Accurately Diagnosing Celiac Disease; Finally, An Answer For All Those Belly Aches!!
Living with celiac disease without getting an accurate diagnosis can not only be a completely miserable experience, it can be flat out dangerous to your health! Our son Nick went close to 8 years without knowing of his disease and finally we had had enough of seeing him suffer.
We finally got an answer to all his problems!
Not only did we get an accurate and correct answer, Nick was able to get the recommended treatment and we are very happy to say he has lived healthy and symptom free for the past 8 years!
Do you have questions about Nick's diagnosis of celiac diease? Click here to ASK!
So how did we get the final determination of his celiac disease?
We brought him to a specialist; a Pediatric Gastroenterologist that specifically diagnosed and treated digestive disorders in children. Now any adult that thinks they have the symptoms of CD should consider seeing a regular Gastroenterologist versus a family doctor. Go with the specialist, that's our recommendation specifically if you think you may be gluten intolerant.
So what were the specific tests that Nick was given to determine that he in fact had celiac disease?
First we had a consultation with his "new" doctor and brought him up to speed with all of Nick's history and the many symptoms that he had complained about. We told him about the many different treatments, drugs, dietary changes etc.. that his family doctor had suggested over the past 4 years. Of course we told him none of them seem to work and he didn't seem too surprised.
The first test his doctor wanted to do to determine was whether or not had could have crohns disease. Crohns disease is a intestinal disorder where the intestine becomes chronically inflamed.
Many of the symptoms of crohn's disease are similar to the symptoms of celiac disease.
What about testing for food allergies?
After determining Nick did not have Chrohn's, his doctor decided to test Nick for food allergies. At this time, his doctor did not mentioned celiac disease at all but I figured he suspected it but wasn't saying anything to us until he could confirm it.
To test for food allergies, Nick was given set of blood tests. Within a few days after the tests, the doctor gave us a call to tell us that the blood test results indicated strong evidence that Nick had celiac disease. Now of course we had no idea what CD was since we never heard of it. Once we heard the word's "disease" from the doctor we panicked! "What....he has a disease!!" We'll, the doctor told us not to panic and what Nick potential had was very treatable and he could live symptom free for the rest if his live.
We had a million questions!
The first question we asked was "ok how do you cure this?".
Well as you probably know he told us that there was no cure for CD but following a strict gluten free diet was the only known treatment.
Well that generated even more questions like "what in the world is gluten"??? We never heard of that either?
Our next question was "ok so I'm sure he will grow out of this thing right?"
Once again, not the answer we were looking for; "No, you can't outgrow CD, you need to be on a life long gluten free diet."
Furthur testing required; The endoscopy and biopsy
Now as I mentioned, the doctor only suggested that there was "strong" evidence through the blood test that Nick had CD. What came next was that he had to definitively confirm the existence of the disease by performing an endoscopy and then take a small biopsy of his small intestine. The endoscopy required Nick to have day surgery where he was put under anesthesia and a long tube with a camera had to be inserted through his mouth, esophagus, stomach and into the small intestine. His doctor explained to us exactly what he was going to be looking for.
He was going to visually determine that the villi (small finger like projections) on the lining of the intestine was in fact damaged. He also told us about that he would be removing a very small piece of the intestine lining through a biopsy procedure so that he could further confirm the damage to the villi.
What did the doctor find?
Definite damage to the small intestine, an inflamed stomach lining which was the cause for most of his abdominal pain and also inflammation to the esophagus causing the "yucky" feeling in his throat.
And finally, a re-test was needed.
The final step in determining that Nick had CD was that he had to begin a strict gluten free diet and after 3 - 4 months, Nick had to come back and had to be re-tested via a blood test and believe it or not, another endoscopy. The doctor said if Nick followed the GF diet for several months, all these tests would show evidence that Nick was on the road to healing and recovery. After 4 months, Nick did return for his re-tests and the results indicated excellent progress and evidence that the intestine was healing.
Finally, we had the answer!
Nick was going to be fine and his constant feeling of being sick was about to come to an end!
So how does Nick live gluten free?
Read all about Nick's gluten free diet.
What food does he like? Where to we shop for food? How do we prepare a gluten free kitchen? Etc.. Etc...
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