Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Chronic Urticaria (Hives) Common For celiac disease?
0

11 posts in this topic

I am 30 years old and have had issues with chronic constipation for 6+ years.  Doctors diagnosed with IBS and treated with Amitiza.  A new doctor suggested I be tested for Celiac with a family history of Lupus, RA, and Celiac Disease.  Bloodwork came back borderline and endoscopy confirmed diagnosis.  I was diagnosed just before Christmas and have been gluten free (to the best of my knowledge) since Jan 1, so I'm really only about 2 months in.

 

Anyway, starting in November/December, I began getting red, itchy patches on my hands and wrists.  I blew it off to being winter and dry so bought some soothing lotion and all was well.  Went to my parents for a week at Christmas and the rash that resembles hives grew - I had it on my arms, feet, and ankles.  Returning home in January, I went completely gluten-free and the hives took over -- hands, arms, neck, feet, legs, some on my abdomen, but not so much.  I always have some, but the spots I have today will be gone tomorrow and new ones will pop up in new places.  I have been to the regular doc twice and dermatologist three times and all they can tell me is it's chronic urticaria (hives) and they've jacked up my antihistamines to the point of being in a cloud all day.  They obviously aren't working, I still look like a leopard and itch terribly.  At one point, I was prescribed a 20-day course of steroids that did the trick for about 10 days and I felt like a new woman, but it's been a few weeks now and the hives are back full-force.

 

I don't think the hives resemble DH and the doctors don't seem too concerned about it, though they have mentioned it.  They also are not concerned about Lupus or other chronic diseases at this time.  I've had some bloodwork and my sed rate was slightly elevated but everything with my CBC with differential was completely normal.  What are we missing?  Where should I turn next?  What should I suggest to the doctor?  I really have no idea what's going on and as a full time PhD student, I just don't have time for this :-)  

 

Is this common for celiac disease?  If it is DH and I've been gluten free, shouldn't it be getting better rather than worse?  

 

Any help is greatly appreciated!  The sooner I can stop the overload of antihistamines (that aren't working), the better!

 

Thank you.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Dh can take quite some time to clear up from what i've heard. So it is very possible that it is that.

0

Share this post


Link to post
Share on other sites

Have you considered (I know, horrible possibility) that you might be reacting to some other food(s) as well???  Stranger things have happened.  Actually, it happened to me.  I had three things develop in my first months gluten free -- a non-itchy red rash (really just a sheet of color, just red skin); a somewhat itchy slightly raised rash, and actual hives.  The red rash was soy, the raised rash was unexplained but eventually went away when I got things balanced out, and the hives came from nightshades.  What a revolting development that was! :ph34r:   I do not wish that on you.  But it might be worthwhile figuring out if something else is getting to you.

 

To do that you would probably have to keep a food and symptom diary, and eat different things on different days, cut out some foods now and add them back in later, do a bit of sleuthing in other words.

 

I had done what I now advise nobody to do, and that is to rush out and buy gluten free replacements for my favorite foods.  And most of those foods had goodly quantities of soy in them, something that I had gone easy on previously because we did not have a very satisfactory relationship, soy and I, but which I overlooked in my zeal to make sure things were GLUTEN free. :rolleyes:   And I had always been a heavy nightshade consumer - ratatouille was my signature dish.  So it was a heavy blow to give up nightshades.  But two nlights in a row, jacket potatoes, two nights in a row waking up with drive-you-crazy hives at 2:00 a.m.  No jacket potatoes, no hives.  (Yaah, the tomatoes came next :P )   Anyway, just a suggestion of another angle to look at.  Certainly hope that that's not it.

 

Welcome to the board and let us know how else we can help. :)

0

Share this post


Link to post
Share on other sites

http://allergynotes.blogspot.com.au/2010/08/can-helicobacter-pylori-infection-cause.html

We discovered an h. Pylori infection in one of our children with idiopathic, chronic, head to toe and roving hives with angioedema. Cold, wet cloths were probably the most soothing treatment that helped. We were running dual antihistamine dosing and still getting major flares with incidental exposures. We also discovered b12 issues with h. Pylori the suspect in preventing absorption.

We have uncommon reactions to incidental gluten, but we have four varieties of gluten hypersensitivity to research in our family. We got to the point we were testing for heaps of things. It can certainly be exhausting and draining. I wish you the best of luck in identifying your contributing factors.

0

Share this post


Link to post
Share on other sites

Have you considered (I know, horrible possibility) that you might be reacting to some other food(s) as well???  Stranger things have happened.  Actually, it happened to me.  I had three things develop in my first months gluten free -- a non-itchy red rash (really just a sheet of color, just red skin); a somewhat itchy slightly raised rash, and actual hives.  The red rash was soy, the raised rash was unexplained but eventually went away when I got things balanced out, and the hives came from nightshades.  What a revolting development that was! :ph34r:   I do not wish that on you.  But it might be worthwhile figuring out if something else is getting to you.

 

To do that you would probably have to keep a food and symptom diary, and eat different things on different days, cut out some foods now and add them back in later, do a bit of sleuthing in other words.

 

I had done what I now advise nobody to do, and that is to rush out and buy gluten free replacements for my favorite foods.  And most of those foods had goodly quantities of soy in them, something that I had gone easy on previously because we did not have a very satisfactory relationship, soy and I, but which I overlooked in my zeal to make sure things were GLUTEN free. :rolleyes:   And I had always been a heavy nightshade consumer - ratatouille was my signature dish.  So it was a heavy blow to give up nightshades.  But two nlights in a row, jacket potatoes, two nights in a row waking up with drive-you-crazy hives at 2:00 a.m.  No jacket potatoes, no hives.  (Yaah, the tomatoes came next :P )   Anyway, just a suggestion of another angle to look at.  Certainly hope that that's not it.

 

Welcome to the board and let us know how else we can help. :)

 

Thanks for sharing, mushroom. I recently went gluten-free having had symptoms for about 2 years that culminated in chronic urticaria/hives. I was doing great for about a month! No hives, came down off of the medications I'd been on, started adding foods back into my diet, etc. About 4 weeks in I started eating Udi's products, and the hives returned. I cut them out, they got better that next day, but the resurged a few days later. I suspect I also have other food allergies, with corn being the likely suspect. On Friday I had cornmeal for breakfast, corn chips + hummus for lunch, and sourdough bread made with cornstarch that night. The next day the hives returned, and on Sunday and Monday I had hives everywhere in large wheals. Yesterday (Monday) I cut out everything and started a oligoantigenic diet (you can eat only Apples/Bananas/Pears, Chicken/Lamb, Rice/Potatoes, and Broccoli and other similar veggies). I'm nervous about the Rice/Potatoes, so I think I'll cut that out as well (at least for just the first couple days). 

Hopefully, with the change to my diet the hives subside soon enough and I can start working those other foods back in. Do you have any tips on how to identify other food allergens? Any habits that you'd like to recommend? 

0

Share this post


Link to post
Share on other sites




when i am trying to figure out what i am eating that is causing __________, i keep a food journal.  that's how i figured out that soy an i are Not Friends.  soy is in my favorite chocolate candy  :(  so, by experimenting, i learned that i can eat a little of it without getting much of a reaction.  if i have none at all all day long, i can have 1 or 2 squares of my chocolate.  any more than that, here comes a headache, etc.  (if i really need to eat a ton of chocolate, i get a soy-free candy bar and woof the whole thing down lolz)

0

Share this post


Link to post
Share on other sites

I am 30 years old and have had issues with chronic constipation for 6+ years. Doctors diagnosed with IBS and treated with Amitiza. A new doctor suggested I be tested for Celiac with a family history of Lupus, RA, and Celiac Disease. Bloodwork came back borderline and endoscopy confirmed diagnosis. I was diagnosed just before Christmas and have been gluten free (to the best of my knowledge) since Jan 1, so I'm really only about 2 months in.

Anyway, starting in November/December, I began getting red, itchy patches on my hands and wrists. I blew it off to being winter and dry so bought some soothing lotion and all was well. Went to my parents for a week at Christmas and the rash that resembles hives grew - I had it on my arms, feet, and ankles. Returning home in January, I went completely gluten-free and the hives took over -- hands, arms, neck, feet, legs, some on my abdomen, but not so much. I always have some, but the spots I have today will be gone tomorrow and new ones will pop up in new places. I have been to the regular doc twice and dermatologist three times and all they can tell me is it's chronic urticaria (hives) and they've jacked up my antihistamines to the point of being in a cloud all day. They obviously aren't working, I still look like a leopard and itch terribly. At one point, I was prescribed a 20-day course of steroids that did the trick for about 10 days and I felt like a new woman, but it's been a few weeks now and the hives are back full-force.

I don't think the hives resemble DH and the doctors don't seem too concerned about it, though they have mentioned it. They also are not concerned about Lupus or other chronic diseases at this time. I've had some bloodwork and my sed rate was slightly elevated but everything with my CBC with differential was completely normal. What are we missing? Where should I turn next? What should I suggest to the doctor? I really have no idea what's going on and as a full time PhD student, I just don't have time for this :-)

Is this common for celiac disease? If it is DH and I've been gluten free, shouldn't it be getting better rather than worse?

Any help is greatly appreciated! The sooner I can stop the overload of antihistamines (that aren't working), the better!

Thank you.

If you are still looking at this, first, I hope things have improved.

Second, you can't dx DH, IMO, by "how it looks. It can look very different person to person. If your rash is triggered by gluten (in the beginning of gluten-free this is difficult to determine) or foods that are medium-high in iodine then I'd strongly suspect DH - especially in a person with Celiac.

I was gluten-free 2 months with the rash coming/going. When I took iodine supplaments and high iodine foods out if my diet (along with g) the rash abated.

I found any medications - strong antihistimines and steroids in my case not only changed how it behaved but changed how it looked.

So, if you're still suffering and have been off steroids more 3m+ - try a biopsy for DH. I'd try a low iodine diet, too (google thyca.org).

0

Share this post


Link to post
Share on other sites

I got hives often before being diagnosed, but not so much anymore.

0

Share this post


Link to post
Share on other sites

Yep hives after diagnosis... Started 2 months in. Kept food journal, identified lots of 'allergies' and intolerances such as citrus, paprika, celery, sunflower seeds... On and on and on. I won't bore you. They went away when I cut foods out. I'm now 7 months in, no reactions for 3 months ish. Except for pressure hives (slightly different)... Have also figured that one out and yes, reaction to food!! Leaky gut I reckon, has a lot to answer for.

You're not alone, let us know how you get on.

All the best

0

Share this post


Link to post
Share on other sites

Weirdly enough, I have almost no memory of posting on this forum lol. I must have been glutenated.

I did keep a food journal, which helped me pinpoint 15+ problem foods. I'm glad you guys are on here to help :) Thanks! 

0

Share this post


Link to post
Share on other sites

Dh can take quite some time to clear up from what i've heard. So it is very possible that it is that.

It really does take time to clear up. I'm still waiting and it showed up about a year ago. I was diagnosed celiac many years ago, the DH was new and took a while to diagnose. I can't take dapsone (it's a sulfa drug) so I'm kind of on my own trying to deal with it and the itching drives me INSANE. I've had some success using clobetesol (which I use for lichen sclerosus...lets not even go there) which will sometimes help clear an outbreak up faster but doesn't help with itching. I would not assume that you don't have DH. If you do, dapsone may work for you and provides very quick relief.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,885
    • Total Posts
      919,480
  • Topics

  • Posts

    • Eeek confused! Positive biopsy, negative blood test???
      Thank you! My PA said that she still thinks it's celiac....but I don't feel like she's fully explained why. Some people are hard to get a solid answer out of! I think I'm gonna get a second opinion somewhere else.....appreciate the feedback. Makes me feel a little less crazy
    • Potato Crusted Quiche Breakfast Casserole (Gluten-Free)
      Here is the Potato Crusted Quiche Breakfast Casserole that my Significant Other came up with. View the full article
    • I'm actually scared to go to the doctor and could use some advice
      Hello Elle Among this online community you are not alone in either your symptoms or how you feel about visiting the doctor.  I for one understand the anxiety that you are going through, my own weird nerve stuff and other puzzling symptoms have had me really scared at times.   So much you are going through could very well be gluten related, it really could.   But if it isn't, in the end it is worth trying to find out what it is going on so you can get the treatment you deserve. After all, it could have a really simple, treatable explanation, once the doctors know what it is. I remember reading on another website something that has helped me with my own health anxiety - if one can summon up the courage to go and see the doctor, one should pat oneself on the back and be proud of oneself for doing the right thing.  I'm not terribly keen on the idea of being a proud person - but I think it was meant in the best sense, and it is always good to do the right thing, even if one does it afraid!  It always makes me feel that bit stronger when I'm in the waiting room at the doctors! There is lots of great advice above.  Do take it and make sure you come back if you need further support. There are some fantastic people here to help.        
    • I'm actually scared to go to the doctor and could use some advice
      Hi Elle......do you think you would have better luck obtaining a full Celiac panel from your GP or a gastro doc?  You really need to be tested for Celiac because of all your symptoms.  Many other people probably thought they were dying of some horrible disease because they had so many symptoms that docs ignored.  Very common problem for us.  Plus, your Mom has had "IBS" all her life.  I should add that IBS is not a diagnosis.  No one needs to be told their bowel is irritated......they already know that.  This is where the medical establishment, no matter where you live in this world, fail us.  They need to find the root cause and there always is one.  You also do not need to have any gastro issues to be a Celiac but you do have some, along with all your symptoms mentioned.  Anxiety is a huge problem with Celiac Disease and for many, it goes away just fine on the gluten-free diet, without need of meds...which should always be a last resort measure.  I have never had an anxiety problem in my entire life until after I was diagnosed with Celiac.  I may have had it but with all the other numerous symptoms I had, the anxiety may have gotten buried somewhere.  But guess what? On the extremely rare occasion when I am glutened or cc'd, I get major anxiety for about 4 days and then its gone. B12 is a water soluble vitamin so whatever you don't use, it exits the body in your urine.  It is pretty damn hard to overdose on the stuff.  I take a B vitamin everyday, very high quality ones and my B12 is usually in the high 600 range.  Optimally, it should be between 650-800 so yours was abysmal pre-supplementation.  Absorption can also be affected by PPI's.  You did notice improvement with the tingling sensation and fatigue once your levels were way up so take notice of that. My biggest advice is to get your mother and you tested for celiac, with a FULL PANEL. Then you'll have to wait and see what that shows. You could always trial a gluten-free diet if all testing is complete and the results were either negative or inconclusive. That sometimes happens with people, especially if they have Celiac's other cousin......non-celiac gluten intolerance.  This would be the best route to go with regards to your anxiety, unless it becomes disabling and you need meds, short term. Make sure you tell them that anxiety is a HUGE symptom of Celiac and it is not normal for younger people to have extreme anxiety like that, for no reason. Good luck to you and please call and make the appointment. I understand your fear....I hate doctors and it's pure mistrust. But sometimes you have to address a problem head on.    
    • newbie diagnosed mom - testing 8 yr old now
      good to know. I am not going for a biopsy. I do not have health insurance, i know i know please no political comments. My children do. My husband and I don't right now. If we lived in another state, we would have coverage. I just made an appt to do a full blood panel for my daughter this week. I would rather find some confirmation for her through a blood test, i feel a scope is too invasive for a child. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,929
    • Most Online
      1,763

    Newest Member
    Robyn08
    Joined