To “celebrate” the anniversary of my son’s diagnosis with celiac, I called his doctor to request an appointment. I expected this whole process to be very uneventful and, to be blunt, really boring. That was an incorrect assumption. For starters, his GI Doctor, who I thought was fantastic, no longer takes Blue Cross. So, I found a new one, and made an appointment for a few months out. Well, the appointment rolled around and we went to check out the new doctor. From the moment he walked in the room, I couldn’t stand him. First of all, and this is mean, he had a horrible whispery voice. It just grated on my nerves. But then, he pulled out my son’s chart, and in front of my child states, “Well, you know, based on these numbers, I’m not entirely certain he has celiac. I would like to take a look at the biopsy. It’s a very weak positive”. Now, correct me if I am wrong here. A “weak positive” on a pregnancy test certainly doesn’t mean that you might not be pregnant. And actually, because I am a brat, I had to make a point of the fact that it wasn’t actually a weak positive, it was an actual positive based on the chart I had seen previously. Which just might have made him a little mad at me.
The doctor then left the room for a minute. My son leaned over and whispered, “Did you hear what he said Mommy, I might not have celiac.” And being a wonderful parent, as I always am, I calmly responded, “Well, he’s wrong. And I don’t like him.” It just really made me mad, because my son had gotten his hopes up. The doctor came back into the room and proceeded to tell me how he would request a biopsy report or something of the like and he would also like to run a test to check for vitamin deficiencies. And then made a snooty comment about how my other doctor, who I liked and didn’t want to beat over the head with a clipboard, should have been more thorough.
The next part of the conversation was where it got really interesting. The doctor asked what I would do if my son didn’t really have celiac. So I stated, first off, that he does have celiac. He has a strong family history, along with another autoimmune disorder. When he is on a gluten free diet, he doesn’t sleep walk, have black circles under his eyes, he grows appropriately and I have to use the sanitary cycle on his underwear a whole lot less. But then I asked the doctor, “Even if you think he doesn’t have celiac now, he had a positive biospy and a positive blood test. If he continues to eat gluten, won’t he wind up with a much more severe case as an adult. What is the point of letting him eat gluten for a few more years, only to wind up in a situation where he can’t cheat occasionally without having much worse repercussions?”. To which he replied, “Well, you can’t guarantee that.” And then we left the office.
I called my husband while driving home (that’s legal in Texas) and relayed the whole story to him in a very kind fashion, casting the doctor in the the most positive light possible. I might have thrown in something about how I can’t stand him and won’t go back there. And my husband responded the same as I had, “Don’t worry about it, he’s wrong”. After all of this drama, I really won’t go back there, because it turns out that the doctor wasn’t able to even get the slides of the biopsy, and never even called me with the results of the vitamin deficiency test. And every other doctor that my son sees was shocked that the GI doctor had even called a positive diagnosis off of a biopsy into question. We will be going back to our old GI doctor, even if we have to pay out of pocket.
So, I’m sorry if this story went on and on, but imagine if it was your doctor and your child. What if a doctor told you that after a year of eating gluten free, that your child might not have celiac....at least not yet. Would you avoid it entirely in an effort to keep what might be a very mild case from turning into a severe one? Or would you let him eat gluten for a few years, all the while wondering if and when it was going to affect him, and worry that each cupcake or slice of pizza was eating holes in his intestines. I’m sure you won’t be surprised to find out that we chose option A. What would you do?
G-Free Mommy Hilary
Lois says
Well. seeing as I have changed doctors (not for celiac but other issues) because they are paid by pharmaceutical companies, and hmmm celiac doesn't make any money for pharma because it's a strict dietary protocol not a drug ... if it WASN'T celiac then he could put your son on (expensive) medications for the ailment he (doesn't) have. We've seen this before in other types of conditions. You did the right thing. IMO
Tracy Demkowicz says
I would have done the same thing you did!! It wouldn't be the first doctor that I got into a fight with and told they were wrong. I don't care how much education they have....when are they going to start learning that parents know their kids better than anyone!! Good luck to you and your son.
Yvonne says
Not all doctors are good period. My cousin was told he NO LONGER has celiac when he was a teen and went back to eating gluten. He is severely overweight and has all kinds of issues. He heard what he wanted to hear and even though I reminded him that it's not reversible but it is possible to get worse, he's stuck in a rut. I am one who found out too late and can't even touch bread with my hands or they swell. Keep teaching him how to live without gluten and he won't end up with more health issues, bad eating habits and severe sensitivity. I wish I could go back in time:( Good job MOM!!
Christine says
I would have done the same thing. I don't think I would have stayed after I saw my son get his hopes up. That's ridiculous. If I knew about this 10 years ago, I wouldn't have the problems I have now. I would not wish this on anyone. Good for you for standing your ground. Your son will thank you when he is older.
Teresa says
First of all, I am heartsick for your son for that glimmer of hope he had upon hearing those words.....any doctor that would not realize the effect of that has no bedside manner whatsoever. I have been in your
shoes about personality conflicts though 😉
I saw 7 gastros with obvious Celiac symptoms, but negative biopsies, who never ever suggested I give Celiac disease a thought. I have realized that they are mostly in the dark about our disease and I really don't put much stock in what they say anymore. Our pediatrician did not agree with Cincy Children's diagnosis, (through blood tests only), of our daughter and asked why we would 'punish' her by going gfree. We agreed upon six months time to evaluate the diet change and then we had her rechecked, the results were astounding to even the doctor!
I don't care what any MD tells us anymore about Celiac disease, most of them actually ask me questions now because they are so behind on research and they have so few patients for reference. You sound like a great Mom and you know your child better than anyone, he is luck to have you in his corner 🙂
Billie R. says
Echoing Christine here! It's great that your son's celiac was caught so early to avoid him having much worse health issues in the long run! I most likely had celiac as a child, but I wasn't diagnosed until just a few years ago. I'm now the happiest and healthiest I've ever been, but things would've been easier with an earlier diagnosis!
You're blessed with the opportunity to help your son grow into a healthy young man... it's a shame that the doctor didn't see it that way! How foolish of him, not only to get a child's hopes up, but to also call your parenting and another doctor's careful diagnosis into question!
Gina L says
My son's first doctor was a live by the statistics kind of guy. Whenever I would express a concern about an odd symptom (full body rash, projectile vomiting, unstoppable crying after eating cheerios) he would say that in 90-something percent of cases, that isn't the case. As it turned out, my son was always in that small percentage where that WAS the case. After many months of frustration and doing all the diagnosing myself, we switched doctors. My only requirement, not to know it all, but to be open to the possibility of something. We got along fine. Sometimes you just KNOW that this isn't the doctor for you - no use fighting it - find someone who will join your team in every sense of the word! Good luck finding the next one (you might just want to call your old one and see who he recommends)!
Luna says
My pregnancy doc told me flat out that I do not have celiac disease. I have a positive biopsy and bloodwork. But since I have constipation with it and not diarrhea, it's not celiac to him. He kept telling me that I needed to eat Cream of Wheat for my anemia. When I said, "But I have Celiac!" he'd say, "Yes, just eat it for a few weeks to get your iron up, and then eat gf again."
Suffice it to say I ignored him soundly and found a new doctor.
Deb LDCDEMSPH says
I have counseled Celiacs and gluten intolerants for years as a private practice dietitian. I am now gluten free and all symtoms have resolved. Gastro doc wants to do tests on me for celiac and gluten intolerance. He does not seem to understand that results would be negative UNLESS I eat gluten for a couple of weeks! I think not. I do not care to have nausea, reflux, rashes, joint pain, headaches, muscle aches, neuoropathy, extra laundry... Why should I let him run up bills on my insurance company...