Am I A Bad Mom For Not Letting Them Biopsy My 16 Month Old?

[Stacielovas]

Hello,

My sweet angel has been having a heck of a time gaining weight since he was about 9 months old. Although he has gained weight, it has been very slow. He is 16 1/2 months and only weights 18lbs. He some blood tests at 1 year (nothing for celiac, unfortunately) and our ped thought maybe it was low growth hormone b/c of the tests. Since he was about 13 months old, we have been going to an endocrinologist, a nutritionist, and a pediatric GI. For the last 3 months or so, they all been advising me to try to get extra fat and calories into his diet. Although his height and head circumference are in the 10th percentile, his weight remains way below the chart. So, the GI suspects celiac disease. He wants to do a scope biopsy to test for it. I am just so against putting my baby through that at such a young age. Instead, I would like start a gluten free diet to see if he starts to gain weight. He has no other celiac symptoms other than slow weight gain.

If we start him on a gluten free diet, and he does indeed have celiac disease, how long will it take until we see changes in his weight?

Am I being a bad mom by not getting the scope done?

I would appreciate any input or experiences from any other parents.

[jmjsmomma]

The fact that you are so concerned about your child shows that you are not a bad mother. Can the endocrinologist do a Celiac panel? My 5 yo son fell off the growth charts at his 3 year c/u and we were also under the care of an endocrinologist. When he failed to grow during a six month period, she ordered a Celiac Panel. It came back very clearly positive for Celiac. We did decide to do the scope as I wanted to understand the extent of the damage done to the intestines. It was painless and he was right as rain by the time we got home (only 2 1/2 hours after we got there). It is a very personal decision and only you can decide what is best for your baby and your family. I would recommend getting the panel done before you go on a gluten-free diet though, just to confirm the diagnosis. He has to be on gluten for the test to be effective.

I hope you get some answers soon and that your baby starts to thrive!

[dilettantesteph]

I am so overprotective and he was so scared of the needle that I didn't even do the blood test. And he was 10. Fortunately in our case the response to diet was conclusive. If the response isn't so conclusive it might be nice to have some test results. It took us about half a year to get the diet figured out enough for weight gain. But then he went from skin and bones to fat.

[Stacielovas]

Thank you both for your input and stories. I could not sleep last night b/c I was going back and forth with what to do. I am leaning towards getting blood tests done, just to see what the tests say. Maybe they will show signs of celiac disease. I realize that at his age, there may be a false negative. I guess that I am thinking that the blood tests are worth a shot and they are much less invasive.

[mommida]

A few of our younger Celiacs here have found out they had other issues with Celiac.

My daughter was diagnosed with Eosinophilic Esophagitis.

It's been some time but a younger guy had surgery to his entire digestive system. If I remember right, his organs were in reverse position.

Two examples off the top of my head. These are in no way proven to have any connection to Celiac. There are other disorders that are proven to be related to Celiac. i.e. H. Ploryi, yeast infection/overgrowth.

If you decide to get the endoscopy, you can get a baseline of the damage. You can rule out other possible problems. Then you can concentrate on the gluten free diet, while monitering for other food intolerances. This is the tricky part of starting the gluten free diet. IMO Keep a food journal.

For my daughter's last endoscope, they gave her gas. She was out before they put an I.V. in. She was fine after the procedure, just a little groggy. (The Ped. Gastro. was very concerned about her with so much damage to her esophagas before the endoscopy had been preformed, he gave us emergency phone numbers and specific orders of call if... list.)

It is a very hard decision. I didn't have the endoscopy done when my daughter was 17 months. She reacted great to the gluten free diet. Then just before her sixth birthday she vomitted blood when she had a stomach virus (4 days in the hospital with an I.V.). Waiting to get in with her Ped. Gastro. She was vomitting daily and ended up needing an I.V. at the hospital. So when she was 6, we just could not get an endoscopy fast enough.

[MarsupialMama]

Hi,

We had the same problem - weight loss staring at 9 months, and 18 pounds at 20 months. We didn't do any testing before putting her on the gluten free diet because I didn't even know much about it when I took her off gluten. And I didn't want to wait one more day before working on a possible solution. We could see major changes in 3 weeks that I never bothered with testing after the results in diet alone were so conclusive. She has not gained too much weight, but she has been glutened several times in the last 6 months and every time it has set her back for a whole month! She will shrivel up and lose all the fat and weight she gained in between glutening. It was very disheartening. However, just recently she is going "up" again and getting a layer of fat back on her body and her face is filling out again. She is not tipping the scales too much, but I can see improvements in so many other things, that I believe if she is getting healthy, eventually she will pack the weight on. We are dairy free so we don't have a high fatty diet that might pack weight on her like it would other children. Some children, I have heard, gain several pounds in a month. Others take up to a year before they see any change in weight. Weight can depend on bowel movements, water intake, activity level (sweating on a hot day can make you lose a pound or two!), etc. so weight (even for a little one) can fluctuate several times during the day! I would have done blood testing maybe, but I'm just not into biopsies unless absolutely neccessary. If I were you, if it is not a life-and-death emergency, give the gluten-free diet a try for at least a month. Also, something that REALLY helped our daughter was fresh papaya. I have heard it digests wheat gluten. When we gave it to my daugheter (even in spite of cross contamination issues), she had very positive results in healing, gaining the fat layer back, and filling out.

[Ahorsesoul]

A good mom would want to try the least invasive method first. If a gluten free diet works why do the other testing that could do damage to the intestines?

Gluten and lactose are two things that could cause low wt gain. My baby sitter's dd turned out to be lactose intolerant and failed to gain wt. When she was two she finally saw a doctor who suggest trying a diet instead of horrible tests.

[Kibbie]

Hello,

My sweet angel has been having a heck of a time gaining weight since he was about 9 months old. Although he has gained weight, it has been very slow. He is 16 1/2 months and only weights 18lbs. He some blood tests at 1 year (nothing for celiac, unfortunately) and our ped thought maybe it was low growth hormone b/c of the tests. Since he was about 13 months old, we have been going to an endocrinologist, a nutritionist, and a pediatric GI. For the last 3 months or so, they all been advising me to try to get extra fat and calories into his diet. Although his height and head circumference are in the 10th percentile, his weight remains way below the chart. So, the GI suspects celiac disease. He wants to do a scope biopsy to test for it. I am just so against putting my baby through that at such a young age. Instead, I would like start a gluten free diet to see if he starts to gain weight. He has no other celiac symptoms other than slow weight gain.

If we start him on a gluten free diet, and he does indeed have celiac disease, how long will it take until we see changes in his weight?

Am I being a bad mom by not getting the scope done?

I would appreciate any input or experiences from any other parents.

If I had to do it all over agin I never would have let them do the biopsy on my 18 month old. No, you aren't a bad mom... and your gut feeling is ALWAYS right !

[Fiddle-Faddle]

Suppose the shoe were on the other foot.

Suppose the doctor biopsies a 16-month-old, and the findings are negative (false negatives are common in the very young, though false positives are extremely rare). Suppose after a few years, and MANY more, and serious health problems, the diagnosis finally does come back positive. Forget the idea of a bad mom--was the doctor a bad doctor for not trying the least invasive AND most reliable diagnostic method (celiac-specific blood work plus dietary response) first?

Or this scenario: suppose the doctor biopsies the 16-month-old, and the findings are positive, but the doctor inadvertently punctures the intestines, or the child has a severe reaction to the sedation (the most common and most serious risk). Again--was the doctor a bad doctor for not trying the least invasive and most reliable diagnostic method first?

If there is something else going on, it will continue in spite of a gluten-free diet, and further testing can always be done then. In the meantime, I would have second thoughts of doing an invasive procedure on an unhealthy child when a far easier (albeit less profitable) diagnostic method is available.

I can't help wondering--if GI's were paid exactly the same whether they diagnosed by scope or by blood-work/dietary response, would their protocol change?

[Fiddle-Faddle]

I also wanted to add--my oldest was very underweight as an infant. If I knew then what I know now, I would never have let them give him so many vaccines (26 by 18 months!!!). I would have done a very few of them, ONE AT A TIME, and turned down a lot of them altogether.

They don't vary the dosage of vaccine by weight of the child. My 4 1/2 pounder got the same dosages as the baby twice his weight. And underweight babies seem to be at higher risk for adverse reactions to vaccines: Open Original Shared Link

www.nvic.org and www.safeminds.org are good places to start researching vaccines.

[Tallforagirl]

If I were you, if it is not a life-and-death emergency, give the gluten-free diet a try for at least a month.

Why? Why not at least get the blood tests?

If the gluten-free diet doesn't help, or is only of limited help, then what? You're still gonna have to get child tested to rule out celiac disease, and that means going back on gluten for three months.

[Fiddle-Faddle]

Why? Why not at least get the blood tests?

If the gluten-free diet doesn't help, or is only of limited help, then what? You're still gonna have to get child tested to rule out celiac disease, and that means going back on gluten for three months.

I agree. At least, a blood draw is minimally invasive, and, if you handle it right, not too traumatic for little ones. A 16-month-old can usually be distracted for at least a few seconds, and it's not nearly as painful as a shot. You'll want to make sure he's not dehydrated, as that can make it difficult for the phlebotomist to find a vein.

If you have not already gotten the celiac panel (five tests--IgG, IgA, EMA, and I'm too tired to remember the other two, but they're on www.celiac.com) for your little guy, please beg, insist or somehow convince the doctor to order those IMMEDIATELY, so you can try the gluten-free diet as soon as they've drawn the blood.

If your little guy has already been gluten-free or even gluten-lite, the blood test will be more likely to have a false negative, as all those tests are for antibodies, either against gluten or triggered by gluten. If he's not eating gluten, he won't be making the antibodies--and it takes at least a few months to build up enough damage to his system to make him produce antibodies in large enough amounts to be seen in the blood work.

[Country Girl]

My son had a biopsy at 22 months. It wasn't a big deal at all. I don't see the point of blood test in a child this young, b/c they are often wrong. I also didn't want to make life long altering decisions with out sold proof. I was in the room with him through out the procedure. I held his hand while they gave him gas, then they drew blood. The endoscopy only take 5 minutes and I am glad I got to see how his insides look and to have doctor walk me through what she saw and what happens with Celiacs. He woke up in about 15 minutes, the sleepyness went away fast and he was drinking juice in less than 30 minutes from when we entered the room. The endoscopy is not only for confirming celiac disease, but for ruling out other conditions you will never see with changing external factors like food.

Goodluck, I know how scary it is. I hope you little guy starts to gain soon

[jenndoss]

I am in the same boat. My 2 year old has been having trouble gaining weight and we see the Dr on Tuesday, (when I hope they will order the tests) and I am all for doing the blood work but I keep thinking what I will do if they want to do a biopsy. I don't know what the benefit would be. Is there some purpose for having it diagnosed that way? As opposed to blood work and dietary response? Thats a lot for a little one to go through. Please keep us updated on what you decide to do. It may help me make a decision if the time comes for us too. Good luck and I know you will do what is best for your little guy. You are definitely not a bad mom for questioning whether you want to put your baby through a biopsy.

[2Boyz]

I have a recently diagnosed 4 1/2 year old with celiac disease. The bomb was dropped on us from the endocinologist about a month ago. My son was also diagnosed with Type 1 diabetes 3 months ago. The pediatric endocrinologist said they have been recently testing their T1D patients for celiac disease and said his was positive. After sitting there shell-shocked for a good hour I decided to pick myself up and move on over to the computer where I researched and educated myself. I found out that running the TtG only is not suffcient in people with auto-immune disorders (Type 1 diabetes being one) and that a complete celiac panel needed to be run to move down the "right path" to a diagnosis. So I contacted my son's pediatrician and she agreed and ordered the panel. Unfortunately, the whole panel was positive. I have not yet contacted a pediatric gastroenterologist because I know the first thing they will want to do is scope him and biopsy him. That won't be happening!! My husband and I discussed it and came to this: What is the end result? What course of treatment will our son receive? Is that treatment the same dependent upon biopsy as a diagnosis or blood work as a diagnosis? Sure...the biopsy will tell you how much damage....and then what. There is no medication available. There is no surgery. There is no cure. Just the gluten free diet. That seems to be the final answer no matter what course you take leading up to the treatment. I will conatct a pediatric GI and make it well understood what I will and won't do and if and when I find a doctor on the same page as my family & I then we will go from there.

[kbitts]

A good mom would want to try the least invasive method first. If a gluten free diet works why do the other testing that could do damage to the intestines?

Gluten and lactose are two things that could cause low wt gain. My baby sitter's dd turned out to be lactose intolerant and failed to gain wt. When she was two she finally saw a doctor who suggest trying a diet instead of horrible tests.

Stace...I just had to reply to Ahorse on this. You are not a bad mom to utilize diagnostic tests - endoscopy, colonoscopy - if you feel it is necessary to help your child. My 14 mo grandson just underwent these procedures and he suffered no problem from having them. They did give us a baseline to his condition now, and although not definitive bringing forth a celiac diagnosis, the biopsies definitely told us some damage was occurring.

I'm definitely not an advocate in blindly taking dr's advice - we all have to do our research and then go with our gut feeling, armed with knowledge. In this case, it is what YOU determine is best for your situation - has NOTHING to do with being a GOOD or BAD mom. You are definitely a good mom or you wouldn't be concerned!

In our case, we are thankful we have determined there was damage being done, by something...and gluten is the suspected cause - gluten-free diet has begun!

[MammaG]

Hello,

My sweet angel has been having a heck of a time gaining weight since he was about 9 months old. Although he has gained weight, it has been very slow. He is 16 1/2 months and only weights 18lbs. He some blood tests at 1 year (nothing for celiac, unfortunately) and our ped thought maybe it was low growth hormone b/c of the tests. Since he was about 13 months old, we have been going to an endocrinologist, a nutritionist, and a pediatric GI. For the last 3 months or so, they all been advising me to try to get extra fat and calories into his diet. Although his height and head circumference are in the 10th percentile, his weight remains way below the chart. So, the GI suspects celiac disease. He wants to do a scope biopsy to test for it. I am just so against putting my baby through that at such a young age. Instead, I would like start a gluten free diet to see if he starts to gain weight. He has no other celiac symptoms other than slow weight gain.

If we start him on a gluten free diet, and he does indeed have celiac disease, how long will it take until we see changes in his weight?

Am I being a bad mom by not getting the scope done?

I would appreciate any input or experiences from any other parents.

You are absolutely not a bad mom. I have a lot to say about this but I'll try to be quick.

1- If memory serves me right the USA is the only country that has the biopsy as the golden standard to diagnose a person with Celiac. Other countries rely on diet changes and blood tests. The reason being that there are often false negatives. Yes the testing has improved over the years, but it still isn't the end-all. Instead of one biopsy they take anywhere from 5 to 8 samples during the one procedure. The problem is that that still won't catch the problem if that is not the area of the intestine that is affected. Intestines are something like 20 feet long and an endoscopy only goes to the top portion. Some people have the upper portion or the middle portion or the lower portion of the intestines destroyed. So the procedure is only for sure if it is positive for Celiac; if you get a negative you really still don't know. That is too invasive for not a sure thing for me or my child.

2- I had my son blood tested at 2 1/2 with inconclusive results: one specialist said he had it the other said he didn't. Bottom line, he was too young for the test. A person needs to be at least 3 for the EMA test to be useful. So all the blood test helps out with at that age is to find out if that person has the gene for it (which doesn't mean that they are gluten intolerant; just that they are able to develop the disease).

3- Other helpful tests: Test for anemia particularly when linked to B12 both need to be tested for this to be helpful again this only is helpful if you get a deficency result. And again just because this comes back clear doesn't mean anything but it is helpful if it shows a deficiency and at least all it requires is a blood draw. Another is a stool sample by entrolab (based in TX) - yes you send your poop via UPS to TX- it is the only lab in the country that does this. The downside is that this is not widely accepted because there hasn't been enough third party testing done. (You still have to be eating gluten for this one)

I just like to collect clues and see what shows up. The reason this is so hard to detect is because Celiac D looks different in each individual and because it is under diagnosed and under researched.

So what is one to do that will be convincing? Do some research, figure out what tests you are comfortable with and take the plunge and do the diet. It is a really tricky diet so give yourself two months on the diet before considering yourself on a gluten-free diet and then watch for changes in your child's health.

Some kids will go through a growth spurt after going gluten free but mine didn't. I think mainly because he has inherited all of our short genes. But other things cleared up. His anemia (linked to B12) disappeared, his BM's gained form, and his hair grew back. That is enough of a diagnoses for me (and for anyone who had changed his diapers prior). Plenty of people are Celiac and go gluten-free without a biopsy. Again choose what you are most comfortable with; just don't get forced into anything. Different doctors have different experience with celiac disease and understand it at different levels. Makes it confusing, but do research and trust your instincts you can figure this out. Good luck.

[Stacielovas]

Wow! I am feel so blessed to have so many views and comments on my post. Here is an update:

Our next appointment with the GI in in two weeks. I called the GI and told him that I would like to have the blood tests, just to see what they say. He said, "So, I want to put your son through an unnecessary procedure? If the blood tests come back negative, I'll suggest the endoscope and if they are positive, I will still suggest the endoscope." OK, why would he still need to do the endoscope if the tests are positive?????

I was also asking him details about the endoscope procedure. I asked, "Will they give my son some gas to relax him before the sedation?" His reply was, "Would you gas him for the blood draw? The IV and a blood draw are basically the same thing." I also asked if I would be able to stay with my son until he is sedated. The GI said that is up to the anesthesiologist and can't guarantee that.

I then said that I am considering trying out the gluten free diet to see how my son's growth reacts to it. The GI said, "I can't suggest that at this time. It is such a lifestyle change. You should really see if he has Celiac disease first.

Something that I failed to mention in my original post:

My husband was also very small as a baby and continues to be below average in height. My mother-in-law kept very good growth records. My husband was 19 pounds at 18 months and 22 lbs at 2 years. I keep bringing this up to all the doctors. Although they seem listen, these facts seem to be unimportant. My son shows no sign of slowed/delayed development in any way. He is EXTREMELY active. Sometimes I wonder if he is just burning more calories than he takes in.

Whatever the case, I am not going to stop searching for an answer about his slow weight gain. I don't like the way that the GI talked to me, and I am going to call my son's PCP for a referral for a 2nd opinion.

I still welcome any suggestions and experiences.

[Tallforagirl]

If memory serves me right the USA is the only country that has the biopsy as the golden standard to diagnose a person with Celiac. Other countries rely on diet changes and blood tests.

No, this is not correct. To my definite knowledge, the biopsy is still the gold standard in at least Australia, New Zealand, the UK and Ireland. I'm pretty sure it's still the gold standard in other countries too, maybe others can confirm this?

A person needs to be at least 3 for the EMA test to be useful. So all the blood test helps out with at that age is to find out if that person has the gene for it (which doesn't mean that they are gluten intolerant; just that they are able to develop the disease).

To clarify: the Endomysial Antibody (EMA) test is a different test from the genetic test.

The EMA is a very accurate (almost 100 per cent specific) test for antibodies associated with celiac disease, so if it's positive you can be pretty sure it's celiac disease. The problem with it, as with all celiac disease panel blood tests, is that it can be inaccurate in young children. The EMA is less sensitive than the tTG (anti-tissue transglutaminase) test which also looks for antibodies. Genetic testing can be done and is accurate even in very young children, and can rule out, but not confirm a diagnosis of celiac disease.

...Other helpful tests...a stool sample by entrolab (based in TX) - yes you send your poop via UPS to TX- it is the only lab in the country that does this. The downside is that this is not widely accepted because there hasn't been enough third party testing done.

This test cannot diagnose celiac disease, only gluten sensitivity.

[g1gg1e]

If your a bad mom so am I!

The Dr.'s have made me feel that way at least. Our daughter is 2, I figured out through elimination while breastfeeding at 12 weeks this was what we were dealing with ( DH's family is the poster family for celiacs). Her symptoms are so extreme that we feel its not in her best interest to eat gluten just for a test that we know isn't as accurate as what we have been doing. Her gene test came back positive and the Dr. didn't even call me, felt it would just confirm my crazy notion that the reason my daughter screams in pain , has discolored teeth , painful urination , no weight gain , thin hair etc...is all in this crazy moms head...he was betting on the 70% chance I was wrong.

When our daughter is older ( maybe 8+ years) we will talk to HER about testing. She is way to small and its to painful for her IMO to go through testing that isn't even that accurate at this point. When she can advocate for herself better and tell me with words what she feels about testing and the pain she will go through then I will work on testing for her.

Sorry if this sounds pissy , Ive just had it trying to get just a Dr. to even see us for flipping check ups!

((hugs)) mama!

[MammaG]

No, this is not correct. To my definite knowledge, the biopsy is still the gold standard in at least Australia, New Zealand, the UK and Ireland. I'm pretty sure it's still the gold standard in other countries too, maybe others can confirm this?

To clarify: the Endomysial Antibody (EMA) test is a different test from the genetic test.

The EMA is a very accurate (almost 100 per cent specific) test for antibodies associated with celiac disease, so if it's positive you can be pretty sure it's celiac disease. The problem with it, as with all celiac disease panel blood tests, is that it can be inaccurate in young children. The EMA is less sensitive than the tTG (anti-tissue transglutaminase) test which also looks for antibodies. Genetic testing can be done and is accurate even in very young children, and can rule out, but not confirm a diagnosis of celiac disease.

This test cannot diagnose celiac disease, only gluten sensitivity.

I don't know, I just know that because of the EMA test coming back inconclusive- it gave the two doctors a point of disagreement with their assesment.

And as far as the poop test goes I felt it was good to have yet another indicator of course it can't be used on it's own as a diagnosis. - I like to collect clues.

As far as the countries: Ok so maybe we aren't the only ones - I guess memory didn't serve me right about that but I do know that plenty of other countries (Italy for one which claims that it tests everyone at the age of 5) only uses diet and blood tests to diagnose.

Anyway, like I said before collect your clues do research and choose according to your comfort.

[MammaG]

Wow! I am feel so blessed to have so many views and comments on my post. Here is an update:

Our next appointment with the GI in in two weeks. I called the GI and told him that I would like to have the blood tests, just to see what they say. He said, "So, I want to put your son through an unnecessary procedure? If the blood tests come back negative, I'll suggest the endoscope and if they are positive, I will still suggest the endoscope." OK, why would he still need to do the endoscope if the tests are positive?????

I was also asking him details about the endoscope procedure. I asked, "Will they give my son some gas to relax him before the sedation?" His reply was, "Would you gas him for the blood draw? The IV and a blood draw are basically the same thing." I also asked if I would be able to stay with my son until he is sedated. The GI said that is up to the anesthesiologist and can't guarantee that.

I then said that I am considering trying out the gluten free diet to see how my son's growth reacts to it. The GI said, "I can't suggest that at this time. It is such a lifestyle change. You should really see if he has Celiac disease first.

Something that I failed to mention in my original post:

My husband was also very small as a baby and continues to be below average in height. My mother-in-law kept very good growth records. My husband was 19 pounds at 18 months and 22 lbs at 2 years. I keep bringing this up to all the doctors. Although they seem listen, these facts seem to be unimportant. My son shows no sign of slowed/delayed development in any way. He is EXTREMELY active. Sometimes I wonder if he is just burning more calories than he takes in.

Whatever the case, I am not going to stop searching for an answer about his slow weight gain. I don't like the way that the GI talked to me, and I am going to call my son's PCP for a referral for a 2nd opinion.

I still welcome any suggestions and experiences.

I'm so glad you posted that about your husband's growth! It is so close to my daughter's. She was 18 lbs at a year and now at 27 months she just reached 22 pounds. We are waiting to do testing with her because we feel she is too young. But she has been gluten free for a year now since her brother and I are Celiac. I didn't want gluten to stand in the way of any possible growth- she needs everything working for her not against her.

As far as the Doctor goes. . .I am glad you are going for a second opinion. You need a doctor to work WITH you. But there are a lot of specialists out there who don't have good "bedside" manners. Good luck and Kudos to you for sticking with it and continuing your search.

[2boysmama]

Thank you both for your input and stories. I could not sleep last night b/c I was going back and forth with what to do. I am leaning towards getting blood tests done, just to see what the tests say. Maybe they will show signs of celiac disease. I realize that at his age, there may be a false negative. I guess that I am thinking that the blood tests are worth a shot and they are much less invasive.

Oh boy, do I remember having that struggle with my son's GI doctor as well. They sure have a knack for making you feel incompetent, don't they??

For what it's worth (maybe nothing! ), here's what I did. I had my older son tested through Enterolabs (he was my only child at the time). It came back that he did in fact have malabsorption and two genes for gluten intolerance, none for celiac disease. I also had that same stool test and bloodwork done through his GI - those came back negative. I started my son on the gluten-free diet when he was 2 1/2 - and within a week the change in him was AMAZING. He never had growth problems - and in fact was always off the charts above the 97th percentile in height, and never less than 50th for weight. But he would have 10 or more HUGE VERY SMELLY blowout diarrhea diapers a day, EVERY DAY. I had him off dairy, soy, and eggs since he was a year, but he continued with diarrhea every day. Looking back, I can't believe he grew so well and had such a sweet disposition. My GI doc wanted to do a biopsy too, and when I refused, she would no longer help me and told me "oh the gluten free diet sucks. It's really hard to do." Nice, huh?!

So I also went gluten free because I noticed that my youngest son was reacting to glutens through my breastmilk at just a couple weeks old, and his reaction stopped when I stopped eating glutens. Now all 4 of us are gluten free for 3 years and have never looked back.

I understand your fear of going against the doctors, I was where you are. I know I'm a total stranger to you, but PLEASE trust me when I say you need to follow your gut (no pun intended). If you feel the biopsy would be too much, don't do it. Try the diet instead - you'll get the answer you need if your kiddo improves. The gluten-free diet is very healthy anyway, so either way you have nothing to lose.

[Woody6]

If I had to do it all over agin I never would have let them do the biopsy on my 18 month old. No, you aren't a bad mom... and your gut feeling is ALWAYS right !

Certainly are not a bad mom not wanting to do the biospy. I would suggest doing the Celiac Panel (blood work)...if that comes out positive then your child has celiac. There is no such thing as a false positive celiac panel (blood work) however there are many false negative biospies.

That said:

this is what is the most recent being taught in top teaching children's hospitals:

Just recently a GI specialist presented a session on Celiac disease. They have reclassified celiac disease into 3 categories.

Symptomatic Celiac Disease where they have positive blood test & manifest lesions in the intestines.

Silent Celiac Disease where there is minimal symptoms with damaged mucosa & positive blood test.

Latent Celiac Disease where they have positive blood test results but normal mucosa in the GI tract.

The people with Latent Celiac given the "right" circumstances, will develop mucosal changes at some point in time. This could be a virus, stress, or some other event they don't even know (much like what triggers type 1 Diabetes).

If a person has a negative Celiac Panel Blood Test result then there are other conditions to look for BUT a positive Celiac Panel Blood Test puts a person in one of the 3 above categories.

The golden standard for diagnosis still remains the Biopsy. However the goal is to diagnose without invasive procedures. (does this mean to forgo the biopsy?)

AGAIN

There are no false negatives with the Celiac Panel Blood Test. A positive Celiac Panel Blood Test means you have one of the 3 types of celiac.

[Woody6]

It is also important to know that newly diagnosised Celiac's may also need to go lactose (diary) free for a period of two to six months along with going gluten free. After that period of time it is safe to slowly reintroduce lactose into the diet and generally can be done without incident but we can never reintroduce gluten into the diet.

Just wanted to throw that out there.