Biopsy done today - low iron, DH, autoimmune kidney disease

[amanda3]

Okay.

Long story short - I've had itching blisters coming and going for at least 10 years, I'm 27 now. When I was 23 I got diagnosed with an autoimmune kidney disease. Ever since then I've been very careful with my diet and avoiding, but not completely cutting out gluten. I've had stomach problems since I was a kid. Had acne since I was 14. Diagnosed with PCO. Always feeling tired. Can eat tons of food and never gaining any weight. 

Recently I found out I am anemic, Ferritin was 7 (range is 10-70 I think) I was also deficient in D-vitamin. They took transglutaminas tests but it was negative.

I started eating gluten again in February, and my blisters and ezcema like rashes came back quite quickly. I know a gastroenterologist and told him about my low iron, my blisters etc. And he immediately said that it sounds like celiac disease. He scheduled a gastroscopy (they go in with a camera through the mouth and take biopsies from the small intestine) that I did today.

The doctor took 3 biopsies and said that it looked like the villi was flattened. He also said that I could start a gluten free diet if I wanted to before the test results comes back.

I'm just confused right now...

shouldn't they do a skin biopsy on my blisters as well? I read about ppl having DH who do that and get diagnosed that way.

how can the blood tests be negative and the biopsy not?

if i go on a non gluten diet now, my blisters and rashes will go away which is good ofc, but then if the biopsy come back negative, they can't do a skin biopsy?

It would make so much sense to me if I'm celiac. Therefore I'm scared the biopsy wont show anything since I've been going on and off gluten for years. Although the doctor said it looked like I am celiac? And the blisters can't be anything else than DH!! And the low iron and everything. Ugh. I just want the results now... And know for sure.

[kareng]

A GIvdoctor isn’t going to biopsy your blisters.  You need a dermatologist for that.

[amanda3]

  On 5/4/2018 at 4:38 PM, kareng said:

A GIvdoctor isn’t going to biopsy your blisters.  You need a dermatologist for that.

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Yes I totally see that, but why isn't the GI Doc sending me to a derm? I showed him the blisters and he said yeah i dont know you have to see a derm. But if they're going to diagnose the same thing, celiac disease, shouldnt he send me there ? To really be sure

[tessa25]

There are several blood tests. You have to be eating gluten daily for 12 weeks before the blood test. You only need a positive on one blood test to result in a GI doing the endoscopy/biopsies. You probably didn't do the full celiac panel. Since the doc saw flattened villi he's probably thinking the biopsies will confirm the flattened villi and you'll have your celiac diagnosis.

 

[amanda3]

I'm surprised they only take one of these tests as a standard, the transglutaminas? What are the other tests? Should I get these checked even though I already had a biopsy - meaning could the test be positive even though the biopsy is not? 

[tessa25]

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

It's up to you whether you test the rest.

[cyclinglady]

  On 5/4/2018 at 5:42 PM, amanda3 said:

I'm surprised they only take one of these tests as a standard, the transglutaminas? What are the other tests? Should I get these checked even though I already had a biopsy - meaning could the test be positive even though the biopsy is not? 

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Unfortunately, it is about catching as many celiacs for the least amount of money.     Some people with DH will be seronegative (negative on all the blood tests).   Based on your low iron stores and the fact that you already have an AI disorder, and if your GI visually saw flattened villi (and you have what looks like DH), you probably do not need to see a dermatologist.  Wait for the intestinal biopsy results.  If negative, then consider a dermatologist consult or trial the diet.  

In the meantime, read all the threads in the DH section.  There is lots of valuable advice.  I do not have DH, but I understand that you need to be super strict with the diet.  

 

[GFinDC]

  On 5/4/2018 at 5:42 PM, amanda3 said:

I'm surprised they only take one of these tests as a standard, the transglutaminas? What are the other tests? Should I get these checked even though I already had a biopsy - meaning could the test be positive even though the biopsy is not? 

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A positive on any antibody test is a positive celiac result.  And yes, sometimes people have positive blood antibodies but the gut damage is not severe enough to show up yet.  In people with DH, some of the IgA antibodies are deposited in the skin, so the blood test may not show a great number of them.

[plumbago]

It sounds like you do have it, but that you’ll just need to wait a little longer to get  confirmation. Something similar happened to me - the gastro said that upon visualization it seemed that the diagnosis would come back as celiac disease, but that they’d wait for the biopsy for confirmation. As for why the GI didn’t reach out to dermatology, a couple of reasons - only one of which is cynical :).

You can always get a biopsy of a patch later on, if you want. There are other reasons, as far as I know, that you can have flattened villi, but the likeliest is celiac disease. As for why your transglutaminase came back negative, I’m not sure of the timeline of when you were tested as it relates to when you were or were not eating gluten. Could that have had something to do with it? Or, lab error. Can't really say.

 

[amanda3]

But can I get a biopsy of a patch later if I stop eat gluten now? Maybe the biopsy wont show anything then

[squirmingitch]

  On 5/5/2018 at 3:21 PM, amanda3 said:

But can I get a biopsy of a patch later if I stop eat gluten now? Maybe the biopsy wont show anything then

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No. The eat gluten rules apply to the dh biopsy the same as to the celiac blood panel. If you're gluten free, you're sunk.