Question about testing for celiac disease

[Laurie]

I took my dd (14) to the pediatrician yesterday for her check up. I also wanted the dr. to take a look at her back. Her skin is intensely itchy, and there are small white bumps as well as places where she's scratched herself bloody. The doctor said that she didn't know what it is and to see a dermatologist.

Tonight, I found pictures on a dermatology website that look exactly like my dd's back...dermatitis herpetiformis.

 

My dd has also had digestive problems for years. She has been tested twice for celiac and both times we were told that she didn't have it.

 

Can you test negative for celiac (blood test) and still have it? :confused:

[Misty]

Can you test negative for celiac (blood test) and still have it? :confused:

 

YES! My mother has full blown celiac disease and dermatitis herpetiformis and she tested negative for celiac. Do an elimination diet ASAP, but keep in mind it takes MONTHS for gluten to leave the system and for DH to clear up and heal. So don't expect the DH to go away soon after going GF. Be patient!

 

They can take a biopsy from the DH and test it for IgA antibodies to confirm that it is DH. If it is, then she definitely needs to be gluten free.. That is the only treatment for DH. Have your dd cut iodized salt from her diet as the DH cannot form without it. Have her use sea salt instead.

 

Celiac disease testing often shows false negatives. The elimination diet remains the gold standard.

[Lang Syne Boardie]

Yes, you can have a negative celiac panel and still have dermatitis herpetiformis.

 

The testing for DH is straightforward, and needs to be done before self-starting a gluten-free diet.

 

The dermatologist will be familiar with this. Get an appointment right away, if possible, while the rash is still obvious. It will be easier to diagnose.

 

I've lived with DH. It is a nightmare. :grouphug:

 

If your dd does have it, remember that she'll need GF toiletries, cleaners, etc. as well as a GF diet.

[Mom in High Heels]

So, Celiac comes with a rash? Interesting. Han Solo developed eczema shorty after I started putting whole wheat cereal in his bottle before bed. The ped (the one we don't like-his regular ped was on vacation) said that a wheat sensitivity and Celiac would not show up as a rash. She gave us some cream for it, but I still cut the whole wheat cereal and switched back to brown rice cereal. The rash cleared up almost completely. I went back to the whole wheat for a few days and the eczema came back. To me that indicates at least a sensitivity. We see HIS ped in a few weeks for his 6 month appt (I can't believe he's almost 6 months!) and I'm going to discuss it with him.

[gracesteacher]

The other standard is for a gi biospy but under 10 not always accurate and if you don't. Have a wheat heavy diet it won't show much damage to the gi

Don't do the elimination diet till all is gone

 

Wheat allergy and Celiac are different. I have Celiac no rashes my daughter has wheat allergy and gets a rash

[Mom in High Heels]

 

Wheat allergy and Celiac are different. I have Celiac no rashes my daughter has wheat allergy and gets a rash

 

Thanks for this. I googled it but came up with a million different things. I

guess I'll discuss it with his ped when we go next month.

[Mama Geek]

The allergy and Celiac are different, but the rash can be associated with Celiac as well. My old boss had a rash and was diagnosed by a dermatologist with it. He initially said that he didn't have the stomach problems, but it wasn't long after being GF that he told me his stomach felt a lot better as well.

[Slipper]

My daughter has Celiac (diagnosed through blood work and biopsy and positive response to diet) and has horrible digestive issues when she eats gluten. My step-mother also has Celiac and breaks out in a rash (but no digestive issues).

 

Celiac is an auto-immune disorder and not an allergy. She tested negative to being allergic to wheat.

 

Allergies can cause blistery skin as well.

 

If you've already tested negative through blood/biopsy then try an elimination diet. After a few weeks of being off of all gluten, deliberately ingest and see if the bumps come back. :) If you haven't had allergy testing done yet, that would also be helpful. If your daughter has ongoing digestion problems, ask for a referral to a gastroenterologist. He may be able to help.

 

All the best to you :)

[Laurie]

 

They can take a biopsy from the DH and test it for IgA antibodies to confirm that it is DH. If it is, then she definitely needs to be gluten free.. That is the only treatment for DH. Have your dd cut iodized salt from her diet as the DH cannot form without it. Have her use sea salt instead.

 

Celiac disease testing often shows false negatives. The elimination diet remains the gold standard.

 

Thanks so much for this info. I hope your mother is feeling better now.

 

I'm calling the dermatologist as soon as the office opens this morning!

[Jaz]

My dh has Celiac and gets rashes too. I highly recommend you try an elimination diet for your dd. :grouphug:

[Laurie]

 

If your dd does have it, remember that she'll need GF toiletries, cleaners, etc. as well as a GF diet.

 

Thanks for your help.

I wouldn't have thought about things like toiletries. We're always sent home with samples for things like aquaphor for her itchy skin and it's no wonder that the creams, etc. don't help.

[Laurie]

So, Celiac comes with a rash? Interesting. Han Solo developed eczema shorty after I started putting whole wheat cereal in his bottle before bed. The ped (the one we don't like-his regular ped was on vacation) said that a wheat sensitivity and Celiac would not show up as a rash. She gave us some cream for it, but I still cut the whole wheat cereal and switched back to brown rice cereal. The rash cleared up almost completely. I went back to the whole wheat for a few days and the eczema came back. To me that indicates at least a sensitivity. We see HIS ped in a few weeks for his 6 month appt (I can't believe he's almost 6 months!) and I'm going to discuss it with him.

 

After googling "white bumps on skin" last night, I ended up at a website called dermnet (dot) com with photos of dermatitis herpetiformis. There are many photos (including some bare backsides in case you don't want kids around the computer) showing this rash. Many of the rashes looked redder/worse than what I see on my dd, but then I saw some upper back photos that look exactly like her back.

[Laurie]

The other standard is for a gi biospy but under 10 not always accurate and if you don't. Have a wheat heavy diet it won't show much damage to the gi

Don't do the elimination diet till all is gone

 

Wheat allergy and Celiac are different. I have Celiac no rashes my daughter has wheat allergy and gets a rash

 

Thank you.

My dd saw an allergy doctor many years ago because of her digestive problems but he found no allergies at that time.

[Misty]

You CAN have eczema as a response to a gluten.. But that doesn't mean you have a wheat allergy. It usuallly means you have a gluten sensitivity or Celiac.

 

There are different ways to be sensitive to gluten/wheat.

 

~IgE antibody response is a wheat allergy. This would be an immediate onset and could include rash, hives, trouble breathing, etc.. Think anaphylaxis!

 

~IgA antibody response would be Celiac disease. However, some Celiacs are IgA deficient so we can't depend on this test alone. The most common presentation would be bowel issues, but not all Celiacs have bowel issues. Eczema, psoriasis, joint and muscle pain, migraines, fibromyalgia, dermatitis herpetiformis, irritable bowel syndrome, Crohn's Disease, constipation, brain fog, anxiety, depression, degenerative diseases (osteoporosis, alzheimer's, degenerative disk disease), other autoimmune diseases (diabetes, arthritis, liver disease, vetiligo, etc.), malabsorption issues, nutrient deficiency, short stature, bad teeth, hyperactivity in kids, moodiness, underweight, lactose intolerant, neurological issues.. These are common symptoms of Celiac disease. NO ONE has ALL of these symptoms. These are just possible ones.

 

~IgG antibody response is usually a non-celiac gluten sensitivity. The symptoms can be more delayed (2 to 3 days). If these are elevated on your test, then you probably have a gluten issue.. Even if your doctor says you don't. Symptoms would be similar to those above only maybe not quite as severe or obvious. This is the most undiagnosed type of gluten sensitivity.

 

For more info on the dangers of gluten, read Gluten: What You Don't Know Might Kill You

Edited September 15, 2011 by Misty

[Mom-ninja.]

:iagree: with what Misty said. Man, I've learned a lot about celiac this past month since being diagnosed!

 

My oldest ds has a wheat allergy (igE) and gets a stomach ache, diarrhea, rash, stuffy nose, and constant sneezing when he eats wheat. He does not have celiac.

 

I do have celiac but I do not have a wheat allergy. :001_smile:

[Laurie]

I just wanted to say thank you to everyone for your responses. My dd has an appointment scheduled with a dermatologist next week, and I hope her rash can be tested so she won't need anything more invasive.

[texasmama]

Yes, you can. The blood tests are not 100% accurate. It would be very worthwhile to start your dd on a completely gluten free trial and see if her symptoms go away. Also, if you want a definitive diagnosis of celiac disease, she needs to have a biopsy of her small intestine during an upper endoscopy. That is the "gold standard" for diagnosis. That said, I have three kids gluten free based on Enterolab stool testing.

[Mom-ninja.]

I just wanted to say thank you to everyone for your responses. My dd has an appointment scheduled with a dermatologist next week, and I hope her rash can be tested so she won't need anything more invasive.

 

Good luck. Just make sure she continues eating gluten until then. I hope you get some answers.

 

I really like Gluten Free Living for Dummies by Danna Korn and The G-free Diet by Elisabeth Hasselback.

[texasmama]

A diagnosis with DH is a pretty definitive diagnosis of celiac disease, as I understand. Most people with celiac or gluten sensitivity don't have DH, but it may be helpful in diagnosing that your dd has it, if that is indeed what it is.

 

Eczema is not uncommon as a result of food sensitivities in general. Eczema is essentially an immune reaction. I don't have celiac disease but went gluten free when my kids did about four years ago. The small but irritating patch of eczema on my leg went away after I stopped eating gluten. I assume I have a low level sensitivity. The best way to avoid full blown celiac disease is to avoid eating gluten so that is what I do. It's also supportive of my kids who are gluten free.

[mommymilkies]

This is very informative. My dd's IgG was over 100 but her IgA was only 5 when they tested her for Celiacs. But she has profound hypothyroidism (Hashimotos), and digestive issues. Would it be worth going to an allergist or GI doc?

[Mom-ninja.]

This is very informative. My dd's IgG was over 100 but her IgA was only 5 when they tested her for Celiacs. But she has profound hypothyroidism (Hashimotos), and digestive issues. Would it be worth going to an allergist or GI doc?

 

A second opinion won't hurt. Gluten sensitivity and celiac cause different responses in the body (antibody wise) but both can lead to health problems. Both conditions call for a g-free diet.