Blood Test Taken Yesterday

[mari-lyn]

My mother's twin sister was dx. 45 years ago at Mayo, so, I grew up knowing about celiac disease. She had the weight loss and GI problems. The Mayo clinic wanted my mom to come for "tests". She was in Ohio with 4 children and they were not going to reimburse for travel,etc. So, it did not happen. I have a niece (dx at 15, dx with Diabetes at 9). Most likely my oldest sister had it (she has passed away) and when her daughter held her stomach after a meal I suggested that she go get tested.

Anyway, I asked for a blood test after a suspicious rash about 2 months ago - on feet and then hands (fairly symetrical).

My question is - genetically, celiac disease is strong, but no one has DH...I am a little confused. Are all people with DH also Celiac or are people with DH gluten sensitive. I am sorry if this has been addressed in the past messages...it was a question that just came to me. I have read the info on this site. I understand that many people with DH may have celiac disease and that people with DH respond to a Gluten free lifestyle.

Hopefully, I get the results tomorrow. They had to be mailed to Mayo. Thankfully, my doctor did not question my request. She FAXed over the order and I went upstairs to the lab. (I work in a small critical access hospital - 25 beds- average patient meals - 10 {however, 4 today}).

But after reading here it seems that I might need a skin biopsy? - the blood test might not tell me about the absence/presence of DH.

Isnt' technology wonderful. What did people do before they could talk with everyone?

Marilyn

[mari-lyn]

Hi Marilyn:-) *Genetically*, many Celiac's, MS patients, cystic fibrosis patients, etc...have a high rate of this and the test most doctors use for this is not sensitive enough...you might want to request a Western Blot...

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So, this might be latent Lyme disease?

[GFBetsy]

Marilyn -

DH is like one of those Vinn Diagrams you had to do in Math class when you were younger. You draw a big circle and write "celiac" in it, and then draw a smaller circle inside the big circle and label it "DH". In other words, all people who have DH have celiac, but not all people who have celiac have DH. I have 1 mother, 3 aunts, 2 sisters, 1 nephew, 1 daughter, 6 - 10 cousins (it's hard to remember which have it and which don't) and at least 2 first-cousins-once-removed who have celiac disease (all on the same side of the family), and only ONE of them has DH. In fact, it was the one who has DH who started everyone else on the path to diagnosis, because (up to that point) my mom and her sisters had been watching out for the classic signs of celiac (they knew the disease ran in the family), and no-one had presented with those classic symptoms. But that itchy rash that my cousin had resulted in her diagnosis with celiac, which resulted in a lot of my family members being tested, which led to an awful lot of gluten-free cooking in my mother's family!

I think you did the right thing in asking to have blood work done. If it comes back negative, you might want to consider having your rash biopsied. (Remember to make sure they biopsy the skin NEXT TO the blisters, not the blisters themselves.) If it comes back positive for DH, that means you've got celiac too, which means you need to eat gluten free. And that's irrespective of whether you have latent Lyme disease or not.

Good luck in figuring things out!

[GFBetsy]

Marilyn -

Just wanted to clarify a bit on my last post: If your blood work comes back positive, then you've got celiac, and you need to avoid gluten. But sometimes (up to 14% on the most accurate test, according to one of my husband's labratory magazines) people who do have celiac have negative test results. That is why I suggest that if your blood work is negative you ought to have a skin biopsy of your rash done. I dont' have much knowledge about the accuracy of the skin biopsy procedures, but at least it will give you a second chance to see if your rash is being cause by gluten intolerance.

And, after all that work looking for a medical diagnosis, I would also suggest that you give the diet a try anyway (if your results come back negative). After all, you know this disease runs in your family. The fact that you are on this board means that you suspect you may have it. If the doctors inform you that you DON'T have it, that's no reason for you NOT to try the diet. It won't hurt you to go gluten-free for a couple of months and see if your rash responds positively.

Those are my suggestions, anyway. Hope they are helpful . . . and good luck in figuring out what your rash is (whether it is DH or something else). (Considering your genetic history, though, I wouldn't be surprised if it is celiac . . . and, hey! at least you've already found this site, so if you DO have celiac you've already got a lot of the information and support that you'll need to successfully deal with the dietary change!)

Best Wishes!

[mari-lyn]

Thanks for all of the info - especially the % - etc.

Glianid Anibodies (IGA) - 4.1

Reticuluin AB negative (no numbers)

Tissue Transgultn 5.6 (range 0 - 30).

Anyway, have to run off to church but I sure have appreciated everyone's advice and time.

I am the founder of the support group at the hospital where I work so I am not far from celiac disease each day and all of the wonderful people that I have met.