The Adventures of Hives and Prednisone

For the last few months, I’ve been feeling much better. My sleep patterns are more consistent and my energy levels are through the roof.

But every once in a while something will hit me and send a reminder through my body that I’m human and have a chronic disease. Most recently it was the mysterious hives which appeared over night on my arms and legs causing me to ferociously itch my body. Imagine the paranoia going on in my mind!

Dermatitis Herpetiformis?

Bed Bugs?

Poison Ivy?

Carpet Beetles?

What the heck were these things?? Nothing was working to curb the itching, stinging or them from forming again. They were localized to my ankles/calves and wrist/forearms. I searched in the internet for pictures of different bites and things but nothing seemed to resemble what I experienced. They were much worse than what I captured in this picture.

The mysterious hives

The mysterious hives

I’ve never suffered from poison ivy or any other skin problems like this so I didn’t know what to do or how to narrow it down.

My instant fear of having bed bugs flipped me into over drive. I went through our entire bedroom scouring the carpet, mattress and more for bugs. I even ripped the box spring open to see if they were clustered in the corners like I read online! Bed bugs were not something I wanted to deal with right now.

Then I thought, fleas? But I didn’t see anything resembling that on either of our dogs and my husband didn’t have one mark on him. I made an appointment with the dermatologist and was fortunate they were able to fit me in right away. He determined it was a contact dermatitis from something in our garage or the park where I take our dog swimming and gave me prednisone to take. Within a couple of days they were healing and now a week later, they are almost gone.

The prednisone made me so HUNGRY! One night we went to dinner and I ended up eating 2 dinners. I forced myself to eat as many salads and protein as I could consume to prevent me from over eating on bad foods. I’ve never felt such a tremendous need to eat in my life. I ate a whole meal and then felt compelled to eat more because I didn’t feel full. I advise anyone who is taking prednisone to avoid eating sugar filled processed foods because there is a huge potential for weight gain due to the hunger issues.

I just find new things every once in a while to keep me on my toes. It’s so frustrating at times that nothing is ever wrong with my husband! Can he get a hang nail or something so I feel a little bit better about having stuff always wrong with me!?!?!

Have you ever experienced anything like this?

Do you find since you went gluten-free and were diagnosed you are prone to more things like this?

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  1. My daughter will get unanswered hives once in a while. We have no idea what they are from, but she has been to the dr for them too. I’m sorry you had to go through this. It is no fun. :(

    • I’ve actually never had hives before! It is so strange. I’m hoping once the round of prednisone is done, I will be able to go back to normal.

  2. Prednisone is a MONSTER!!!! I take it far too often for asthma attacks or allergy issues. Sometimes I am like you, and crazy-hungry, and other times I am very very ill from it. Did you have any issues sleeping? I can never sleep while on Pred. but last month learned that 3 Valerian Root capsules work to help combat the “up all night, shaking, pacing insanity”. Sometimes it makes me hugely bloated, and more often than not I get really REALLY irritable and moody, and cry and rage at everything or nothing. It stinks when you don’t know what they are from!
    Jen recently posted…PUMPKIN WAFFLESMy Profile

    • I didn’t notice any problems with sleeping. For some reason, the last few weeks my sleep has been very steady and good. I think it’s because I’m finally on a routine of waking up at the same time every day. Last night I had an entire meal and then couldn’t stop eating deserts. It was crazy!

  3. Rebecca,
    There is an autoimmune condition called Mast Cell Activation Disorder which can cause intermittent hives. It is a new diagnosis, the first review paper was published in 2007. It is associated with food intolerances and many of the symptoms overlap with Celiac Disease. Jus throwing it out there. I am in the midst of getting evaluated for it.
    Jess recently posted…Eating Gluten Free During a 311 km Ragnar RelayMy Profile

    • Thanks Jess! I am going to look into this. I have 2 more days of prednisone left and then if they come back again, I will for sure have to look into it further. What kind of a doctor do you go to for testing?

      • Hi Rebecca, I am seeing an immunologist locally and them will be going on for further evaluation at either the Mayo Clinic or Brigham and Women’s in Boston as there are only a handful of medical centers which deal with this. There is a woman named Harriett on Twitter (@drhornetbupp) who has both Celiac Disease and MCAS and she has a wealth of information. From what I have learned it is most commonly seen in females in their thirties to fifties who have other autoimmune conditions, like Celiac Disease, and it is very under diagnosed. The treatment is to take antihistamines and sometimes mast cell stabilizing medications. I will be posting a lot about it as I learn about it.
        I hope that you find some answers!
        Jess recently posted…Eating Gluten Free During a 311 km Ragnar RelayMy Profile

  4. You may have gotten glutened by accident? I’m gluten intolerant but not celiac, and when I get glutened by a very small amount of something (like residual flour or a splash of regular soy sauce), I tend to have allergic symptoms like hives and itching and eye swelling/itchy eyes. A benedryl usually knocks it out, though. I haven’t needed extra pred for it, but I am usually on pred for other autoimmune issues so perhaps that’s why it hasn’t been so severe.

  5. Stephanie says:

    Prednisone is such a hard medication to take! It is unbelievable the hunger that happens! I ended up gaining 40 lbs. in a month and now can’t get it off! I remember that I could eat a big meal and turn around and need another one! I also had a lot of sleep problems! It really was hard on the emotions and stomach!

    I just recently started getting the same little hives like you’ve shown here! It really can itch at times! It is hard to know what caused them! I can relate to everything you’ve written here! Especially always having something wrong! My husband tells me he doesn’t even try to find an answer anymore when things pop up because it makes no sense!

    Hope things are getting better for you!

  6. Amanda Yoder says:

    I do find even though most of the time I feel better than ever since going off gluten, I do have more strange “issues” from time to time than before! Hope the pred. did its job and thats all it was!

  7. This is fascinating, my hives look exactly like yours. And you are right, I have tried to match pictures on the internet to my own hives and things just never matched up. For the past 2ish years I have got random rounds of hives for no reason. They seem to get worse when I am stressed out (moving, job interviews etc) but other that that there is no connection. Recently, I have stopped eating gluten due to a sensitivity with my stomach and digestive issues.
    This last round of hives have not gone away since last August and my derm. has decided it is linked to my deposhot birth control. I would have never thought that the gluten and the hives were related, and I am curious if once the shot is out of my system if my non-gluten diet with effect my hives any differently. Thank you for sharing your story.

  8. I have just been diagnosed with celiac at age 43 after a long health battle. When I was in my 30’s I was diagnosed with “chronic idocratic hives” meaning they didn’t know what caused them. They were just like your photo and sometimes they would be so severe I would end up in emergency and have to have an adrenalin shot. I now know that I get them when I’ve been glutened. I’ve read somewhere it’s your body in overload mode trying to get rid of the poisonous gluten.
    Mine last for a few days, depending on the amount of gluten ingested, are super itchy but then go away.
    ps-thank you so very much for your website. I refer to it often and it gives my people support system a bit of reprive now that I can connect this way and see what other celiacs are experiencing.

  9. I noticed that ever since I’ve been diagnosed with celiacs disease it been one thing after another. Sometimes I get really frustrated and discouraged with it. There have been times where I’ve given myself a headache from crying because my body decides to overreact to things…like the mysterious case of the hives. My family panicked and I did my best not too. The week prior I already had a bad allergic reaction to an antibiotic so they thought it was the new one…I was trying to say it was the new detergent…I have no idea what it is but I bet ya it prolly was celiacs showing its bothersome head if only to remind me that “HEY! You may not know this because you follow your diet…but I do believe you might have experienced cross-contamination…” which really sucks…but thank you! I feel just a lil more normal than I did knowing Im not the only one who always has something pop up…or the hives thing. :)

  10. Hi Rebecca,
    Thanks for sharing your story. I’ve been celiac for almost 20 years and for the first time ever have been experiencing hives just like you describe. No trigger obvious to me. I let them go on for about 10 days before seeing a doctor, kept thinking they were getting better as they would fade on their own but each flush was worse than the last. My doc prescribed 3 days of prednisone, it’s provided total relief, until the next morning and I awaken covered in hives again. I’ve taken the last and am dreading waking again tomorrow to be completely covered in hives. Did your course of prednisone get you through them? How long did you have to stay on? Did they reoccur?

  11. I have chronic auto immune urticaria, sounds like you might have that too. I’ve been dealing with this condition for the past 12 yrs. It stinks. I’ve gone into remission for a year or two, then it returns. This past episode has been 6 months. Antihistamines don’t seem to do much, maybe take the edge off. Prednisone has been great, only 5mg seems to keep them at bay, but I know you’re not supposed to stay on steroids for a long time, so I went off for 3 weeks, and the hives returned. I am going to take a second injection of xolair, which has helped others with this condition. It’s NOT an allergy. Check out xolair and ask you doctor about it. It’s very expensive and must be approved by your insurance company. Good luck!

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