Does this look like Dermatitis Herpetiformis? Son also has Keratosis Pilaris

[rachel8709]

I've recently stopped consuming gluten, and feel a huge difference.  I was getting muscle spasms all over my body and those have subsided significantly. My stomach doesn't feel uncomfortable anymore. Always had bad allergies and migraines a few times a week. I was having nerve and joint pain. I Developed extremely bad anxiety and depression. I felt like I was starting to go somewhat crazy. But those have mostly stopped in the last few weeks, so I brought it up to my doctor and he did a blood test yesterday for Celiac's.  I have a 7 year old son who I believe could also be suffering from it. He has confirmed Keratosis Pilaris,  and I believe that the itchy rash on his elbows could be Dermatitis Herpetiformis. He has stomach and bathroom problems from time to time. He's a very mellow boy but at times gets easily distracted in class which surprises me. He's also been suffering from excessive and frequent need to urinate. Tons of testing including for Diabetes came back negative, doctor's think its behavior. But from what I've read, it could be caused by Celiac's.  Please let me know if the photos could resemble Dermatitis Herpetiformis. 

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[SLLRunner]

Rachel, I can't open the photos. I would certainly take him to the doctor to have his rash biopsied (biopsy is on non-rashy skin near the rash). 

When you had the celiac test, were you consuming gluten at the time? If not, the result will likely not be accurate. In order for an accurate celiac blood panel, you need to consume plenty of gluten 6-8 weeks prior to the test. For the endescope, it's 8-12 weeks. 

[rachel8709]

[rachel8709]

SLLRunner, 

Thank you for the response. I finally got the pictures to load. I was concerned as well with my blood test not being accurate,  but my doctor said that since it had only been a few weeks since I had stopped eating gluten, that it shouldn't alter the results. I wasn't so sure about that either. I found a very neat gluten free app that you can scan the barcodes of food labela and it will tell you if it is gluten free. It will be a huge help while trying to get used to which foods and brands that are gluten free.

[squirmingitch]

You need to take him to a great dermatologist who is well versed in taking biopsies of the celiac rash, Dermatitis Herpetiformis or dh as we call it around here. The biopsy needs to be taken on a CLEAR place ADJACENT to an active lesion. If they take it ON the lesion then they are doing it WRONG. He needs to continue eating gluten until the biopsy is taken. That is ultra important! You'll have to fight with the derm as 99.99% of the time they say it's eczema, psoriasis, scabies, bed bugs, yada, yada, yada, try this cream for 4 weeks & come back blah, blah, blah. Whatever you do DO NOT let them put him on steroids, either orally or by injection -- that will botch a biopsy if he's been on it prior to biopsy. In the case of steroid topicals, you need to wait till he's been off them for 2 weeks before getting the dh biopsy.

[squirmingitch]

6 minutes ago, rachel8709 said:

SLLRunner, 

Thank you for the response. I finally got the pictures to load. I was concerned as well with my blood test not being accurate,  but my doctor said that since it had only been a few weeks since I had stopped eating gluten, that it shouldn't alter the results. I wasn't so sure about that either. I found a very neat gluten free app that you can scan the barcodes of food labela and it will tell you if it is gluten free. It will be a huge help while trying to get used to which foods and brands that are gluten free.

Sorry but the doc is wrong, wrong, wrong. You have to be eating gluten right up till the blood is drawn AND if the blood is positive then you get sent to a GI doc for an endoscopy. If you haven't been eating gluten then you have to eat it for 2 weeks for the endoscopic biopsy.

[rachel8709]

Squirmingitch,

Thank you for all of the valuable information. I've never been crazy confident with my doctor with prior visits. I'm going to have to research into a better doctor. As for my son who just turned 7, I've expressed concern from time to time with his skin. As a newborn he had severe Acid Reflux, and could not tolerate normal formula. He was on Nutramigen AA, which is Amino Acids. When he was a toddler I noticed his skin was so rough on his legs, and back of arms, even above his eyebrows he has what the doctor says is Keratosis Pilaris. And soon after that he would develop these mysterious blister boils that would only pop up around a few at a time. I thought they were mosquito bites, but now I'm starting to think it could of been possibly DH. Last summer is when his elbows developed this rash. His pediatrician prescribed him Triamcinolone Acetonide, and said it was contact dermatitis. I wasn't believing it. I mentioned maybe an issue with gluten, and he said he doesn't believe people can have an intolerance to gluten unless they have Celiac's. And that recently there was something debunking gluten intolerance. Frustrating. I feel like a lot of pieces would be connected if we both had celiac's. It would make a lot of sense. Hopefully I can get a good dermatologist like you have mentioned. I'll definitely be taking your advice and making sure they don't give the whole run around about his rash. Thank you immensely for all of your knowledge, any little bit helps while trying to figure out what is going on! 

[SLLRunner]

Rachel, I agree that you need a new doctor. Try and find someone in your area who is celiac savvy. They're out there. 

[cyclinglady]

Ugh!  Your doctor was wrong.  You have to be consuming gluten daily in order for the celiac antibody tests to be valid.  Squirmingitch was right!  

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[squirmingitch]

Rachel.

I forgot to mention yesterday that in the case of your son who may well have dh; the reason I didn't say get his blood panel done first is because 60% of us with dh test negative on the blood panel for celiac. DH is best dx'd by the skin biopsy. What happens when people go for the blood panel first is that 90% of the docs & derms out there do not know that we test negative on the blood panel so often. So when we turn up negative on the blood they say that's it, you're negative, there's no way you can have celiac disease & then you're in the biggest battle of your life trying to get them to do any further testing -- even a dh biopsy. Also, a dx of dh is a dx of celiac & no further testing is needed. That's also stated on the U of Chicago Celiac Disease Center website. So if your son got a positive on the dh biopsy then he's done with any further testing which would be the easiest course for all concerned.

Now, my thinking is if he gets a positive for dh then it ought to make things easier for you to get tested properly being his mom & this is a genetic disease.

BTW, anyone in your family who gets an official dx -- then ALL first degree relatives need to get tested every 2 years even in the absence of symptoms because there is such a thing as "silent celiac" where the patient doesn't have any symptoms at all yet their villi is suffering damage. If they present with symptoms before the 2 yr. interval has passed then they need to go get tested immediately. 

[rachel8709]

Squirmingitch,

I'm definitely going to do the Dermatology apt first, especially because my son is extremely scared of needles, so I'm hoping and praying that the DH test will be done accurately. And that is a very good point about doing the DH test to get diagnosed instead of the blood test. I didn't realize how often the blood tests can be inaccurate. That's such a shame that that happens, especially because it seems difficult enough to be living through it all and people must feel so helpless if the test comes out negative when they feel deep down that is truly what they are suffering from. The crazy thing is too, that I talked to my son's pediatrician yesterday about his elbow rash possibly being DH and how that would automatically mean Celiac's, and he 100% disagreed, saying that if it was DH that it doesn't mean it's Celiac's. So frustrating! I'm definitely going to have to research a good dermatologist that hopefully has excellent experience with DH. Very good point too, that if he gets a DX of DH that would make it much easier for myself to get a possible DX. Especially considering I'm sure that my blood test will most likely be negative since I had stopped consuming gluten prior. I've had a swollen lymph node in my neck for 2 years, and an ultrasound said that it was fine, so I'm hoping that it's related to me eating gluten my whole life.  Since I've been researching about Celiac's and gluten, I've wondered if my father who supposedly has psoriasis, may possibly have DH. He has struggled with that since I can remember and I'm 29. I know he has issues with Vertigo from time to time. And thank you again for taking the time to share more knowledge about Celiac's! I think you should become a doctor and be an advocate for all the misunderstood people with horrible doctors!

[squirmingitch]

You're so welcome!

On the blood tests..... they are pretty accurate. It's only the people with dh who test negative on the bloods 60% of the time --- not "regular" celiacs. Just wanted to make that clear.

You should go to here:

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and print off copies of pertinent items so you can take them with you to the docs & show them when they tell you something wrong. Case in point your doc who said you didn't have to be eating gluten.

If you scroll down on this link, it shows & tells exactly how a correct dh skin biopsy is taken.

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[rachel8709]

Squirmingitch,

I received my blood test results back, and aren't sure what to make of them. I started to try to eat healthier around a month ago, mostly veggies, grilled chicken, fruit, etc. I really wasn't mindfully avoiding gluten, until I had realized that it seemed that I had eaten some food with gluten. And I noticed how I felt, so I started avoiding gluten at that point and had went to the doctor Monday, for a new swollen lymph node right above my jawline. I mentioned not really consuming gluten and how much better I felt. And all of the problems I have I feel like it could stem from gluten. So that's when he said to do the blood test, and it was okay that I had been gluten free because the test would show from like the last 6 months or whatever. But here are the results...

TIS TRANSGLUT AB IGA                      mine   <0.5 U/mL            standard    <0.15 U/mL

IGA TOTAL                                          mine     343 mg/dL          standard      70-400 mg/dL

RAST-GLUTEN                                      mine     <0.35 kU/L         standard     BLANK

According to this chart I found for gluten IGE results on viracor.com for my Rast (IGE) it seems I have a low positive result?

[squirmingitch]

As to the RAST - IGE, as I understand it IGE is allergy & not autoimmune. 

The doc did not do the full, current celiac panel.

This is it:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

He did do the Total IgA. that is to see if you're IgA deficient and you are not. If you were, it would make the IgA portions of the test invalid because the IgA would not show up correctly. So the only test you had was the TTG IgA and we know that's a false negative because you were not eating gluten.

[cyclinglady]

If your test results were typed correctly (decimals in all the right places), then you have a positive on the TTG based on the lab range you provided (a 0.5 is higher than a 0.15).  But I think you meant for that range to be applied to RAST test which tests for allergies and not for celiac.  You need the actual lab ranges for that lab.  Can you clarify?  

[cyclinglady]

2 hours ago, squirmingitch said:

As to the RAST - IGE, as I understand it IGE is allergy & not autoimmune. 

The doc did not do the full, current celiac panel.

This is it:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

He did do the Total IgA. that is to see if you're IgA deficient and you are not. If you were, it would make the IgA portions of the test invalid because the IgA would not show up correctly. So the only test you had was the TTG IgA and we know that's a false negative because you were not eating gluten.

In the US and UK, GI doctors prefer the newer DGP over the old Anti-Gliadin tests.  But some countries are still using the old Anti-Gliadin tests.  Just wanted to clarify that!  

[squirmingitch]

3 hours ago, cyclinglady said:

If your test results were typed correctly (decimals in all the right places), then you have a positive on the TTG based on the lab range you provided (a 0.5 is higher than a 0.15).  But I think you meant for that range to be applied to RAST test which tests for allergies and not for celiac.  You need the actual lab ranges for that lab.  Can you clarify?  

Good catch cyclinglady!

[rachel8709]

cyclinglady and squirmingitch,

Thank you for pointing that out! I was about to head to bed last night around midnight when my phone alerted me I had an email, and low and behold it was the results. So looking back at my test results for the TTG I made an error the lab range should say ....<15.0 instead of <0.15....sorry for any confusion, it was getting late and I was beyond tired. Either way, I'd like to ask you both, if you were in my shoes, what would you do in regards to possibly testing again? I can honestly say I have not felt like myself the last 5 years and it feels like it was just a blur, with everything getting worse over time. I would say it's almost been a month of not consuming gluten (with the exception of 1 time without realizing) and I feel 85% better and more like myself. I've suffered from; migraines 3-4 times a week, brain fog daily, swollen lymph nodes (which I'm monitoring to see if the swelling goes down now since going gluten-free), swollen turbinates in my nose that I had to have operated on because my nose was swollen shut and I wasn't able to breathe, severe and constant sinus infections and allergies, dry mouth, dry eyes, dry skin and scalp. Muscle, joint and nerve pain (I'm 29 and felt 79) I broke my leg in 2014 from just running! Extreme muscle, body twitches that includes like all my organs inside my abdomen always spasming, I know for sure I have stomach spasms after I had an upper GI done in 2011 because of severe vomiting and diarrhea. Always extreme discomfort after eating, cramping, bloating, excessive gas, heartburn, acid reflux, constipation, tendinitis, heart palpitations, extreme anxiety even when the phone rings, very irritable, severe depression and fatigue, horrible memory. Numbness in my left pinky finger and ring finger, and tingling throughout body. Feeling like I'm having hot flashes, and then at times I'm freezing cold for no reason. I'm sure there's other things I forgot, but I've literally felt like my quality of life was gone and I had even secluded myself from friends because I so depressed. But interestingly enough, after accidentally not consuming gluten and then realizing it, I feel like I'm taking my life back over with nearly almost all of those symptoms being gone. With the results from the blood work my doctor did, do you think it's possible it could still be Celiac's? I have no knowledge on how or what the numbers need to fall into to be considered a Celiac. I'm not sure if the total IGA to be a Celiac should be higher than the range or lower, for any of the tests for that matter. I know squirmingitch mentioned that it wasn't a complete test done. And I'm not sure I trust my doctor enough to take it seriously. Am I wasting my time? Do I subject myself to gluten again? Can I have all these symptoms and just possibly have gluten intolerance? My grandfather on my mother's side had been told he had colitis but my grandfather wasn't sure it was a correct diagnosis, he passed away when I was 4 from lymphoma. And my son clearly has some type of rash that could be DH. I'm just so confused on what direction to take. Thank you for letting me vent and sorry if I just rambled on! Thank you all again for the time you are taking out to help!

[driftlessmom]

On 3/22/2016 at 3:58 PM, rachel8709 said:

I've recently stopped consuming gluten, and feel a huge difference.  I was getting muscle spasms all over my body and those have subsided significantly. My stomach doesn't feel uncomfortable anymore. Always had bad allergies and migraines a few times a week. I was having nerve and joint pain. I Developed extremely bad anxiety and depression. I felt like I was starting to go somewhat crazy. But those have mostly stopped in the last few weeks, so I brought it up to my doctor and he did a blood test yesterday for Celiac's.  I have a 7 year old son who I believe could also be suffering from it. He has confirmed Keratosis Pilaris,  and I believe that the itchy rash on his elbows could be Dermatitis Herpetiformis. He has stomach and bathroom problems from time to time. He's a very mellow boy but at times gets easily distracted in class which surprises me. He's also been suffering from excessive and frequent need to urinate. Tons of testing including for Diabetes came back negative, doctor's think its behavior. But from what I've read, it could be caused by Celiac's.  Please let me know if the photos could resemble Dermatitis Herpetiformis. 

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up

Did you ever have your son biopsied or further tested? My 4yr old son has had the same looking rash on his elbows. It popped up a couple months ago but subsided slightly after a combo of Rx Zyrtec and Triamcinolone but is back after discontinuing those. He itches all over but rash is only on the elbows.