Dr Is Suggesting Invasive Tests-----need Advice

[dinali63]

I'm new to this forum. I was diagnosed with celiac disease 4 months ago...both my blood tests and biopsy were positive. I have suffered for years not knowing what it was, and I'm finally feeling better.

With my diagnosis I have so much more knowledge that I'm now having a hard time figuring out what to do for my son. He is six and has always had "stomach" problems. Colic as an infant, constipation, diarrhea, vomiting etc. Last January, he began telling me his stomach was hurting him. He's not a complainer and so I took him to the pediatrician. She told me after running some blood tests that he was fine and was probably stressed! I couldn't believe that my then 5 year old was stressed, but didn't know what to do (I had my own doctor issues going on at the same time). So when I was finally diagnosed with celiac, I knew I had to pursue it with him. I took him to a top pediatric gastroenterologist in the area and she gave him the lactose breath test and he is lactose intolerant. We then switched items to soy and now have also determined that he reacts to soy.

I keep telling the doctor that I think he may have celiac, but she says that his blood work is negative. He is still having diarrhea and is sooooo tired, but her next suggestion is an endoscopy/colonoscopy. She said that I shouldn't keep eliminating food from his diet and that we need to rule things out with these medical procedures. I think I should just try taking out the gluten. I've read some posts and it seems like many have had similar experiences with doctors. I'm just wondering if there is any advantage to the "medical diagnosis" or should I try the gluten elimination on my own. I feel like my son is just so young to be going through this. Did anyone test their child at this age? or did you use an elimination diet? Thanks in advance for any help!

[2kids4me]

The advantage to an "official diagnosis" depends on the family/person. If a person is more compliant because there is "proof" of the condition..then it helps....if dcotors would be supportive...it may help.

But in reality - living gluten free is healthy. You cook with different flours and avoid a lot of processed food...

Man is the only mammal who drinks milk /milk products after being weaned...there must be a reason nature intended us to be weaned - because we do not need milk - much to the chagrin of advertisers for dairy food.

If your son improves on gluten free and feels better, I bet he will avoid gluten naturally.

The choice is ultimately yours... proof of celiac may be important if another condition is suspected and the only way to know is by further testing. If the bloodwork is negative - it may mean there is something else going on .... but if the response to eliminating gluten is improved health then that can be used as a guide as well.

With children , it can be tricky...you want to avoid unnecessary procedures yet you dont want to miss something cause you are convinced it is celiac.

One approach would be : lets try gluten free for 2-4 weeks and see if he improves. If he gets worse during that time.... that will help guide the diagnostic process ....If he improves then that will point to a gluten intolerance at the very least... if he is lactose intolerant , I would check for casein allergy too......

Good luck...... been there........follow your gut instinct as a mother..regardless of what doctors say or what we say on this forum. Take the info that makes most sense to you and follow the ideas that give you a "good sense" in terms of your son..

[Fiddle-Faddle]

If there is something specific that your doctor is looking to either find or eliminate via invasive tests, I would want to know, in detail, up front, everything she is looking for!

As far as I know, the only food problem she can diagnose via an endoscopy is gluten. She can't tell if soy, casein, lectins, etc. are problems by biopsy.

As far as gluten is concerned, remember that there are 20 feet of intestines and doctors take only a few 1/2-inch biopsies. Add that to the fact that villi damage (the sign of gluten damage) is often patchy and/or visible only under a microscope, and guess what? Biopsies are only accurate in that, if they happen to pick an affected area to biopsy, they will (if they know what they are doing) spot the damage under a microscope. If they happen to diagnose an unaffected area, they'll tell you you're fine, even if there are 199 feet of damaged intestine that they missed, simply because they didn't biopsy that part.

In other words, a negative biopsy means practically nothing.

The only ways to accurately diagnose a problem with food are either via bloodwork or by dietary response!

People with peanut allergies aren't subjected to this kind of nonsense. If they have one reaction, they are immediately told to stay away from any and all peanuts. They aren't told that it's in their head, or that they MUST endure invasive and expensive procedures before they are "allowed" to take peanuts out of their diets.

[momandgirls]

People with peanut allergies aren't subjected to this kind of nonsense. If they have one reaction, they are immediately told to stay away from any and all peanuts. They aren't told that it's in their head, or that they MUST endure invasive and expensive procedures before they are "allowed" to take peanuts out of their diets.

[mom with gf toddler]

I have to agree totally. Food allergies and celiac are both subject to invasive tests and for good reason. In my eyes it is totally nonsense to eliminate a food from a child's diet unless medically necessary either by testing with a doc or parent's choice. It seems a lot of people do not have $ for hospital procedures or office visits let alone the cost of gluten-free allergen free foods. I have a toddler with multiple food allergies and celiac. They are both invasive to him and the whole family. If you are not happy with what a physician is telling you than switch. You have every right to do this. I am fortunate to live nearby to what I believe is a wonderful hospital (Rainbows in Cleveland) But it still took persistance on my part to get to the point of diagnosis. And even at the point of diagnosis for his celiac while he had the biopsy they did bloodwork for some food allergies and said that his milk allergy was now neg, which he had as an infant. I did not want to just go home and give him a big glass of milk or cheese, but made another appointment with the allergist and insisted on the skin scratch test, which was what was done originally when he was about 10 months old. It was POSITIVE so go figure. Throughout all of this a lot of mothers instinct played part, so do not ignore yours. But, if I could go back and have to decide whether or not do have my child put through to skin/blood/biopsy tests I would definitely do it again. They are invasive to a point, but he got through it better than I did!!!

[Ridgewalker]

I have to say that it is extremely important to remember how unreliable medical testing for Celiac is in children.

I think it is 100% valid to question a biopsy at this point. I'm sorry, but biopsies are helpful, but far from foolproof- they are just too hit and miss, literally.

Eliminating foods from a child's diet for NO reason is nonsense, but it is absolutely NOT nonsense to eliminate foods from a child's diet to test for an intolerance. Sorry if I sound heated, I'm not trying to be snotty, but I do feel very strongly about this.

No one needs gluten to be healthy.

IMHO, a trial gluten-free diet is a good idea. It has to be strict, and I would give it at least 6 weeks.

[2kids4me]

As far as I know, the only food problem she can diagnose via an endoscopy is gluten. She can't tell if soy, casein, lectins, etc. are problems by biopsy.

In other words, a negative biopsy means practically nothing.

Perhaps the only "food problem" they can diagnose by endoscopy is gluten BUT there are a number of conditions that present like celiac and it would be malpractice ofr her NOT to consider them in young child...even if celiac is most likely.

Some causes include:

Intestinal lymphangiectasis

Mycobacterium avium intracellulare.

Eosinophilic duodenitis (ED) is characterized by eosinophilic inflammation of the small bowel that results in the production of leukotrienes, substances that participate in defense reactions and contribute to hypersensitivity and inflammation.

Whipple's disease

Mastocytosis

Protein-losing enteropathy

A negative biopsy will rule out a number of small intestine conditions. They also examine the antrum of the stomach and check the sphincter that opens to the duodenum..and check for signs of regurgitation at the esophagus too...or at least they should.

The only one who can determine if these are possibilities - is the doctor....BUT, I will repeat that a dietary response to a gluten free diet ( and perhaps casein free as well) would rule out a number of the above conditions as well.... because they would not change with Gluten-free Casein-free diet.

I just wanted to explain to anyone reading the post that there are other gastroenteropathies that cause GI symptoms and would be a reason some doctors would want to do an endoscopy on a child

[gfgypsyqueen]

I think it is hard to make the decision to subject your child to the scope. It seems horrible, but it easy. If you really have a hard time with the idea of a scope look into EnteroLabs. In reality, I have my youngest scoped just prior to her 2nd b-day. The results were inconclusive. They did a gene test too. She has one of the genes for celiacs. So, after many arguments with the dr, yes yet another bad pediatric gastro in regards to celiacs, she is now gluten-free/CF and doing great and not seeing that Dr! I would have preferred a solid diagnosis, but that didn't work out. She reacts to trace levels of dairy. She reacts to gluten. So that is the proof for me. Add one more silly to my family!

BTW, I have one child with a peanut/tree nut allergy. Celiacs is not an issue for her. But she had to endure testing for the allergy, even though she had the beginnings of an anaphylactic reaction on eating a nut. She was in tears for the skin tests. As she has gotten older, the skin tests aren't as scary. Every new school year we go through a very dangerous 2 mth period of new friends and new teachers and my kid just wanting to be normal. The reason it is dangerous is because she talks about trying a nut because she wants to be normal.

So whether or not the tests are invasive, all of us spend endless amounts of time worrying about our kids. Worry about tests and if they are really worth the pain and suffering. And mostly worrying about the moron adults and children out there who just do not get the idea that food can hurt and food can kill. And my favorite is worrying about the aunts, uncles, and grandparents who refuse to listen and follow the rules regarding food allergies.

[Ridgewalker]

So whether or not the tests are invasive, all of us spend endless amounts of time worrying about our kids. Worry about tests and if they are really worth the pain and suffering. And mostly worrying about the moron adults and children out there who just do not get the idea that food can hurt and food can kill. And my favorite is worrying about the aunts, uncles, and grandparents who refuse to listen and follow the rules regarding food allergies.

Ain't that the truth? Good points.

[Fiddle-Faddle]

It is much harder to replace gluten and get the same nutritional benefits.

There are no nutritional benefits to gluten.

Look, I thought it was going to be absolutely horribly difficult to remove gluten from my diet. I literally cried for 2 two days, and thought I couldn't deal with it.

It has been so easy, it's ridiculous. it's EASIER than going low-carb, because you can have carbs. You can have rice, potatoes, vegies, fruits, whatever you want that isn't wheat, rye, or barley (or oats, for many).

And I can make cookies, pizza crust, biscuits, breads, etc. out of all kinds of other flours and starches, it's EASY, not particularly time consuming, and cheaper and healthier than pre-made gluteny items.

[2kids4me]

There are no nutritional benefits to gluten.

Ditto to that.

There are many options to provide nutrition for the human body.

veges / rice / unprocessed meat /potatoes / fruits / flaxseed

Quinoa is an ancient grain that has more nutrient value than wheat.

I too make pizza, homemade soup and cream sauces, loaves, bread, cookies and cakes....only difference is that now I use a different flour. The kids are very helathy - more healthy than their counterparts at school munching away on junkfood and refined bread.

The side benefit to being diagnosed celiac and having to change the way you eat - is that you eat better than ever and are aware of food groups and raw vs refined.

Sandy

[buffettbride]

While I see how the endoscopy may seem daunting, it could also help rule out (or identify) a whole host of problems--as mentioned in a previous post. Sure, you could try the gluten-free diet and see improvement, however the risk associated with an endoscopy is very low. It is actually a very quick and simple, painless procedure. My daughter thought the barium swallow was way worse!

When my daughter was having tummy trouble, I had no clue Celiac Disease even existed. I never would have put 1 and 1 together and stumbled upon it. Our pediatric GI was very clear from the onset of treatment that we would be ruling things out from reflux medication to barium swallow to endoscopy.

First we tried a month worth of Prevacid for improvement on the reflux. No luck. Then it was a barium swallow which identified inflamation in the duodenum. Then it was some follow-up blood tests and scheduling an endoscopy. Then it was the results of the blood tests and biopsy samples which sealed the deal. I am SO thankful we followed the process we did.

Now while I agree with many others here that a medical diagnosis isn't the most important thing, mainly not needing a doctor's permission to try the gluten-free diet, I see many benefits of following the recommendation of your GI specialist--especially if he is as respected as you say he is.

[dinali63]

Thank you for all these great posts! All this great information gave me a lot to talk about with my son's pediatrician and the specialist today. They answered my questions and gave me good reasons for making sure that we get to the answers for why he's having these problems. The specialist has two children with celiac, and she was very sympathetic to my fears. I see my son, without energy to play, bouts of diarrhea and stomach pain and I just want to help him. My fears will be there, but I cannot take the risk that without considering all possibilities of the causes, we miss something and the symptoms continue.

I also called a friend whose son was just diagnosed with Crohn's. Our sons were in preschool together and I haven't seen her in months, but she spoke to me at length and even called again later in the afternoon. What I realized today and what many of you mentioned is that this is not an easy process. The additives in the foods that are pushed by these companies are unbelievable. Being a celiac myself, I it was difficult at first to adjust, but I do agree that the food choices are there and taste great. Just a bit more effort to cook those meals daily! I do hope that people become more aware and more understanding of food allergies and intolerances. I'm so happy that I joined this forum. It really helped me today and whatever we decide I just know that I will keep pushing until the answer is found. We love our children and are their best advocates!

[Guest andie]

Hi

My sons story is posted on the board under, "Do you suspect celiac in your child" or something like that.

My first question would be 'How soon can these tests be done and resulted?'.

I gave the Doctors several oportunities to diagnose my son. His blood work was normal and it was never persued after that. I would have gladly had the tests when he was 2, or even thought about it when he was 8. But now he is almost 11 and I have had to diagnose him myself. I know about the tests. We do them everyday in hospital.

My thinking is that being able to non-invasively test him with a diet is far better than relying on a biopsy that may or may not be conclusive. What if the biopsy is neg? What further testing is called for after that? How long will you do testing before you try the diet? Because all this time he has to be eating gluten in order for the test to be anywhere near conclusive. Especially in children.

If he is not any better after 6 weeks or gets worse on the diet, then odviously it is not celiac and putting him back on gluten isn't going to hurt him any worse then he's already hurting.

You are already gluten free. There is an odvious connection. If he has any of those other diseases it won't go away gluten free.

That being said, kids are hard to manage on the diet. Not only because they need to be monitored closely, but normally get a variety of stomach ailments that cloud the issues. It is a seesaw affect for awhile. After 6 months my son can tell the difference between feeling unwell and being glutened.

These children are not 'complainers' because they don't know what normal is. It sound however that his symptoms are escalating, as with my son, prompting you to seek more answers.

Trust your instincts! You know your child better than he even knows himself, and without a doubt better then those Dr.s Doctors are trained to do tests. To always have a definitive diagnosis. Its what they do

Read my post and decide for yourself.

Good luck.

Andie

[Nancym]

Gluten, on the other hand, is very different. It is much harder to replace gluten and get the same nutritional benefits.

There's nothing in gluten, or grains, that can't be easily replaced in the diet by some other food. Humans have only been eating "gluten" for a few thousand years. Somehow our ancestors managed to get along quite well before it came along.

[Fiddle-Faddle]

Southeast Asians and Chinese have only recentlyintroduced wheat into their diet --their diet has been rice-based for centuries. In fact, the Chinese greeting, "Ni Hao Ma," while loosely translating as "How are you?" more accurately translates as a shortened version of "Have you had rice today?"

Gluten intolerance/celiac disease is practically unheard of in Asian countries. But when Asians move to Europe and North America, with each successive generation, the rate of diagnosed gluten problems goes up, presumably because they are following the typical Western diet. After 3 or 4 generations, the rate is close to that of those of European heritage.

I think one of the biggest problems we face, celiac or no celiac, is that the typical American diet is wheat-based; even the food pyramid emphasizes grains, and of course, wheat is the most commonly used grain in our diet.

But the food pyramid is just plain WRONG.

[Michi8]

Previous quote: People with peanut allergies aren't subjected to this kind of nonsense. If they have one reaction, they are immediately told to stay away from any and all peanuts. They aren't told that it's in their head, or that they MUST endure invasive and expensive procedures before they are "allowed" to take peanuts out of their diets.

I would just like to respond to your peanut allergy statement. My daughter, in addition to Celiac, has a peanut allergy. To be diagnosed, she was subjected to blood tests (invasive), scratch tests (invasive) and a food challenge (not invasive but required us to be at the hospital for four to five hours).

Taking away peanuts and taking away gluten are two entirely different issues. There are a myriad of foods that she can eat to replace the protein found in peanuts - she is not allergic to other nuts and peanuts can be easily replaced. Gluten, on the other hand, is very different. It is much harder to replace gluten and get the same nutritional benefits.

I have to respectfully disagree here. Eliminating any food from the diet is essentially the same process. One does not ever have to go through invasive testing before eliminating a food. And I challenge that a proper elimination diet is the most sure way of determining whether one is sensitive to a particular food. That said, if an anaphylactic reaction is suspected, then testing for that food should be done under proper medical supervision.

I was allergic to peanuts as a child. I did not have testing done to prove it, because the proof was in my reactions...and, even at an early age, I naturally stayed away from foods that caused me discomfort. I was fortunate that I never became anaphylactic. I have had skin scratch testing done since, and have confirmed many allergies (and many new ones to foods), but the peanut allergy came back negative. Great, I can eat peanuts now...but I do still react sometimes. So much for the accuracy of the test!

Finally, the nutritional benefits of gluten are questionable. The fact that so many people are or can be gluten intolerant speaks to how beneficial gluten is. One can live a very healthy life eliminating gluten, without finding a "replacement" for it. I think I have a harder time missing out on the benefits of the nutrition from tree fruits (apples, peaches, cherries, etc) due to my oral allergy syndrome.

Michelle

[gfpaperdoll]

Doctors make money doing a biobsy, period. If a child has the symptoms & has a celiac mom, then a dietary trial should give you the answer. Unless, the child has other complicated health issues, blockages, abnormalities etc. Then if the child does not improve on a gluten-free/DF diet then you should look for other problems.

The real truth is that gluten is not good for anyone. I think that we are the lucky ones because we react & can tell how bad it is for us.

I would like to know what the human brain would be capable of, if we had a couple of generations of people that never ate gluten or dairy or chemicals...

[Fiddle-Faddle]

It is much harder to replace gluten and get the same nutritional benefits.

I'm guessing that you are quoting the doctor here?

Please ask him to name ONE nutritional benefit to gluten that cannot be easily replaced with another food. In fact, please ask him to name ONE nutritional benefit to gluten, period.

Momandgirls, I hope we're not making you feel attacked here. It's just that we've all already been through this with our doctors--some here have been through it with MANY doctors--and we've already done the research on this. We've already learned that gluten, wheat, wheat products, etc., simply aren't necessary to our diet.

If you haven't already found this book, please look for it: Special Diets for Special Kids by Lisa Lewis. The edition I have is at least 9 years old, which means it's already outdated. I think that there may be a second, even a third edition. Lisa Lewis was told by her child's doctors that wheat could not be replaced, her child would starve, he would be missing out on normal food, it could not have anything to do with his physical and developmental difficulties, etc., etc., etc.--and she proved all the doctors wrong.

And now there are literally thousands of us who don't give our lack of wheat a second thought. We don't feel that we--or our children--are missing out on anything except maybe convenience, which is such a small price to pay for health.

We just don't want you to have to go through the same difficulties we did. We want to save you the trouble! That's why we are here on this board....

[Carter's mom]

I just wanted to share with you that my son had an endoscopy done to get a diagnosis of Celiac Disease. He was only 16 months old. I was very afraid and thought the surery was invasive but when it comes down to it, Carter was "knocked" out with anesthesia and he was given versaid through an i.v. so he wouldn't be agitated before going into surgery. This put me more at ease. Our doctor/gastroentomologist assured me that there would be no ill side effects from the biopsy etc and that Carter wouldn't feel any pain. He said the worse case scenario would be that Carter would have a mild sore throat from being intabated.

We only had an endoscopy done, not a colonoscopy. Is your specialist asking for a colonoscopy to rule out colitis or anything else? I'm not to sure why that is neccessary if the intestinal tract can be accessed going in through the upper end.

Good luck in whatever you decide.

[Michi8]

I just wanted to share with you that my son had an endoscopy done to get a diagnosis of Celiac Disease. He was only 16 months old. I was very afraid and thought the surery was invasive but when it comes down to it, Carter was "knocked" out with anesthesia and he was given versaid through an i.v. so he wouldn't be agitated before going into surgery. This put me more at ease. Our doctor/gastroentomologist assured me that there would be no ill side effects from the biopsy etc and that Carter wouldn't feel any pain. He said the worse case scenario would be that Carter would have a mild sore throat from being intabated.

Unfortunately, the worst case scenario is more than a sore throat...it can involve internal bleeding and infection, which can lead to further health issues...after all, a foreign object is being inserted into the body, and a tissue sample is being taken. A patient needs to hear all the possible side effects of a surgical procedure in order to have fully informed consent. It's negligent of a doctor to downplay the risks involved.

Michelle

[Fiddle-Faddle]

A friend of mine is an anesthesiologist. When our son had open-heart-surgery, we asked about worst-case scenarios, and were told that there was a very small chance of infection.

A friend of mine is an anesthesiologist. When I told her about it, she said, no, the worst-case scenario was the child dying on the table, that it was a real risk, and that anesthesia is much dangerous for small children than for adults.

When I asked her why the surgeon didn't mention "death on the table" as a possible risk, she said that if surgeons tell parents that it is a risk, they never choose the surgery.

A couple of years later, our dentist wanted to knock our 2-year-old out to do restorative work on what turned out to be discoloration from the iron and antibiotics I took while pregnant, but that dentist insisted were cavities.

Thank heavens for the advice of my anesthesiologist friend, who said that knocking out a toddler if it isn't necessary is ridiculously risky.

[Michi8]

When I asked her why the surgeon didn't mention "death on the table" as a possible risk, she said that if surgeons tell parents that it is a risk, they never choose the surgery.

Something all patients need to do is really read the fine print on the consent form that is signed before any surgery. Regardless of whether the staff actually point out all the facts, they are printed out in black and white. The fact of possible death (and other possible risks) is on that form...when you sign, you are saying you are accepting the risks and are consenting to the surgery.

Michelle

[dinali63]

I just wanted to share with you that my son had an endoscopy done to get a diagnosis of Celiac Disease. He was only 16 months old. I was very afraid and thought the surery was invasive but when it comes down to it, Carter was "knocked" out with anesthesia and he was given versaid through an i.v. so he wouldn't be agitated before going into surgery. This put me more at ease. Our doctor/gastroentomologist assured me that there would be no ill side effects from the biopsy etc and that Carter wouldn't feel any pain. He said the worse case scenario would be that Carter would have a mild sore throat from being intabated.

We only had an endoscopy done, not a colonoscopy. Is your specialist asking for a colonoscopy to rule out colitis or anything else? I'm not to sure why that is neccessary if the intestinal tract can be accessed going in through the upper end.

Good luck in whatever you decide.

Thank you for sharing. My son's gastroenterologist is suggesting both to be done, because of his severe diarrhea. He's also grown an inch since the beginning of August , but lost two pounds in weight. She said she wanted to rule out colitis, IBD, IBS, crohns. I do think that there are risks to these procedures and my husband and I are still discussing and researching as much as possible. We are just so concerned that he is now choosing not to go to the park to play with his friends, but he wants to stay at home and sit on the couch. He has never refused playing with his friends before and we are getting very, very concerned.

Since I have been gluten free, I really do not miss any foods I used to have, not even pizza. I felt so terrible after eating those items that I could never think of even cheating once. We had friends over last night and they couldn't believe how tasty the meal was from the appetizers to the dessert. I don't know what they were expecting, but most people react by saying "Oh no, what is there to eat then if you're gluten free?" Gluten free really gives great options and I know that I will not need a "medical diagnosis of celiac" to ultimately remove it from my son's diet. We are concerned however of missing something else that may be going on.

Thanks again for the all the support and information while we're trying to make these decisions and help my son feel better.

[Fiddle-Faddle]

Something all patients need to do is really read the fine print on the consent form that is signed before any surgery. Regardless of whether the staff actually point out all the facts, they are printed out in black and white. The fact of possible death (and other possible risks) is on that form...when you sign, you are saying you are accepting the risks and are consenting to the surgery.

Michelle

They don't give you the form when you meet with the surgeon beforehand (which is something I had to insist on, and had to pay a separate office visit fee for it) They give it to you when you show up at the hospital for surgery at 6 am, with your child in your arms, and you're all stressed out already because they're going to crack open your child's chest. They give you so many forms to sign, and it's impossible to understand all the forms you are signing unless you have a lawyer present! Sure, you try to read them all, but it's not realistic to expect that you will understand them all, especially when the risks are different from the ones explained by the doctor.

Are you expected to believe that the pre-printed risks are more appropriate to your child's situation that those explained by the surgeon?

In reality, those pre-printed risks WERE more accurate than what the doctor said. But how is anybody expected to know this?