Data Validation by Year




Total Number of Survey Responses
Metric Count
Total Survey Responses (All Years) 3625







Chi-Square Test Results for Survey Responses by Year (2019 - 2024)
Statistic DF P_Value
X-squared 343 5 < 1e-05
  1. X-squared = 343
  1. df = 5 (Degrees of Freedom)
  1. p-value < 1e-05

Conclusion - There is a significant difference in the number of survey responses between years. - The differences are not due to random variation. - Some years had much higher or much lower response counts than expected.




Percenteage of respondents who were willing to be contacted for additional research

Counts and Percentages for Column 354 in AGS_SURVEY
Response Count Percent
No 694 100







Year Response Bin Count Percentage (%)
2024 0-9 144 13.2
2023 0-9 275 25.2
2022 0-9 270 24.7
2021 0-9 66 6.0
2020 0-9 157 14.4
2019 0-9 179 16.4
2024 10-19 17 9.4
2023 10-19 36 19.9
2022 10-19 37 20.4
2021 10-19 17 9.4
2020 10-19 36 19.9
2019 10-19 38 21.0
2024 20-29 7 6.4
2023 20-29 22 20.2
2022 20-29 32 29.4
2021 20-29 12 11.0
2020 20-29 20 18.3
2019 20-29 16 14.7
2024 30-39 8 10.1
2023 30-39 23 29.1
2022 30-39 15 19.0
2021 30-39 6 7.6
2020 30-39 7 8.9
2019 30-39 20 25.3
2024 40-49 4 6.9
2023 40-49 15 25.9
2022 40-49 15 25.9
2021 40-49 4 6.9
2020 40-49 11 19.0
2019 40-49 9 15.5
2024 50-59 6 12.5
2023 50-59 8 16.7
2022 50-59 11 22.9
2021 50-59 4 8.3
2020 50-59 13 27.1
2019 50-59 6 12.5
2024 60-69 2 6.5
2023 60-69 5 16.1
2022 60-69 11 35.5
2020 60-69 5 16.1
2019 60-69 8 25.8
2024 70-79 5 16.1
2023 70-79 12 38.7
2022 70-79 6 19.4
2021 70-79 1 3.2
2020 70-79 5 16.1
2019 70-79 2 6.5
2024 80-89 1 4.0
2023 80-89 4 16.0
2022 80-89 6 24.0
2021 80-89 3 12.0
2020 80-89 3 12.0
2019 80-89 8 32.0
2024 90-99 5 16.7
2023 90-99 9 30.0
2022 90-99 3 10.0
2021 90-99 3 10.0
2020 90-99 4 13.3
2019 90-99 6 20.0
2024 NA 7 15.6
2023 NA 13 28.9
2022 NA 5 11.1
2021 NA 4 8.9
2020 NA 7 15.6
2019 NA 9 20.0




Distribution of AG IgE at First Test

Response Bin Count Percentage (%)
<0.1 13 0.8
0.1-1.9 627 36.3
2.0-9.9 450 26.1
>10 637 36.9













Summary for AG IgE at Last Test:

Statistic Value
Mean 17.6238054212707
Median 3.145
Mode 0.1
Standard Deviation 54.1503354647716
Range 0 - 800










Distribution of AG IgE at Last Test

Response Bin Count Percentage (%)
<0.1 33 2.1
0.1-1.9 615 38.9
2.0-9.9 437 27.6
>10 497 31.4











Descriptive Statistics for GENDER:

Summary for GENDER
GENDER Count Percentage
FEMALE 1986 81.8
MALE 442 18.2




n= 2428







Descriptive Statistics for RACE:

Summary for RACE
RACE Count Percentage
WHITE 2288 95.89
AMERICAN INDIAN OR ALASKA NATIVE 48 2.01
UNKNOWN 23 0.96
ASIAN 10 0.42
BLACK OR AFRICAN AMERICAN 10 0.42
NATIVE HAWAIIAN OR OTHER PACIFIC ISLANDER 7 0.29




n= 2386


Descriptive Statistics for ETHNICITY:

Summary for ETHNICITY
ETHNICITY Count Percentage
NOT HISPANIC OR LATINO 2216 93.74
UNKNOWN 101 4.27
HISPANIC OR LATINO 47 1.99




n= 2364


Descriptive Statistics for EDUCATION:

Summary for EDUCATION
EDUCATION Count Percentage
BACHELORS 659 27.76
SOME COLLEGE 448 18.87
MASTERS 380 16.01
ASSOCIATES 260 10.95
HIGHSCHOOL OR EQUIVALENT 243 10.24
TRADE/TECHNICAL/VOCATIONAL 177 7.46
DOCTORATE 78 3.29
PROFESSIONAL DEGREE 71 2.99
SOME HIGHSCHOOL 58 2.44




n= 2374


Descriptive Statistics for AGE_RANGE:

Summary for AGE_RANGE
AGE_RANGE Count Percentage
55-64 695 29.08
45-54 665 27.82
65+ 423 17.70
35-44 393 16.44
25-34 158 6.61
18-24 56 2.34




n= 2390


Descriptive Statistics for HOUSEHOLD_INCOME:

Summary for HOUSEHOLD_INCOME
HOUSEHOLD_INCOME Count Percentage
BETWEEN $100,000 AND $150,000 473 22.13
BETWEEN $50,000 AND $74,999 429 20.07
BETWEEN $75,000 AND $99,999 364 17.03
OVER $150,000 321 15.02
BETWEEN $30,000 AND $49,999 295 13.80
BETWEEN $15,000 AND $29,999 168 7.86
UNDER $15,000 87 4.07




n= 2137


AGE_AT_FIRST_ALLERGIC_REACTIONS



Summary of AGE_AT_FIRST_ALLERGIC_REACTIONS
Statistic Value
Mean 45.4
Standard Deviation 15.97
Range 0 - 85




Age_Group Count
10-19 10
20-29 243
30-39 397
40-49 681
50-59 618
60-69 418
70-79 106
80-89 14



n = 2487

AGE_AT_DIAGNOSIS



Summary of AGE_AT_DIAGNOSIS
Statistic Value
Mean 49.81
Standard Deviation 13.79
Range 3 - 86



Age Count Percentage (%)
60 98 2.70
52 92 2.54
50 85 2.35
59 83 2.29
48 79 2.18
47 78 2.15
58 77 2.13
49 76 2.10
54 75 2.07
57 75 2.07
46 74 2.04
55 74 2.04
45 73 2.01
63 70 1.93
65 68 1.88
42 67 1.85
62 67 1.85
53 66 1.82
51 65 1.79
43 64 1.77
56 64 1.77
40 62 1.71
44 61 1.68
38 52 1.44
61 52 1.44
64 51 1.41
39 50 1.38
41 50 1.38
36 46 1.27
66 43 1.19
69 43 1.19
37 40 1.10
35 38 1.05
67 36 0.99
70 31 0.86
71 30 0.83
34 28 0.77
68 28 0.77
29 25 0.69
27 23 0.63
32 23 0.63
72 23 0.63
30 20 0.55
33 20 0.55
25 18 0.50
28 18 0.50
31 17 0.47
24 15 0.41
74 15 0.41
21 12 0.33
26 12 0.33
73 12 0.33
23 11 0.30
75 11 0.30
22 10 0.28
19 7 0.19
20 6 0.17
76 6 0.17
77 6 0.17
80 4 0.11
83 4 0.11
79 3 0.08
78 2 0.06
81 2 0.06
82 2 0.06
85 2 0.06
86 1 0.03



n = 2641



ADDITIONAL_TB_DIAGNOSIS



Additional Tickborne Diagnosis Count Percentage
NONE 2108 75.12
LYME (BORRELIA BURGDORFERI) 335 11.94
RICKETTSIAS AND/OR ROCKY MOUNTAIN SPOTTED FEVER 215 7.66
EHRLICHIOSIS 60 2.14
BABESIA 47 1.67
STARI (SOUTHERN TICK-ASSOCIATED RASH ILLNESS) 25 0.89
ANAPLASMOSIS 5 0.18
HEARTLAND VIRUS 5 0.18
BORRELIA MAYONNI 3 0.11
BORRELIA MIYAMOTOI 3 0.11



n = 2375



TYPE_OF_HEALTHCARE_PROVIDER_DIAGNOSIS



Type of Healthcare Provider Diagnosis Count Percentage
ALLERGIST 1289 53.73
PRIMARY CARE PROVIDER (MD OR DO) 737 30.72
NURSE PRACTITIONER 158 6.59
GASTROENTEROLOGIST 112 4.67
IMMUNOLOGIST 46 1.92
PHYSICIAN ASSISTANT 40 1.67
OBSTETRICIAN/GYNECOLOGIST 5 0.21
CARDIOLOGIST 3 0.13
DENTIST 3 0.13
ENDOCRINOLOGIST 3 0.13
PEDIATRICIAN 3 0.13



n = 2473



MAMMAL_INGREDIENT_REACTION



Mammal Ingredient Reaction Count Percentage
BEEF 2545 97.73
PORK 2276 87.40
DAIRY 1743 66.94
GELATIN (FOOD OR MEDICINE E.G. GEL CAPS) 1599 61.41
PERSONAL CARE PRODUCTS (E.G. TAMPONS, COSMETICS, SHAMPOO, LOTIONS) 1104 42.40
PRESCRIPTION MEDICATIONS 1075 41.28
OVER-THE-COUNTER MEDICATIONS 956 36.71
LAMB 889 34.14
HOUSEHOLD PRODUCTS (E.G. CLEANING PRODUCTS, LAUNDRY DETERGENT, OR DRYER SHEETS) 856 32.87
VENISON 801 30.76
VACCINATIONS 402 15.44
DENTAL/SURGICAL MEDICAL SUPPLIES 344 13.21
TEXTILES 333 12.79



n = 2683






NUMBER_REACTIONS_PRIOR_TO_DIAGNOSIS



Number of Reactions Prior to Diagnosis Count Percentage
15 OR MORE 1060 42.55
10 to 14 132 5.30
5 to 9 324 13.01
1 to 4 646 25.93
None 329 13.21



n = 2567



MEDICAL_INTERVENTIONS_FOR_ALPHA_GAL_SYNDROME



Medical Intervention Count Percentage (%)
NONE OF THE ABOVE 1986 54.82
VISITED THE EMERGENCY ROOM 979 27.02
VISITED AN URGENT CARE FACILITY 270 7.45
SELF-ADMINISTERED AN EPI-PEN 164 4.53
ADMITTED TO THE HOSPITAL 163 4.50
ADMITTED TO THE INTENSIVE CARE UNIT (ICU) 61 1.68



n = 3623

ADDITIONAL_ALLERGIES



Additional Allergy Count Percentage (%)
NONE OF THE ABOVE 2240 61.83
MEATS 875 24.15
DAIRY (COW/SHEEP/GOAT MILK, CHEESE, YOGURT, ETC.) 754 20.81
WHEAT (GLUTEN) 291 8.03
CARAGEENAN 282 7.78
SHELLFISH 202 5.58
EGG 190 5.24
PEANUT 170 4.69
TREE NUTS 169 4.66
SOY 122 3.37
FRUITS 121 3.34
SESAME/SESAME SEEDS 92 2.54
VEGETABLES 90 2.48
CEREALS & GRAINS 77 2.13
BEANS, LEGUMES, PULSES 67 1.85
FINNED FISH 44 1.21



n = 3623



EXPOSURE



Exposure Count Percentage (%)
HOME 2339 64.56
RESTAURANT/EATING OUT 2020 55.75
WORK 1049 28.95
NONE OF THE ABOVE 956 26.39
SCHOOL 165 4.55
COLLEGE 100 2.76
DAYCARE 9 0.25



n = 3623



POST_EXPOSURE_TIME



Post-Exposure Time Count Percentage (%)
4-6 HOURS 1349 49.60
6-8 HOURS 787 28.93
3 HOURS (180-239 MINUTES) 714 26.25
1 TO 2 HOURS (61-120 MINUTES) 597 21.95
2 HOURS (120-179 MINUTES) 494 18.16
6 TO 30 MINUTES 490 18.01
8 HOURS OR MORE 452 16.62
31 TO 60 MINUTES 417 15.33
0 TO 5 MINUTES 347 12.76
UNSURE 164 6.03



n = 3623



OTHER_FAMILY_MEMBERS_DIAGNOSED_WITH_AGS



Other Family Members Diagnosed with AGS Count Percentage (%)
NO 2167 79.67
NOT SURE 145 5.33
CHILD 50 1.84
SPOUSE 46 1.69
MOTHER 40 1.47
DAUGHTER 28 1.03
BROTHER 27 0.99
HUSBAND 26 0.96
SISTER 23 0.85
SON 21 0.77
FATHER 16 0.59
COUSIN 13 0.48
NEPHEW 11 0.40
SIBLING 11 0.40
AUNT 10 0.37
NIECE 8 0.29
BROTHER IN LAW 7 0.26
WIFE 7 0.26
GRANDDAUGHTER 6 0.22
UNCLE 6 0.22
3 CHILDREN 5 0.18
FATHER IN LAW 5 0.18
MOM 5 0.18
COUSINS 4 0.15
MY HUSBAND 4 0.15
SISTER IN LAW 4 0.15
2 DAUGHTERS 3 0.11
DAUGHTER IN LAW 3 0.11
GRANDSON 3 0.11
ADULT CHILD 2 0.07
DAD 2 0.07
GRANDCHILD 2 0.07
MOTHER AND SISTER IN LAW 2 0.07
MY NIECE 2 0.07
MY SISTER 2 0.07
NEICE 2 0.07
STEP FATHER 2 0.07
STEP SISTER 2 0.07
TWO DAUGHTERS 2 0.07
2 CHILDREN 1 0.04
2 SIBLINGS 1 0.04
3 COUSINS 1 0.04
3RD COUSIN 1 0.04
A COUSIN 1 0.04
ADOPTED BROTHER (NOT GENETICALLY RELATED) 1 0.04
AND MY SISTER WHO IS 54 1 0.04
AND NOW HE HAS NO PROBLEM. 1 0.04
AND POSSIBLY FATHER 1 0.04
AND SISTER 1 0.04
BUT MY LIVE-IN GIRLFRIENDS OLDEST SISTER WHO IS NOW 70 1 0.04
BUT RECENTLY FOUND OUT SHE CAN EAT BEEF AGAIN. 1 0.04
CHILD (DAUGHTER) 1 0.04
DAD AND MOM BOTH GOT DIAGNOSED AFTER ME 1 0.04
DAUGHTER & SPOUSE 1 0.04
DAUGHTER-IN-LAW 1 0.04
DIFFERENT HOUSEHOLD 1 0.04
FIRST COUSIN 1 0.04
GRAND DAUGHTER 1 0.04
GRANDCHILDREN 1 0.04
GRANDMOTHER 1 0.04
GRANDSONS 1 0.04
GREAT AUNT 1 0.04
GREAT NEPHEW 1 0.04
GREAT UNCLE 1 0.04
HUSBAND AND TWO ADULT CHILDREN ARE AG POSTIVE 1 0.04
HUSBAND IS NOW BEING TESTED 1 0.04
I BELIEVE SPOUSE HAS BUT NOT TESTED 1 0.04
I HAVE A COUSIN WHO MIGHT HAVE IT 1 0.04
I HAVE IDENTICAL TWIN BOYS BOTH HAVE IT AS WELL. ONE HAS VERY HIGH NUMBERS AND ONE HAS LOW 1 0.04
INLAWS 1 0.04
ITS ODD AS THEY ARE IDENTICAL. 1 0.04
KIDS 1 0.04
MATERNAL COUSINS 1 0.04
MAYBE SON 1 0.04
ME 1 0.04
MOM WHO LIVES NEXT DOOR 1 0.04
MOTHER 1 0.04
MOTHER AND MAYBE OTHER FAMILY MEMBERS 1 0.04
MOTHER AND DAUGHTER 1 0.04
MOTHER AND MATERNAL GRANDFATHER 1 0.04
MOTHER AND SISTER 1 0.04
MOTHER AND SISTERS 1 0.04
MOTHER AND TWO SONS 1 0.04
MOTHER I CARE FOR 1 0.04
MOTHER IN LAW AND GRANDMOTHER IN LAW 1 0.04
MOTHER IN-LAW 1 0.04
MOTHER-IN-LAW 1 0.04
MY 12 YEAR OLD SON WAS DIAGNOSED RIGHT AFTER ME 1 0.04
MY 9 YEAR OLD DAUGHTER 1 0.04
MY BROTHER WHO IS 58 1 0.04
MY CHILD 1 0.04
MY COUSINS DAUGHTER HAS AGS 1 0.04
MY DAUGHTER HAD IT FOR 8 YEARS 1 0.04
MY HALF-SISTER ON MY FATHERS SIDE 1 0.04
MY HUSBAND’S UNCLE HAS ALSO BEEN DIAGNOSED. (NOT A BLOOD RELATIVE TO ME) 1 0.04
MY MOTHER AND MY NIECE 1 0.04
MY NEPHEW 1 0.04
MY OLDEST SON WAS DIAGNOSED DECEMBER 2019 1 0.04
MY SON 1 0.04
MY SON HAD IT 8 YEARS 1 0.04
MY SPOUSE IS CURRENTLY BEING TESTED. WE HIGHLY SUSPECT HIS RESULTS WILL BE POSITIVE. 1 0.04
NEPHEW IN MONTANA 1 0.04
NIECE NIRVE GREAT NIECE NEPHEW GREAT NEPHEW 1 0.04
NIECE THAT DOES NOT LIVE WITH US 1 0.04
NINE CHILDREN 1 0.04
NOT FAMILY 1 0.04
NOT RELATED 1 0.04
OLDEST SON 1 0.04
PARENT 1 0.04
PATERNAL AUNT 1 0.04
RECENTLY DIAGNOSED. 1 0.04
SAME TOWN 1 0.04
SIBKING 1 0.04
SIBLING. BROTHER 1 0.04
SISTER 73 1 0.04
SISTER AND NIECE 1 0.04
SISTER-IN-LAW 1 0.04
SISTERINLAW 1 0.04
SISTERS-IN-LAW 1 0.04
SON 1 0.04
SPOUSE AND CHILD 1 0.04
SPOUSE. DAUGHTER. 1 0.04
SPOUSE; HE HAS GI SYMPTOMS 1 0.04
STEP-BROTHER 1 0.04
STEPSON 1 0.04
TWO OF MY CHILDREN 1 0.04



n = 2720



AGS_SYMPTOMS



AGS Symptoms Count Percentage (%)
GASTROINTESTINAL 2347 86.29
SKIN 2274 83.60
RESPIRATORY 1631 59.96
CARDIOVASCULAR 1131 41.58
EMOTIONAL 1047 38.49
MOTOR (MUSCLES) 651 23.93
NERVOUS SYSTEM (REFLEXES) 626 23.01
NOT SURE 74 2.72
3 0.11



n = 2717



AGS_SYMPTOMS by Year



AGS Symptoms Breakdown by Year - Counts and Percentages
YEAR AGS_SYMPTOMS Count Total Percentage
2019 GASTROINTESTINAL 398 2347 17.0
2020 GASTROINTESTINAL 397 2347 16.9
2021 GASTROINTESTINAL 190 2347 8.1
2022 GASTROINTESTINAL 540 2347 23.0
2023 GASTROINTESTINAL 548 2347 23.3
2024 GASTROINTESTINAL 274 2347 11.7
2019 SKIN 417 2274 18.3
2020 SKIN 428 2274 18.8
2021 SKIN 209 2274 9.2
2022 SKIN 527 2274 23.2
2023 SKIN 519 2274 22.8
2024 SKIN 174 2274 7.7
2019 RESPIRATORY 300 1631 18.4
2020 RESPIRATORY 321 1631 19.7
2021 RESPIRATORY 152 1631 9.3
2022 RESPIRATORY 354 1631 21.7
2023 RESPIRATORY 381 1631 23.4
2024 RESPIRATORY 123 1631 7.5
2019 CARDIOVASCULAR 185 1131 16.4
2020 CARDIOVASCULAR 211 1131 18.7
2021 CARDIOVASCULAR 100 1131 8.8
2022 CARDIOVASCULAR 254 1131 22.5
2023 CARDIOVASCULAR 285 1131 25.2
2024 CARDIOVASCULAR 96 1131 8.5
2019 EMOTIONAL 181 1047 17.3
2020 EMOTIONAL 170 1047 16.2
2021 EMOTIONAL 76 1047 7.3
2022 EMOTIONAL 249 1047 23.8
2023 EMOTIONAL 278 1047 26.6
2024 EMOTIONAL 93 1047 8.9
2019 MOTOR (MUSCLES) 108 651 16.6
2020 MOTOR (MUSCLES) 114 651 17.5
2021 MOTOR (MUSCLES) 52 651 8.0
2022 MOTOR (MUSCLES) 147 651 22.6
2023 MOTOR (MUSCLES) 170 651 26.1
2024 MOTOR (MUSCLES) 60 651 9.2
2019 NERVOUS SYSTEM (REFLEXES) 110 626 17.6
2020 NERVOUS SYSTEM (REFLEXES) 116 626 18.5
2021 NERVOUS SYSTEM (REFLEXES) 47 626 7.5
2022 NERVOUS SYSTEM (REFLEXES) 130 626 20.8
2023 NERVOUS SYSTEM (REFLEXES) 165 626 26.4
2024 NERVOUS SYSTEM (REFLEXES) 58 626 9.3
2019 NOT SURE 13 74 17.6
2020 NOT SURE 21 74 28.4
2021 NOT SURE 4 74 5.4
2022 NOT SURE 11 74 14.9
2023 NOT SURE 18 74 24.3
2024 NOT SURE 7 74 9.5



SKIN



Skin-Related Issues Count Percentage (%)
ITCHING 2184 80.29
HIVES (WELTS, URTICARIA) 1931 70.99
FLUSHING 1567 57.61
RASH (REDNESS OF SKIN) 1564 57.50
SWELLING (ANGIOEDEMA) 1228 45.15
HOT FLASH, HOT SKIN 1221 44.89
RED, ITCHY OR WATERY EYES 1082 39.78
NONE 157 5.77
UNSURE 41 1.51
25 0.92



n = 11000
Skin-Related Issues Count Percentage (%)
ITCHING 2184 80.29
HIVES (WELTS, URTICARIA) 1931 70.99
FLUSHING 1567 57.61
RASH (REDNESS OF SKIN) 1564 57.50
SWELLING (ANGIOEDEMA) 1228 45.15
HOT FLASH, HOT SKIN 1221 44.89
RED, ITCHY OR WATERY EYES 1082 39.78
NONE 157 5.77
UNSURE 41 1.51



RESPIRATORY



Respiratory Issues Count Percentage (%)
NASAL CONGESTION/STUFFY OR RUNNY NOSE 1384 50.88
TROUBLE BREATHING (SHORTNESS OF BREATH) 1264 46.47
CHEST TIGHTENING 1192 43.82
COUGHING 1188 43.68
ANAPHYLAXIS 952 35.00
HOARSE VOICE 931 34.23
WHEEZING 764 28.09
SNEEZING 679 24.96
CHEST PAIN 588 21.62
NONE 372 13.68
UNSURE 137 5.04
36 1.32



n = 9487



GASTROINTESTINAL



Gastrointestinal Issues Count Percentage (%)
DIARRHEA 1995 73.35
STOMACH PAIN/CRAMPS 1967 72.32
BLOATING 1593 58.57
NAUSEA 1562 57.43
ITCHY THROAT/EAR CANAL 1214 44.63
VOMITING 967 35.55
REFLUX 949 34.89
TONGUE SWELLING/THROAT TIGHTNESS 927 34.08
DIFFICULTY SWALLOWING 745 27.39
TINGLING MOUTH 733 26.95
CONSTIPATION 676 24.85
ODD TASTE IN MOUTH/METALLIC TASTE 572 21.03
BLOODY STOOLS 173 6.36
NONE 108 3.97
UNSURE 53 1.95
19 0.70



n = 14253



[1] 150

Number of Rows with AGS_SYMPTOMS == ‘GASTROINTESTINAL’
Symptom Count
GASTROINTESTINAL 150



CARDIOVASCULAR



Cardiovascular Issues Count Percentage (%)
LIGHTHEADEDNESS/DIZZINESS 1408 51.76
RAPID HEARTBEAT (TACHYCARDIA) 1079 39.67
LOW BLOOD PRESSURE 789 29.01
IRREGULAR HEART RATE 753 27.68
CHEST PAIN 529 19.45
NONE 504 18.53
A WEAK PULSE 293 10.77
UNSURE 288 10.59
SLOW HEARTBEAT (BRADYCARDIA) 176 6.47
TURNING BLUE 66 2.43
45 1.65
CARDIAC ARREST 24 0.88



n = 5954



EMOTIONAL_BEHAVIORAL



Emotional/Behavioral Issues Count Percentage (%)
ANXIETY 1780 65.44
FATIGUE 1558 57.28
SLEEP DISTURBANCES 1192 43.82
HEADACHE/MIGRAINES 1110 40.81
WITHDRAWAL FROM SOCIAL AND RECREATIONAL ACTIVITIES 1050 38.60
IRRITABILITY 1033 37.98
FEELING OF “IMPENDING DOOM” 923 33.93
MEMORY RECALL 876 32.21
DEPRESSION 868 31.91
PANIC 839 30.85
CONFUSION 760 27.94
NONE 239 8.79
UNSURE 116 4.26
19 0.70



n = 12363



NERVOUS_SYSTEM



Nervous System Issues Count Percentage (%)
ABNORMAL SWEATING 814 29.93
DRY SKIN 625 22.98
NONE 587 21.58
DEHYDRATION 586 21.54
WEIGHT GAIN 552 20.29
WEIGHT LOSS 467 17.17
FAINTING OR LOSS OF CONSCIOUSNESS 456 16.76
UNSURE 410 15.07
URINARY DYSFUNCTION 278 10.22
SEXUAL DYSFUNCTION 224 8.24
UTERINE CONTRACTIONS 109 4.01
92 3.38



n = 5200



MOTOR



Motor Issues Count Percentage (%)
NONE 958 35.22
MUSCLE CRAMPING 944 34.71
LEG WEAKNESS 624 22.94
ARM WEAKNESS 560 20.59
NOT SURE 440 16.18
MUSCLE WASTING 186 6.84
CLAWING OF TOES 167 6.14
130 4.78



n = 4009



CO-OCCURRING



Comorbid Diagnosis Count Percentage (%)
VITAMIN D DEFICIENCY 976 35.88
ALLERGIC RHINITIS (HAY FEVER) 975 35.85
HEARTBURN (ACID REFLUX) 950 34.93
DRUG ALLERGY 828 30.44
HIGH BLOOD PRESSURE (HYPERTENSION) 820 30.15
ANAPHYLAXIS 723 26.58
ASTHMA 657 24.15
MIGRAINE HEADACHES 624 22.94
IRRITABLE BOWEL SYNDROME 545 20.04
THYROID DISEASE 423 15.55
OSTEOARTHRITIS 410 15.07
HYPERTENSION 364 13.38
BEE STING ALLERGY 363 13.35
LACTOSE INTOLERANCE 346 12.72
CONTACT DERMATITIS 333 12.24
ATOPIC DERMATITIS (ECZEMA) 323 11.88
MENTAL HEALTH DISORDER 320 11.76
GLUTEN SENSITIVITY 291 10.70
LATEX ALLERGY 287 10.55
TYPE 2 DIABETES 243 8.93
NONE 206 7.57
ATTENTION-DEFICIT/HYPERACTIVITY DISORDER (ADHD) 199 7.32
CANCER 197 7.24
MAST CELL DISEASE 196 7.21
ARRHYTHMIAS 182 6.69
RHEUMATOID ARTHRITIS 128 4.71
HEART DISEASE 108 3.97
ORAL ALLERGY SYNDROME (OAS)/POLLEN-FOOD SYNDROME 94 3.46
CONNECTIVE TISSUE DISORDER 87 3.20
HEART DEFECTS 75 2.76
INFLAMMATORY BOWEL DISEASE (CROHN’S DISEASE/ULCERATIVE COLITIS) 59 2.17
CELIAC DISEASE 50 1.84
STROKE 50 1.84
EOSINOPHILIC ESOPHAGITIS 38 1.40
UNSURE 35 1.29
HISTAMINE TOXICITY (SCOMBROID POISONING) 23 0.85
17 0.62
HYPER-IGE SYNDROME (HIE) 17 0.62
AUTISM 12 0.44
FOOD PROTEIN-INDUCED ENTEROCOLITIS SYNDROME (FPIES) 12 0.44
TYPE 1 DIABETES 11 0.40



n = 12597



OUTGROWN_OR_TOLERANT_TO_MAMMALIAN_INGREDIENTS



Outgrown or Tolerant to Mammalian Ingredients Count Percentage (%)
NO 1949 71.65
UNSURE 579 21.29
YES 192 7.06



n = 2720




Response Rate

Question N Total N Answered Response Rate
Please provide any additional input, comments, opinions, or suggestions below. Please feel free to share advice or feedback for healthcare providers, other AGS patients, or other affected individuals. 3625 1742 48.1%
Besides avoidance of mammalian ingredients, are there other therapies or interventions you have discovered that help reduce the severity and frequency of Alpha-gal reactions or symptoms? Please Explain. 3625 2303 63.5%
Ethnicity: 3625 2365 65.2%
Education: 3625 2375 65.5%
Have you ever been diagnosed with any of the following tick-borne conditions? Please check all that apply. 3625 2376 65.5%
PREVENTION_METHOD 3625 2386 65.8%
Race (Select all that apply): 3625 2387 65.8%
Household Income: 3625 2390 65.9%
When was your MOST RECENT AGS blood test performed and what was your Alpha-gal IgE value? 3625 2405 66.3%
Zip Code: 3625 2408 66.4%
Gender: 3625 2429 67.0%
Age Range: 3625 2434 67.1%
This concludes our survey. THANK YOU for your participation. Do you want to be contacted by TBC United with information about future clinical trials or research studies?: 3625 2441 67.3%
MENTAL_HEALTH_CONCERNS 3625 2461 67.9%
What, if any, financial impacts (positive or negative) have you experienced due to Alpha-gal Syndrome? 3625 2466 68.0%
What type of doctor or healthcare provider first made the Alpha-gal syndrome diagnosis? 3625 2474 68.2%
What, if any, social impacts (positive or negative) have you experienced due to Alpha-gal Syndrome (e.g. ability to go out, spend time with family and friends, etc)? 3625 2522 69.6%
Has the participant ever been diagnosed by a doctor as allergic to any of the following foods or food groups? (Check all that apply.) 3625 2588 71.4%
Choose the MOTOR (muscle) symptoms that you experience after exposure to mammalian ingredients. (Select all that apply.) 3625 2591 71.5%
Choose the NERVOUS SYSTEM (reflexes) symptoms that you experience after exposure to mammalian ingredients. (Select all that apply.) 3625 2629 72.5%
Do you currently use products that have been genetically modified? 3625 2634 72.7%
Indicate your willingness to consume a food product such as steak, bacon, or lamb that is a product of animal biotechnology. 3625 2634 72.7%
Indicate your willingness to use OVER-THE-COUNTER MEDICATIONS with mammal ingredients that have had the alpha-gal carbohydrate removed and verified to be Alpha-gal free. 3625 2634 72.7%
Indicate your willingness to use PRESCRIPTION MEDICATIONS with mammal ingredients that have had the alpha-gal carbohydrate removed and verified to be Alpha-gal free. 3625 2634 72.7%
Indicate your willingness to use VACCINATIONS with mammal ingredients that have had the alpha-gal carbohydrate removed and verified to be Alpha-gal free. 3625 2634 72.7%
Indicate your willingness to use FOOD PRODUCTS such as steak, bacon, or lamb that have had the alpha-gal carbohydrate removed and verified to be Alpha-gal free. 3625 2634 72.7%
Indicate your willingness to use PERSONAL CARE PRODUCTS such as shampoo or cosmetics with mammal ingredients that have had the alpha-gal carbohydrate removed and verified to be Alpha-gal free. 3625 2634 72.7%
Indicate your willingness to use HOUSEHOLD PRODUCTS such as cleaning products or laundry detergent with mammal ingredients that have had the alpha-gal carbohydrate removed and verified to be Alpha-gal free. 3625 2634 72.7%
ACCESS_INFORMATION 3625 2658 73.3%
Where have you had exposures that caused reactions to occur? Check all that apply. 3625 2668 73.6%
When was your FIRST AGS blood test performed and what was your Alpha-gal IgE value? 3625 2668 73.6%
Choose the CARDIOVASCULAR (heart) symptoms you experience from a reaction to mammalian ingredients. (Select all that apply.) 3625 2676 73.8%
At what age did you first begin experiencing allergic reactions (e.g. eczema, hives, itching) to mammalian ingredients? 3625 2679 73.9%
What mammalian ingredients/items have you reacted to? Check all that apply. 3625 2684 74.0%
Choose the RESPIRATORY (lungs/breathing) symptoms you experience from a reaction to mammalian ingredients (Select all that apply.) 3625 2685 74.1%
How easy is it to identify Alpha-gal free vaccines? 3625 2692 74.3%
How easy is it to identify Alpha-gal free prescription medications? 3625 2694 74.3%
How easy is it to identify Alpha-gal free household items? Examples include cleaning products, laundry detergent, and dryer sheets. 3625 2694 74.3%
How easy is it to identify Alpha-gal free personal care products? Examples include shampoo, cosmetics, and soap. 3625 2695 74.3%
Choose the SKIN symptoms you experience from a reaction to mammalian ingredients. (Select all that apply.) 3625 2696 74.4%
How easy is it to identify Alpha-gal free over-the-counter medications? 3625 2696 74.4%
Would you use an Alpha-gal free valve replacement that was from a pig or other mammal that has been genetically modified? 3625 2697 74.4%
Choose the GASTROINTESTINAL (digestive tract) symptoms you experience from a reaction to mammalian ingredients. (Select all that apply.) 3625 2702 74.5%
Choose the EMOTIONAL/BEHAVIORAL symptoms you experience due to the Alpha-gal Syndrome diagnosis (Select all that apply.) 3625 2702 74.5%
COMORBID_DIAGNOSIS 3625 2704 74.6%
How many reactions did you experience prior to diagnosis? 3625 2707 74.7%
How easy is it to identify Alpha-gal free food products? (Likeart scale 1-10) 3625 2712 74.8%
If you needed a heart valve replacement and it were available, would you ask your healthcare provider to use an Alpha-gal free heart valve? 3625 2714 74.9%
Would you eat Alpha-gal free pork, beef, or lamb? 3625 2715 74.9%
What type of symptoms do you have? (Select all that apply.) 3625 2718 75.0%
Do you remember being bitten by a tick prior to symptoms of Alpha-gal Syndrome? 3625 2721 75.1%
At what age were you diagnosed with Alpha-gal Syndrome? 3625 2721 75.1%
Before you developed Alpha-gal Syndrome, what was your primary dietary preference? Please select the best option. 3625 2721 75.1%
Since your Alpha-gal Syndrome diagnosis, how many reactions do you have per year? 3625 2721 75.1%
Which of the following medical interventions have you experienced because of Alpha-gal Syndrome? 3625 2721 75.1%
How soon after exposure to mammalian ingredients do your reactions occur? Check all that apply. 3625 2721 75.1%
Do you have other family members diagnosed with AGS? 3625 2721 75.1%
OUTGROWN_OR_TOLERANT_TO_MAMMALIAN_INGREDIENTS 3625 2721 75.1%
You are invited to participate 3625 3604 99.4%
Respondent ID 3625 3624 100.0%
Collector ID 3625 3624 100.0%
Start Date 3625 3624 100.0%
End Date 3625 3624 100.0%
IP Address 3625 3624 100.0%
Have you been diagnosed with Alpha-gal Syndrome? 3625 3625 100.0%



Bias Rate



Question N Total N Answered N Non-response N Opt-out Response Rate Non-response Rate Opt-out Rate High Non-response? High Opt-out?
Please provide any additional input, comments, opinions, or suggestions below. Please feel free to share advice or feedback for healthcare providers, other AGS patients, or other affected individuals. 3625 1742 1883 450 48.1% 51.9% 12.4% TRUE TRUE
Besides avoidance of mammalian ingredients, are there other therapies or interventions you have discovered that help reduce the severity and frequency of Alpha-gal reactions or symptoms? Please Explain. 3625 2303 1322 357 63.5% 36.5% 9.8% TRUE TRUE
Ethnicity: 3625 2365 1260 0 65.2% 34.8% 0.0% TRUE FALSE
Education: 3625 2375 1250 249 65.5% 34.5% 6.9% TRUE TRUE
Have you ever been diagnosed with any of the following tick-borne conditions? Please check all that apply. 3625 2376 1249 6 65.5% 34.5% 0.2% TRUE FALSE
PREVENTION_METHOD 3625 2386 1239 1443 65.8% 34.2% 39.8% TRUE TRUE
Race (Select all that apply): 3625 2387 1238 56 65.8% 34.2% 1.5% TRUE FALSE
Household Income: 3625 2390 1235 92 65.9% 34.1% 2.5% TRUE FALSE
When was your MOST RECENT AGS blood test performed and what was your Alpha-gal IgE value? 3625 2405 1220 43 66.3% 33.7% 1.2% TRUE FALSE
Zip Code: 3625 2408 1217 0 66.4% 33.6% 0.0% TRUE FALSE
Gender: 3625 2429 1196 0 67.0% 33.0% 0.0% TRUE FALSE
Age Range: 3625 2434 1191 0 67.1% 32.9% 0.0% TRUE FALSE
This concludes our survey. THANK YOU for your participation. Do you want to be contacted by TBC United with information about future clinical trials or research studies?: 3625 2441 1184 86 67.3% 32.7% 2.4% TRUE FALSE
MENTAL_HEALTH_CONCERNS 3625 2461 1164 0 67.9% 32.1% 0.0% TRUE FALSE
What, if any, financial impacts (positive or negative) have you experienced due to Alpha-gal Syndrome? 3625 2466 1159 366 68.0% 32.0% 10.1% TRUE TRUE
What type of doctor or healthcare provider first made the Alpha-gal syndrome diagnosis? 3625 2474 1151 0 68.2% 31.8% 0.0% TRUE FALSE
What, if any, social impacts (positive or negative) have you experienced due to Alpha-gal Syndrome (e.g. ability to go out, spend time with family and friends, etc)? 3625 2522 1103 298 69.6% 30.4% 8.2% TRUE TRUE
Has the participant ever been diagnosed by a doctor as allergic to any of the following foods or food groups? (Check all that apply.) 3625 2588 1037 283 71.4% 28.6% 7.8% TRUE TRUE
Choose the MOTOR (muscle) symptoms that you experience after exposure to mammalian ingredients. (Select all that apply.) 3625 2591 1034 0 71.5% 28.5% 0.0% TRUE FALSE
Choose the NERVOUS SYSTEM (reflexes) symptoms that you experience after exposure to mammalian ingredients. (Select all that apply.) 3625 2629 996 279 72.5% 27.5% 7.7% TRUE TRUE
Do you currently use products that have been genetically modified? 3625 2634 991 0 72.7% 27.3% 0.0% TRUE FALSE
Indicate your willingness to consume a food product such as steak, bacon, or lamb that is a product of animal biotechnology. 3625 2634 991 0 72.7% 27.3% 0.0% TRUE FALSE
Indicate your willingness to use OVER-THE-COUNTER MEDICATIONS with mammal ingredients that have had the alpha-gal carbohydrate removed and verified to be Alpha-gal free. 3625 2634 991 0 72.7% 27.3% 0.0% TRUE FALSE
Indicate your willingness to use PRESCRIPTION MEDICATIONS with mammal ingredients that have had the alpha-gal carbohydrate removed and verified to be Alpha-gal free. 3625 2634 991 0 72.7% 27.3% 0.0% TRUE FALSE
Indicate your willingness to use VACCINATIONS with mammal ingredients that have had the alpha-gal carbohydrate removed and verified to be Alpha-gal free. 3625 2634 991 0 72.7% 27.3% 0.0% TRUE FALSE
Indicate your willingness to use FOOD PRODUCTS such as steak, bacon, or lamb that have had the alpha-gal carbohydrate removed and verified to be Alpha-gal free. 3625 2634 991 0 72.7% 27.3% 0.0% TRUE FALSE
Indicate your willingness to use PERSONAL CARE PRODUCTS such as shampoo or cosmetics with mammal ingredients that have had the alpha-gal carbohydrate removed and verified to be Alpha-gal free. 3625 2634 991 0 72.7% 27.3% 0.0% TRUE FALSE
Indicate your willingness to use HOUSEHOLD PRODUCTS such as cleaning products or laundry detergent with mammal ingredients that have had the alpha-gal carbohydrate removed and verified to be Alpha-gal free. 3625 2634 991 0 72.7% 27.3% 0.0% TRUE FALSE
ACCESS_INFORMATION 3625 2658 967 0 73.3% 26.7% 0.0% TRUE FALSE
When was your FIRST AGS blood test performed and what was your Alpha-gal IgE value? 3625 2668 957 11 73.6% 26.4% 0.3% TRUE FALSE
Where have you had exposures that caused reactions to occur? Check all that apply. 3625 2668 957 0 73.6% 26.4% 0.0% TRUE FALSE
Choose the CARDIOVASCULAR (heart) symptoms you experience from a reaction to mammalian ingredients. (Select all that apply.) 3625 2676 949 0 73.8% 26.2% 0.0% TRUE FALSE
At what age did you first begin experiencing allergic reactions (e.g. eczema, hives, itching) to mammalian ingredients? 3625 2679 946 0 73.9% 26.1% 0.0% TRUE FALSE
What mammalian ingredients/items have you reacted to? Check all that apply. 3625 2684 941 1267 74.0% 26.0% 35.0% TRUE TRUE
Choose the RESPIRATORY (lungs/breathing) symptoms you experience from a reaction to mammalian ingredients (Select all that apply.) 3625 2685 940 1812 74.1% 25.9% 50.0% TRUE TRUE
How easy is it to identify Alpha-gal free vaccines? 3625 2692 933 0 74.3% 25.7% 0.0% TRUE FALSE
How easy is it to identify Alpha-gal free prescription medications? 3625 2694 931 0 74.3% 25.7% 0.0% TRUE FALSE
How easy is it to identify Alpha-gal free household items? Examples include cleaning products, laundry detergent, and dryer sheets. 3625 2694 931 0 74.3% 25.7% 0.0% TRUE FALSE
How easy is it to identify Alpha-gal free personal care products? Examples include shampoo, cosmetics, and soap. 3625 2695 930 0 74.3% 25.7% 0.0% TRUE FALSE
Choose the SKIN symptoms you experience from a reaction to mammalian ingredients. (Select all that apply.) 3625 2696 929 0 74.4% 25.6% 0.0% TRUE FALSE
How easy is it to identify Alpha-gal free over-the-counter medications? 3625 2696 929 0 74.4% 25.6% 0.0% TRUE FALSE
Would you use an Alpha-gal free valve replacement that was from a pig or other mammal that has been genetically modified? 3625 2697 928 0 74.4% 25.6% 0.0% TRUE FALSE
Choose the GASTROINTESTINAL (digestive tract) symptoms you experience from a reaction to mammalian ingredients. (Select all that apply.) 3625 2702 923 1933 74.5% 25.5% 53.3% TRUE TRUE
Choose the EMOTIONAL/BEHAVIORAL symptoms you experience due to the Alpha-gal Syndrome diagnosis (Select all that apply.) 3625 2702 923 1051 74.5% 25.5% 29.0% TRUE TRUE
COMORBID_DIAGNOSIS 3625 2704 921 724 74.6% 25.4% 20.0% TRUE TRUE
How many reactions did you experience prior to diagnosis? 3625 2707 918 0 74.7% 25.3% 0.0% TRUE FALSE
How easy is it to identify Alpha-gal free food products? (Likeart scale 1-10) 3625 2712 913 0 74.8% 25.2% 0.0% TRUE FALSE
If you needed a heart valve replacement and it were available, would you ask your healthcare provider to use an Alpha-gal free heart valve? 3625 2714 911 0 74.9% 25.1% 0.0% TRUE FALSE
Would you eat Alpha-gal free pork, beef, or lamb? 3625 2715 910 0 74.9% 25.1% 0.0% TRUE FALSE
What type of symptoms do you have? (Select all that apply.) 3625 2718 907 2427 75.0% 25.0% 67.0% TRUE TRUE
Do you have other family members diagnosed with AGS? 3625 2721 904 7 75.1% 24.9% 0.2% TRUE FALSE
Do you remember being bitten by a tick prior to symptoms of Alpha-gal Syndrome? 3625 2721 904 0 75.1% 24.9% 0.0% TRUE FALSE
At what age were you diagnosed with Alpha-gal Syndrome? 3625 2721 904 0 75.1% 24.9% 0.0% TRUE FALSE
Before you developed Alpha-gal Syndrome, what was your primary dietary preference? Please select the best option. 3625 2721 904 0 75.1% 24.9% 0.0% TRUE FALSE
Since your Alpha-gal Syndrome diagnosis, how many reactions do you have per year? 3625 2721 904 0 75.1% 24.9% 0.0% TRUE FALSE
Which of the following medical interventions have you experienced because of Alpha-gal Syndrome? 3625 2721 904 0 75.1% 24.9% 0.0% TRUE FALSE
How soon after exposure to mammalian ingredients do your reactions occur? Check all that apply. 3625 2721 904 0 75.1% 24.9% 0.0% TRUE FALSE
OUTGROWN_OR_TOLERANT_TO_MAMMALIAN_INGREDIENTS 3625 2721 904 0 75.1% 24.9% 0.0% TRUE FALSE



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