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(Photo links at end)

Hey guys,

Please bare with me as my journey has been a long one.

Im looking for advice on if I should push my pediatrician to get my baby tested for celiac disease. I have a long history of celiacs in my family (my mom, aunt, uncle, and grandmother are all confirmed to have celiac and possibly family before that who werent diagnosed but had similar problems- doctors didnt really know about it then).

Anyways, so my 1 year old baby (born Oct. 2017) has had a TERRIBLE, ITCHY rash since mid October/ November. When I initially brought him in they though it was a fever rash. Then it progressively got worse and started oozing. They then diagnosed him with impetigo (not sure if spelling right). He did a treatment of that with no results. He then got a bacteria biopsy (nothing showed but they still treated him for the other strain of impetigoin in case). Still no results. I was sent to a dermatologist where they weren't sure but treated him for scabies and some -itis (inflammatory) disease. Again nothing. I come back and they say they think it is this rare skin condition in babies called EPF (infatile eosinophilio folliculitis). They have never personally seen a case though. They say there is nothing they can do for him and it will go away on its own but it can take months to years. So at this point I have spent an arm and a leg on trying to figure out what is wrong with my baby and come back with a can do nothing. I mentioned to both my pediatrician and dermatologist that my family has a strong history of celiac disease and they blew me off and said he is too young. I had my aunt come down and visit recently though and she had dermatitis herpediformes before being diagnosed with celiac and thought it has a similar appearance.

The rash usually starts out by looking like a bug bite. Just a pink lump and it has a much larger red circle around it. Next stage it starts oozing and blistering. Then my son usually scratches it so next stage is scabbing. (I try to put anti-itch cream and lotion but it only helps so much). I have attached 1 photo. What do you guys think? (Also the file size you can add is so small it wont let me attach photos, so let me know if the link works).

https://photos.app.goo.gl/EwTg9xk3xw6Fdm5q6 (the not as scabby spots are new and will turn into the really bad looking ones)

https://photos.app.goo.gl/DTrBmFqVKn3QWrnk6 (close up of some of the really itchy ones)

https://photos.app.goo.gl/rXBKynD8YZrZtcHP8 (example of how some blister - I think they might all before he gets at them but not sure).

Thank you guys for any feedback!

-A concerned mom

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Welcome!  

Your baby might have DH, but it can not officially  be diagnosed without a skin punch biopsy.  Has he had the blood tests?  With a very strong family history, he should be tested.  While it takes a while for antibodies to develop in small children, he might already have enough to be tested.  

What about using your relative’s celiac savvy doctors?  Or find a celiac center or Ped GI who is celiac savvy.  Please start researching!  

Here are the blood tests.  Get them all.  Babies tend to do better on the DGP instead of the standard screening TTG.  If they are going to draw blood on your little one, let it be done once.  

http://www.cureceliacdisease.org/screening/

I am so sorry that you are getting the run around.  Keep advocating!  

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He has not been tested for anything celiac related yet. I just assumed he did not have it because that is what everyone thought, and he is so young. It wasnt until my aunt came down to visit and brought it up that I started thinking about the potential for celiac again(she is the only one in my family that had the rash).

All my family who has celiac besides my mom live in different states, so using their doctors would be impossible. My mom who lives here (Houston) had a very hard time finding a doctor but just went straight to an endoscopy center to get tested with a guy who knew what it looked like. I just dont want to go straight to having him put under.

Ive considered calling my pediatrician and asking them to just do the tests. They are very nice but they also refered me to a dermatologist because they were out of options to figure out what it was, so I don't know if they would check just because I say to.

Did the pictures link work?

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Yes, the photo link worked.  Again, DH is not diagnosed visually because it resembles so many other rashes.  

Is it possible to get an appointment at the celiac center at Texas Children in Houston?  I do not know your insurance, but it might be possible to pay for a visit (cash) but get tests, etc. via your in-network insurance.  It would be worth a call.  

https://www.texaschildrens.org/departments/celiac-disease-clinic

I  do not understand why they think he is too young to develop celiac disease.

https://www.beyondceliac.org/celiac-disease/symptoms/children/

https://celiac.org/about-celiac-disease/celiac-disease-in-children/

Just because he may be meeting all his growth markers, does not mean he can not develop celiac disease.  Not all celiac babies are malnourished.  That is an old school way of thinking.  There are skinny celiacs and fat celiacs and those with diarrhea or constipation.  Those with DH and those without.  

So, consider getting to a celiac center or work with your PED by sharing data.  Be nice.  People in white coats do deserve some respect, but they can make mistakes and are human.  Consider documenting via a letter.  Nothing a potential lawsuit for a doctor to react.  They do not want to be negligent.  Be nice!

Anyone, anyone in your family is at risk of developing celiac disease at ANY age.  All first-degree relative should be tested regardless of symptoms.  

My doctor and my extended family doctors have never hesitated in testing for celiac disease when I have  a firm diagnosis (I provided a letter to my family members to share with their doctors).  My kid just was retested (awaiting results).  There was no hesitation at all.  They were following recommended published guidelines.  

https://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-14-36

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Hi Mom, I am so sorry you're getting the run around. Yes, the links worked for me too & that poor little thing! Cyclinglady gave you excellent advice. I really can't add anything to it but everything she says is right on. Keep advocating! 

Read this:

https://www.sjsreview.com/8752/features/sophomore-establishes-celiac-support-group/

I found how you can contact her. GenerationGF.Houston@gluten.org

Here's the web page. Scroll down to the TX groups.

https://gluten.org/kids/kids-membership/generation-gluten-free-groups/

I figure she can at least direct you to the doc who diagnosed her.

Please let us know how things progress. 

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