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Dh With Negative Bloodwork?

keepinthefaith

By keepinthefaith
in Dermatitis Herpetiformis

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keepinthefaith Newbie
keepinthefaith
Posted

Hi, My daughter developed a very bad rash that looked like DH. Some months before this rash, she had positive stool test from Enterolab, then went off of gluten for a few months. She went back on and within one month got obvious blisters in typical DH places that hurt her, and have ended up scarring -- even her face!

We went to a derm. doc, who said if it wasn't DH he would eat his hat. We waited so long for the appt. that he couldn't biopsy anything, as they were largely healed. So he sent us to a gastro. doc who agreed with the derm's suspicion and did a lot of blood work.

Just got results today (read over the phone, so I don't have it in front of me).

But it says, her Ttg antibody IgA is less than 3, with 5 being the limit. That is in range for that test.

Her antigliadin is less than 3 with 11 being limit. That is in range for that test.

Her IgA serum is 89...the normal range is 70 to 432. In range.

She was negative for DQ2 and DQ8 genes, but showed "DQB1 - 03-DQ7" and "DQB1 - 05-DQ5"

She has a brother with autism who is Gluten-free Casein-free, and a mom ( me) who is gluten-free with autoimmune thyroid disease who has increasingly sensitive symptoms to gluten when I have an infraction.

This GI doc thinks that Enterolab is bunk.

What do we do now? Wait until another DH outbreak so it can be biopsied? Is this necessary? My child is 14 and is looking for any way out of the gluten-free diet -- as in agreeing with the GI doc and thinking Enterolab is snake oil and she now is negative for everything and therefore does not need diet.

Is someone able to speak on this?

Thanks......

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confused Community Regular
confused
Posted

I have the same genes and have been diagnosed with DH. I also tested positive threw entrolab and blood work. But I have somewhere that many with DH do not test positive threw blood work. I wish i knew were i read that, maybe someone else will know.

I would have her eat as much gluten as possible and schedule an new appt and make sure there is an outbreak.

paula

ravenwoodglass Mentor
ravenwoodglass
Posted

I had severe DH since childhood and had almost every system impacted before I was finally diagnosed with celiac at 45. I was close to death. I do not show up on blood work. I do so hope she wakes up and gets back on the diet, so much more is at risk than just her skin.

keepinthefaith Newbie
keepinthefaith
Posted
  • Author

Thank you for your replies. Paula, I am afraid to gluten-load her because the outbreak was so bad last time -- she is multi-racial (her white side of the family has a LOT of celiac symptoms) and the scars are just terrible. But if she needs a diagnosis to follow the diet....

Ravenwoodglass -- I thought I would mention this. I have a middle child -- not my one with Asperger's -- who is 4 foot 7. Everyone around her is growing and she does not seem to squeak out much height at all. Her brother, who is 10 and 2 .5 years younger is far taller than her.

Both my husband and I are very tall so it seems odd that she is so teeny. She had higher positive test results than her sister and I did through enterolab. The GI was interested in testing her for celiac, but I am suspect that once she sees negative DQ 2 and DQ 8, plus negative blood work in her sister, she won't bother. She's good, but pretty traditional.

My girl is willing to go gluten-free if it can help her grow. No puberty at all yet, by the way and she is 12.5.

I know you mentioned growth stunting in one of your kids, as well as Asperger's (in another ?). Based on your own symptoms, it seems as if we have a lot in common with our family gluten issues.

Is it worth it to cross post my original post in the diagnosis and testing section -- in case people who really knows all the blood work and genetics stuff won't read this because of the DH topic, or would that be a pain? ( Not saying that you guys don't know...I am just hunting for genetics testing info too)

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