"Mis" Diagnosing Celiac Disease; Nick's Unfortunate Experience!

Diagnosing celiac disease accurately and correctly can be a little tricky. Since many other disorders have similar symptoms as celiac, doctors can conclude that one might have something other than gluten intolerance such as the flu or have normal indigestion or constipation.

Our son Nick's celiac disease was misdiagnosed by his pediatrician from about 4 years old until 7. There are several reasons for this but first let me say that we are not putting blame or holding his doctor responsible for the misdiagnoses. One main reason is because celiac disease was definitely less known eight years ago than it is today. Most doctors just assumed that kids have normal stomach aches from time to time. You see, with Nick's symptoms, he never got violently ill. His celiac symptoms gradually came on stronger and stronger over about 4 years, up to his final diagnosis.

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That being said, we want to at least discuss the specifics around Nick's misdiagnosis because there may be many people out there right now that are having the exact symptoms Nick had. If you have similar symptoms than we strongly urge you to ask your doctor for a celiac blood test to rule it in or out.

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So how was Nick's celiac disease misdiagnosed?

Belly Aches and Nausea
When we took Nick to the doctor for normal well being checkup for children, we indicated to the doctor that he was complaining from time to time about belly aches and that he would get constipated from time to time. We also told him that he would feel nauseous off and on. His doctor of course examined Nick and told us to give him Mylanta (over the counter medicine for upset stomachs) once per day for about a week. So we followed his directions and it seemed to work so we just assumed he would be ok going forward.

Well that didn't work because the same complaints just started coming back shortly after. Now in hind site, not knowing Nick had a gluten intolerance at the time, Mylanta probably contains gluten so we were just fueling his celiac symptoms every time we gave it to him!

Increased Constipation and an X-ray
We continued to discuss Nick's complaining and we noticed that Nick was getting constipated more often. Hearing this, the doctor thought he should check to see if Nick was getting "backed up" so he ordered him to have an x-ray of the intestines to confirm. Well, again it didn't reveal anything. Again, since Nick wasn’t really getting real sick he was just complaining from time to time, the doctor said to lets keep an eye on it and if it gets worse bring him back in. At this point Nick was about 5 years old so this went on for about a year.

Acid Reflux
At this point the symptoms started to get worse. As I indicated in "Nick's Symptoms" page, he regularly started complaining about how his throat would feel "ucky". Again, we went back to the doctor and the doctor felt that now he had an acid indigestion issue because he concluded that Nick was experiencing complications from acid reflux in his throat. Well I'm sure that is exactly what it was however; the doctor didn't know why that was happening. I told him I never heard of too many 5 and 6 years olds having heartburn? Nevertheless, he decided to prescribe Nick liquid Zantac which is a high powered medication for acid reflux. Now if anyone has ever taken this stuff you know that it smells and tastes similar to gasoline!. So here we are spooning this to our son twice per day to cure his acid reflux problem that was really caused by his celiac disease and gluten intolerance.

Eat "Bland Food"
Again he was on the Zantac for a few months or so and sometimes it helped and sometimes not. So, 6 months or so later, back to the doctor. Still unclear on why Nick was having indigestion and stomach issues, the doctor decided to ask us to put him on a bland diet for a while to see if that would help. So he told us to keep him away from spicy foods and serve him bland food like breads, plain pasta, unsalted crackers unseasoned meats etc.. Well you guessed it, it really didn't help. Why?? You guessed it again, look at what we were feeding him...tons and tons of GLUTEN!! Once again, only making matters worse.

Final "Mis" Diagnosis - Lactose Intolerant
Maybe he was lactose intolerant and had problems with dairy and milk products? Again, tried this for a while and it didn't help as symptoms persisted.

Ok..We had Enough!
At 8 years old after watching Nick's celiac symptoms increase to a point where he was starting to lose weight because he was giving up on eating, we decided that he needed to see a specialist. We got a the name of a local pediatric gastroenterologist and made an appointment. Finally we were about to get some solid answers and reasons for Nick's constant belly aches, indigestion and stomach pain. At 8 years old and after about 4 years of trial and error, it only took about two weeks for Nick's pediatric gastroenterologist to conclude that Nick in fact had a disease called "Celiac Disease" and that was the root of all his problems.

Read how Nick's doctor accurately diagnosed his disease and what he recommended for treatment. Nick's Final Correct Diagnosis

Did You Get Misdiagnosed? Tell us about it!

When you or someone you know was having symptoms of celiac disease, did they get misdiagnosed? Share your story with us!

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What did the doctor think you had? How long did you go undiagnosed?

What Other Visitors Have Said

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