Allergic to something, can't figure out what

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scifigal2k
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Date Joined May 2012
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   Posted 6/29/2015 8:36 AM (GMT -6)   
Hi everyone,
I have been on HW for several years now, mostly on the Crohn's forum. I'm hoping you guys can help me out with something that's now started going on. I'm not new to the medical world at all (30 hospitalizations in the last 3.5 years), and I've always had some seasonal allergies, but I've never had any reaction like this before. The closest was when I developed a fentanyl patch allergy.

So 11 days ago on Thursday, I woke up at about 4a with my eyes swollen almost closed, lips and face swollen, and itchy hives on my arms and legs. I started taking 50 mg of benadryl and called my PCP, who saw me on Friday. He prescribed hydroxyzine (100 mg) and epi pens since there had been swelling on my lips. On Saturday I still woke up swollen, so the on-call doctor added 20 mg of prednisone. Sunday and Monday were a little bit better (hives still there, but facial swelling down).

Then on Tuesday I meet with an allergist. I have had no new medications, my last Remicade infusion was over 2 weeks before all of this started, and I haven't changed soaps or laundry detergent. I got rid of my down pillows, washed all sheets and clothes without a dryer sheet, and stopped going on my morning walks (about 4 miles every day; also, we have lots of mosquitoes in Denver). He had me get a new lotion in place of my regular one, switched me back to benadryl, and changed the prednisone to methylprednisolone.

Wednesday was still rough. Thursday I followed up with the allergist's NP, and things had started calming down slightly. She told me if I had any swelling of the lips, I needed to use the epi pen and go to the ER. I told her that that was 75% of the mornings since this started, so wouldn't it make sense to just admit me and treat me with IV meds? I really don't absorb oral medication with my Crohn's, so I had no idea of what I was taking was even working or not. She didn't like that idea because I could catch an infection in the hospital. She said to try to hold on to Tuesday so that they could do testing, which they wouldn't be able to do if they started me on Zyrtec.

Friday was a little better. Then Saturday it came back in full-force: hives now covering the entire body, swollen eyes and lips. I didn't go to the ER, though. But Sunday it was even worse and I started having a tightness in my chest and throat, so I used the epi pen and went to the ER. I got IV benadryl and steroids, which cleared things up in about an hour. They sent me home.

I was really hoping that this would stay clear until after my appointment Tuesday so I could get some lab work and skin tests to find out what might be causing this, but I woke up this morning completely covered in hives again. No facial swelling, thankfully, but the hives are pretty intense. Today is the last day of the prednisone taper. I have still been taking 50 mg of benadryl every 4 hours. (Oh, and my dermatologist gave me some steroid cream for my hands and bottom of my feet, which are also covered in hives and itchy).

I just have no idea what could be causing this or if there is anything more I can do? I don't have food allergies that I know of (I eat a very bland diet because of my Crohn's, and there hasn't been anything new added). My meds didn't change. I think I've re-washed my clothes and sheets four times now. I don't think the house has mold; we bought it last year, and I imagine the appraiser would have said something?

I guess I just need some advice or input or something. I really don't mind not finding out an answer in the long run, and I am okay with chronic hives. What I am NOT okay with is having to go to the ER every few days, or locking myself in the house with my poor two year old daughter who wants to go play.

Thanks everyone.
CD, gastroparesis, fibro, arthritis, GERD

Remicade

"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong." 2 Cor 12

achievinggrace
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Date Joined Nov 2009
Total Posts : 3266
   Posted 7/1/2015 6:41 AM (GMT -6)   
Sorry you are having such a harrowing time. I hope you and your allergist can come up with an answer soon so you can stay out of the ER and not miss out on fun with your daughter.
Allergies and Asthma Forum Moderator

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 7/1/2015 12:07 PM (GMT -6)   
scifigal, on the other thread about hives, a member said that they found they actually had a low-level infection and that was what was causing the hives. Could this be the case for you, as well?
Allergies and Asthma Forum Moderator

scifigal2k
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Date Joined May 2012
Total Posts : 3449
   Posted 7/1/2015 12:37 PM (GMT -6)   
Hi @achievinggrace, thanks for responding. I had an appt with my allergist yesterday. He and the nurses were pretty concerned about the hives. They gave me a shot of epinephrin right then, as well as liquid benadryl and liquid steroids and made me stay a couple of hours. Things went down a bit, but this morning it's right back up again. They tried to do it IV but couldn't get a needle in (I am a hard stick). We were wondering about the virus as well, so we tried to do lab work but again, couldn't get the needle in anywhere. I am all swollen from the hives/allergies and dehydrated because of so much benadryl. *sigh* I called them this morning to follow up, so now it's just waiting to see what they say to do moving forward.
CD, gastroparesis, fibro, arthritis, GERD

Remicade

"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong." 2 Cor 12

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 7/1/2015 5:46 PM (GMT -6)   
Hope they are super sleuths and find out what's causing this!
Allergies and Asthma Forum Moderator

Alcie
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Date Joined Oct 2009
Total Posts : 5004
   Posted 7/1/2015 7:21 PM (GMT -6)   
Just being on a bland diet doesn't mean you don't have food allergies. I'm sensitive (not "truly allergic") to lots of things that are bland.

Start keeping the often-referenced food diary (put keywords in the search box at the top of the page), which includes food, drinks, medicines, pollen in the area and anything else you can think of. It'll be pretty hard to figure out time of reactions since you have the hives all the time.

I'm sensitive to colors in medicines and liquid meds, particularly Benadryl. I'm fine with the white tablets. I haven't used my Epi-pens yet, but I know I'd react because of the preservative. My particular sensitivity is to sulfites, and I'm lucky because lots of people have the true allergy to it, with hives and the works. But that's my allergy, not necessarily yours.

I had a bad reaction to an IM shot of hydroxyzine, which may have been due to the preservative or the gelatin carrier in many shots and IV meds. I have no problem with little white meclizine tablets (related). I also react to immunizations because of the preservative and gelatin.

I found my allergen/food trigger with the help of my allergist who had me keep the food diary. My bland foods include gelatin (also in many meds), corn starch (filler in meds), sugar, particularly brown sugar, maple syrup, commercial breads including from bakeries, most cereals, especially if they contain molasses, corn syrup ... So you see, bland doesn't mean no allergy.

There's a good story from Housemouse about her skin allergy - like yours. She nearly died until she found her trigger. She is in the links section of www.learningtarget.com/nosulfites/index.htm or see www.housemouse.com/sulfites.htm and scroll down to her story before reading her cures.

Housemouse's trigger is also sulfite, but the story of how to find your trigger works no matter what your's is.

Just an idea. Not a doctor.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3449
   Posted 8/2/2015 7:29 AM (GMT -6)   
Thanks everyone, I really appreciate it! The only trigger I have been able to obviously see has been Nacho Doritos, which is random. But I think it is the red dye. That would explain why liquid benadryl (with my Crohn's I can't absorb the tablets) isn't super effective. I also just found out I am pregnant, and can't tolerate prenatal vitamins unless they are the gummies, but I figure it's worth tolerating the little bit of itching to get those nutrients.

I have an appt with the NP for my allergist on Tuesday and we'll see what she thinks of my theory. But one night, to test it, I ate almost an entire bag of Doritos and the next day looked AWFUL. It's sad, because these are my comfort food and I eat them when I feel crummy, lol. So I was just in a bad cycle. I have been eating them since college and never had a problem. Just goes to show how weird our bodies can be sometimes.
CD, gastroparesis, fibro, arthritis, GERD

Remicade

"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong." 2 Cor 12

AustenFan
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Date Joined Aug 2008
Total Posts : 1771
   Posted 8/2/2015 9:06 PM (GMT -6)   
That sounds just awful. I'm so sorry you are dealing with this. My first thought was food allergies, too. There are so many things lurking in foods you can be allergic to that it's often difficult to pinpoint. The swollen lips would also make me wonder if its food related. Has your doctor said anything about a RAST or ELISA blood test? You most likely wouldn't be a candidate for skin testing, but a blood test might help find the trouble maker.

And just for future reference, Benadryl makes a dye free liqui-gel capsule (but no liquid as far as I could find, which is crazy considering so many people are allergic to dye.) But Walgreens does have a dye free Benadryl liquid equivalent called "Walgreens Wal-Dryl Children's Allergy Oral Solution Dye-Free Bubble Gum."

Post Edited (AustenFan) : 8/2/2015 9:12:03 PM (GMT-6)


scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3449
   Posted 8/3/2015 9:56 AM (GMT -6)   
I may have jumped the gun on the dye, but it is definitely something in the doritos.....because I broke out horribly again, and this time with goldfish. So maybe paprika? Something that is in both of them.
CD, gastroparesis, fibro, arthritis, GERD

Remicade

"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong." 2 Cor 12

AustenFan
Veteran Member


Date Joined Aug 2008
Total Posts : 1771
   Posted 8/3/2015 10:23 AM (GMT -6)   
If you take the ingredient labels in to your allergist, she may be able to help pinpoint something and include it in a blood test.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3449
   Posted 8/3/2015 12:59 PM (GMT -6)   
Awesome, thank you!!
CD, gastroparesis, fibro, arthritis, GERD

Remicade

"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong." 2 Cor 12

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5004
   Posted 8/4/2015 5:36 PM (GMT -6)   
Whole corn, vegetable oil (corn, soybean, and/or sunflower oil), salt, cheddar cheese (milk, cheese cultures, salt, enzymes), maltodextrin, wheat flour, whey, monosodium glutamate, buttermilk solids, romano cheese (part skim cow's milk, cheese cultures, salt, enzymes), whey protein concentrate, onion powder,


Question?? Is the corn simply ground, or is it softened in the sulfite bath used in processing corn starch and dextrose and maltodextrose? Maybe ask the manufacturer.

According to Ask, "Cornflour, or cornstarch, is extracted from maize as a powdered starch. The process of extraction involves soaking and grinding maize kernels in order to isolate the germ from the bran. When written with a space (particularly in the United States), 'corn flour' refers to finely ground whole maize kernels or cornmeal."

So, if it's soaked (by that I mean in the sulfite bath), it's going to contain sulfite. The label just says corn, so it's not clear if it's ground dry or softened with sulfite and made into a powder.

Cheese has sulfite, also onion powder.

I'm very allergic to sunflower seeds, but not necessarily to the oil.

Goldfish is about the same except wheat flour instead of corn. It too has sunflower oil.

MSG, see the label I listed above. It's a huge allergen for many people!

You can acquire new allergies, and get rid of old ones, at any time. For a lot of people, like me, sulfite is an acquired allergy or sensitivity.

Your allergist won't know most of this! Just stop eating junk food entirely!
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