In tears....:(

[Laurel F]

In my saga to get diagnosed, I had an IgA blood test (I had been eating gluten for a few months). It came back negative. I managed to see the dermatologist yesterday (woo hoo!) who said my rash is "consistent with DH" but he would not say it was DH. He did two punch biopsies which will be ready in about a week.

My primary care sent me an email saying that because the IgA is negative, I do not have celiac disease. So hoping the biopsy shows something.

Why will no one give me a diagnosis??? I'm going out of my mind. I do not want to go gluten free unless I have to because I already have several restrictions on what I can cook for my son with multiple food allergies, and wheat is a big part of his diet (he is allergic to peanuts, tree nuts, soy, eggs and sesame).

I'm at my wits end.  

Thanks for being so supportive everyone!

[tessa25]

It sounds like you were not given the full celiac panel.

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You have to be eating gluten daily for 12 weeks before the blood test. A positive on any one blood test should lead to a gastroenterologist doing an endoscopy /biopsies to confirm a celiac diagnosis.

 

 

[GFinDC]

Some people with DH do lousy on the blood antibody tests.  They hoard all their gliaden antibodies in their skin instead of their bloodstream.  So they may test negative on blood antibodies but still have plenty of antibodies in the skin.  Sometimes they even flunk the endoscopy tests for the same reason.

[cyclinglady]

Oh no!  One celiac test?  Only one was given?  The TTG IgA, I assume or you just got the Immunoglobulin A (IGA) test?  You should insist on the complete celiac panel.  You should also know that  some people with DH do not test positive on any of the celiac blood tests.  If your skin biopsies are negative, make sure they biopsy was taken correctly — not on the rash, but adjacent.  This mistake is make ALL THE TIME by dermatologists.  

Because of what you disclosed in another post, you should consider asking a Gastroenterologist and not your GP (who seems to know little about celiac disease and testing) why you had small intestinal damage (per initial biopsies) went gluten free and later a second biopsy revealed a healed small intestine, yet you were not given a celiac diagnosis.   Later, it seems you started consuming gluten again or were getting traces of gluten into your diet, and now may have developed or worsened your DH.

Quote:

“Hi, I have been trying to get a celiac diagnosis for awhile now. I had an endoscopy years ago that showed flatted villi but the biopsy said "possible sprue or possible duodonitis." I went g.f. and had another test a few years later. The villi were normal but I had what I thought was a d.h. rash. The dermatologist said it did not look like d.h. and said it was just eczema. 

To test myself, I started eating gluten again. I have occasional bowel issues but not like I had years ago.”

Now my legs look like I have d.h. again.”

You can go gluten free and safely prepare gluten in your house.  I did this for 12 years when my hubby was gluten free and before I was shockingly diagnosed.  You just can not ingest gluten.  The only thing you need to avoid is flour because flour has been documented to stay in the air or fall on surfaces for up to 24 hours (one reason not to have a coffee in a bakery or donut shop — sit outside!)  You can cook pasta, make sandwiches, open a box of cookies....whatever!  Just do not use loose flour.  

If he needs a birthday cake, have a friend bake it at their house.  Or he may love a gluten-free cake.  Soon I will be baking my kid a gluten-free Chocolate Mayonnaise Cake for her birthday and she is not celiac!  She actually prefers it to a gluten-containing bakery cake!  

There are plenty of alternate grains besides wheat, barley and rye for your son.  Think outside the box.  

I have said this before you should get your son tested for celiac disease.  I have allergies and I never had a positive for wheat.  Wheat allergies and celiac disease are separate issues.  He may very well have celiac disease.  Why?  Because his mom had a positive intestinal biopsy and went gluten free and then had a repeat intestinal biopsy and healed.  I am not a doctor, but that is pretty damning evidence. 

Maybe you need to consult with an attorney who specializes in malpractice.  You appear to have been put through a diagnostic nightmare.  

I hope this helps.  Mothers need to take care of themselves first, so that they can help their children.  It is like the oxygen masks on an airplane.  Adults are instructed to put their mask on first before assisting others (e.g. children).

 

 

 

 

[Laurel F]

My hell continues. Punch biopsy showed Excoriation with inflammatory scale and adjacent mild superficial perivascular lymphocytic inflammatory infiltrate consistent with mild hypersensitivity reaction or eczematous process.

Of course, both dermatologist and primary care are out of office. The secretary at dermatology called and said that the dr left a message saying that the test did not show DH but perhaps it was done too late and we can discuss next steps when he gets back in 3 weeks! What the hell do I do for 3 weeks? Why is this so darn hard?

Thanks for all your support, as I itch and bleed and itch and bleed...

Laurel

[cyclinglady]

I am so sorry.  ?

[Posterboy]

On 2/22/2019 at 2:16 PM, Laurel F said:

In my saga to get diagnosed, I had an IgA blood test (I had been eating gluten for a few months). It came back negative. I managed to see the dermatologist yesterday (woo hoo!) who said my rash is "consistent with DH" but he would not say it was DH. He did two punch biopsies which will be ready in about a week.

My primary care sent me an email saying that because the IgA is negative, I do not have celiac disease. So hoping the biopsy shows something.

Why will no one give me a diagnosis??? I'm going out of my mind. I do not want to go gluten free unless I have to because I already have several restrictions on what I can cook for my son with multiple food allergies, and wheat is a big part of his diet (he is allergic to peanuts, tree nuts, soy, eggs and sesame).

I'm at my wits end.  

Thanks for being so supportive everyone!

Laurel,

Your wits end comment could describe many people with DH.

There is actually in the DH forum a thread by that name.

Here is some threads that might help you.

Also check out this old research on DH before it was known to be associated with Celiac disease it might help you.

https://core.ac.uk/download/pdf/82674034.pdf

If it is the superficial inflammatory dermatoses the doctor's think it is then see the research to inform you more about their diagnosis from the BMJ entitled My approach to superficial inflammatory dermatoses

https://jcp.bmj.com/content/58/12/1233

I hope this is helpful but it is not medical advice.

Good luck on your continued journey.

Posterboy,

[jean9v]

On 2/22/2019 at 3:16 PM, Laurel F said:

In my saga to get diagnosed, I had an IgA blood test (I had been eating gluten for a few months). It came back negative. I managed to see the dermatologist yesterday (woo hoo!) who said my rash is "consistent with DH" but he would not say it was DH. He did two punch biopsies which will be ready in about a week.

My primary care sent me an email saying that because the IgA is negative, I do not have celiac disease. So hoping the biopsy shows something.

Why will no one give me a diagnosis??? I'm going out of my mind. I do not want to go gluten free unless I have to because I already have several restrictions on what I can cook for my son with multiple food allergies, and wheat is a big part of his diet (he is allergic to peanuts, tree nuts, soy, eggs and sesame).

I'm at my wits end.  

Thanks for being so supportive everyone!

 

[jean9v]

Find out if your IgA numbers are where they should be... If they are very low... you will have a false negative to Celiac.  The biopsy will probably not show anything... that is what happened to me... go on the gluten-free diet for 2 weeks... I am guessing that the itch to your rash will stop within in 5 days... mine did in 3.... if you have any stomach/digestive issues... you will also have less pain by the end of the 12 days... stop the dairy too, if you can for those 2 weeks... you could also have issues breaking down the milk protein, as well... a bit lactose intolerant .. if so, I had lactose issues, but, once I started to heal from the gluten-free diet within about 6-8 months I could do dairy again... If you are someone who also has sinus issues, can't kick a head cold very quickly, then you have IgA deficiency... which your doctor needs to know about.  Please google more about it.  If you googel IgA Deficiency and Celiac you will learn a great deal on how clueless some doctors are with this.  

[Laurel F]

Just found these notes that I wrote back in 2009. Ten years ago had same rash that got better off gluten. I should share with my primary care and dermatologist. Looks like I got the same run around then. BTW, I wrote that the rash got better when I stopped gluten.

[jean9v]

Well... if it walks like a duck... I say you have Celiac or you are very sensitive... go on the gluten-free diet... your Vitamin D was low... because you are not absorbing nutrients from your diet... take a very good multi-vitamin breakfast and dinner to help build up your levels... and eczema is a label for any skin condition, that they have know idea of what it is... the gluten-free Diet is not that hard... it is a life saver...and now there are so many good gluten-free items... Costco has Pizza in a 3 pak that is great... Aldi and Thyme Market have so many items as well.. at really great prices.   Try it for 2 weeks... start on Wednesday... gluten-free for Lent. 

 

[Ennis-TX]

23 minutes ago, Laurel F said:

Just found these notes that I wrote back in 2009. Ten years ago had same rash that got better off gluten. I should share with my primary care and dermatologist. Looks like I got the same run around then. BTW, I wrote that the rash got better when I stopped gluten.

Looks like a positive celiac diagnosis if I read right. Those with DH have less damage to the intestines and lower IgA due to the antibodies in the skin. BUT HERE it is so bad you still have slightly elevated IgA and early sprue damage from celiac at. Celiac Sprue. IE they diagnosed you back in 09

Check the newbie 101 section in coping, drop all dairy and anything with added iodine as it will make it DH worse for many. FOR now stick to a whole foods diet, I have a list of treats and gluten-free alternatives that I update quarterly. 
https://www.celiac.com/forums/topic/91878-newbie-info-101/
https://www.celiac.com/forums/topic/123298-gluten-free-food-alternative-list-2019-q1/