Positive DH skin biopsy. Negative coeliac blood tests. Do I need endoscopy?

[Booster79]

Just had results of skin biopsy which shows positive DH. My coeliac blood tests were negative. Don't get many gut symptoms but do I need a endoscopy? Have my first gastrology appointment next week. 

I'm anaemic, on iron tablets but still feel tired all the time. Possibly have hyperthyroidism (They are re-testing bloods) , pins and needles in my hands and feet at night, palpitations, brain fog, raynards and some joint pain ?

[kareng]

 

 

If you have DH, you have Celiac.

https://www.cureceliacdisease.org/faq/how-is-dermatitis-herpetiformis-dh-diagnosed/

“...It’s not necessary to perform an intestinal biopsy to establish the diagnosis of celiac disease in a patient with DH; the skin biopsy is definitive. ....”

 

[knitty kitty]

Yes, I think you should have an endoscopy, not to diagnose Celiac Disease, but to examine the amount of damage done to your intestines and to look for other possible problems like atrophic gastritis.  Cycling Lady's atrophic gastritis was only diagnosed with an endoscopy.  Atrophic gastritis contributes to anemia.  And anemia is related to thyroid dysfunctions. 

Here's an article that might be of interest.

https://www.ncbi.nlm.nih.gov/m/pubmed/28400547/

Ask for vitamin and mineral deficiency tests, too.  You might need B12 and folate in addition to iron in order to correct your anemia.

Hope this helps!

[squirmingitch]

Great replies by Karen & knitty kitty. I just want to caution you Booster79 to make a copy of the info. Karen linked you to & take it with you to the gastroenterologist BECAUSE they don't often know 1) about dh 2) that a positive biopsy of dh IS a positive dx of celiac disease in & of itself 3) the villi damage in those of us with dh tends to be patchier therefore a minimum of 6 biopsies is more important than ever in order to hit the "sweet spots" and finally because IF the endoscopic biopsies do not hit the sweet spot, then the GI will most likely dispute your dx & claim you DO NOT have celiac disease. You don't want that to happen. 

FYI, those of us with dh tend to experience fewer & milder GI symptoms that celiacs who do not have dh. This is mainly attributed to the fact that in large part, the antibodies are deposited under the skin. DH is the skin presentation of celiac disease.

You need to keep eating a normal gluten diet until the endoscopy is done otherwise you risk a false negative. As far as blood tests for celiac go, 60% of us with dh test negative on the celiac blood panel.

[Booster79]

Thank you all for your replies. I will ensure I print articles and take them with me to gastro appointment. I'm so confused. If I definelty have coeliac as this article says then is it really necessary to find out how much damage is done. I just want to go gluten-free as soon as possible as this is driving me mad at the moment. I could be waiting another 2 months for a biopsy and goodness knows what damage I am doing to my intestine right now carrying on gluten. I am also worried for my family. My children all seem healthy but my 6 year old does have occasional bouts of stomach ache and diarrhoea. I'm in the UK. So far dermatology seem good but everything seems to take so long. Can't they just diagnose the vitamin deficiencies via blood tests and treat accordingly rather than the hassle of an endoscopy. I'm also worried if the biopsies are negative no-one will take the skin biopsy results seriously. 

Thanks for taking the time to read and reply 

[kareng]

12 minutes ago, Booster79 said:

Thank you all for your replies. I will ensure I print articles and take them with me to gastro appointment. I'm so confused. If I definelty have coeliac as this article says then is it really necessary to find out how much damage is done. I just want to go gluten-free as soon as possible as this is driving me mad at the moment. I could be waiting another 2 months for a biopsy and goodness knows what damage I am doing to my intestine right now carrying on gluten. I am also worried for my family. My children all seem healthy but my 6 year old does have occasional bouts of stomach ache and diarrhoea. I'm in the UK. So far dermatology seem good but everything seems to take so long. Can't they just diagnose the vitamin deficiencies via blood tests and treat accordingly rather than the hassle of an endoscopy. I'm also worried if the biopsies are negative no-one will take the skin biopsy results seriously. 

Thanks for taking the time to read and reply 

Yes.  They can do some blood work to see if you are low in things.  The fact is, when the guy heals, you shouldn’t need as much or any supplementation different than anyone else.  So some doctors won’t do them right away.  They figure-  wait a few months and see what you are able to absorb - unless something is very very low right now.  

[squirmingitch]

8 hours ago, Booster79 said:

Thank you all for your replies. I will ensure I print articles and take them with me to gastro appointment. I'm so confused. If I definelty have coeliac as this article says then is it really necessary to find out how much damage is done. I just want to go gluten-free as soon as possible as this is driving me mad at the moment. I could be waiting another 2 months for a biopsy and goodness knows what damage I am doing to my intestine right now carrying on gluten. I am also worried for my family. My children all seem healthy but my 6 year old does have occasional bouts of stomach ache and diarrhoea. I'm in the UK. So far dermatology seem good but everything seems to take so long. Can't they just diagnose the vitamin deficiencies via blood tests and treat accordingly rather than the hassle of an endoscopy. I'm also worried if the biopsies are negative no-one will take the skin biopsy results seriously. 

Thanks for taking the time to read and reply 

I didn't realize you are in the UK. Yes, I understand it could take a good while before you can get an endoscopy done. Did the dermatologist tell you that you could stop eating gluten or to keep eating it or was nothing said about that at all? I take it it was the dermatologist who scheduled the appt. with the Gastro?

Since I don't know all the in's & out's of the UK system, I think it would be good for you to get in touch with other celiacs there. I looked up the Coeliac UK & it looks like they have lots of info. 

https://www.coeliac.org.uk/home/

Local Groups

https://www.coeliac.org.uk/get-involved/about-our-local-groups/

It looks like they can put you in touch with others to get the support you need & questions answered:

https://www.coeliac.org.uk/join-us/

I am not sure of the official diagnosing guidelines for coeliac in the UK when it pertains to dh. I think they should be the same as here (US) but I am not positive. I found this on the Coeliac UK site but it is from 2103 so not sure if everything in that is still valid but it says you would still need an endoscopy

https://www.coeliac.org.uk/document-library/133-dermatitis-herpetiformis-dh/

I found this which doesn't make it any clearer as to what exactly is required in the UK for a dx if you have a positive dx of dh however, there is some good info. in this link.

https://www.nhsinform.scot/illnesses-and-conditions/skin-hair-and-nails/dermatitis-herpetiformis

Ah hah! I found this:

How is dermatitis herpetiformis diagnosed?

Dermatitis herpetiformis can be hard to diagnose – it may be confused with more common itchy skin conditions, such as eczema and scabies. When the condition is suspected, a skin biopsy, performed by a dermatologist, is usually taken to confirm the diagnosis. It is important to do this as treatment will involve a change in diet and may involve long-term tablets. Blood tests are usually performed too. Occasionally a small biopsy may also be taken from the inner lining of the bowel to check for the type of inflammation that is seen in coeliac disease. If required, this investigation is performed by a gastroenterologist (bowel specialist) in the hospital setting.

Here:

http://www.bad.org.uk/for-the-public/patient-information-leaflets/dermatitis-herpetiformis-gluten-sensitivity

At the bottom it says it was published 2016 with a review date of March 2019. So that would be current information. 

So still, we don't have a concrete answer on exactly what is going to be required but it looks like you may not be actually required to do anything else. I guess the gastro doc gets to decide what further testing????

I just don't want to steer you wrong so you need to check it out before you decide to go gluten free right away. The docs in the UK do seem to be more up to date on coeliac though than here in the US. 

 

Since celiac disease is genetic then yes, all first degree relatives of yours - parents, siblings, children - should be tested every few years since celiac can present at any time in life. If symptoms present (like with your 6 yr. old) then they should be tested right away. 

 

[Iiv]

Skin biopsy is enough, as said above the endoscopy is probably just to see if you also have damaged guts. 

It's your choice. 

You could compromise too, and lower your gluten intake. 50mg is probably perfectly enough, since it does show damage to quite a few and you're aiming for low maintenance. (its far less than the 5 or more grams you eat today) this will not make your rash go away, but it's practice towards your strict gluten-free life. 

You could ask for a quick time. 

If your gut is damaged, it will take at least 3 months to heal, more likely far longer than that. The same goes for your rash. It won't go away in a few days. It will slowly begin to improve... After a maybe a couple of months without gluten.