Super Star Mama

Trying to be a Super Mom of Kids with Gut diseases and Food Allergies

For beginners

THE DIAGNOSIS

The first time I had heard of eosinophilic esophagitis is when my now 10 year old daughter was 6 years old.  She had been diagnosed with she was 2 years old but nobody said anything about it. She started have symptoms of vomiting right after a meal.  The meal was always either pasta or pizza. It was completely undigested food. She has always had GI issues since she was 12 months old. So this was not too much different except the way it all happened was odd.  Since she is one of my girls that has lymphocytic colitis as well, I thought it was related to that. I was looking at her pathology report from when she was two and I saw the eosinophilic esophagitis diagnosis. I decided to look up what the symptoms were in kids.  Sure enough vomiting was right on top of the list as well as weight loss, nausea, food getting stuck. Brynlee has always had an issue with Failure to Thrive but she was losing weight. At age 6, she was only 32 pounds. We again, started the road at the Children’s Hospital in Salt Lake to find out what else was going on.  They did another endoscopy and colonoscopy and sure enough her esophagus and parts of her colon were inflamed with eosinophils and of course the lymphocytes in her colon, which was causing the chronic diarrhea. This is only seen through biopsy. You cannot physically see eosinophils or lymphocytes in the gut. So we got another confirmed diagnosis of EOE again and of course, the lymphocytic colitis based off the biopsy results.  

I demanded that somebody tell us how to treat this issue.  It was a huge problem to me that my child was not growing and was vomiting all the time.  Nobody could help. They just told us to go to another allergist (Our 4th one by this time).  She never tested positive for food allergies on blood or skin prick tests so I was not hopeful (this is common in EOE patients).  The Allergist just had us do the elimination diet of the top 6 allergens. Dairy, Gluten Egg, Soy, Shellfish and peanut.  Starting out with that was so difficult. At the time, she was my only child on the “special diet” and she was not happy that we took cheese away from her.  Out of the 6 top allergens, we figured that gluten and possibly dairy were her contributors to the vomiting.

Fast forward to today.  Brynlee is now 10 years old and has the best doctors treating her (and all my kids) then they ever have.  The GI doctor and Allergist (who I happen to work with) make such a good team. They gave me direction, and an understanding to what this disease was.  They just didn’t throw me out into the world and say “there ya go...good luck”

We met with the GI doctor when we first moved here to Southern Utah.  I had had it with Salt Lake doctors that were not helpful. He referred us to the Allergist in town that actually specialized in EOE and other food allergies.  I felt hope for once. I felt like somebody care enough about my kids to help me treat their diseases.

From our first appointment with the allergist, we were educated and 2 of the 3 kids were tested for the top 4 foods that affect eosinophilic esophagitis the most.

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THE EOE DIET

We were told that the 4 foods that affected the eosinophils in the body the most were Dairy, Gluten, Soy and Egg.  A lot of times patients find relief from their symptoms by just avoiding dairy. Dairy is the main culprit for causing all that inflammation in the esophagus. So when a patient first gets diagnosed, the allergist has them.

  1. Eliminate dairy from the diet by itself or along with
  2. Eliminating gluten from the diet

Sometimes along with diet elimination, there needs to be other treatments with steroids or a PPI (nexium or prilosec).

If symptoms still persist, then patients are told to

3. Eliminate Soy and Egg

Every doctor treats EOE differently to some degree.  They have found that dairy is stil the main food to avoid.

Did you know there are seriously 25+ names for dairy in the ingredients list of foods?  I honestly only knew of a few. It is difficult to avoid all of the derivatives of dairy.  This also goes the same for gluten, soy and egg as well.

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DIFFERENT NAMES FOR DAIRY

It has taken a while to find foods that my picky kids will eat.  The most difficult dairy to avoid is cheese. I don’t know if my kids will ever go without cheating on cheese occasionally.  It was a staple in our house.

Here is a list of the different names of dairy

CONTAIN MILK

The following ingredients found on a label indicate the presence of milk protein. All labels should be read carefully before consuming a product, even if it has been used safely in the past.

Milk — acidophilus milk, buttermilk, buttermilk blend, buttermilk solids, cultured milk, condensed milk, dried milk, dry milk solids (DMS), evaporated milk, fat‐free milk, fully cream milk powder, goat’s milk, Lactaid® milk, lactose free milk, low fat milk, malted milk, milk derivative, milk powder, milk protein, milk solids, milk solid pastes, nonfat dry milk, nonfat milk, nonfat milk solids, pasteurized milk, powdered milk, sheep’s milk, skim milk, skim milk powder, sour milk, sour milk solids, sweet cream buttermilk powder, sweetened condensed milk, sweetened condensed skim milk,whole milk, 1% milk, 2% milk

Butter — artificial butter, artificial butter flavor, butter, butter extract, butter fat, butter flavored oil, butter solids, dairy butter, natural butter, natural butter flavor, whipped butter

Casein & caseinates — ammonium caseinate, calcium caseinate, hydrolyzed casein, iron caseinate magnesium caseinate, potassium caseinate, sodium caseinate, zinc caseinate

Cheese — cheese (all types), cheese flavor (artificial and natural), cheese food, cottage cheese, cream cheese, imitation cheese, vegetarian cheeses with casein

Cream, whipped cream

Curds

Custard

Dairy product solids

Galactose

Ghee

Half & Half

Hydrolysates — casein hydrolysate, milk protein hydrolysate, protein hydrolysate, whey hydrolysate, whey protein hydrolysate Ice cream, ice milk, sherbet

Lactalbumin, lactalbumin phosphate

Lactate solids

Lactyc yeast

Lactitol monohydrate

Lactoglobulin

Lactose

Lactulose

Milk fat, anhydrous milk fat

Nisin preparation

Nougat

Pudding

Quark

Recaldent

Rennet, rennet casein

Simplesse® (fat replacer)

Sour cream, sour cream solids, imitation sour cream

Whey — acid whey, cured whey, delactosed whey, demineralized whey, hydrolyzed whey, powdered whey, reduced mineral whey, sweet dairy whey, whey, whey protein, whey protein concentrate, whey powder, whey solids

Yogurt (regular or frozen), yogurt powder

MILK IS SOMETIMES FOUND IN

Natural flavoring

Flavoring

Caramel flavoring

High protein flour

Lactic acid (usually not a problem)

Lactic acid starter culture

“Non-dairy” products (may contain casein)

Rice cheese

Soy cheese

However, if the product is an FDA regulated food, the word "Milk" must appear on the label.

SHOULD BE SAFE

These milk derivatives should be safe for most individuals with milk allergy, but check with your doctor before using.

Lactoferrin

Tagatose (Naturlose®)

Source: kidswithfoodallergies.org

My kids favorite Dairy free products are:
Katz Gluten Free Glazed Chocolate Gluten-Free Donuts No Gluten, Dairy or Soy

 
1-2-3 Gluten-Free Brownie Mix   (NO Gluten, Wheat, Dairy, Casein, Peanuts, Tree Nuts, Eggs and Soy).

Breads From Anna Apple Gluten-Free Pancake and Muffin Mix  Free of all allergens including corn, nuts, yeast, dairy, wheat, soy

I will post our other favorite products on the next post.  I am excited to share our most favorite gluten, diary free brand with you.

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