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Pictures Of My Rash


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60 replies to this topic

#46 Sam81

 
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Posted 02 October 2011 - 10:03 AM

Hi guys - wanting to vent really. Seeing Gastro Intestinal people for the first time tomorrow and already feeling negative about it. Any tips?? I have fresh rash, migraines, nausea, numbness/tingling in hands all apparent. I just know I'll be told acne, eczema, stress and poor circulation - coupled with IBS...
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#47 pricklypear1971

 
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Posted 02 October 2011 - 10:21 AM

Request (ok DEMAND) a full celiac panel.

Request a small intestine biopsy.

Repeat repeat repeat.
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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!

#48 Sam81

 
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Posted 03 October 2011 - 08:54 AM

As expected - damn useless. Told it's IBS and it's common - i am to go on a "low residue" diet. The rash is nothing to do with it, I can't cure the abdominal pain, bloating and nausea as well as curing the bowel issues - only one of these can be sorted and I am to remove fibre from my diet but then take fibogel to help. For a stomach guy he was very concerned with the bowel, refused to do an endoscopy will see me again in 4 months to change fibogel for something else if it doesn't work. Celiac (coeliac as it's called here) is all in my head.

I'm devastated and feel lost and very down....:( Did I mention I feel like a head case??
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#49 pricklypear1971

 
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Posted 03 October 2011 - 10:18 AM

As expected - damn useless. Told it's IBS and it's common - i am to go on a "low residue" diet. The rash is nothing to do with it, I can't cure the abdominal pain, bloating and nausea as well as curing the bowel issues - only one of these can be sorted and I am to remove fibre from my diet but then take fibogel to help. For a stomach guy he was very concerned with the bowel, refused to do an endoscopy will see me again in 4 months to change fibogel for something else if it doesn't work. Celiac (coeliac as it's called here) is all in my head.

I'm devastated and feel lost and very down....:( Did I mention I feel like a head case??


Ok, well that sucks.

I would look into independent blood testing - where a doctor doesn't have to order it. I have no idea where/how in the UK. Do you have alternative practitioners like Naturapaths there? Could one (if you have them) order the tests?

Fortunately, you don't need anyone's permission or RX to go gluten-free if it comes down to it.
  • 2
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!

#50 pricklypear1971

 
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Posted 03 October 2011 - 10:19 AM

And you aren't a head case.
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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!

#51 glutengirl42

 
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Posted 05 October 2011 - 12:36 PM

Thanks for your response ravenwoodglass. I'm actually going to start the specific carbohydrate diet very soon. I'm mentally/emotionally trying to prepare myself and also get my house ready in terms of supplies. I've used rice dream before.. good to know.. I was unaware. What ingredient makes it no good?
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#52 ravenwoodglass

 
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Posted 05 October 2011 - 02:47 PM

Thanks for your response ravenwoodglass. I'm actually going to start the specific carbohydrate diet very soon. I'm mentally/emotionally trying to prepare myself and also get my house ready in terms of supplies. I've used rice dream before.. good to know.. I was unaware. What ingredient makes it no good?


It is processed using barley but there is no reg that it has to be on the label so they removed that info a long time ago.
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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)

#53 Skylark

 
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Posted 06 October 2011 - 11:53 AM

As expected - damn useless. Told it's IBS and it's common - i am to go on a "low residue" diet. The rash is nothing to do with it, I can't cure the abdominal pain, bloating and nausea as well as curing the bowel issues - only one of these can be sorted and I am to remove fibre from my diet but then take fibogel to help. For a stomach guy he was very concerned with the bowel, refused to do an endoscopy will see me again in 4 months to change fibogel for something else if it doesn't work. Celiac (coeliac as it's called here) is all in my head.

I'm devastated and feel lost and very down....:( Did I mention I feel like a head case??

You are NOT a head case. I really hope the diet helps you.
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#54 glutengirl42

 
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Posted 10 October 2011 - 08:04 AM

It is processed using barley but there is no reg that it has to be on the label so they removed that info a long time ago.

WoW... it's so frustrating that the label laws don't require full disclosure of ingredients. Very good to know. Continue to keep me informed :)
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#55 Sam81

 
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Posted 11 October 2011 - 09:00 AM

And you aren't a head case.


Just to say the results of biopsy apparently showed nothing more than a scratch on the skin, except the letter I read (upside down) said more testing may be beneficial. They're now looking at Lupus regarding the rash in pics 2&4 - the ones that look like hives. Apparently Hives urticaria don't last more than 24 hours... Not what I've read. Also, they have done a RAST test for allergy to wheat... All because I stamped my feet. They now think I'm mental...
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#56 pricklypear1971

 
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Posted 11 October 2011 - 09:28 AM

Just to say the results of biopsy apparently showed nothing more than a scratch on the skin, except the letter I read (upside down) said more testing may be beneficial. They're now looking at Lupus regarding the rash in pics 2&4 - the ones that look like hives. Apparently Hives urticaria don't last more than 24 hours... Not what I've read. Also, they have done a RAST test for allergy to
wheat... All because I stamped my feet. They now think I'm mental...


I know this is incredibly frustrating.

Good news is they are looking at Lupus, which is on the autoimmune spectrum. Any chance they are sending you to a rheumatologist? Good chance a Rheumy will listen to you about Celiac and order the tests.

And that doc must be on the pipe because chronic hives can do all sorts of things, including staying around for more than 24 hours.... http://www.mayoclini...c-hives/DS00980

This is a side note - I used to be obsessed with classifying my rash and upset because my dermatologist wouldn't give it a name - he said it was "caused by an autoimmune response" - which quite frankly was the BEST thing he could have said because I started looking for the autoimmune condition.

I obsessed over it being dermatitis, hives, psoriasis....he said it didn't matter because the goal was to relieve the
symptoms and NOTHING HE DID RELIEVED THE SYMPTOMS (furthermore Tge treatments were harming my adrenals). So, I had to find the cause. Perhaps having them look into Lupus is the first step to finding the cause for you.

Good luck and keep on going.
  • 1
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!

#57 lub2bmom

 
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Posted 11 October 2011 - 05:23 PM

have you tried going gluten free to see if it helps?
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~6 years of being mis-diagnosed with Chronic Hives and digestive problems
~August 2011 self diagnosed as DH Celiac
~August 2011 Gluten Free
~Hive Free since September 2011

#58 Sam81

 
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Posted 12 October 2011 - 01:29 PM

have you tried going gluten free to see if it helps?



Everytime I plan and attempt it I get a glimmer of hope that dr's may test for it so I don't start it! I haven't a clue were to buy stuff in UK so it's taking a lot of time planning - I don't want to be eating salad forever. I'm also vegetarian so that's adds complications in terms of protein or lack of it as all vege stuff is loaded with gluten and wheat. I'm being referred to an immunologist for akllergy to wheat. I'm going to ask for a rhematologist - even if i play on the behcets angle... ...been a while since they checked me out anyway...

I just feel like bechets and lupos are not real - you can only manage them - not cure them... Does that make sense to anyone?
I certainly dont mean to offend anyone by that statement - My family can't accept them. They laughed when I told them.
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#59 Natally

 
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Posted 15 October 2011 - 01:33 PM

I would say that you are like many of us who suffer from DH--you simply CANNOT tolerate iodine. Now that you've seen the result of iodine ingestion, you'll need to try everything you can to eliminate any and all iodine in your diet. This may be why the blisters have not disappeared after six weeks of being gluten free. Don't eat seafood, iodized salt, salty foods, processed foods, or dairy (unless it's organic). For me, NO healing began without eliminating iodine...and then the healing was fast.

By the way, others on this forum have mentioned that Dapsone did not resolve their DH.



Thank you for the information about iodine. I am new to this site and suspect I have a problem with gluten and I also suspect with dairy and yeast as well. So much information I need to give myself some time to take it all in.
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#60 Mefellows

 
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Posted 08 December 2012 - 01:32 AM

Quick background to this is I was diagnosed with bechets at 16 at put on dapsone tablets - 50-100mg daily. Left to manage it on my own. I stopped taking it 2 years ago when I was pregnant and havent taken it since due to breastfeeding. Slowly symptoms of my body/stomach not liking something have come along and I also get this rash when I eat certain things. Im tired, irritable, constant stomach aches/pain, migraines, urgency for toilet and messy when I go, dizziness and bad memory. Dr's so far have put most of these symptoms down to stress and having children. But I feel different, my head is always foggy and I hate this anger that comes from no where. Rash has been treated over the years as Psoriasis, impetigo and one dr said it was because i must of left mess on me when I'd been to the toilet! Dr has done "celiac Blood test" which he says is negative but refuses to give me the actual result. From what I can tell he has only tested the "Anti-tissue Transglutonase" level? So here are some pictures of the rash I get on my face (purple marks that can be itchy but usually painfull and take months to go), bottom - (intensely itchy and burning - note the scratch marks!) and legs - these look more like hives I think. I havent included all the pictures of the rash on my beind as it's very embarassing - just imagine the last 2 pictures all over!! Everything else seems mild at the moment.

Any opinions, thoughts etc are welcome. Ive just had a colonoscopy (as Dr wants to do the cheapest procedure first) and it was clear. I have a dermatology app in 3 weeks and am seeing stomach people for first time in October.

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OMG! I get this. I thought it was just weird hives...just as itchy as hives. Is iodine (besides gluten) the answer?
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