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Outnumbered - Celiac Disease and Multiple Chemical Sensitivities

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!

As always, Celiac.com welcomes your comments (see below).


Spread The Word



10 Responses:

 
old goat

said this on
11 Jan 2008 3:01:16 PM PST
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!

 
OLD GOAT

said this on
15 Jan 2008 7:11:34 PM PST
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

 
karen

said this on
01 Feb 2008 12:06:42 PM PST
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!

 
SuzieQ

said this on
05 Feb 2008 7:01:52 PM PST
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!!!

 
Mel

said this on
23 Mar 2008 1:21:28 PM PST
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

 
Ellie

said this on
06 May 2009 9:16:29 AM PST
Me too! I'm a celiac with a latex and SLS sensitivity and I'm having issues with chemical exposure at work now.

 
Joe Hawkins

said this on
05 Dec 2009 11:46:57 AM PST
I do not know if I am a Celiac, but I do know I have MCS. Worse I have allergic reactions to a whole slue of solvents and chemicals. I was diagnosed as the cause of my work with solvents unprotected for 16,000 hours or more (8 years). During that time is when my stomach started tearing me apart and ever since. What I have learned is chemicals can cause leaky gut syndrome. So your Celiac Disease was probably caused by chemical exposures in the first place. I was diagnosed with MCS in 1996 and MS more recently. My little sister has Addison Disease and she thinks she has this Celiac Disease also. Anyone try to figure out what would cause your sillia or whatever it is called in your stomach lining to get destroyed in the first place? Dr. Sherry A. Rogers found that chemical exposures cause a whole slue of diseases. The reason you have any allergies in the first place is because your liver and filtering system is already overtaxed. Dr. Rogers calls it total body load and she says you need to detox. My little sister is taking Natural Cellular Defense and she says that helps her. Your damage to your stomach and intestinal track is just another symptom of chemicals you are eating, drinking and breathing leeching down into your digestive system and wiping it out. Contrary to what the Pharmaceutical and Chemical Company propaganda is preaching concerning MCS and teaching using research from frauds like Dr. Ronald Gots, Steven Barrett, and "American Council on Science and Health" or "ACSH" and etc. You have been chemically damaged and they are trying to hide it with blaming it on the resulting diseases that the chemicals cause. Which is a whole slue of auto-immune diseases. I would not doubt that they are behind this whole website to throw you all off track in the first place. Even the food manufacturers are behind the false propaganda of MCS. Even Dr. Odell on the Radio. The research has been out their since the 90's to prove chemicals cause MCS. MS is also suspected as chemicals for the cause. I looked in a old hazardous handling volume (1974) from a local library in 1995 - 96 and it says over exposure causes chemical sensitivity. That was one of the symptoms and they knew that since the 50's. In one of my court cases I brought that out and those Volumes disappeared from that library ever since. You could not even check those out so they where either stolen or they got the library to destroy them in Pleasant Hill California. Do not let these propaganda's fool you people. Yea you may feel better but you are still with MCS. You are only treating one more of the symptoms of chemical damage. Their are a whole slue of autoimmune disease caused by chemicals and it is being hidden from the general public by those large industries. Death is very valuable to those industries. Drug are used to treat your symptoms. That is multi-billions a year. Medical doctors get rich treating your symptoms and again that is Multi-billions of dollars a year. Food manufacturers substitute the real thing with cheap chemicals and that saves them multi-billions of dollars a year. Bill Moyer's did a PBS report on Trade Secrets and found memo's showing the chemical industries are considering themselves at war with the general public which is why the giant propaganda machine is going now. Do not let them sidetrack you from the truth! Chemicals are the culprit here and of other places and symptoms!

Take Care, Sincerely,
Joe Hawkins

 
deb

said this on
02 Sep 2011 6:10:47 PM PST
I've been down and out with MCS for 20+years. I decided that I was allergic to doctors 10 years ago. I lost the use of my legs, was put on one medication and then another, from one doctor to another. There is not one doctor in my town that treats or understands MCS. I have done all I can do but have lost over 20 lbs. and feel like I'm starving, I have become so weak and I'm short of breath just doing simple things. Ive don't know how I never came across this site before.. Thank you all so much. So after 10 years Ive gone to a gastro doc. blood test done today endoscope in 2 weeks..but ...but..he also ordered a gastro emptying study...I didn't know what it was. So I love the Internet..I have to ingest a radioactive substance...so it scares me, I can't even tolerate Advil. What do you think? Has anyone Done this?

 
R.C. Butler

said this on
16 May 2012 2:31:49 PM PST
For those of you that know you have MCS/CS/IEI please see the Chemical Injury Information Network website for additional information. My doctor diagnosed me with MCS/CS over 20 years ago. Eat organic, drink (commercial grade) water, wear organic if possible (do not wear clothes from China and India especially), and keep a daily log of what you do and how you feel. Medications have coatings and man-made dyes = stay away from them! Look for a good allergist who is familiar with MCS/CS/IEI (CIIN has a list). Lots of doctors still think there is no such thing as MCS. Even with 9/11, Vets of Viet Nam and the Gulf Wars, etc. You are not crazy. There are doctors who know what this is and can help. Watch out for the quacks, doctors who want to Rx a lot of drugs, etc. Do breathing exercises, carry a filtering mask (one that is for chemicals) with you at all times and drink lots of filtered or filtered distilled water. Chemical companies, pharmacuticals, and manufacturing firms do not want you to know what is in all the stuff you consume and use. Best wishes to you all. You are not alone. Over 9% of the US population have diagnosed Chemical Sensitivity! And there are thousands who do not realize that they too are sensitive to their environment.

 
Nala

said this on
27 Aug 2016 1:29:08 AM PST
A couple months ago, my allergist/immunologist did extensive testing to air-borne allergens to see if we could discover the root cause of my persistent runny/stuffy nose & clogged ear. After I tested negative for all of them he says, you either have:
*A sinus deformity or polyp that´s causing a persistent state of inflammation (need to see an ENT)
*Chemical Sensitivty
*An Oral Food Allergy
Or
*A Metabolic Issue.

I went home and started researching Chemical Sensitivity. In many cases I found Chemical Sensitivty was related to a metabolic issue, and more specifically, the body´s ability to detoxify naturally.

At the point I saw my allergist/immunologist, I was sensitive to perfumes and would move away, but I didn´t have any major reactions.

I´ve been testing out different makeup looks and wearing them as long as possible for my son´s upcoming wedding. I started noticing dark circles under my eyes getting worse. Was the makeup causing this? Mind you, all my makeup and personal care items are gluten free (I get hives, raw red skin otherwise).

Then, roughly 2 weeks ago, I had put on sunscreen and was outside when all of a sudden I felt extremely nauseous, dizzy, my head was pounding - the start of a major migraine, lightheaded and like my legs were about to crumble. I had reached a tipping point.

When I got home, I started googling ways to detox. I really didn't want to ingest anything. I found info about dry brushing and a coffee-sugar scrub (or coffee-salt scrub). At this point, I was desperate. I needed to alleviate these symptoms or head to the hospital.

I dry brushed, then took a shower and used the coffee-sugar scrub. The dry brushing took the edge off. As I was midway through the coffee-sugar scrub, I could feel my stomach settling down, the migraine was almost gone, and I could stand without holding onto the wall.

Afterward, I jumped on the internet again. What would cause the body to not be able to detoxify naturally? It appears there are quite a few genetic polymorphisms (some may refer to these as mutations or variants) that are related to metabolic pathways that convert the nutrients we take in into the active level our cells need. Hmmm...could this also be the reason my body can´t produce T3? Or why I was hopsitalized 3 times as an infant with iron deficiency anemia?

There are many different gene polymorphisms that could affect each of us. I started digging through the common ones taking note of the conditions they cause and what I had seen in my parents and both maternal and paternal lines.

While reading about MTHFR, I came across something that said if you have high levels of B12, your body isn't using B12 and that you may need methyl B12 or methylfolate. My B12 tested very high, out of the range, yet my doctor didn't think it was bad, as I was taking B12. Yet, I knew now, my body was not eliminating toxins, they were building up in my system.

Next steps:
*genetic testing (23andme) - need to know exactly which genes are in affected
*organic acid test or nutreval test
*heavy metals test
*having remaining "silver" fillings replaced with environmentally safe alternatives

I looked at the sunscreen´s ingredients - one of them affects hormones...just what a peri-menopausal woman needs! The makeup - contained ingredients the FDA says are toxic if ingested...yet, they allow it to be used in makeup?!? And, makeup, personal care items, cleaning supplies, etc do not have to declare every ingredient. Some of the makeup also had Passiflora ___. This is an ingredient derived from Passionfruit which has a protein that is linked to cross-reactivity in latex-fruit reactions. I once had a Starbuck's Passionfruit Iced Tea which caused my tongue to tingle and my throat start to close. That´s when I discovered the latex-fruit reactions. I also have to avoid Agave.

Meanwhile, as I´m researching, I realize I´m still getting worse. I honestly feel like I did before I started eating gluten free 4.5 years ago. Pick up one of my prescriptions and it dawns on me...the pharmacy in Target was taken over by CVS a few months ago. Did all the information about my gluten intolerance or latex allergy get communicated or transferred into CVS´ system? Yes and no. It was there, in a note. Nothing that came up and flagged the pharmacist. In the past, if a medication had either gluten or latex, the pharmacist would call me to let me know the doctor had to prescribe something else.

My endocrinologist had been giving me samples until he could figure out my dosages with adding in the T3. I didn´t think anything of it when he prescribed Synthroid even though the samples had been Tirosint. I´d been on Synthroid before without any problems...until now. I jumped on DailyMed and plugged in the NDC code and found this manufacturer of Synthroid not only includes gluten it also has acacia, which could be latex cross-reactive! For the past 44 days I´ve been ingesting both gluten and latex, no wonder I´m so sick again.

Another thing that has contributed to my toxic load...weight loss. It seems when the body can´t excrete fat soluble toxins, it hides them away in fat cells. I´ve been losing weight using a doctor prescribed medication and so far have lost 35 pounds. How many toxins were hiding in the 35 pounds of fat? Enough to make me sick, that´s for sure.

I've read promising case stories of individuals who have eliminated their MCS by addressing vitamins needed to support any broken metabolic pathyways. I´m praying I get answers with the testing.




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