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I wanted to post in case any one else has similar symptoms. I have facial swellings which have improved slowly with a low gluten and then coeliac diet. After finding about iodine and DH on this website I stopped using my sea water nose spray and after this the swellings cleared up completely.
I am now 90% sure they are an unusual variation or pehaps unknown version of DH.
I have also received a diagnosis of gilberts syndrome when my bilirubin levels were high during a period of bad asthma combined with sweats and aches. I am seriously wondering if this was triggered by a visit into my local bakery.
I have changed my asthma medication to a montelukast - which certainly improves my breathing and rhinitus although I am worried about side effects mainly as I suffer from thes a lot but also because it has lactose in it. (when will drug companies learn? I intend to write to them when I get a chance)
I feel like I now have a much better picture of my health and although I have been unable to get a coeliac diagnosis I am sure I am coeliac (like my sister) and that there are other family members with gilberts syndrome and the problems linked to it.
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Facial Swellings Revisited
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#1
Indigo - Brighton -UK 
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Posted 02 April 2009 - 10:49 PM
Recently discovered I am celiac/DH but no diagnosis so at least gluten intolerant. I have had asthma and rhinitus which was diagnosed when 16 but may have started earlier. lactose/soya/alcohol intolerant and salicylate sensitive.
#2
r0ckah0l1c
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Posted 07 May 2009 - 03:58 PM
I think I might know what you are talking about? I consumed chocolate flavored carnation instant breakfast before realizing that it was the only flavor NOT gluten free and later that night noticed several quarter sized red/purple swelling spots along my jawline and was completely freaked out. I noticed it happening yet again about a week later after taking a bite of my friend's slim jim. Is that what happens to you?
#3
glutenfreejenny
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Posted 02 June 2009 - 04:30 PM
My neck looks swollen. Could that be from celiac disease?? Is that what you're talking about?
#4
ravenwoodglass
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Posted 03 June 2009 - 04:01 AM
glutenfreejenny, on Jun 2 2009, 05:30 PM, said:
My neck looks swollen. Could that be from celiac disease?? Is that what you're talking about?
Have you had this checked out by your doctor? Swelling in the neck areas could be from a number of things some of which could be gluten related. It should be evaluated by your physician to be on the safe side.
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)
"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
DDD
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Posted 02 July 2009 - 06:33 PM
I know exactly what you are talking about. When I eat gluten or dairy or aspertame, one of the side effects are painful bumps along my jawline. It looks like a pimple, but it's not. I think it's just my body releasing the toxins of what I ate. My aunt gets them too. It looks and feels awful and it's definitely a side effect of gluten for me.
I bet people who suffer from acne would benefit from going gluten free. If only omitting food from your diet was as profitable as harmful drugs
I bet people who suffer from acne would benefit from going gluten free. If only omitting food from your diet was as profitable as harmful drugs
March 2008: complete downward spiral during time of ACL reconstructive Knee Surgery (Itchiness, Rash, Swollen throat, Swollen lip, First and only panic attack, sore muscles, depressed, gut feeling that something bad is going to happen, confused, CRAZY, inability to focus, hallucinations)
May 2008: holistic doc recommends Gluten-Free, Caseinfree diet for 6 weeks and symptoms improved
Stayed moderately Gluten-Free for one year, all mental symptoms completely improved! Still physical symptoms plus upset stomach, irregularity and bloating
Present: strict Gluten-free Casein-free diet now that i am educated, feel 100% mentally AND physically! when not attacked
May 2008: holistic doc recommends Gluten-Free, Caseinfree diet for 6 weeks and symptoms improved
Stayed moderately Gluten-Free for one year, all mental symptoms completely improved! Still physical symptoms plus upset stomach, irregularity and bloating
Present: strict Gluten-free Casein-free diet now that i am educated, feel 100% mentally AND physically! when not attacked
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