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blondebombshell

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blondebombshell Collaborator

went to the GI doc yesterday and he has me scheduled for an endoscopy for 3 weeks from now. he told me to get back on gluten to see if when they do the endo if they will be able to tell what my stomach/intestine look like.

as a result of adding this back into my diet i have ITCHY hives everywhere on my calves. could this be DH?

i have never had these itchy bumps. just constipation which caused me to go off gluten, thinking that after having a blood test indicating that i was gluten intolerant that maybe that was it. now that i am putting it back into my diet after being off of gluten for 1 month, i cant handle this!

do you think its celiac? do you think it could be something else?

thanks so much


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ravenwoodglass Mentor
went to the GI doc yesterday and he has me scheduled for an endoscopy for 3 weeks from now. he told me to get back on gluten to see if when they do the endo if they will be able to tell what my stomach/intestine look like.

as a result of adding this back into my diet i have ITCHY hives everywhere on my calves. could this be DH?

i have never had these itchy bumps. just constipation which caused me to go off gluten, thinking that after having a blood test indicating that i was gluten intolerant that maybe that was it. now that i am putting it back into my diet after being off of gluten for 1 month, i cant handle this!

do you think its celiac? do you think it could be something else?

thanks so much

You are showing a positive reaction to the challenge. That is diagnostic for more intelligent doctors. Your body liked being gluten-free and now it is showing you how much it liked it. Many of us have C for years as the body tries desperately to draw nutrients into our system through an intestine that is not functioning normally. Eventually your intestines will be damaged enough for episodic D and then a life sitting on the toilet. Whether you continue with the challenge is up to you. I still feel it is barbaric for doctors to demand that we make ourselves extremely ill just to 'prove' we have a problem with something that has progressed far enough to cause permanent (at times) damage. If they can use a gluten suppository and biopsy of cheek or rectum in other countries I don't know why they can't do that here, oh wait, yes I do. An endo requires an invasive procedure in a facility with lots of cash going into their pockets, a noninvasive biopsy can be done in office with a local and only regular staff with no OR.

Emily Elizabeth Enthusiast

I had an itchy rash/hives thing on my upper leg and my ankles when I was at my sickest. It certainly does sound like celiac disease to me. I can't imagine having to go back to eating gluten again. Thankfully I had all of my tests done before going gluten free and feeling better. Good luck!

blondebombshell Collaborator

wow - i told him that i had itchy hives after eating some bread once and he didn't say anything. he said that since this is 'sudden,' like i have never had issues with the hives or not that it could be allergies.

my whole life i had issues with going to the bathroom. i only go about once a week if i am lucky. that is why i went to the doctor in the first place (the regular doc) and he did some blood work. this indicated that i had a gluten and egg white allergy. that was it. he said, well try a gluten free diet, lol.

i took it a step further and made an appt with a GI doc and now i have these bumps from time to time and i am assuming that they have to do with the gluten.

he told me that a gluten free diet is hard to stick with and it is expensive. whatever i guess, right!

Jestgar Rising Star

The diet ends up being a lot cheaper than all the prescription meds you have to take to control all the symptoms.

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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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