Carol Frilegh
I am 77 an undiagnosed Celiac, since March 2000. I had chronic sinus infections and fluctuating weight, lost 86 pounds, got pneumonia, and needed antibiotic and Prednisone. I also got MCS and Latex Allergy. Unable to eat without pain, I started The Specific Carbohydrate Diet (SCD). Things began to improve at once. I am not cured but SCD has been effective in managing the Celiac and helped improve my damaged immune system. It is a bit stricter than the gluten-free casein-free diet, but
Outnumbered - Celiac Disease and Multiple Chemical Sensitivities
- By Carol Frilegh
- Published 01/11/2008
Do you buy lottery tickets, bet on the horses, frequent casinos, or take your vacation in LasVegas?
Over seven decades, I've won once at roulette, once on the slots and asked someone at the racetrack to put down my two dollars on a thirty three to one shot- - - a filly with the same name as my poodle. The horse won but the friend forgot to place the wager. What was even worse, subsequently the poodle ran away and died from eating garbage. With health matters, bookmakers would have a blast with me.
The National Institutes of Health reports that one of every 133 Americans has celiac disease. Only a small fraction have been diagnosed and Americans are not routinely screened for celiac disease.
Food allergies affect almost four percent of North Americans.
A surprising number of people report sensitivity to ordinary everyday chemicals. The figures range from an average of eleven to seventeen percent, with spikes as high as thirty percent of subjects who report reactions to multiple chemical incitants.
Reports about the prevalence of latex allergy vary greatly. This variation is probably due to different levels of exposure and methods for estimating latex sensitization or allergy. Recent reports in the scientific literature indicate that from about 1% to 6% of the general population and about 8% to 12% of regularly exposed health care workers are sensitized to latex.
It's a home run and then some! I'm batting, or battling four out of four and am not alone. I have noticed various health support lists have their own quota of unfortunates afflicted with the quadruple whammy. I checked some gluten-free forums and noted many respondents reporting assorted sensitivities were also following gluten-free diets.
"Rachel" reported from the Gluten-Free Celiac Disease Forum (www.glutenfreeforum.com), "Yes...I have chemical sensitivities. Its better since gluten-free but the sensitivities are still there...it gets worse or better according to my diet which I'm still trying to figure out. I've been gluten-free for over a year now so its something else that is triggering the sensitivities, not gluten. I have problems with fragrances...some perfumes kill me. I work in a grocery store and when they wax the floor I can always tell as soon I walk through the doors."
Chemical sensitivities have many symptoms such as light-headedness, fatigue, headaches, and recurrent illnesses that have no other explanation. Reactions may vary widely from one person to another but the treatment for all is avoidance. Direct contact with the substance is not always required to cause a reaction. It is a difficult sensitivity to pin down, and may require close and prolonged observation to make the connections. Irritants lurk just about anywhere — carpets, laser printer toners, housing insulation, household cleaners, etc. Those affected often have to practice complete avoidance of many common substances.
Tests have been developed for some of the aforementioned four conditions.
Dr. Scot Lewey, a contributor to this board has written, "Those with known pollen or latex allergies, any known food allergies or intolerance including gluten intolerance (celiac disease) and casein intolerance, are asked to complete a series of symptoms assessment and severity rating scales followed by a strict elimination diet. This is followed up by re-assessment of response of symptoms while re-introducing foods one at a time while monitoring for recurrence."
Regarding multiple chemical sensitivities, which were not recognized by my physicians (who sent me to a psychiatrist), I received this nebulous diagnosis from the Environmental Illness Clinic at Toronto's Sunnybrook Health Sciences Center: "Ideopathic Environmental Illness" (meaning "cause unknown.")
After "cherry picking" the Internet in search of the likelihood that celiac disease, multiple chemical sensitivities, latex allergy and food sensitivity can go hand in hand. In time I untangled and managed to detach my celiac symptoms and isolated a typical and definite reaction to grain and lactose.
One thing is certain, I am outnumbered! I feel under attack by a chain gang. And they are an elusive aggregation because what bothers me one day may not on another.
Presidential candidates are not the only ones who want change!
Over seven decades, I've won once at roulette, once on the slots and asked someone at the racetrack to put down my two dollars on a thirty three to one shot- - - a filly with the same name as my poodle. The horse won but the friend forgot to place the wager. What was even worse, subsequently the poodle ran away and died from eating garbage. With health matters, bookmakers would have a blast with me.
The National Institutes of Health reports that one of every 133 Americans has celiac disease. Only a small fraction have been diagnosed and Americans are not routinely screened for celiac disease.
Food allergies affect almost four percent of North Americans.
A surprising number of people report sensitivity to ordinary everyday chemicals. The figures range from an average of eleven to seventeen percent, with spikes as high as thirty percent of subjects who report reactions to multiple chemical incitants.
Reports about the prevalence of latex allergy vary greatly. This variation is probably due to different levels of exposure and methods for estimating latex sensitization or allergy. Recent reports in the scientific literature indicate that from about 1% to 6% of the general population and about 8% to 12% of regularly exposed health care workers are sensitized to latex.
It's a home run and then some! I'm batting, or battling four out of four and am not alone. I have noticed various health support lists have their own quota of unfortunates afflicted with the quadruple whammy. I checked some gluten-free forums and noted many respondents reporting assorted sensitivities were also following gluten-free diets.
"Rachel" reported from the Gluten-Free Celiac Disease Forum (www.glutenfreeforum.com), "Yes...I have chemical sensitivities. Its better since gluten-free but the sensitivities are still there...it gets worse or better according to my diet which I'm still trying to figure out. I've been gluten-free for over a year now so its something else that is triggering the sensitivities, not gluten. I have problems with fragrances...some perfumes kill me. I work in a grocery store and when they wax the floor I can always tell as soon I walk through the doors."
Chemical sensitivities have many symptoms such as light-headedness, fatigue, headaches, and recurrent illnesses that have no other explanation. Reactions may vary widely from one person to another but the treatment for all is avoidance. Direct contact with the substance is not always required to cause a reaction. It is a difficult sensitivity to pin down, and may require close and prolonged observation to make the connections. Irritants lurk just about anywhere — carpets, laser printer toners, housing insulation, household cleaners, etc. Those affected often have to practice complete avoidance of many common substances.
Tests have been developed for some of the aforementioned four conditions.
Dr. Scot Lewey, a contributor to this board has written, "Those with known pollen or latex allergies, any known food allergies or intolerance including gluten intolerance (celiac disease) and casein intolerance, are asked to complete a series of symptoms assessment and severity rating scales followed by a strict elimination diet. This is followed up by re-assessment of response of symptoms while re-introducing foods one at a time while monitoring for recurrence."
Regarding multiple chemical sensitivities, which were not recognized by my physicians (who sent me to a psychiatrist), I received this nebulous diagnosis from the Environmental Illness Clinic at Toronto's Sunnybrook Health Sciences Center: "Ideopathic Environmental Illness" (meaning "cause unknown.")
After "cherry picking" the Internet in search of the likelihood that celiac disease, multiple chemical sensitivities, latex allergy and food sensitivity can go hand in hand. In time I untangled and managed to detach my celiac symptoms and isolated a typical and definite reaction to grain and lactose.
One thing is certain, I am outnumbered! I feel under attack by a chain gang. And they are an elusive aggregation because what bothers me one day may not on another.
Presidential candidates are not the only ones who want change!
Spread The Word
Comments
#1 ( old goat)
Stick to your diet and the chemical sensitives will improve. It takes time and a lot of learning. Watch for sheet rock dust and spackle, glues and paints they too may contain gluten.Worse comes to worse go to a third world country and eat naturally and see how good you will feel -- Good luck!
#2 ( OLD GOAT)
Tooth pastes can be effectively substituted with baking soda and much less money. If you like the wet feel rather than dry powder-mix with peroxide for a real cleaning. I am still working on a solution for soap-body, hair and laundry
#3 ( karen)
If you feel there's still something else out there getting you, first of all, try avoiding fluoride and see if this helps your MCS symptoms as it did mine - don't use toothpaste or mouthwash containing it, and don't drink water that has been treated with it. If you google the words "fluoride adverse effects" you'll be amazed. A while back, I started to suspect it might be a problem for me, and sure enough, after avoiding it my MCS symptoms vastly improved. Also, don't eat or use ANYTHING topically that has artificial color as part of its ingredients. For me, food coloring/dyes are a true poison. I suggest you research dyes, as many of them contain gluten, AND many of them are derived from petrochemicals (probably the biggest antagonist to those with MCS). Hope this helps!
#4 ( SuzieQ)
Timing is everything. I have spent the last year on an elimination diet after ending up in the ER due to a bad reaction to a thyroid med. I had blood work for food allergies & we mostly focused on those. Then when the nutritionist could no longer help me I was referred to an allergist where I thought I would have further testing then get cured by having allergy shots. My allergist who also specializes in autoimmune disorders, pediatrics and environmental illnesses took one look at me and said I was celiac. Which did come up as an allergy in the blood work and a reactor when reintroduced into my diet. Apparently I have been celiac for over 30 years and due to the damage to my villi I am suffering close to malabsorption at the moment along with severe chemical sensitivity. I have been feeling quite blue and isolated. Somewhat of an outcast. A friend suggested I check out blogs and this is the site I found. Big help - I am not alone after all!! and it sounds like the doctor is right on track with his findings. Thanks so much to everyone for sharing!!!
#5 ( Mel)
Wow - I read the postings on the home page. I was diagnosed with MCS at the Environmental Health Clinic at Women's College in 2002.
I have low iron levels, haemoglobin and ferritin levels, which they say, leaves me with very little bone marrow.
Does anyone have information on MCS-heme and celiac?
Mel