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Staceyshoe

Eosinophilic Esophagitis?

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Does anyone know about this or know of a forum where I can get questions answered? I'll write my story below and try to be brief.

My son has a history of severe silent GERD which included an inability to swallow. When he started on Prevacid at age 2, he gained 5 lbs in 6 wks and then the meds stopped working. They doubled the dosage and it was still ineffective. He was unable to swallow, refused to eat for days up to 5 days at a time, lost weight, and had severe pain in his neck and chest that interfered sleep and sometimes caused him to cry for hours on end. He's been off Prevacid for 2 1/2 years with very few symptoms in that time.

CURRENT SITUATION: We recently an endoscopy to rule out celiac (He has the gene, bloodwork was inconclusive, and he's IGA deficient). Is there a link between IGA deficiency and EE? The scope was negative for celiac, but he was diagnosed with esophagitis. I've had quite a time getting more info about his results but finally talked with someone today who said that there isn't a noted

diagnosis of EE on his chart. She said that the scope showed "up to 41 eosinophils per high power field." He has a few allergies: pollen-severe, dog-moderate, almonds-mild. He was completely without symptoms for weeks prior to and at the time of the scope. What I read online says that more than 15 eos per high power field would result in a diagnosis of EE.

Can someone help me make sense of this? Does he have EE? Is there a better place to get answers about this disorder?

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EE is not an uncommon finding in us. Have you tried him on the gluten free diet? False negatives with children are even higher than they are in adults. IMHO it would be a good idea to do a good strict trial of the diet with him to see if it helps his issues.

Also please note that if they are only testing for DQ2 and DQ8 as far as genes go then someone can still have issues with gluten even without those 2 genes. Gene testing is not diagnostic, it is just a part of the diagnostic puzzle and there are up to 27 genes associated with celiac and gluten intolerance.

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My daughter is diagnosed with both Celiac and EE.

We have 2 years diagnosed experience.

The mystery of EE

unknown cause.... most likely suspect, food or airborn allergen

Documented seasonal flare ups

Eosinophils have a 12 day reaction time once activated

# of eosinophils for diagnoses different for children and adults. Lower numbers are sometimes diagnosed as GERD

Things have changed in the last 2 years since diagnoses. Eosinophilic disorders through the GI track are now all lumped together.

Definately more diagnosed cases.

At diagnoses she was given a steroid inhaler that was modified to just swallow the medication. Prevacid seemed to help at first. Now it has no noticeable difference, and not worth the prescription price or now over the counter price.

She did try the amino acid formula (Yuck) if that is the only option kids usually end up on a feeding tube.

She was sent for allergy testing. She is not "allergic" to anything.

ELIMINATION diet

Elimate all top 8 allergens (and peas) from the diet, keep a journal of amount of food time of ingestion, BM, mood check, and symptoms. Remember eosinophils are active for 12 days. If you get to a clear symptoms better stage then you can add something back in. (Took almost 2 years to go through this, just couldn't stand to take the chance she would get sick agin.)

For uncomfortable symptoms. Frozen stuff. Popsicles, Slurpees, frozen banana chips, and for some reason my daughter loves salad. It is her go to thing when she doesn't feel good.

We have noticed spring and fall flares. So she falls into every mystery symptom except more males are stereotyped as EE sufferers.

I am trying the honey theory. Honey does not bother her. Should be soothing antibacterial. If the honey is local is should be a non allergen response exposure to local allergens. The theory is... it should cause the body to not have as severe response to the allergens over time.

A vet reccomended worming medication as eosinophils are the natural immune response for parasites.

Better yet your child should have been tested for parasites. You will have to take stool samples for testing. It's quite yucky but you will live through the experience.

I have to get going...

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Gluten can be a "trigger" for the Eosinophil response.

Have you noticed light cream colored spots on the tonsils?

Are you noticing bad breath, smells like "old puss"?

Swollen tonsils?

Dark circles under the eyes?

The pain symptoms, male, difficulty sleeping, and GERD all fit for an EE diagnoses.

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I think there is a link between the IGA defiency but I haven't found documentation on that yet.

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A vet reccomended worming medication as eosinophils are the natural immune response for parasites.

Better yet your child should have been tested for parasites. You will have to take stool samples for testing. It's quite yucky but you will live through the experience.

Please note, do not under any circumstances give a child pet worm medicine. (NOt that I think Mommida was suggesting that). Go to your doctor for a stool test if you think parasites may be an issue.

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