DH and needing diagnosis during Covid 19

[Shellelyjon]

Hello all,

My story starts about 3 months ago with DH. I had it progress over a few weeks, went to 3 prescribers and finally at the third visit the suggested a skin biopsy. It came back as IgA positive and “could not rule out DH”. I realize all my odd little issues with digestion could just be undiagnosed Celiac. I have thickening of the intestinal wall seen in my colonoscopy as well as pre cancer lesions in 2 separate biopsy’s. I’m a very healthy 52 year old female. The doc blew off a serum test that was super specific for celiac that my primary care MD performed so he never got any samples for testing during my procedures. So here I am-yesterday I had a restaurant forget to sub gluten feee bread and within a couple hours the stomach cramps and poop started and that night, the DH was back. Woke me up this morning. Bilateral knees and lower legs. I’ve had the itching pop up on my buttocks over the past few weeks but felt it was settling down. With Covid19, there is no chance of an appointment for testing to confirm Celiac. That’s said, it sounds pretty positive to me and I need to eliminate any type of possible gluten contamination, not just gluten from my general food diet. Would it be safe to make this assumption and call it Celiac. Kind of walks like the duck if you know what I mean.

[Scott Adams]

You certainly have symptoms that are consistent with celiac disease, and if your symptoms go away when gluten-free it is even more likely.

You do need to eat gluten daily for at least 4 weeks to get tested for CD. Before you go GF perhaps you could get a blood test for it?

 

[cyclinglady]

Only you can decide if a diagnosis is critical.  At your age (close to mine) a few benefits can be 1) easier to get first -degree family members tested as some celiacs are asymptomatic, 2) you can get gluten-free food in jai” or a hospital, and 3) your doctors can keep an eye out for additional autoimmune or other illnesses (like osteoporosis).  

Please read through the DH section.  I think you will find great tips and will realize that those with DH must be super strict.  Like no eating out or avoiding even gluten-free processed foods until you are well and are willing to risk a flare-up.  

The itch can drive you insane from what I understand.  I hope you feel better soon.