Milk and formula-induced allergies may present with rash (atopic dermatitis/eczema), vomiting, wheezing, and/or cough.  Cow’s milk allergy is the usual cause. But studies show that 10-14% of infants with cow’s milk allergy also have cross reaction to soy (Of course. that also means that 86-90% will not have an allergy to soy. But there are also a few infants and children who do have traditional allergy and instead have what is called a non-IgE reaction to milk. Those children may have a 40% cross reactivity to soy (meaning again 60% of those few infants should tolerate soy). 

And thus, the majority of infants are likely to tolerate soy, allows most milk-intolerant infants to use soy formulas safely and with less expense than immediately employing an extensively hydrolyzed casein formula ($14 vs 25 per can, a difference of over $70/month for Nutramigen or Alimentum).  

This differs from other organizations' recommendations to use an extensively hydrolyzed casein formula. Those more expensive formulas can be used in those who do not wish to use soy. In the past, there has been concern about the phytoestrogens contained in soy husks; however, studies have shown that this weak estrogen has not made any difference in sexual development or fertility for adults who were originally raised on soy decades before.  

When there is a strong family history of allergy (marked by asthma, eczema, allergic rhinitis or food allergy in a brother, sister or parent), a European study (that did not include soy as an option) showed that elimination of cow’s milk with an extensively hydrolyzed formula used instead may lessen the eventual development of atopic dermatitis and childhood food allergies. As a result, your physician may wish to try an extensively hydrolyzed casein formula first or after a soy trial.

 For older infants and toddlers who would normally be on actual cow's milk (after they've transitioned from formula) but are unable to tolerate the milk. Soy "milk" remains the first choice because it has the most protein of all the alternative milks (see the table below). But if a toddler is unable to tolerate the soy or has an allergy to it, the other alternative milks can be tried, making sure the toddler has other good sources of dietary protein.

                                      Protein in 8 oz

                             Cow's milk                    8 grams

                             Soy                               5-7

                             Rice                               1-2

                            Almond                         1-2

 Adapted from An Evidence-Based, Cost-Sensitive Infant Formula Algorithm for the Infant on Georgia’s WIC Program. Stanley A Cohen and Kylia Crane RD, 2013



Another thank you to Bailey Koch for her excellent list of resources for you. These may or may not distinguish between Celiac and Non Celiac Gluten Sensitivity



365 Days of Cooking-

  • Gluten free crock pot recipes 

University of Chicago Celiac Disease Program

·         Offer Gluten free care packages to the newly diagnosed Celiac patient


·         Great blog with recipes and product reviews

·         Cream of chicken soup recipe!

·         GF candy list 

Allergy Eats

·         Easy to use online guide to allergy and intolerance friendly restaurants

·         Includes over 600,000 US restaurants rated by individuals



Allergy Free Mouse- 

        Allergy Free guide to Disney World

 American Celiac Disease Alliance


 Canadian Celiac Association


 Celiac Central –

·         Online community of families impacted by celiac disease

·         National Foundation for Celiac Awareness’ Healthcare and Patient Services programming

Celiac Disease Foundation


Celiac Sprue Association/USA, Inc


Clan Thompson’s Celiac Site


·         Food and Drug Smartlist

Friends of Celiac Disease Research, Inc


Food Allergy Friendly Network-

·         Search for food products, retailers and restaurants that target your dietary needs

GFree Cuisine


·         Weekly gluten free online cookbook that includes a customized grocery list

Gluten Free Connect


·         Gluten free samples, coupons and more mailed to you quarterly

The Gluten Free Consumer

  • Recipes
  • Products rated by consumers on
    • Ease of preparation
    • Taste & Texture
    • Ingredient quality
    • Appeal
    • Price & Availability

 Gluten Free overflow –

  • List of foods organized by manufacturer



·         Gluten free recipe exchange

 Gluten Free Dietitian


·         Tricia Thompson, MS, RD

 Gluten Free medications:


·         Compiled by a Pharmacist

Gluten Free on the Go


·         Online directory of gluten free restaurants

Gluten Free Restaurant Awareness Program


·         Restaurants choose to participate at different levels

·         Restaurant staff is trained on the gluten free diet

Gluten Free Overflow-

  • searchable database of gluten-free products
  • currently lists over 9,000 gluten-free products across a broad range of mainstream brands and categories

 Gluten Free Passport iPhone or iPad application

·         Can be purchased at the Apple iTune Apps Store

  • Reviews of colleges by students

 Gluten Free Watchdog


·         Food testing site

·         $4.99/month; new reports added each month

Gluten Intolerance Group


·         Gluten Free Restaurant Awareness Program

Jules Gluten Free


·         Offers gluten free products, recipes and other resources

National Foundation for Celiac Awareness


Carol Fenster


·         Offers gluten free products, recipes and other resources

Recipe Renovator


·         Can email Stephanie recipes that need to be adapted to the gluten free diet

Shelley Case, RD


 Stockpiling Moms-

  • Coupons for gluten free foods

 Zeer Select


·         Monthly subscription fee of $4.95

·         Search products by category, brand, product nae or UPC code

·         Updated with an average of 500 new products added or updated weekly

 Gluten Intolerance Group of Atlanta


·         Members receive a monthly newsletter and offer an Atlanta area restaurant guide

 Raising our Celiac Kids (R.O.C.K.)


·         Great resource for parents

·         Kid friendly, gluten free events

·         Camp Weekaneatit:



Acceptability of foods and Food Ingredients for the Gluten-Free Diet Pocket Dictionary

Canadian Celiac Association


Amy Goes Gluten Free

Available from the Celiac Disease Center at Children’s Hospital of Boston


Cecil Celiac is Sleeping in Gabe’s Gut

Fun educational tool for educating young children with Celiac


Cecilia’s Marketplace-

Offer a variety of grocery guides:

  • Gluten Free Grocery Guide
  • Gluten/Casein Free Grocery Guide
  • Gluten/Casein/Soy Free Grocery Guide
  • Gluten Free Mexican Cookbook


Celiac Resource Guide: Helping Navigate Life’s Detour

Julianne Karow

Personal resource guide for individuals with Celiac disease


Fun with GF/LG Food


  • Gluten free, allergy free, low-glycemic index recipes
  • Vegan and meat-eater friendly


Gluten-Free Friends: An Activity Book for Kids

Nancy Patin-Falini, MS, RD


Gluten-Free Baking with The Culinary Institute of America:  150 Flavorful Recipes from the World’s Premier Culinary College.

Richard Coppedge Jr and George Chookazian


Gluten Free in Five Minutes

The Ultimate Gluten-Free Cookie Book

Roben Ryberg


Gluten-Free Grocery Guide

Gluten-Free Restaurant Guide


Gluten-Free Dining Cards


Gluten and Allergy Free Passport

Offers an app for iphone/ipod


1000 Gluten-Free Recipes

Gluten Free Quick and Easy

Carol Fenster, PhD


The Gluten-Free Diet: A Comprehensive Resource Guide, Expanded Edition, 2006

Shelley Case, RD


The Gluten-Free Kid: A Celiac Disease Survival Guide

Melissa London


The Gluten-Free Gourmet: Living Well Without Wheat.

Bette Hagman


So, What Can I Eat Now?

Rhonda Peters

Cookbook with recipes free of dairy, soy, eggs and gluten

Available on and


Timmy’s Gluten Free Safari

Eesha Dave


More From the Gluten-Free Gourmet:  Delicious Dining Without Wheat. 

Bette Hagman


The Gluten/Wheat Free Guide to Eating Out

Good Health Publishing, LLC


The Ultimate Gluten-Free Cookie Book

  • 125 Favorite cookie recipes made gluten free


Gluten Free in Five Minutes

  • 123  rapid recipes for breads, rolls, cakes, muffins, more



Allergic Living


Delight Gluten Free Magazine


Gluten-Free Living


Living Without Magazine


Celiac disease can occur with other diseases. First, it can lead to those diseases. like osteoporosis, because of the decreased absorption of calcium, or anemia, because of decreased iron absorption. Those who have other autoimmune disorders also have a greater risk of having celiac disease, which is also an autoimmune disorder. And there are other disorders where the link between the two is not well understood. Additionally, gluten sensitivity seems to be more common in a number of disorders and that is being further explored.


Consequences of Celiac Disease

  • Anemia (from poor iron absorption or from low B12 and folate because of a gluten restricted diet)
  • Osteoporosis (from poor calcium absorption and earlier menopause)
  • Dermatitis herpetiformis (the rash that can be present in adults before they know they have celiac disease
  • Infertility (Approximately 3-4 percent of women who have infertility have unrecognized celiac disease and unknown percent of men with infertility also have celiac disease). Also women who have uncontrolled celiac disease can have shorter periods and earlier menopause
  • Intestinal cancers are more prominent in untreated celiac disease. On a gluten free diet that increased risk vanishes
  • Migraines (sometimes removing gluten improves migraines)
  • Depression is common in those who have untreated celiac disease. This may simply be because of not feeling well (though some will argue that the leaky gut resulting from celiac disease causes a chemical reaction). either way, a gluten free diet often helps.
  • Anxiety is not as common as depression, but it may be there for the same reasons--and it too improves on a gluten free diet 

Other Autoimmune Disorders

Type 1 Diabetes occurs in childhood and may be followed by celiac disease in 3-8 percent of these children. It may first be recognized when blood sugars are jumping up and down and harder to regulate with insulin

Thyroid disease patients, especially those with Hashimoto's thyroid inflammation, also seem to have a 3-6 percent crossover with celiac disease

Juvenile arthritis patients do have a higher risk of celiac disease, but it is not clear whether treating celiac will improve the arthritis

Sjogren's Syndrome which is a disease that affects mouth and eye secretions, though usually in adults over 40, has a higher risk of celiac disease, as well as lupus, arthritis and other autoimmune disorders.  

Liver diseases are more common in patients who have celiac disease. this includes but is not limited to autoimmune hepatitis.

Down syndrome is a genetic disorder, but for some reason, celiac disease (which can be seen in 3-8 percent of those with Down ) and other autoimmune diseases occur more frequently.

Crohn's disease is another autoimmune intestinal disorder. Celiac does not seem more prominent in this group, but when it occurs, the Crohn's problems seem harder to control even on a supposedly strict gluten free diet.


Other disorders

Turner's syndrome is a genetic disorder with as many as 8 percent of patients having celiac disease, though the reason is not clear.

Williams syndrome, another genetic disorder, also has 8-10 percent with celiac disease, perhaps because of general metabolic problems that are more common in children with genetic disease, though that is certainly not clear at this time.


Non-celiac Associations

Irritable Bowel Syndrome in adults has numerous authors who believe that a group of their patients improve on a gluten free diet even when they do not test positive for celiac disease.

Depression and anxiety as noted above may improve for patients who are removed from a gluten free diet even when they do not have celiac disease  (to establish that relationship, see our blogpost on non celiac gluten sensitivity).

Autistic Spectrum Disorder patients (including those with pervasive developmental disability (PDD) and Asperger syndrome are often placed on gluten free (and sometimes casein free) diets with parents reporting some improvement for their children. We presented our experience (at the North American Society of Pediatric Gastroenterology, Hepatology and Nutrition in 2000) with a small number of children whose parents had eliminated both casein and gluten. Twenty-five percent (25%) of the parents indicated that they had seen an improvement in their children's intestinal and behavioral symptoms)

Hyperactivity: Dr. Peter Green thinks he has seen in increase in gluten sensitivity in children and adolescents who have problems with hyperactivity (again how to test for that association is contained in the post on non-celiac gluten sensitivity)

Bottom Line: Celiac and non-celiac sensitivity can be seen in numerous conditions. It is important to distinguish which type of gluten sensitivity exists with appropriate testing. 


Further Resource:  





You may be the most gluten-conscious person in the world, but there's still a chance that gluten will enter your gluten-free child's diet. Not to worry. Gluten is not poison. It may temporarily cause some discomfort, or diarrhea or some of your original symptoms when gluten was regularly in your child's diet. But a minimal exposure when something slips is likely to be quickly repaired when the gluten source is removed.

If that sounds too vague for you, that's because different people have different levels where gluten will upset their systems. In essence, some people are more sensitive than others. Understand that even gluten-free products can have tiny, tiny amounts of gluten (up to about 10 mg per pound of bread, for example). Since researchers estimate that it takes about 10 mg to do any intestinal damage, your child would have to eat an entire pound of that bread to notice any symptoms.  On the other hand, regular bread contains much larger amounts and a single slice might cause symptoms that last for several days.

But the intestine is a forgiving organ, with some of the most rapidly growing tissues in the body, and constantly repairing itself. So minimal, infrequent exposure is unlikely to cause long-term problems, though it may cause short-term symptoms. On the other hand, repeated exposure does have the potential to cause more severe symptoms and the consequences that we try to avoid by treating celiac disease and non celiac gluten sensitivity in the first place.

Do try to be thoughtful in how you present this to your children and others. I do recall a parent telling me she had tried to steer her son away from gluten by telling him that gluten and wheat were poison. Of course, that backfired when she took her son into the grocery and he was screaming as they went through the bread and cereal aisles, wanting to leave immediately because of all the poison surrounding him.    


Bailey Koch RD has the following tips for you:

  • Plan ahead! 
  • Call the restaurant or look them up on the internet to determine which foods are safe for you to eat.  Be informative, not demanding.
  • Identify yourself and your special dietary needs.  Be dramatic and tell them you have a severe wheat allergy.  Most people understand an allergy but may not be familiar with celiac disease or gluten.
  • Carry a "restaurant card" with you.

      This is a credit card-size allergy list stating what you can eat and what you can't--and              how to avoid cross contamination (see our blogpost on hidden gluten)  

  • Be very specific when ordering.
  • Order simple foods.
  • Send un-safe foods back!
  • Tip well if served well! 
  • At fast food restaurants, go inside to order.
  • If attending a party, offer to bring a gluten-free dish.  You can always eat at home so you won’t be tempted by gluten-containing or questionable foods.
  • Avoid buffets
  • Ensure that fried foods are cooked in dedicated fryers.


What about School?

Section 504 of the Rehabilitation Act of 1973

·         Law states that patients with Celiac Disease have the right to safe, gluten free meals and snacks in educational programs that receive federal funds.

·         Requires a letter from your physician.  Letter must be very detailed and explain the following:

o   What is Celiac Disease?  Why does it require a gluten free diet?

o   Not adhering to a gluten free diet WILL affect learning

o   Foods to be omitted

o   Foods to be served

·         See additional handouts provided from the American Celiac Disease Alliance

We will keep you updated with our suggestions and recommendations --and we will add those from other parents and families as well.