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Doctor won’t listen to my concern of DH...!!

farukhcasy2
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farukhcasy2 Apprentice
farukhcasy2
Posted

This may be common I’m unsure. About 5 years ago I started experiencing sharp stomach pains, changes in bowel movements, head aches & bloating. Randomly eliminated bread & pasta before a trip and felt fine for 2 weeks. I had toast while on vacation and was in bed with bloating and sharp pain. Was blood tested for celiac but it came back negative. Decided to remove bread, pasta, cookies and obvious forms of gluten from my diet thinking I was sensitive but I wasn’t particular about sauces being gluten-free ... fast forward to 2 years ago, I binge at thanksgiving and start noticing incredibly itchy bumps. Started getting worse around my genitals and Dr said it was eczema & to start changing to sensitive soap & cotton underwear. Used oatmeal baths and eczema creams, no help. Gave me corticosteroids that didn’t work. I am now 25 weeks pregnant and she referred me to a new Dr. Excited I thought she might take me seriously, I expressed my concern that my rash may be gluten related. She refused to listen to me because my blood work was negative. Now treating me for herpes since she can’t do a biopsy at the moment. The ointment has not helped. My significant other has never had a break out anywhere, which I would think he would if I had it ... I repeatedly told her I think it’s a gluten rash because it’s on my belly, on the same spot on both my legs and my armpits at one point... anybody else have a similar experience with Dr not wanting to take your word? The itch is unbearable. Sorry long winded just have a long backstory I guess

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cyclinglady Grand Master
cyclinglady
Posted

All celiac disease blood tests requires you to be on a full gluten diet (6 to 12 weeks daily) or you can get negative results.  It sounds like you were gluten free or gluten light.  Know too that some 10% of celiacs are seronegative.  And Dermatitis Herpetiformis (DH) sufferers often do not test well serologically and should get a skin biopsy.  

You are pregnant.  Congratulations!  

Because you are pregnant, you might want to remain gluten free and worry about a diagnosis later after baby and this pandemic is over.  The gluten free diet can not harm you (unless you just eat junk food).  Those with DH must be super strict.  Things like real food and not eating out.  Read the DH section for advice.  Learn about cross contamination.  Research is your best defense,  

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted

 I was diagnosed with gluten intolerance years after having my children. I had gi issues decades before. I later learned I was misdiagnosed with another gi condition, as I was diagnosed by symptoms only no scopes.

I experienced PUPPP rash while pregnant with my daughter. It started on my belly before delivery, then after I delivered her it massively erupted.

One of my nurse's called the Dr as she was concerned about me. The Dr was highly irritable that a big deal would be made over a rash. She diagnosed it as a PUPPP rash , told me to stop being a baby as it is not a big deal. I had not complained my kind nurse who clearly had better bedside manner and compassion knew my Dr should see me.

My OB I believe was not aware what the University of Illinois has this to say

http://www.cureceliacdisease.org/faq/can-someone-with-celiac-disease-also-have-pruritic-urticarial-papules-and-plaques-pupps-during-pregnancy/

One of the many missed opportunities in my life. I went on undiagnosed for 12-13 years  after that episode . I went on to have my son with another OB at a different hospital as clearly my former OB was not a good fit.

Has your OB taken a look at your rash is it only in the groin area? Are you being sent for a second opinion? Sometimes it's hard to switch Drs in a pregnancy, is it a practice with another Dr or Dr's who you can also see/ meet? Perhaps on of the other Dr's have some insight.

As I am not a Dr., I can't share anymore than my personal experiences. I often wonder if the complications I experienced with my 3 pregnancies and 2 labor/ deliveries would have benefited from knowing about my gluten intolerance decades earlier and had been placed on a gluten-free diet? I have learned to accept I will never know.

Congratulations on your little one. 

Good luck

 

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