Rant about my trip to the allergist about dye allergy

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Date Joined May 2005
Total Posts : 4219
   Posted 11/1/2007 10:13 AM (GMT -6)   
Hey allergy folks- I posted this in crohns but thought Id share w/ you too since you all gave me some heads up about my first visit to the allergist.
All too often here we hear stories of crappy doctors.  I have been lucky so far that since my move 3 years ago I have had nothing but the best doctors.  I had high hopes that life in Maine really is "the way it should be."  Until I went to the allergist.  They have a stunning website that makes them look so state of the art.  They are the only allergist in the area.  I get there in the place is old and dingy at best.  Everyone looks miserable.  I try to crack a joke w/ the receptionist and she looks at me like I have 3 heads.  And they can't be worn out yet! I'm the first appointment of the day.  I have to explain things three different ways for my nurse to get it.  She is visibly not getting along w/ one of the doctors.  She wants to measure my height.  I am wearing flat slippers w/o socks but she insists I take them off to stand on a piece of dirty looking floor (where Im sure 10 other dirty feet have been).  Gross. 
So then the doctor comes in and asks me why Im there, even though I had told the nurse, and filled out the paperwork.  I explained that when I was young, I was allergic to artificially flavored stuff w/ dyes in it but grew out of it.  When I got older I found my process of elimination that I was allergic to red dye.  Recently I have been having the same reaction without eating foods with red dyes.  He looked at me, grinned like he was trying not to laugh, scoffed, and said "true dye allergies are very rare, I don't think you have it." So I said, ok thats fine but I would like to find out then what I am allergic to so I can avoid it.  I gave him some examples of foods that had caused a reaction (campbells tomato soup and sunchips) that did not contain dye.  I also gave him examples of times I had dye reactions including one where my lips and tongue swelled after taking Nyquil. 
So, then he leaves and has the nurse come in with a long list of foods, and asks me to check off which ones I want to be tested for, for allergic reactions.  I look at it and there is no spot for dyes or preservatives, or any of the unnatural things I find I react to.  She explains that they can not do the prick test for things that are not proteins and that the only way to test for the things I am concerned about would be a placebo test.
So I just check off stuff that is also in the stuff Ive reacted to from dyes (such as tomato, strawberry, etc.) even though I know the test is going to be pointless.  At least I was able to also get tested for environmental factors and find out what was causing my seasonal allergies.  (Its grass.)  The doctor first did a plain scratch test just to see about my skins sensitivities.  He may have even used his fingernail, I dont know (gross.)  I did start to break out in hives around it.  So he concludes that I just have sensitive skin causing my itching issues.  The nurse however, notes that I have crohns and that it may be my immune system fighting something that isn't there.  (Why are the nurses always smarter than the doctors?).
Then the doctor gives me a bunch of pamphlets to read while the pointless testing works its magic.  It says right in them that although rare, artificial dyes have been identified as potential allergens.  So when he comes back I say, I understand that these are rare but it says here that they are a possibility.  I have had very rare issues before, including a stone in my salavary gland that took 4 doctors to diagnose.  I don't want to rule this out simply because it is rare.  But the only way to test for it would be this placebo test which I feel I have already done on my own.  I broke out at my in laws and we looked at the ingrediants of our dinner and sure enough, it inadvertantly had red dye.  That is a double blind test.  What stumps me though is the products that don't have red dye that are causing the same reaction but are typically red.  I guess that part could just be in my head, because as I eat red things I expect a reaction.
I admitted to the doctor that keeping a food journal is hard because I feel that is encouraging the placebo effect.  One can think themselves itchy.  He seemed to imply that the placebo effect is the cause of ALL my allergy problems.
So I called my husband after and laughed about what a waste of time it is.  My husband has joked with me forever that all my medical problems are in my head.  Expecting him to enjoy this "diagnosis" he surprised me.  He just flatly said, "the guys obviously wrong."  He has seen first hand how things with dye effect me especially when I didn't know it was there.  Those four little words meant so much.
I guess Im just back to avoiding all things red, orange and purple... at least artificially.  I just wish he would have admitted that this could be my problem.

Wanted to add: even after the doctor determined how sensitive my skin is (from scratching it) the nurse wrote all over my back in PEN to mark where she was doing each test.  I asked her if I might react to the pen instead of the test and she said "you might."  I dont understand why she couldn't have a chart of my back and write it on there intead.  GRRRRR.

25 Year old married female.  Diagnosed w/ CD 2 years ago, IBS for over 10 years before that, which was probably the CD.
I started getting a ton of junkmail after putting my myspace profile link on here.  Im taking it off but if you want to contact me just email me and Ill give you a link to my myspace.  Sorry!

Post Edited (FitzyK23) : 11/1/2007 9:51:45 AM (GMT-6)

Another Day
Veteran Member

Date Joined Mar 2007
Total Posts : 1055
   Posted 11/2/2007 1:09 AM (GMT -6)   
Boy, I can understand your frustration.  It certainly sounds like a wasted trip and he is supposed to be the best in the area?  What are your plans now?  Have you ever had the RAST test done?  It's been almost 20 years since I had it and it certainly helped me with food allergies.  I don't know if it shows dyes or not.  It might be worth you looking into.  Please keep us posted if you do anything else.
Take care!

Moderator, Allergies/Asthma
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Epilepsy, asthma, GERD, depression, hypothyroidism, tinnitus

Veteran Member

Date Joined Aug 2007
Total Posts : 4415
   Posted 11/2/2007 2:33 AM (GMT -6)   
There aren't any tests I know of for dye, preservative, or other additive allergies, other than the oral challenge test. Perhaps a skin test could be done, if the dye is mixed with saline and applied topically with a prick like the regular skin tests are done, or in patch fashion, applied on a metal disc and taped on the skin for a few days?

I've got pretty severe preservative allergies, so I sympathize with the difficulty in convincing the "medical establishment" about "rare" allergies.

Take care,
Gluten & Sulfite Sensitivity, Multiple Food & Inhalant & Medication Allergies, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, Very Low Lymphocyte Counts (T-Cells & B-Cells), malabsorption/malnutrition, etc.
Meds:  Pulmicort, Injectable Vitamin B12, Herbs, Nutritional Supplements, Essential Oils, Homeopathy.

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