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Chronic Idiopathic Urticaria And Angioedema


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#1 thleensd

 
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Posted 22 March 2009 - 12:28 AM

A few years back I was diagnosis with chronic hives and swelling...idiopathic. I don't have any allergies--I've been tested for nearly 90 foods. This condition is an auto-immune disorder. I was also diagnosed with dermagraphism. (Pretty much, if you run your fingernail across your skin lightly it turns into a big itchy welt)

I read an snippet online (don't remember where) that there could be a connection with Celiac, but they haven't done any studies on it...just enough info to suggest there might be something to look into.

Anyone else? Might be a long shot, I know.....

And, of course, I've heard if you have one auto-immune, you're more likely to have another than most...

(oh, I dealt with this issue for about a year...took ridiculously strong antihistamines that knocked me out, and it eventually went away. Only 2 mild recurrences. Still have the dermagraphism though. Seems to be a weird systemic histamine reaction without allergy)
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Diagnosed 2/12/09 by biopsy after years of anemia, neuropathy, dizziness, brain fog, pain and more.
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#2 Jestgar

 
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Posted 22 March 2009 - 06:06 AM

(oh, I dealt with this issue for about a year...took ridiculously strong antihistamines that knocked me out, and it eventually went away. Only 2 mild recurrences. Still have the dermagraphism though. Seems to be a weird systemic histamine reaction without allergy)

I have this. It was much much worse before gluten-free. I was taking two allegra a day to try to function.

Now it's pretty mild. When it starts to get bad I take an allergy pill and it knocks it back down.

Don't know if that would help you.
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#3 Mother of Jibril

 
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Posted 22 March 2009 - 06:17 AM

I also have dermagraphism ;) I'm not sure about the connection to celiac disease, but I have read that there's a strong connection to Hashimoto's (autoimmune hypothyroidism).

I have a bunch of allergies (both food and environmental), but I do wonder if there's an autoimmune component to my problems... I'm waiting for the results on a bunch of blood tests. I get hives and a rash that drive me crazy for a few weeks and then disappear without any treatment. Weird. I've been keeping a diary for the last couple of months trying to figure out what's going on.
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Gluten free 08/08
Son has IgE allergies to peanuts and corn
Hashimoto's, MCAD, pregnancy loss at 17 weeks
HLA-DQB1*0302 (celiac), HLA-DQB1*0301 (gluten sensitive)
Serological equivalent 3,3 (subtype 8,7)
Extensive family history of autoimmune disorders and related symptoms

#4 ravenwoodglass

 
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Posted 22 March 2009 - 06:48 AM

I had those also. Combine them with DH and you have one itchy mess. I had dermatographism since childhood and used to have fun 'drawing' on my skin when I was bored. The areas that didn't have DH blisters anyway.
I had the opposite effect before my celiac diagnosis with the allergy testing. The only thing I didn't react to was the scratch for beech trees. For me there was a strong connection. All have resolved including the edema I had. The only downside was having to buy all new shoes because when the swelling went away I lost a shoe size. No wait maybe that wasn't a downside. New shoes are fun. :D
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 Mother of Jibril

 
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Posted 22 March 2009 - 05:42 PM

All have resolved including the edema I had. The only downside was having to buy all new shoes because when the swelling went away I lost a shoe size.


My rings are getting so loose that I had to put some yarn around them... I would LOVE it if I lost a shoe size too. It's not easy to buy shoes when you wear size 11 :lol:

I'll have to go visit a shoe store and check that out!
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Gluten free 08/08
Son has IgE allergies to peanuts and corn
Hashimoto's, MCAD, pregnancy loss at 17 weeks
HLA-DQB1*0302 (celiac), HLA-DQB1*0301 (gluten sensitive)
Serological equivalent 3,3 (subtype 8,7)
Extensive family history of autoimmune disorders and related symptoms

#6 bcberry

 
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Posted 10 August 2011 - 11:01 AM

There is most certainly a connection between Hashimoto's and gluten! Your thyroid produces hormones that control metabolism...once your thyroid is under active (or rather under attack), it doesn't produce the necessary hormones and you may develop a gluten intolerance (not necessarily celiac disease though!). Going on a gluten free diet is great for this. I have this same condition. My allergist tried to diagnose me with Hashimoto's but all my labs kept coming back within the normal ranges. But it's super obvious that SOMETHING IS WRONG!!! Normal, healthy people don't have hives and angioedema! I took matters into my own hands. I try to be on a strict gluten free, sugar free (I say I try, Im only human, I fall off the wagon here and there) diet. I also take super probiotics, Symbion, to be exact. This is to help restore my intestinal flora. And most importantly, I drink 2 tbls of raw, organic, unfiltered, gluten free apple cidar vinegar in 8 oz of water at least twice a day, sometimes 3 if i have a flare up. I cannot tell you how much better my hives are since I have been doing this!!!! The probiotics are kinda expensive, but the ACV is super cheap. It's worth a shot! No one should have to suffer with hives for any length of time. It's awful and it consumes my life. Message me if you have a questions, i would love to help others.
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#7 pricklypear1971

 
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Posted 26 August 2011 - 07:58 PM

Dermagraphism I don't know about...but do know about Hashi's, chronic hives, and Dermatitis Herpetiformis. Specifically, being diagnosed with chronic autoimmune hives and it really being DH.

My DH (biopsy pending) was masked by corticosteroid injections, pills, and cream. Once those were removed my DH starting liking and acting "normal". Before they looked like an odd dermatitis or ringworm.

I am still on doxepin because I must wean off - starting the process now; antihistamines didn't mask the look and still don't know if they helped. Guess i'll find out in the next few weeks.

I take t3/t4 supplements, and have for about 6 years. Just went gluten-free and lingering thyroid symptoms went away. DH actually remitted until I accidentally glutened myself. I've wondered about a bit of dermagraphism since my rash is around my bra line, under my arms, but I've never had it in remission long enough to really test it.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#8 eatmeat4good

 
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Posted 26 August 2011 - 08:45 PM

I have angioedema, DH, and Hashimoto's. Just recently learned about this condition called chronic hives and angioedema...on googling found the low Histamine diet to be recommended for contolling chronic urticaria. I've been gluten free almost a year but still have the facial swelling and puffiness of angioedema. I'm trying Low Histamine diet now...I was just curious if any of you have seen a food correlation besides gluten. Of course first and foremost is gluten free. It seems to be helping but it is awfully hard to maintain in addition to being strictly gluten free. I didn't realize so many of us were dealing with this. Ravenwood? How long did it take for all of the swelling to go away? I would love not to have to see my face puffy anymore.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#9 pricklypear1971

 
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Posted 29 August 2011 - 08:21 PM

Salicylates. Figured it out today. For me it's specifically preservatives and food colors, especially RED.

Salicylate intolerance goes with DH.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#10 eatmeat4good

 
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Posted 29 August 2011 - 08:30 PM

Hey Pricklypear1971? Where did you read that salicylates go with DH???? For the longest time that is what I thought my problem was...way before I found out about gluten. Actually I have both....but from time to time test salicylates because I really don't want to be avoiding all of those foods. I'm very curious about this...because I was taking Ibuprofen to deal with the pain of the DH...and then got ever worse. Eliminating salicylates only did so much....I never healed...in the end it was gluten too. A few months ago it was reaffirmed when I treated myself with M&M's and a diet coke. The M&M's had food coloring of course and the diet coke had benzoates...both of which people who are intolerant of salicylates react to. Ironically it was a treat for having gone through the thyroid biopsy...I stopped on my way home and got the "treats" and spent the rest of the night scrathing my skin insanely. This puzzle has endless pieces. I'm fascinated by your statement and would like more information. Did you eliminate and challenge? Or did you read about it? OMG!

I absolutely think you are right!
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#11 CRashster

 
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Posted 03 September 2011 - 05:38 PM

This is exactly what I have been fighting for 10 years now. I was on 4 Zyrtec, then 4 Allegra a day, 50 mg of Doxepin, 600 mg Ranitidene and tons of other meds. I was, at one time, taking 14 pills a day just to control the hives. I quit gluten, now I'm down to 1 pill a day. I'm feeling 1000% better.
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#12 krazykatz2004

 
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Posted 18 October 2011 - 04:40 AM

This is exactly what I have been fighting for 10 years now. I was on 4 Zyrtec, then 4 Allegra a day, 50 mg of Doxepin, 600 mg Ranitidene and tons of other meds. I was, at one time, taking 14 pills a day just to control the hives. I quit gluten, now I'm down to 1 pill a day. I'm feeling 1000% better.


I have just been diagnosed with chronic idiopathic urticaria and am progressively getting worse despite double doses of antihistamine. I just did a 48 hr detox diet and am now doing gluten free, lactose free (I'm lactose intolerant), and histamine restricted diet. How long did it take for you to see improvement in your symptoms? I've gotten very little help/direction from my PCP or dermatologist and am wondering if I should be pushing for further testing or should I stick with the diet and wait for my recheck appt in 6 weeks? Any advice or thoughts are appreciated!
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#13 pricklypear1971

 
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Posted 18 October 2011 - 06:37 AM

I have no idea.

I was temporarily helped by corticosteroids; however, I paid a high price. My adrenals went nuts, couldn't regulate sugar, was having eye issues, couldn't drive, etc......

I tried every antihistimine - was on mega doses of OTC and a strong rx.

In the end, I discovered high salicylates like food dyes (fruits and veggies don't seem to get me) along with gluten and high iodine products.

I saw "maintenance" going gluten-free. I'd flare with iodine. My DH started healing about 3 days low iodine (after apx. 2 months gluten-free). It took 2 weeks of low iodine to start adding back some iodine (milk).

I don't eat high level salicylates. Ever. Food dyes and preservatives give me stomach cramps, not to mention a screaming DH rash.

I don't eat gluten, ever.

Now I'm eating most foods - even a few almonds and a bit of coconut. I haven't eaten a whole egg but cook freely with them now. Even had a few shrimp and a bit of salmon.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#14 bcberry

 
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Posted 16 July 2012 - 09:21 AM

There is most certainly a connection between Hashimoto's and gluten! Your thyroid produces hormones that control metabolism...once your thyroid is under active (or rather under attack), it doesn't produce the necessary hormones and you may develop a gluten intolerance (not necessarily celiac disease though!). Going on a gluten free diet is great for this. I have this same condition. My allergist tried to diagnose me with Hashimoto's but all my labs kept coming back within the normal ranges. But it's super obvious that SOMETHING IS WRONG!!! Normal, healthy people don't have hives and angioedema! I took matters into my own hands. I try to be on a strict gluten free, sugar free (I say I try, Im only human, I fall off the wagon here and there) diet. I also take super probiotics, Symbion, to be exact. This is to help restore my intestinal flora. And most importantly, I drink 2 tbls of raw, organic, unfiltered, gluten free apple cidar vinegar in 8 oz of water at least twice a day, sometimes 3 if i have a flare up. I cannot tell you how much better my hives are since I have been doing this!!!! The probiotics are kinda expensive, but the ACV is super cheap. It's worth a shot! No one should have to suffer with hives for any length of time. It's awful and it consumes my life. Message me if you have a questions, i would love to help others.




I would just like to add an update to this post from 2011. It's almost a year since my first post here. I want everyone to know that I went from hives covering my entire body (even in my ears!) and incredibly swollen face (and fingers) to completely normal again. Now, I do take an off brand of Zrytec (Sam's has the cheapest!) each day just to be on safe side. But I have had only a very few (like 3) episodes of hives since. These epidsodes only consisted of my lip being slightly swollen upon waking in the morning and by mid-late morning it was gone. I haven't taken the symbion probiotic in months (I ran out and also out of money to buy it) and I'm also not drinking the ACV (please see my previous post for more info) anymore. I want to get started again on both just to prevent any future relapses, but I'm hive free as of now and I hope it continues! Please don't hesitate to email or message me with any questions you may have on how I went into remission and have stayed that way. I am NOT trying to sell anything or back any one brand of products, so please don't misconstrue my message. I am a married woman with a toddler in graduate school for medical science. And I am so so so so excited that I am living my life with no threats of hives!!!! Good luck to all!
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#15 GoBuckwheat

 
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Posted 25 April 2013 - 11:37 AM

This is exactly what I have been fighting for 10 years now. I was on 4 Zyrtec, then 4 Allegra a day, 50 mg of Doxepin, 600 mg Ranitidene and tons of other meds. I was, at one time, taking 14 pills a day just to control the hives. I quit gluten, now I'm down to 1 pill a day. I'm feeling 1000% better.

This was almost exactly my experience (although I was lucky enough to figure things out pretty quickly).

This Feb (about 10 weeks ago), the Hives started. By March they were ridiculously bad (see my blog post below for pictures). I was on 45mg Prednisone, 1 Cholchizine, 150mg Hydroxizine, and 6 zyrtec a day, with 300mg of Rantadine as needed, plus 2 probiotics a day to control stomach issues (add that all up, and you get 26 pills a day!!!). All of this, and my hives were simply "under control," but still visable and mildly itchy. Did some research, switched to a gluten-free diet (on my own really, with only the consent of the most recent of my 6 doctors that I'd seen in the 2 years prior for stomic issues and brain fog), and the hives all but disappeared in 2 days. My stomach issues cleared up to! In all, it took me about 7 weeks to figure out that the diet might help, and I've been having great success in the first 3 weeks of my gluten-free lifestyle.

I'm still on the Cholchizine, and I take 1 or 2 zyrtecs for flare ups (which I'm pretty sure happen when I'm accidentially glutenated and since I'm so sensitive. When I cook/bake things at home and eat those exclusively, no hives). Anyway, it was a miracle. Glad to see some others have found the diet helpful.


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