Celiac via the blood tests and biopsy then if one or both of you comes up positive for it, or the genes for it, then you would be safely able to assume that is your sons issue as well.

[mom2easton&eli]

The hospital called Friday and Easton can go in this Tuesday for a biopsy. Yeah! So now that we do not have to wait like I was told, I am just going for the biopsy, that way I will know for sure. Thanks for all the advice! I am sure I will be back with more questions because I think he has it.

[Matilda]

..

[Matilda]

..