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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store.

What Are The Effects Of A Soy Allergy?

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Hi, can someone here with a soy intolerancy please tell me if the effects are the same as being glutened...i'm trying to figure out if soy is causing all of this extra gas :unsure: .


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I don't have a specific soy intolerance that I know of, hopefully someone will be along shortly who does. But, I'm replying because I just started a modified elimination diet today on the advice from my of the foods I will need to avoid is soy and the reason is because my doctor said that people with gluten intolerance sometimes also react to things like soy, so my guess is that the reaction could be similar. I know there are lots of people here who are definitely intolerant to it...I'm just trying to find out, so I know you'll get some replies soon.


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I'm going to copy some articles over that I had saved. Don't know if they will help or not. We went off soy before testing, so I can't help with effects. It is a bean though......

Soy Allergy

From Judy Tidwell,

Your Guide to Allergies.

FREE Newsletter. Sign Up Now!

Soy Has at Least 15 Allergenic Proteins

Soy, also referred to as soya, soy bean, or glycine max, is among the main foods that produce reactions worldwide -- mostly, but not exclusively, in infants.

It is not completely certain which specific component of soy is responsible for reactions, but at least 15 allergenic proteins have been identified.

The way soy foods are processed can affect allergenicity. All soy products may not cause reactions. Some fermented soy foods may be less allergenic than raw soy beans. Soybean oil, which does not contain protein, may not produce symptoms. It just depends on the individual.

Symptoms of Soy Allergy

The reported symptoms of soy bean allergy include: acne, angioedema, rhinitis, anaphylaxis, asthma, atopic dermatitis, bronchospasm, cankers, colitis, conjunctivitis, diarrhea, diffuse small bowel disease, dyspnea, eczema, enterocolitis, fever, hypotension, itching, laryngeal edema, lethargy, pollinosis, urticaria, vomiting, and wheezing.

Cross Reactivity

Those allergic to soy beans may also cross react to certain foods, such as peanuts, green peas, chick peas, lima beans, string beans, wheat flour, rye flour, and barley flour.

Where Is Soy Found?

A great many foods already in your kitchen cupboard contain products that contain some type of soy food.

Listed below are the terms associated with soy foods:

Hydrolyzed vegetable protein (HVP) is a protein obtained from any vegetable, including soy beans that is a flavor enhancer that can be used in soups, broths, sauces, gravies, flavoring and spice blends, canned and frozen vegetables, meats and poultry.

Lecithin is extracted from soybean oil and is used in foods that are high in fats and oils to promote stabilization, antioxidation, crystallization, and spattering control. It is used as an emulsifier in chocolate. Most infant formulas contain soy lechithin.

Miso, used to flavor soups, sauces, dressings, marinades and pâtés, is a rich, salty condiment made from soy beans and a grain such as rice.

Mono-diglyceride, another soy derivative, is used for emulsion in many foods.

Monosodium glutamate (MSG) may contain hydroylzed protein which is often made from soy.

Natto, more easily digested than whole soy beans, is made of fermented and cooked whole soy beans.

Natural flavors, listed on ingredient labels may be a soy derivative.

Soy cheese, a substitute for sour cream or cream cheese, is made from soy milk.

Soy fiber whether okara, soy bran, and soy isolate fiber are used as food ingredients.

Soy flour, whether natural, defatted, and lecithinated, is made from finely ground roasted soy beans. They are often used to give a protein boost to recipes.

Soy grits, made from toasted coarsely cracked soy beans, is used as a flour substitute.

Soy meal and soy oil are used in a number of industrial products, including inks, soaps, and cosmetics.

Soy milk is used alone or can be made into soy yogurt, soy cheese, or tofu.

Soy oil, the natural oil extracted from whole soy beans, is the most widely used oil in the United States. Soy oil is used to make most margarines, Crisco and other vegetable shortenings, prepared pasta sauces, worchestershire sauce, salad dressings, mayonnaise, canned tuna, dry lemonade mix, and hot chocolate mix. Most commercial baked goods like breads, rolls, cakes, cookies, and crackers contain soy oil. Some prepackaged cereals are also made with soy oil.

Soy protein can be labeled as soy protein concentrate, isolated soy protein, textured soy protein (TSP), and textured soy flour (TSF). Textured soy flour is widely used as a meat extender. Most soup bouillons contain some form of soy protein. Many meat alternatives contain soy protein or tofu.

Soy sauces, the most common being Tamari (a by-product of making miso), Shoyu (a blend of soy beans and wheat), and Teriyaki (with added sugar, vinegar and spices), are dark brown liquids made from soy beans that have undergone a fermenting process.

Soy yogurt, made from soy milk, is an easy substitute for sour cream or cream cheese. Non dairy frozen desserts are made from soy milk or soy yogurt.

Tempeh, a traditional Indonesian food, is a chunky, tender soybean cake.

Tofu, also known as soybean curd, is a soft cheese-like food made by curdling fresh hot soy milk with a coagulant. It is a bland product that easily absorbs the flavors of other ingredients with which it is cooked. When mixed with other ingredients it can simulate various kinds of meat.

Vegetable oil, a generic term, is usually 100 percent soy oil or a blend of soy oil and other oils.

Vegetable protein is often the term used for soy protein.

Vitamin E contains soy bean oil.

If you are allergic to soy, it is best to read all ingredient labels, and if in doubt, contact the manufacturer of the product before purchasing it.

Soy Protein Intolerance

Last Updated: March 23, 2005

Author: Stefano Guandalini, MD, Director, University of Chicago Celiac Disease Program, Section Chief of Gastroenterology, Hepatology and Nutrition; Professor, Department of Pediatrics, University of Chicago Comer Children's Hospital

Coauthor(s): Agostino Nocerino, MD, PhD, Chief of Pediatric Oncology, Department of Pediatrics, University of Udine, Italy

Stefano Guandalini, MD, is a member of the following medical societies: American Gastroenterological Association, European Society for Pediatric Gastroenterology, Hepatology and Nutrition, Italian Society for Pediatric Gastroenterology and Hepatology, Italian Society of Pediatrics, and United European Gastroenterology Federation

Editor(s): Jorge Vargas, MD, Professor, Department of Pediatrics, Division of Pediatric Gastroenterology, University of California at Los Angeles School of Medicine; Robert Konop, PharmD, Director, Clinical Account Management, Ancillary Care Management; David Piccoli, MD, Chief, Division of Gastroenterology and Nutrition, The Children's Hospital of Philadelphia; Professor, Department of Pediatrics, University of Pennsylvania School of Medicine; Steven M Schwarz, MD, FAAP, FACN, Chair, Department of Pediatrics, Long Island College Hospital; Professor of Pediatrics, State University of New York, Downstate Medical Center College of Medicine; and Steven M Altschuler, MD, President and CEO, Children's Hospital Foundation, Children's Hospital of Philadelphia

Background: Soy-based formulas were introduced in infant nutrition 80 years ago, when their use was recommended for the treatment of summer diarrhea. Seventy years ago, the use of soy-based formulas was extended to the treatment of cow milk intolerance. In the 1970s, use of soy-based formulas became common, and in the 1970s and 1980s, US consumption was around 25% of that of cow milk–based formulas.

In the last few years, interest in soybeans and soybean components has markedly increased, mainly because of the potential influence of soy on the development of heart disease, cancer, kidney disease, osteoporosis, and menopause symptoms. Unfortunately, soy protein formulas (SPFs) can cause allergies and other intolerance reactions. For many years after the first description by Duke in 1934, soy was considered, on the basis of animal studies, a weak sensitizing protein. In the 1960s, several other authors confirmed the potential allergenicity of SPFs.

A higher prevalence of soy intolerance has generally been reported in non–immunoglobulin E (IgE)-associated enterocolitis and enteropathy syndromes. Authorities have failed to reach consensus on the risk of feeding allergic or nonallergic infants with soy protein milks. This divisive clash of opinion is also reflected in the mutually antagonistic stances adopted by 2 important scientific societies, the European Society for Pediatric Gastroenterology, Hepatology, and Nutrition (ESPGHAN) and the European Society of Pediatric Allergy and Clinical Immunology (ESPACI). However, the general agreement is that a significant number of children with cow milk protein intolerance develop soy protein intolerance when soy milk is used in dietary management.

Pathophysiology: Two heat-stable globulins (beta-conglycinin, molecular weight (MW) 180,000 and glycinin, MW 320,000) constitute 90% of the pulp-derived proteins. Immunoblotting and competitive enzyme-linked immunosorbent assays have identified a 30 kD glycinin from soybeans that cross-reacts with cow milk caseins and that is constituted by 2 polypeptides (A5 and B3) linked by a disulphide bond. The protein's capacity to bind to the different antibodies relies on the B3 polypeptide. However, other soy proteins can act as allergens in humans. At least 9 proteins with MW ranging from 14,875-54,500 were found to react with human IgE in patients with asthma. Moreover, after enteric digestion, a number of potential antigens are generated at the mucosal surface.

According to some studies in animal models, soy proteins appear to be less sensitizing than cow milk proteins; however, infants with a previous history of cow milk protein intolerance have a greater risk of developing soy protein intolerance. The intestinal mucosa damaged by cow milk proteins may allow increased uptake of the potentially allergenic soy proteins.


In the US: In a national survey of pediatric allergists, the prevalence rate of soy protein allergy was reported to be 1.1%, compared to the 3.4% prevalence rate of cow milk protein allergy.

Internationally: In a prospective study of healthy infants fed soy-based formula, allergic responses to soy were documented in 0.5% of infants.

In a group of 243 children who were born of atopic parents and who received SPF for the first 6 months of life to prevent cow milk allergy, 14 (6%) of the children had positive skin test prick reactions to soy. Only 1 of these 14 children reacted to the double-blind placebo-controlled oral food challenge to soy.

The prevalence of food allergy in patients with atopic dermatitis varies with age and the severity of atopic dermatitis. Different prevalence rates have been reported; however, in most series, 30-40% of the patients received a diagnosis of food allergy. In a study from Italy, a positive radioallergosorbent assay test (RAST) result to soy was found in 25% of children with atopic dermatitis, but a positive challenge test result to soy was elicited in only 3% of the patients. Two other studies documented soy positivity in 5% of 204 patients and 4% of 143 children.

In a group of 93 children with documented IgE-associated cow milk allergy who received soy formula, 14% developed soy allergy.

In 1990, one of the authors reviewed the evidence obtained from 2108 Italian children with proven cow milk protein intolerance and non–IgE-associated enterocolitis and enteropathy syndrome. Forty-seven percent of the patients had to discontinue soy formulas because of intolerance. A higher prevalence was noted in infants younger than 3 months (53%). Thirty-five percent of children older than 1 year developed soy intolerance.

A soy-based formula is often substituted for cow milk in infants recovering from acute gastroenteritis; however, in a previous study that recruited 18 infants with acute gastroenteritis, 3 (16%) of the children developed a clinical reaction to soy challenge and 7 (38%) of the children developed histologic and enzymologic changes after soy challenge.

Mortality/Morbidity: Anaphylactic reactions to soy proteins are extremely rare; however, a population study in Sweden from 1993-1996 reported 4 deaths caused by soy.

Age: The risk of developing soy protein intolerance decreases with age. Among children with cow milk protein intolerance, infants younger than 3 months are at higher risk of developing soy protein intolerance (53%) compared to children older than 1 year (35%).

History: The typical presentation is that of an infant who develops atopic dermatitis or cow milk protein intolerance, which resolves with substitution of a soy formula but recurs 1 or 2 weeks later. Parents may report a recrudescence of dermatitis or GI symptoms. Usually, the infant presents with watery diarrhea and vomiting.

Soy protein intolerance may cause different clinical syndromes, both IgE- and non–IgE-mediated. These reactions include the following:


Urticaria or angioedema


Anaphylaxis (rare)

Atopic dermatitis

Enterocolitis syndrome

Intestinal atrophy (malabsorption syndrome)

Eosinophilic gastroenteritis

Allergic proctocolitis

In susceptible individuals, the ingestion of soy proteins may cause the following:

Protracted diarrhea

Carbohydrate intolerance

Failure to thrive

Some children present with atopic dermatitis as a major symptom; however, most patients present with profuse vomiting and watery diarrhea.

The symptoms usually begin within 2 weeks of the infant's first feeding with soy-derived milk.

Sometimes mucus can be present in the stools, but blood is rarely noted.

Even if frank manifestations of colitis are absent, inflammatory changes in the colonic mucosa are frequently encountered.

The infant is usually dehydrated, and sometimes signs of malabsorption appear.

Small-bowel atrophy has been documented in different studies.

The degree of villous atrophy may be similar to that of celiac disease.

The mucosal damage causes malabsorption, hypoalbuminemia, and failure to thrive.

Some infants can present because of red blood mixed in stools. These infants usually appear healthy, and hematochezia is the only symptom.

Physical: The physical examination findings depend on the clinical picture and the duration of symptoms.

The most frequent presentation is enterocolitis syndrome; therefore, the infant appears dehydrated, with weight loss and sunken eyes.

In case of proctocolitis, the infant usually appears healthy and has normal weight gain.

In the less frequent case of soy-induced enteropathy, the infant has a low weight-to-length ratio and usually presents with dystrophia.

The signs and symptoms are related to the degree of the malnutrition. For example, edema is related to hypoalbuminemia; dermatitis enteropathica, to low zinc level; and rickets, to vitamin D deficiency.

Causes: All soybean proteins and foods currently available for human consumption contain significant amounts of the isoflavones daidzein and genistein, either as the unconjugate form or as different types of glycoside conjugates.

The isoflavones have structural homology to steroidal estrogens; therefore, they are considered to be phytoestrogens, but little is known about their biological activity.

Unquestionably, isoflavone ingestion can elicit biological effects; however, isoflavones and their metabolites have biological properties that are quite separate from classic estrogen action.

Genistein is a potent inhibitor of tyrosine kinases and can interfere with signal transduction pathways.

The threshold intake of dietary estrogens necessary to achieve a biological effect in healthy adults appears to be 30-50 mg/d.

In soy flours and concentrates, isoflavone concentrations are relatively high (0.5-3 mg/g). In soy milk and soy infant formulas, the concentration of isoflavones is lower (0.3-0.5 mg/g), but it is 10,000-fold higher than the concentration found in breast milk. Moreover, the volume intake of these products is sufficient to account for a significantly high dietary intake of isoflavones.

Infants fed soy-based formulas have plasma concentrations of isoflavones that are 3000- to 22,000-fold higher than plasma concentrations of estradiol.

Even if these substances have a weak estrogenic activity compared with estradiol, they could have adverse effects; however, the concerns about the adverse role of phytoestrogens in the first months of life are exclusively theoretical. At this time, the very limited available evidence from adult and infant populations indicates that dietary isoflavones in soy infant formulas do not adversely affect human growth, development, or reproduction.

The results of a study that enrolled 48 children (mean age, 37 mo; range, 7-96 mo) suggest that long-term feeding with SPFs in early life does not produce estrogenlike hormonal effects.


Gastroesophageal Reflux

Ulcerative Colitis

Other Problems to be Considered:

Gastrointestinal bleeding

Celiac disease

Malabsorption syndrome

Infectious colitis


Cow milk protein intolerance

Autoimmune enteropathy

Intractable diarrhea of infancy

Intestinal infections


Intestinal infections

Cow milk protein intolerance

Inflammatory Bowel Disease


Anal Fistulas and Fissures

Meckel Diverticulum

Intestinal duplication

Intestinal hemangiomas

Intestinal infections

Cow milk protein intolerance

Inflammatory Bowel Disease

Other Tests:

Soy-induced GI symptoms are usually not IgE-mediated; therefore, both skin tests and determination of specific IgE in serum have a low diagnostic value.

RAST appears to be of poor predictive value. Many children with positive results do not react to challenge tests.

Prick tests have little predictive value. The acidic subunits of glycinin and beta-conglycinin appear to be present in reduced amounts or absent in some commercial soybean skin test extracts tested by sodium dodecyl sulfate-polyacrylamide gel electrophoresis (SDS-PAGE) and immunoblotting. As a consequence, these commercial extracts are less sensitive than extracts of soy flour.

The challenge test with soy proteins, after an elimination diet, is the only reliable method of evaluating soy protein intolerance.


Endoscopy: During the workup for differential diagnoses, upper or lower GI endoscopies are often performed in patients with soy protein intolerance. Findings, however, are nonspecific, most commonly minimal, and, at times, even completely unremarkable. Accordingly, and because of the transient nature of the disorder, endoscopies are not considered essential.


Macroscopically, only minimal erythematous changes may be observed.

Microscopically, any area (eg, lower esophagus, gastric body, antrum, duodenum) may or may not show signs of acute inflammation.

In a minority of patients, an infiltrate of eosinophils is observed.

When the clinical presentation is that of a malabsorption syndrome, the duodenal mucosa may have changes (eg, partial villous atrophy, crypt hyperplasia) indistinguishable from those of celiac disease.


Macroscopically, changes may vary from minimal erythematous segments, most commonly diffusely involving the distal colon, to severe inflammation with bleeding ulcers and loss of vascular markings.

Microscopically, nonspecific acute inflammatory changes are observed, typically indistinguishable from infectious colitis. Rarely, eosinophils predominate in the lamina propria.

Medical Care: Children affected by soy protein intolerance respond quickly to elimination of soy formula and introduction of a hydrolyzed protein formula.

Drug therapy is not currently a component of the standard of care for soy protein intolerance.


Soy protein intolerance is similar to other food protein intolerances. Its risk peaks during infancy, and it usually regresses completely during the first 2-3 years of life. Most children, therefore, can resume consumption of soy proteins by age 5 years.

Patient Education:

Use of SPF during the first 3 months of life does not reduce the frequency of cow milk intolerance after the introduction of cow milk formula.

Routine use of SPF has no proven value in the prevention of atopic disease.

Routine use of SPF has no proven value in the prevention or management of infantile colic.

Aggett PJ, Haschke F, Heine W: Comment on antigen-reduced infant formulae. ESPGAN Committee on Nutrition. Acta Paediatr 1993 Mar; 82(3): 314-9[Medline].

American Academy of Pediatrics: Committee on Nutrition. Soy protein- based formulas: recommendations for use in infant feeding. Pediatrics 1998 Jan; 101(1 Pt 1): 148-53[Medline].

Bruno G, Giampietro PG, Del Guercio MJ: Soy allergy is not common in atopic children: a multicenter study. Pediatr Allergy Immunol 1997 Nov; 8(4): 190-3[Medline].

Businco L, Dreborg S, Einarsson R: Hydrolyzed cow's milk formulae. Allergenicity and use in treatment and prevention. An ESPACI position paper. European Society of Pediatric Allergy and Clinical Immunology. Pediatr Allergy Immunol 1993 Aug; 4(3): 101-11[Medline].

Businco L, Bruno G, Giampietro PG: Soy protein for the prevention and treatment of children with cow-milk allergy. Am J Clin Nutr 1998 Dec; 68(6 Suppl): 1447S-1452S[Medline].

Eastham EJ, Lichauco T, Pang K: Antigenicity of infant formulas and the induction of systemic immunological tolerance by oral feeding: cow's milk versus soymilk. J Pediatr Gastroenterol Nutr 1982; 1(1): 23-8[Medline].

Foucard T, Malmheden Yman I: A study on severe food reactions in Sweden--is soy protein an underestimated cause of food anaphylaxis? Allergy 1999 Mar; 54(3): 261-5[Medline].

Giampietro PG, Ragno V, Daniele S: Soy hypersensitivity in children with food allergy. Ann Allergy 1992 Aug; 69(2): 143-6[Medline].

Halpin TC, Byrne WJ, Ament ME: Colitis, persistent diarrhea, and soy protein intolerance. J Pediatr 1977 Sep; 91(3): 404-7[Medline].

Herian AM, Bush RK, Taylor SL: Protein and allergen content of commercial skin test extracts for soybeans. Clin Exp Allergy 1992 Apr; 22(4): 461-8[Medline].

Iyngkaran N, Yadav M, Looi LM: Effect of soy protein on the small bowel mucosa of young infants recovering from acute gastroenteritis. J Pediatr Gastroenterol Nutr 1988 Jan-Feb; 7(1): 68-75[Medline].

Poley JR, Klein AW: Scanning electron microscopy of soy protein-induced damage of small bowel mucosa in infants. J Pediatr Gastroenterol Nutr 1983 May; 2(2): 271-87[Medline].

Setchell KD, Zimmer-Nechemias L, Cai J: Exposure of infants to phyto-oestrogens from soy-based infant formula. Lancet 1997 Jul 5; 350(9070): 23-7[Medline].

Setchell KD: Phytoestrogens: the biochemistry, physiology, and implications for human health of soy isoflavones. Am J Clin Nutr 1998 Dec; 68(6 Suppl): 1333S-1346S[Medline].

Zeiger RS, Sampson HA, Bock SA: Soy allergy in infants and children with IgE-associated cow's milk allergy. J Pediatr 1999 May; 134(5): 614-22[Medline].

Zoppi G, Guandalini S: The story of soy formula feeding in infants: a road paved with good intentions. J Pediatr Gastroenterol Nutr 1999 May; 28(5): 541-3[Medline].


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I am soy intolerant and my reaction to soy is the opposite of gluten. Gluten gives me diarrhea, soy constipates me--both cramping--tomatoes give me diarrhea, squash constipates. Of course, many of us react differently to our intolerances--what is normal for me may not be for you. Corn also constipates me.


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While I don't consider myself soy intolerant, I do have a much-lower-than-average tolerance limit to soy (a handful of servings a week). My symptoms involve loose stools (not to the point of D, but still not pleasant), and intestinal pain/cramping and more urgency for a bowel movement than normal. This is very similar to my dairy-ed symptoms (I'm casein intolerant), and slightly different from my glutening symptoms.


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I'm now convinced that soy's a problem for me now as well...just finished a soy-challenge, and I found that I am reacting almost the same as I did when I was consuming diary; the watery eyes, sneezing my head off, fogginess and extreme exhaustion (spent most of today in bed, actually!). I just feel WRONG!


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I first noticed soy reactions which were similar to but milder than my gluten reactions (intestinal cramps, bloating and gas) when I tried to substitute soy products for dairy products. So I eliminated soy for over 2 years, before reintroducing it in order to 'soy load' for testing. I finally did the Enterolab soy, yeast and egg test this year and tested positive (IgA antibodies) for soy. Of my 5 problem categories, gluten reactions cause the most excruciating pain and last the longest (10 days to 2 weeks). Dairy produces a different kind of cramping pain and lasts 7-10 days. Soy reactions seem to include cramps similar to both gluten and dairy and last 5-7 days. However, I suspect everyone will have different kinds and severity of reactions to soy.



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we stop givin to our son soy milk in the mornings and he is doing much better since then. They were only 2 days but we thing we ll keep it like that.



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I think my daughter reacts the same to soy as to gluten. She complains that her tummy hurts and she gets hyper and anxious.


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My soy issues were discovered when I tried to substitute soy milk for dairy. It is much like gluten....excessive gas, cramping, pain, constipation and sometimes D. I can't eat anything with soybean oil or lecithen either. I just generally feel better avoiding soy all together. Sometimes I will happen upon soy without knowing (eating out) and will not feel great, but I recover quicker than gluten.


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I am having the same problem with soy, sulphites, etc, getting hives and my rash gets very red and itchy and I am on low dose Prednisone, never had a food allergy in my life, until now.

Hi, can someone here with a soy intolerancy please tell me if the effects are the same as being glutened...i'm trying to figure out if soy is causing all of this extra gas :unsure: .

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My soy issues were discovered when I tried to substitute soy milk for dairy. It is much like gluten....excessive gas, cramping, pain, constipation and sometimes D. I can't eat anything with soybean oil or lecithen either. I just generally feel better avoiding soy all together. Sometimes I will happen upon soy without knowing (eating out) and will not feel great, but I recover quicker than gluten.

My husband reports this same reaction to soy....


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My daughter doesn't always seem to react to soybean oil or soy lecithin. But soy flour leaves her doubled over in pain and soon running for the toilet. If the soybean oil is not used for frying but merely added to the food, she'll get nosebleeds.


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Hi, can someone here with a soy intolerancy please tell me if the effects are the same as being glutened...i'm trying to figure out if soy is causing all of this extra gas :unsure: .

I definitely have a problem with soy but very different from being glutened. Gluten makes me violently ill for about 5 days. Soy just makes me uncomfortable for a couple of days. When I have soy my insides feel puffy and swollen and I have a knot (er, feels like a softball) around my navel. My sinuses close up and sometimes I get mouth ulcers. I get mild cramping and diarrhea. All of this goes away within 3 days. Since cutting out soy, my allergies have gotten much better. I used to be contstantly stuffed up and had itchy eyes and now I only get that way when I've had soy. Soy was the last piece of the puzzle for me and it was nice to finally get to the bottom of all of my symptoms.

The downside...I am hypersensative to soy and dairy so I don't eat or drink anything with even trace amounts. This makes it a little hard since most salad dressings and mayonnaises contain soy. Soy is a really hard one to elimiate but certainly doable. Best of luck!


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I definitely have a problem with soy but very different from being glutened. Gluten makes me violently ill for about 5 days. Soy just makes me uncomfortable for a couple of days. When I have soy my insides feel puffy and swollen and I have a knot (er, feels like a softball) around my navel. My sinuses close up and sometimes I get mouth ulcers. I get mild cramping and diarrhea. All of this goes away within 3 days. Since cutting out soy, my allergies have gotten much better. I used to be contstantly stuffed up and had itchy eyes and now I only get that way when I've had soy. Soy was the last piece of the puzzle for me and it was nice to finally get to the bottom of all of my symptoms.

The downside...I am hypersensative to soy and dairy so I don't eat or drink anything with even trace amounts. This makes it a little hard since most salad dressings and mayonnaises contain soy. Soy is a really hard one to elimiate but certainly doable. Best of luck!

hi, my reaction to soy is very different then the people here, i get full out hives, and swelling in my throat as well as around my joint areas, particularily in my wrists, i get very itchy and unconfortable. i have found the soy is harder to avoid then gluten. and what is really funny is that even if all my tests for celiac come out negative i would stay on the diet as well becuase most of the wheat products in the market add soy to them as well. watch out for sandwhich meats and sauces (spegetti sauce is bad) helmans olive oil mayo is soy and gluten free. good luck!!


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Enterolab told me they thought I would do OK with soy lecithin. I don't think it contains any of the protein that causes an immune response.

As for soybean oil, my understanding from other reading is that it depends on how the stuff is processed. Some ways you get some protein in there, but there is a way to have it free of protein. However, if you are looking at food labels, good luck in knowing how the soybean oil was manufactured :rolleyes: I just avoid the stuff.

I didn't even know I had a soy problem until I got the results from Enterolab. Once I gave it up, I discovered that my face cleared, my stools were softer (a good thing for me :lol: ), and I had less of a problem with night sweats (I'm menopausal). I just figured out on my own -- or at least I suspect -- that peanuts cause the same symptoms.


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      Thanks for pointing all that out Gemini! I look forward to finally getting off gluten for good to see how much everything changes.  I never thought about the absorption of my synthroid with all my other issues.  I just see my primary dr. for all my thyroid, perhaps I will ask for a referral to an endo dr for further evaluation and treatment.  Thanks for all the information! 
    • Gluten And Vertigo
      Christiana, I just felt to look at the site. I thought I had clicked to get email alerts. But, actually my email has been 'fritzing' sort of.  Thank you for your note. It is important for my diagnosis. I was diagnosed with chondritis of the collar bone a few months before the fall that resulted in the immobile right arm. The osteo surgeon gave me a cortosol shot that helped a lot. That MRI showed a rotator cuff tear nearly 2/3 thru the strip of tissue that connects the muscle tissue to the bone and makes the shoulder 'rotate' in place.  That was almost a year ago now. I have been learning to be very very mindful about how I use that arm, when I reach, carefully, how I rest it and sleep position. Interesting that I did see a search answer that said ' they are saying now that there could be a connection btn rotator cuff tear and inflammed collar bone. My primary doctor also said I could have an inflammed chest wall that resulted in the chondritis. I remembered that word from a child's diagnosis years ago. That was in his knees and was treated by this same osteo surgeon, by casting the legs over summer holiday, which ended in healed x-rays. That was osteo chondritis desicans. He said then, 'if it is horses, we would have to shoot them.'  I tried to get a blood test three weeks ago for the same antibody we were treating that child with thru his then pediatritian, for rheumatoid antibodies/ recurring strep throat. I had gotten a 'sort of' diagnosis, or agreement from that primary care doctor, allowing me to get the recommended antibiotics (one of the few treatments that it is allowed, because of the need to keep the hearing). But, his new nurse did not relay the request properly. I hate doctor office politics. I hope this newbie is not going to mess with this doctor's little family as well. Last month when researching Meniere's one of the things listed about it was that autoimmune disease is connected to it also. I was hurt before the falls and the inflammation and the collar bone chondritis and the rotator cuff tear. I was very very concerned about it setting off some kind of autoimmune inflammation reaction or worse that can happen when tissue cells are being repaired rapidly and it felt like lots of toxins were being cleansed and processed over a period of many months. The only similar feeling I have ever experienced was when I had a 'deep tissue massage' to release and cleanse a cortisol 'hump' I had after a prolonged period of high family stress situation. Right now, my primary (an O.D. , or osteopath) is working with me. There are two ENTs in this area he offered for Meniere's and has given me Physical Therapy at his complex for Balance Therapy. It is great that that therapist has a MIL that is also dealing with Meniere's and getting exercises from a major hospital complex in the city. I was able to give her some celiac's diagnosis information. Sounded like her MIL and her son were likely to be candidates.  I did not know what the definition was of the term 'vestibular' as in vestibular migraine, another connection to Meniere's. I just typed and then typed 'definition of vestibular.' That had information about the connections btn hearing and sitting positions. I will look up costochondritis. Thank you, again. Best wishes, Anne
    • What Are Your Brands & Flavors Of Gluten Free Ice Cream ?
      I don't worry about the same facility, but I check if it is on the same lines. I think it is usually a good idea to find out if things are made on shared lines. And if they are made on the same line as gluten-containing products how good is the cleaning in between? Chocolate is a good example of this. For example, I contacted a company whose chocolate I used to eat before being diagnosed and they outright told me they are not good about cleaning on shared lines and it is not safe for allergies or celiac. I have had this response from other companies as well (especially when it comes to chocolate sadly). I think this is why Godiva is not safe. Its just a good idea to check.
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      Wow you all have more balls than I do. I've been gluten free since 2007 and I'm still afraid of offending people. It gives me lots of troubles, really. I'm more like rockstarkate I guess...the "people pleasing" aspect.  I love how you all just have the flat out rule I Will Not Eat It Unless I or a Celiac Made it. (Or a trusted family member).  I still simper and grovel and cringe and apologetically turn things away.  People still put dishes in my face and say "This should be gluten free..."  and I have to awkwardly not eat it and then seem rude.  I've done the whole...checking the bottles thing too.  I do try to dart out of things more though now. I volunteered in other countries in recent years and I felt as vulnerable as all heck, having to rely on them to make food, as well as definitely feeling like I offended people who didn't get it at all. I was feeling brave when I signed up for those but after the second time I was like okay, the fear/anxiety/stress about the food is too much. I managed to dodge out of getting sick, and for the most part people humored me...but it was pretty difficult because I don't like offending people, especially other cultures, with them trying to be nice and make food for me...pretty sure I did offend people as well as annoy many others. OP, you are not alone. For sure I have trust issues eating other people's food. They say they know but I do truly doubt they are as strict as I would be.   A few times I will still brave eating some little mozzarella balls with vinegar...though, I did still look at the labels.  Someone had to give me a persuasive speech and show me all ingredients (just salt and pepper) after making me chicken wings once. I do tell people, basically, NOT to make me stuff. But they still do.  Another time a friend had worked really hard and was having a terrible time and offered me a burger patty when I arrived, assuring me it was gluten free. I knew I hadn't been there to watch whether she used the "bun spatula" on it or not...but I just didn't feel like giving her a fight about it since she was having a rough time and hosts like to feel they are feeding guests, blah blah. So I ate it. And got glutened. And wailed and gnashed my teeth haha. Lesson learned.  I need to stick to my guns more. I just always feel like I'm being too "difficult" as it is. But...sigh.  It is refreshing for me to read these empowered no BS responses though. You all remind me of where I'm coming from, and not that I'm just being some kind of high maintenance, rude, crazy person. You'd think after, what, nine years now, I wouldn't still be bothered by it...
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    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it. Thank You,
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      Hi Peaceflower, Just wanted to say thank you for the chat.
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    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
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