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Help Me Help My Doctor

lynn-123

By lynn-123
in Dermatitis Herpetiformis

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lynn-123 Newbie
lynn-123
Posted

Hello all. I just registered here and am so grateful to have found such a huge source of information.

A little background. Over the past year my overall wellbeing has deteriorated little by little. Feelings of doom, just being tired and not feeling like myself. Off and on I've had itchy skin, but nothing drastic until about a month or so ago when I developed a blistery, EXTREMELY (can't emphasize that enough) rash on my left shin. I thought it was poison ivy but it never went away. A week ago a new rash just like it developed above my left elbow. Now I have vague feelings of itchiness on my face and scalp and right arm and leg. I feel like pins are sticking in me and then a little bump will come up that itches like crazy.

Meanwhile, my feelings of doom are turning into full-blown panic attacks. My blood pressure continues to get lower and my heart rate is getting slower. My doctor worked me in on Friday in the middle of a panic attack. From what I've read, this rash is DH and my panic goes right along with it. My doctor was very understanding and listened carefully, but told me the rash looked like eczema and started me on an antidepressant, which I really need at this point. She was willing to do a ton of blood work to ease my mind.

Lo and behold she called me FROM HOME today to tell me she was checking labs and was really shocked. My thyroid has quit working. I am thinking that this is all related and autoimmune. We talked for a bit and based on this she is now willing to test for Celiac, but she mentioned doing blood tests. Are there ANY blood tests that can diagnose this as Celiac (or DH -- I'm so new to this) or do I have to have a skin biopsy?

Also, is there anything specific I should ask for since she's willing to listen to me and do blood work?

I am miserable and wondering how bad this rash is gonna get before I get help. My dermatologist cannot see me until October.

If you are still reading, thank you. Help.

Lynn

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krawhitham Newbie
krawhitham
Posted

Lynn, I wish I could give you a hug!

I have not been dx with anything but suggested by a Dr that I have a food allergy as a result of my skin condition, and I can relate to the anxiety/panick attacks. I felt like I was going so crazy!

Very shortly after starting a 100% gluten-free diet my anxiety disappeared completely. Please make any efforts possible to go gluten-free, diagnosis or not! It won't hurt anything, and it just might help :)

mushroom Proficient
mushroom
Posted
Hello all. I just registered here and am so grateful to have found such a huge source of information.

A little background. Over the past year my overall wellbeing has deteriorated little by little. Feelings of doom, just being tired and not feeling like myself. Off and on I've had itchy skin, but nothing drastic until about a month or so ago when I developed a blistery, EXTREMELY (can't emphasize that enough) rash on my left shin. I thought it was poison ivy but it never went away. A week ago a new rash just like it developed above my left elbow. Now I have vague feelings of itchiness on my face and scalp and right arm and leg. I feel like pins are sticking in me and then a little bump will come up that itches like crazy.

Meanwhile, my feelings of doom are turning into full-blown panic attacks. My blood pressure continues to get lower and my heart rate is getting slower. My doctor worked me in on Friday in the middle of a panic attack. From what I've read, this rash is DH and my panic goes right along with it. My doctor was very understanding and listened carefully, but told me the rash looked like eczema and started me on an antidepressant, which I really need at this point. She was willing to do a ton of blood work to ease my mind.

Lo and behold she called me FROM HOME today to tell me she was checking labs and was really shocked. My thyroid has quit working. I am thinking that this is all related and autoimmune. We talked for a bit and based on this she is now willing to test for Celiac, but she mentioned doing blood tests. Are there ANY blood tests that can diagnose this as Celiac (or DH -- I'm so new to this) or do I have to have a skin biopsy?

Also, is there anything specific I should ask for since she's willing to listen to me and do blood work?

I am miserable and wondering how bad this rash is gonna get before I get help. My dermatologist cannot see me until October.

If you are still reading, thank you. Help.

Lynn

Hi Lynn, and welcome to the forum.

My goodness, you are having a really tough time, but I think you are on the right track and have a good doc.

Yes, there is a full celiac panel of blood tests; make sure she does total IGA as well as the others because if you are IGA deficient it invalidates the other tests. Usually if the blood work is positive your doctor will refer you to a GI for an endoscopy to take biopsies of your small intestine looking for gluten damage

Thyroid problems are a pretty normal autoimmune companion of celiac, but usually not to the extreme of quit functioning; no wonder you have been feeling so bad.

Yes, there are additional blood tests that should be done, for Vitamins D, B12, and folate, minimum; also tests for iron deficiency. All these are common in celiac persons. You will probably also need to start taking a mega B complex supplement and a multilmineral, because your body will not have been absorbing the proper nutrients.

Yes, DH should be biopsied, while the lesion is active, taking the sample from the skin immediately adjacent to the lesion, not from the lesion itself. It is important that the lesion be active. See if your doctor can get you in sooner, because a diagnosis of DH is definitive for celiac disease.

As soon as all your testing is complete you should stop eating gluten regardless of the results because you do sound like you have celiac and should not eat gluten, so a gluten-free trial would be in order even if your testing is negative.

Good luck to you and {{{{hugs}}}}. Hopefully things will get much better very soon.

lynn-123 Newbie
lynn-123
Posted
  • Author

Thank you for your kind replies. And thank you for the guidelines of what to ask for and to do. My doctor was wise enough to go ahead and draw a B12 on Friday. That came back at 452, which they said is normal (range 123 - 730). I don't have any signs of anemia on blood work.

I had a celiac panel drawn this morning, not sure if she got total IgA, but the doctor called me in as labs-only and my blood was drawn and I left. Didn't get to see her like I thought I would. However, my dermatologist has agreed to work me in in just one week, so that's good, and I think whatever is lacking in current blood work she can do.

Will be glad to get some answers for this.

Lynn

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