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What A Swell Party This Is!

Do you  wear paper cuts like medals of honor, because being a Celiac means not licking glue strips on envelopes? This morning I moistened the sealer on an envelope with a wet cloth and was soon reeling and swelling like a watermelon on growth hormones just from the fumes out-gassing.

The diet I follow does not mandate avoiding substances that are not ingested.  So while toothpaste would qualify for restriction, glue and play-dough would not.

Which is why historically, I paid little attention to the typical environmental gluten restrictions. I have been  very preoccupied with Multiple Chemical Sensitivity triggers, plastics, inks, pesticides, perfume and cleaning agents. Throw latex allergy into the mix and life is an on-going game of dodge ball :-(

No doctor or allergist ever advised me about the danger of non-food gluten  exposures. Today, following an envelope episode, I  got the wake up call and  began to research this. I learned what most of you probably know already--that Gluten exposures may be generated by the smell or touch of gluten.

My waistline will expand up to two inches from an exposure. I notice the smell of freshly baked bread and touching certain pills mean I am going to need to yell, "Lace me tighter, Mammy," like Scarlett O'Hara did sixty-nine years ago in the film "Gone With the Wind."

As I read more about
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non-food items containing gluten what I experienced was confirmed.  Glue on "lick-able"  envelopes and stamps can be culprits. Self-stick labels and stickers may contain gluten. Latex or rubber gloves  are often dusted with wheat or oat flour. Since I am allergic to the gloves themselves, its not a problem I've encountered. My, dentist uses non powdered vinyl gloves when he treats me.

Gluten hides in art supplies, and materials like the aforementioned play dough. It lurks in many personal items such as lipstick, lip balm, sunscreen, shampoos, soaps, cosmetics, skin lotions, toothpaste, and mouthwash. Fortunately, over time I have isolated friendly cosmetic products and soap but by trial and error.

Since household products such as cleaning solutions, detergents, even bar soap may contain gluten, I'm beginning to think what I believed was provoking Multiple Chemical Sensitivity reactions is primarily due to being Celiac.  I might never known had I not subscribed to this list.

Medications frequently contain gluten. Pills get dusted with flour during manufacturing so they won't "clump" and capsules may have gluten hiding in the oil inside. I am one lucky lady as our city's most skillful compounding pharmacist is located less than a mile away, and even provides free delivery service.

Meanwhile there is quite an obstacle course spiked with gluten land mines for me and other Celiac to navigate if we don't want to be guests of honor at that "swell party"

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


Spread The Word







4 Responses:

 
carey

said this on
07 Jan 2008 10:45:47 PM PDT
I knew about the envelopes and suffer the nightly swell party. Its hard to walk through the mall without getting a headache or stomachache. I didn't know about some of the school supplies. I home school 3 boys and get exposed to a lot. Thank you for sharing more info. It always helps.

 
Eloise

said this on
10 Jan 2008 6:03:20 PM PDT
For cleaning product ideas, you may want to check our Deidre Imus' book 'Green This' which has some good old fashioned/organic, non-27 letter-chemical suggestions for household cleaning products that actually work. Simple cheap stuff like baking soda, vinegar, lemon juice, the stuff grandma used. Good ideas for anybody, not just celiacs. Good for our planet too since they are biodegradable.

 
denise quinn

said this on
12 Jan 2008 10:21:20 AM PDT
I found it very educational and informative I have recently learned that I have celiac disease and have struggled following the diet I found that I have swelling in my stomach and get headaches and nausea often I think its very hard to accept and adjust from things you've eaten all your life.

 
Andrea

said this on
05 Apr 2010 3:19:27 PM PDT
This is my story. I have celiac and my gut swells up and I'm in pain (as though I've eaten bread) from hairsprays or from most pharmaceutical cosmetics. When I handle envelopes I always wash my hands afterward. It took a very long time to make the connection. I always thought I was getting glutened through food somehow.




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Kaiser offers the full panel, but a primary care MD can not order it -- only a GI. Again, a visual is not needed. Damage is usually severe if it can be seen visually (e.g. Scalloping, etc.). Villi are microscopic though. When you got the referral, you probably should have found a GI on your own by searching through the Kaiser directory and finding one who has some mention of celiac disease in his bio. Too late, but that is kind of how it works. Your PCP does not know the GI docs. The scheduler just makes appointments. So, now, that you have been referred to a GI, you can probably schedule another appointment on your own by passing your PCP. Wait first for the pathologist's report. They might not put it on the patient portal, so get a hard copy for your records. If it is negative and they took four or biopsies, you will have your answer. Then you can consider trialing the diet. If they did not take enough samples, ask for the DGP and EMA tests, including the control test IGA deficiency (which affects 10% of celiacs, but do not quote me on this). You could wait a few years until you think damage is severe enough to find. celiac disease can be hard to diagnose. It can develop at anytime. Don't forget you might have a gluten sensitivity too and not celiac disease. Kaiser responds well to requests in writing. Try the patient portal first before a registered letter. If they are not following the standard level of care, they are at risk for a lawsuit. Be nice. Say something lame in your letter like, "We had such a nice short visit, so I forgot to ask ....blah, blah, blah." My own relatively new PCP is still learning about celiac disease. That is okay. At least she has an open mind.

It is gluten free...I eat it regularly and have had no issues and it tastes yummy. ?

A quick update: I emailed my primary doctor and she is on the same page as the GI doctor, saying the Endoscopy looks normal. Even before we've gotten the biopsy back. By the way, I should mention I'm dealing with Kaiser in the Bay Area, CA and everything I've found about Kaiser on these forums is horrible and similar to my own experience. I specifically asked about all the components of the full celiac panel and that I would like to get it and all she said was: "The lab tests are not perfect. Although they may indicate an increased risk for celiac, they are not as specific as the biopsy." So, now we should just ignore the positive IgG? How am I supposed to know if I'm IgA deficient if they don't test for that? I replied and asked again and she said that Kaiser doesn't offer the full panel. Why not? And I said I want vitamin and iron tests and no reply to that yet.

Thank you so much for all the help and support you have given me. I cannot thank you enough. I am ever so sorry to post again here but wondered if I could check with you about this. When at work, I very rarely get chance to eat a lot and so have always been eating the Milky Way UK bars, which I believe contain gluten or barley. I usually have around 6 of these as they tide me over until getting home. I also have two slices of bread on a morning. I was wondering whether this would be sufficient as I am worried in case I haven't had enough gluten? Thank you for everything and I wanted to apologise for being a nuisance on here.

Thanks Matt I appreciate your response and assistance getting " moved to my own thread" thanks so much. I do have the results of my labs they took and am unsure which labs are which so I will try to attach them and perhaps someone can help me decode them.? Thanks again Heidi