6 replies to this topic

[tommysmommy]

My son is 21 months old. In June he was the picture of a happy, healthy, chubby baby! Then he began vomitting regularly which turned into ongoing diarrhea. In less than two months, he lost 1/3 of his body weight, totally weak and was deteriorating fast. Many doc visits, 3 visits to a "good" peds er, admitted for 3 days....and after endless blood work, necessary iv fluids, 2 xrays, an ultrasound and Ct scan....best they could tell me was it was a virus, give him Lots of high calorie foods and bread, he would improve with time. He didn't. Getting an appt with the peds gi specialist was torture. I kept digging myself and was convinced he had more celiac symptoms than viral symptoms. I called to GI office to ask if it could be celiac (I knew it was one of the many things they tested for) and I was told "NO". I took him off gluten anyway and he improved dramatically overnight and kept improving. A week later, finallly had our gi appt, only to find out the bloodwork showed he DID have celiac but no one noticed that report.

Now we are scheduled for an endoscopy. Is this really necessary? I hate to put him thru anymore procedures. He is improving rapidly. I know it is celiac and dairy doesn't agree with him but he is eating constantly, gaining weight and full of energy....in 2 weeks gluten-free.

I have no respect for these "specialists" and happy to be the one in control.

Can anyone give me a good reason for going ahead with the endoscopy at this point?

[ravenwoodglass]

Talk to your ped. He had positive tests on blood work and has responded well to the diet. To have an endo now you would likely be told to put him on a gluten challenge and he may react badly to that. Your doctor may give the 'official' diagnosis he will need for school based on the positive bloods and response to the diet.

[mommida]

An endoscopy done before starting the gluten free diet could have given a clear picture of the amount of damage that has been done and needs to heal. It could have also diagnosed or ruled out any other disorder(s). It could rule out congenital deformity of the upper GI track.

I would think a gluten challenge is too risky for your child's health right now. See if the doctor can diagnose with the blood work and possibly genetic test (still not really 98% accurate ~ you will hear that from the Prometheus labs representitives if you should ever have a question about "inconsistant" results.

We didn't have the endoscopy when my daughter was 15-17 months old. She too was hospitalized because of dehydration trying to eat gluten through the testing. Blood test was positive, used gluten free diet to get her healthy and out of the hospital. Doctors would not do scope because she was termed too ill at the time. Genetic testing was positive for both Celiac genes.

She was fine, until she was 6. It seemed like she was getting the same Celiac symptoms, but worse. She started vomitting up to 5 times a day. She was then scoped and diagnosed with Eosinophilic Esophagitus, EoE.

EoE has "triggers". Gluten can be a "trigger" for EoE and there is now a proven connection between Celiac and EoE.

[icm]

EoE has "triggers". Gluten can be a "trigger" for EoE and there is now a proven connection between Celiac and EoE.

Isn't that a condition where you can't eat anything? I'm terribly shocked that gluten could trigger this...

[mommida]

EoE, can be a different experience per patient.

Something triggers the production of eosinophils (white blood cells that have a spearlike attack, usually reserved for parasite infection)

once the eosonophils are activated, they are actively damaging (normal healthy tissue) for 12 days.

in the case of EoE the eosinophils damage the tissue of the esophagus. Deep furrows, schatki rings , food can be stuck in the esophagus from the damage, and patients may need surgical dilation

Some patients do need to be put on feeding tubes. If you can figure out food "Triggers" and avoid them, you eliminate the damage.

The top suspects for triggers are the top 8 allergens, gluten, and peas. Unfortunately there seems to be an airborn allergen connection. Many patients are diagnosed late summer to fall (as symptoms seem to "flare" seasonally)

New patients diagnosed with EoE are now reccomended to be tested for Celiac for the known connection between the 2 conditions.

There is a list of disorders that can cause the same symptoms as Celiac, some are more common to be connected to Celiac. Testing can help rule out other possible conditions.

[GottaSki]

I'd say Tommy's Mommy is smart to question the need of the endoscopy. Positive blood plus improved health by removing gluten = Celiac Disease. Given his reaction to gluten I don't see a benefit to adding it back into his diet to confirm what you already know to be true. Additionally, since he has already had improvement gluten-free - the endo may not be accurate even with a gluten challenge.

Good Luck

[SensitiveMe]

I cannot give you a good reason for an endoscopy and think you should stick to your Mommy instincts. If you want to demand a good reason from the doctors then go ahead and stick to your Mommy guns and demand it.

I was in a similar situation once but is was not over celiac or gluten. My daughter was diagnosed with having Berget's syndrome (it is a benign condition in which the kidneys put out protein in the urine, and sometimes there is visible blood in the urine). There is no treatment for it. She was 10 years old and after diagnosis we were referred to a kidney specialist. The specialist insisted it was necessary to take her to the operating room and under general anesthesia take a kidney biopsy to confirm the diagnosis. My Mommy instincts said no and after talking with her regular doctor I refused because I did not feel confirmation of a previously diagnosed condition was sufficient reason for any biopsy.