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Off Gluten For 6 Days And Now Back On Incase Of Retest For Dh...going Insane!


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#1 mamat78

 
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Posted 05 April 2013 - 09:05 PM

Is it really possible that even after being off gluten for 6 days that I am reacting through my skin even worse than I was before I went off? I have been on Dapsone for 9 days. After 3, I went off of gluten because I was getting frustrated with the rash and the stomach symptoms I get when I eat gluten.(BTW I was to the point where I was still itchy periodically but I wasnt scratching my legs to bleeding point anymore) I finally have all of my test results back and go to the dr next week to find out what they are so I figured I had better go back on gluten incase of needing to do a retest for DH (she most certainly did the DH swab wrong). 

Yesterday was my first indulgance in bread and within an hour my skin was crawling and my stomach was bloated and upset all night. Tonight, we had perogies and I feel so bloated, I could hardly drink water without feeling sick, my skin was crawling and burning again (and still is), and after about an hour, I suddenly felt so irritable and grouchy that i felt sorry for my kids. 

 

I just really hope I have some answers next week...

 

 


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#2 Takala

 
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Posted 05 April 2013 - 10:18 PM

My philosophy has always been that if they are not going to diagnose I am just not going to eat it anymore because I know it makes me quite sick.  

Been off of it (gluten)  for 10 years, (not officially diagnosed)  and last December ate thru a few bags of corn chips and a box of new pecans.... and blew up in a nasty rash.  Holy Moley, what the &^%$#@* !!! :angry:    Was almost tempted to go to a dermatologist until I remembered Takala's Rule: "If they can Screw It Up, They Will.   I came to my senses and reluctantly gave the rest of the corn chips to the spouse, and stopped eating the pecans, and self treated the rash, it cleared up.  I'm still not sure which it was, but those were the 2 newer food items I'd been eating.  The medical profession would want several thousand dollars to get to the point where MAYBE they could tell me to stop eating gluten, and why waste the money at this point.  


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#3 sisterlynr

 
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Posted 06 April 2013 - 01:48 AM

My philosophy has always been that if they are not going to diagnose I am just not going to eat it anymore because I know it makes me quite sick.  

Been off of it (gluten)  for 10 years, (not officially diagnosed)  and last December ate thru a few bags of corn chips and a box of new pecans.... and blew up in a nasty rash.  Holy Moley, what the &^%$#@* !!! :angry:    Was almost tempted to go to a dermatologist until I remembered Takala's Rule: "If they can Screw It Up, They Will.   I came to my senses and reluctantly gave the rest of the corn chips to the spouse, and stopped eating the pecans, and self treated the rash, it cleared up.  I'm still not sure which it was, but those were the 2 newer food items I'd been eating.  The medical profession would want several thousand dollars to get to the point where MAYBE they could tell me to stop eating gluten, and why waste the money at this point.  

 

Are you allergic to corn?  I love corn chips and ? why they wouldn't be gluten-free.  Maybe processed by CC from the factory?  I have seen corn chips that listed wheat but also found them w/o wheat.  Is there something I should be looking for on ingredients label?

 

I haven't had a blood test one that showed Celiac nor have my biopsies come back with DH.  My PCP told me today (ck up) that it is DH due to being gluten-free and Dapsone with excellent results.  My GI, Dermatologist and she agree it's DH.  She said why have the EGD for a biopsy as they already have dx and not to waste my money on co-pays.  


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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#4 mamat78

 
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Posted 06 April 2013 - 07:15 AM

I have an appointment to go over my results on Tuesday but becuase of what I learned AFTER she did the swab wrong, I am assuming that it will come back negative. I wanted her to be able to retest right then and there if it was negative and so I went back on gluten but boy am I paying for it. 

How much gluten do I have to be ingesting to be considered enough? 

 

ALso, the benifits of the Canadian medical system is that I am not paying for each and every visit :) 


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#5 mamat78

 
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Posted 06 April 2013 - 03:55 PM

Instead of starting a new thread, I will add to this one...Today (and yesterday for that matter), I feel like I am in a state of permanant fog. I have zero energy and just want to sleep. Unfortunately I have 4 kids and a husband who works away and is currently gone. I have been on dapsone for 10 days now and I don't think I noticed any side effects. I felt good in many ways after going off of gluten for 6 days and since yesterday I really just feel horrible. I am now wondering if it could be a side effect of dapsone??? I am only taking 50 mg and was considering getting it increased when I went back to doc on Tuesday. THis weird feeling is new even though I have to say I felt a bit like this on day 3 of going off of gluten as well. 

 

ANyone have the absentminded feeling or foggy feeling due to dapsone?


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