Endoscopy Yesterday.

[KeegMiles]

So yesterday we did the Endoscopy on my 2.5 year old. The doctor said he had eosinophilic esophagitis. We are starting prevacid. He has tested positive for eggs, milk, wheat, & whey allergies. The said he has some antibodies for celiac & the gene. I didn't know to ask for specific numbers for these things so I will be asking at the follow up appointment. He has constipation, dark circles, bruises easily, extreme mood swings, weight loss (three pounds in three months), & doesn't eat.

So on to my question, can he have EE & have celiac or is the EE actually the damage from celiac, but misdiagnosed?

Thanks so much for your help.

[Cara in Boston]

I don't know if I will be that helpful since I am speaking from my own (adult) experience but . . .

I was on a prevacid-like medication (2X a day) for over a year for GERD (it helped, but not completely) before being diagnosed with gluten intolerance. Within a week of being gluten-free I was able to stop taking it and have not had any symptoms since then. I only wish the doctor had thought about the cause and not just the symptoms a year ago . . .

Also, my youngest son (6) has celiac with very few classic symptoms. Within weeks of being gluten-free we saw so much improvement in his behavior, mood, sleep, dark circles, just everything. It was like a miracle. He had symptoms I didn't even know about until I noticed they were gone. It is hard work (at first, it gets easier) but so worth it.

It is my understanding that positive for antibodies means positive for celiac - regardless of what the biopsy says. Avoid all gluten - not just wheat.

Cara

[StephanieL]

THere is a great site for food allergies called Kids with Food Allergies. They have a section for EoE only! I think you would get a lot of support there! I am sorry you are having to deal with all this. Hang in there!

Also, I am not 100% sure but I think the damage from EE and Celiac are two different things.

[Skylark]

We've had people on the board who got diagnosed with EE that went away gluten-free.

[KeegMiles]

Thanks so much for all the replies. Its just so hard to navigate this entire new world we have been handed.

DS has never been a good eater, always on the small side. I have been fighting with doctors to figure out what is wrong for two years. Finally our speech therapist, who we see for feeding therapies, said that we needed to see the GI. So once we got the ball rolling, it has been relatively fast journey to here.

We were planning on going gluten free anyway. But I was just curious because I think the doctor only went as far as the duodenum and I didn't think that was far enough. But we will see what they say in a couple of weeks. Right now, we are working on slowly trying to weed everything out because he is a horrible eater and extremely picky.

[mommida]

My daughter has both Celiac and Eosinophilic Esophagitus. The Celiac was diagnosed when she was 17 months old and the EE was diagnosed when she was 6. She is 9 years old now.

Going through an elimination diet helped identify her "triggers" and she manages EE by diet alone. When she was first diagnosed she was on Previcid and a modified steroid inhaler to help heal the damage.

There is now a proven connection between EE and Celiac. So the recent medical opinion is to have both diseases.

[mommida]

3 years experience with EE and constipation is still a major issue. (She takes daily fiber tablets.)

I do just want to give you a heads up on the constipation/ Urinary tract/ bladder infection perfect storm. The constipation can make it hard to completely empty the bladder. You can notice the urge and pressure to urinate. So the patient can start to ignore this first stage of a UTI and it can very easily end up being a bladder infection. This has been happening frequently for my daughter. I don't know if it is just that much more in female anatomy or if it will be an issue for males too.

At first diagnoses Slurppees or Icee drink were very good at soothing the esophagus. We have tried every type of natural anti-inflammation food. Like honey, chicken soup, and you name it, we tried it. Always makes sure your child sits down to eat, chews food thoroughly, and NEVER rush them to eat.

Keep a food and airborn allergen journal. We have noticed a seasonal pattern. We live in the Midwest and it seems to be ragweed.

The only clear distinction between the two disorders is Eosinophil count and exact location of the damage. EE damage is specifically in the Esophagus with a high Eosinophil count. (It is possible to have eosinophils in any area of the GI track.)