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Symptom question

Tbeard

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Tbeard Newbie
Tbeard
Posted

I have  had lupus and  Sjogrens for over 20 years. I also have always (for as long as I can remember) had a terrible stomach. I've always put up with it because it was normal for me. About a year and a half ago I decided to see a gastr ( I'm 44, and my older brother passed from chrohns disease). So I figured I should get my gut checked. So literally about a week prior to my colonoscopy I started getting a rash on my face neck and upper back.  Colonoscopy results showed nothing moved through me. So I was put on meds (still have rash issue). And then put on low fod map diet. Within 3 days of starting diet I no longer needed medication. So I was ecstatic!  At long last a normal stomach.  So now I still have this rash that only goes away with steroid cream or oral steroids. So start seeing allergist and they do patch test. Results showed I have tons of allergies. So I eliminate everything they tell me to. Still get rash. So then they said I had to start looking at diet. So I say all of that to say, that whenever I eat anything with gluten I get the rash. But I tested negative for celiacs disease. So does anyone else get weird rashes?

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cyclinglady Grand Master
cyclinglady
Posted

Welcome!  

What celiac tests were taken?  There is a full blood panel.  The standard screening TTG IGA does not catch all celiacs.  Did they biopsy your small intestine?  This usually is done via an endoscopy not a colonoscopy.   I recommend getting copies of all your lab reports.  Your rash could be DH (celiac) rash.  

 

frieze Community Regular
frieze
Posted

yoo hoo, hey,hey....a rash sounds like an allergy, not celiac, which is autoimmune.....

Sue7171 Rookie
Sue7171
Posted

 

I had this happen to me 5year's ago andi also have dh  but turned out i have lyme disease  snd guess what? Lyme can imitate sjorgens and lupus. The problem is that most people dont remember being bit...you can have it for25 years + like my youngest sister and i and i suddenly got allergies to alot of things that are gone now after 5year's treatment.  The standard lyme test is onky 40% accurate if you think you might have it..Google lyme symptoms  go to an llmd (lyme literate medical dr) or try to get your dr to order an igenix test which is $500...i know its expensive  but your symptoms are very much like mine down to the allergies and rash

squirmingitch Veteran
squirmingitch
Posted
6 hours ago, frieze said:

yoo hoo, hey,hey....a rash sounds like an allergy, not celiac, which is autoimmune.....

Just reminding you there is dermatitis herpetiformis aka "the celiac rash". 

We're still waiting for the OP to state what celiac test were done. Serum? Which ones?

Tbeard Newbie
Tbeard
Posted
  • Author

I actually have no idea what kind of testing they did, other than a blood test. I've been so frustrated with this rash that at times I just feel like giving up and just dealing with it because no one can give any answer. But it sounds like I need to go back to the gastro dr.  Thanks for everyone's input!

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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • MichaelDG
      celiac.com support

      By MichaelDG · Posted

      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
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