Not Sure Where To Post. Need Advice.

[KayLynn52]

I'm not sure exactly what all details to include. It's hard to leave out details, so sorry for being so long.

My daughter is 17 months old. At 13 months old(January), she started getting rash spots all over her body. her inner thighs were bright red and blotchy. Took her to the ER, they told us it was an allergic reaction and sent us home. The next morning she woke up with half of her face swollen. By the time we got her to her pedi, she had swollen spots all over her body. They gave her a steroid shot and Benedryl and sent us home. By the time we got home, her eyes were swollen. Things got better before bed. The next morning when she woke, her ears, hands, feet, eyes, lips, and face were swollen and red. Hot to the touch. Took her to the ER, they admitted us and discharged the following day and said it was a virus. After a couple days, this stopped happening. About a month later, she got a small spot on her face, much like how her swelling incident started. She had food allergy testing done and they all came back negative, they told me you can't test for gluten intolerance and that it's rare. (LOL!) The spot started to get worse and eventually started to spread. It now is at least 5 times larger than it was when it started. No matter what we try, nothing at all helps her. She has some days that are worse than others. A couple weeks ago, she had the same rash from her neck down to above her diaper line. On her 'bad' rash days, she's fussy and clingy- you can tell she doesn't feel well. I pushed for blood work and her 'Immunoglobulin A Qn, Serum' levels came back as LOW. The doctor doesn't seem to be concerned (as she isn't much concerned about anything) but I'm pushing for answers. Normal for her age are levels between 20-100. My daughters levels are 6. What does this mean? What do I do? DO I need to ask for more testing? Help! Any advice and insight would be much appreciated. There was another test on the labs that checked for Celiac and it came back as negative, but does that mean we are out of the waters on this? My sweet beautiful daughter has had this terrible UGLY rash for over two months now and has some really bad days and we aren't getting any answers. We are being referred to an infectious disease doctor, so that might bring up some results, too.

[kareng]

Could you post the Celiac tests full names, results and normal ranges?

[mommida]

Has your child had a fever with the "?viral?" infection?

Can you just do a quick check of the tongue? Finger nails? any horizontal grooves or white lines?

Would you feel comfortable posting a picture of the rash? People who have DH would be able to tell you if that is similar to theirs.

(My son recently had 5th disease when he was 12 and no doctor correctly diagnosed it. (( the doctor started freaking me out that it was West Nile.)) He seemed like he was sick all last summer. The rash lasted for weeks, but finally made sense of the illness once it appeared.)

[KayLynn52]

I'm not sure which tests are for Celiac, to be quite honest. This stuff is all new to me. I've pushed for blood tests for months now and just got these done over a week ago.

Here are the ones that show as either high or low flags on the lab work or that may be helpful.

BUN 19 HIGH (Normal range would be 5-18)

BUN/Creatinine Ratio 73 HIGH (Normal range 9-25)

Celiac Ped Screen w Reflex

t-Transglutaminase (tTG) IgA <2 (Normal range 0-3)

Immunoglobulin A Qn, Serum 6 LOW (Normal range 20-100)

t-Transglutaminase (tTG) IgG 5 (Normal 0-5)

Also, she does have to small horizontal white lines on two of her fingernails. There are two white marks on her tongue, one on the left and one on the right. Those have been there for a month or more, now that I actually looked for them today. I remember seeing them a month or more ago and thinking maybe she bite her tongue. I will post a few pictures of the rash.

[Jestgar]

I'm not sure which tests are for Celiac, to be quite honest.

Celiac Ped Screen w Reflex

t-Transglutaminase (tTG) IgA <2 (Normal range 0-3)

Immunoglobulin A Qn, Serum 6 LOW (Normal range 20-100)

t-Transglutaminase (tTG) IgG 5 (Normal 0-5)

She has almost no IgA (middle test), so all IgA based tests are invalid. Her IgG test (last one) is on the high end of normal. Both of these tests are suggestive of celiac disease.

[KayLynn52]

I was wanting to know what you were referring to as DH? Sorry, I'm not with the lingo yet!

[Jestgar]

I was wanting to know what you were referring to as DH? Sorry, I'm not with the lingo yet!

dermatitis herpetiformis

It's a skin rash associated with celiac disease.

[KayLynn52]

You said she would need more lgG testing, could you please tell me specifically what those are? I will write them down and take them to the doctor and request them. I am sad to say that her doctor has a huge patient load and she doesn't seem to be on top of things, I've had to ask and pretty much demand every test she's done. I'd rather stick with this pedi until we get answers or some kind of leads, since she's been there through all of this.

I forgot to answer the question about her swelling incident that they diagnosed as viral exanthem. No, she did not have any fevers with that. During that 4 day period, I took pictures of just about everything and documented tons. I had a gut feeling that no matter what was wrong with my child, that I'd need those pictures to dig for answers.

Just a little more info that may or may not be helpful. My daughter is on Lactaid milk and we limit any other dairy. She has a small amount of greek yogurt and cheese just about daily, but we really limit it because we've found it doesn't do well for her system. She has not gotten any vaccinations since either 6 or 9 months. Once she started having this issues, I started to refuse vaccinations until we figured out what was going on.

The first image is from a couple weeks ago, the other is from yesterday. As I said, it started off as one small spot and has turned in to this.

http://i1142.photobucket.com/albums/n615/TWOplusTWOmakesFOUR/May%205th%202012/103_4428.webp

http://i1142.photobucket.com/albums/n615/TWOplusTWOmakesFOUR/May%205th%202012/103_4584.webp

[Jestgar]

Poor Baby! :(

I don't know anything about dh, but there's an informative thread: dh. Maybe it will help while you're waiting for someone more knowledgeable to post.

[Cara in Boston]

You may need a new doctor. The fact that they told you they can't test for gluten intolerance and that it is rare is a big red flag.

My son (diagnosed at age 5) never got the skin rash (dh) - he never really had any of the "classic" symptoms but now, a year later, if he accidently gets "glutened" he develops a red, raw ring around his mouth. Looks like chapped lips (extreme) but it is sudden and lasts for a week or two. Looks similar to your daughter - red and raw. His other symptoms (that we never noticed until they were gone after going gluten-free: dark circles under his eyes, frequent nose bleeds, poor sleeper, eczema, moody. The thing that brought us to the doctor was an abrupt change in behavior (tantrums, easily frustrated, overly dramatic meltdowns). Our pediatrician was astute enough to at least consider the possibility that it was a food sensitivity (even though he never had a single GI symptom) and ran the tests. All his IgA tests were negative (and he produced enough, so it was weird) but his IgG tests were high. He was found to have extensive damage when they did the endoscopy.

She needs more blood tests - not sure which ones exactly (someone else will chime in hopefully). Don't stop looking until you are satisfied with the answers. Our first GI said my son could not have celiac disease because he was a healthy size and never had any bathroom issues. When he couldn't explain the elevated IgG tests, we found a new doctor.

Cara

[KayLynn52]

Poor Baby! :(

I don't know anything about dh, but there's an informative thread: dh. Maybe it will help while you're waiting for someone more knowledgeable to post.

What lgG tests do I need to specifically ask for?

[KayLynn52]

You may need a new doctor. The fact that they told you they can't test for gluten intolerance and that it is rare is a big red flag.

My son (diagnosed at age 5) never got the skin rash (dh) - he never really had any of the "classic" symptoms but now, a year later, if he accidently gets "glutened" he develops a red, raw ring around his mouth. Looks like chapped lips (extreme) but it is sudden and lasts for a week or two. Looks similar to your daughter - red and raw. His other symptoms (that we never noticed until they were gone after going gluten-free: dark circles under his eyes, frequent nose bleeds, poor sleeper, eczema, moody. The thing that brought us to the doctor was an abrupt change in behavior (tantrums, easily frustrated, overly dramatic meltdowns). Our pediatrician was astute enough to at least consider the possibility that it was a food sensitivity (even though he never had a single GI symptom) and ran the tests. All his IgA tests were negative (and he produced enough, so it was weird) but his IgG tests were high. He was found to have extensive damage when they did the endoscopy.

She needs more blood tests - not sure which ones exactly (someone else will chime in hopefully). Don't stop looking until you are satisfied with the answers. Our first GI said my son could not have celiac disease because he was a healthy size and never had any bathroom issues. When he couldn't explain the elevated IgG tests, we found a new doctor.

Cara

Thank you Cara. I am on the route to that, but I really want to stick it out with her until she refers me to the infectious disease doctor. I figure they'll be more willing to help. She also knows all of our history, so it's easy for me to talk to her about it. Imagine taking tons of pictures and notepads to a new doctor and explaining everything all over. Don't get me wrong, I can and will do that if need be, but since she's willing to do testing once I ask for specific things and keep on her about it, I'm sticking it out. I have time invested in this and she's helping at this point. I'm afraid of going to a new doctor and they brush it off and then I'm at square one again. I will NOT stop until I get answers and I will not take no for an answer. I was chosen as her mother to advocate for her and I will do just that. I have stayed up many nights researching and looking for things that might solve this mystery. Also, she had circles under her eyes, not severe, but I notice it. She's also very fair complected, so that could be the reason why too.

[KayLynn52]

Has your child had a fever with the "?viral?" infection?

Can you just do a quick check of the tongue? Finger nails? any horizontal grooves or white lines?

Would you feel comfortable posting a picture of the rash? People who have DH would be able to tell you if that is similar to theirs.

(My son recently had 5th disease when he was 12 and no doctor correctly diagnosed it. (( the doctor started freaking me out that it was West Nile.)) He seemed like he was sick all last summer. The rash lasted for weeks, but finally made sense of the illness once it appeared.)

Didn't realize I could reply to your post. I posted more info in the other comments. Thanks for your help.

[pricklypear1971]

What lgG tests do I need to specifically ask for?

Tests: Open Original Shared Link

As far as the rash it could be DH - the blisters degrade quickly sometimes leaving that "burned" look. You can biopsy for DH, you need a good dermatologist who has successfully done it before. It is a punch biopsy - and it would be on her face - preferably two samples. Since she is showing indications through blood work (this indicating intestinal damage) I'd go the endoscopy route first instead of skin on her face.

You need a good pediatric gastroenterologist to do a Celiac biopsy. Advocate for apx. 10 samples to be taken. Do not go gluten-free until after the endoscopy.

[KayLynn52]

Tests: Open Original Shared Link

As far as the rash it could be DH - the blisters degrade quickly sometimes leaving that "burned" look. You can biopsy for DH, you need a good dermatologist who has successfully done it before. It is a punch biopsy - and it would be on her face - preferably two samples. Since she is showing indications through blood work (this indicating intestinal damage) I'd go the endoscopy route first instead of skin on her face.

You need a good pediatric gastroenterologist to do a Celiac biopsy. Advocate for apx. 10 samples to be taken. Do not go gluten-free until after the endoscopy.

So get the blood testing done first? Or should I just ask her regular pedi to refer me to a pediatric gastroenterologist and let them take care of all of it from there? What exactly do they do for the Celaic biopsy and the endoscopy? I can also contact her dermatologist and ask questions on if they've dealt with this type of thing before. Surely they have being as we are in a good sized city and they area at Children's.

[Jestgar]

So get the blood testing done first? Or should I just ask her regular pedi to refer me to a pediatric gastroenterologist and let them take care of all of it from there? What exactly do they do for the Celaic biopsy and the endoscopy? I can also contact her dermatologist and ask questions on if they've dealt with this type of thing before. Surely they have being as we are in a good sized city and they area at Children's.

I would do all of the above. Some people find it takes a long time to see a GI, so if you get the referral AND ask for the blood test, you're covering your bases. Also contact the derm. celiac disease in kids can be hard to diagnose, and the more docs you have looking for you, the better your chances for a diagnosis.

[pricklypear1971]

So get the blood testing done first? Or should I just ask her regular pedi to refer me to a pediatric gastroenterologist and let them take care of all of it from there? What exactly do they do for the Celaic biopsy and the endoscopy? I can also contact her dermatologist and ask questions on if they've dealt with this type of thing before. Surely they have being as we are in a good sized city and they area at Children's.

I would get all blood testing done first since you can get the doc to do it. Take that to the derm and GI.

Open Original Shared Link

Open Original Shared Link

Personally, I think your better bet is the gi route. Her rash isn't "classic" so the derm may turn you down. I see how it could be DH (is circular and a blister is healing) but not all Derms see that. But with the accompanying blood work you have an excellent case.

[Takala]

Hey,

DH, aka Dermatis Herpetiformus, is diagnosed via a skin biopsy taken NEXT TO, not directly on, an active lesion.

Open Original Shared Link

A positive biopsy is considered a positive diagnosis of celiac disease.

Very fair complected (light skin) is a typical sign of carrying the celiac genes. In family portraits, we tend to be the ones glowing ethereally, compared to the others.

It is much more difficult to get a positive blood work and endoscopy biopsy of the small intestine on a very young child because of their immune systems (and they tend to miss taking enough samples in the correct places, as the disease is patchy in the intestines, just like it is patchy on a person's skin).

If her IgA (immunoglobulin A ) is low, then the rest of the celiac panel blood tests will tend to be funked. See Comment Above by Jestgar. Doctor should be concerned that this can skew the celiac blood test results.

Some gastro doctors will not give the "celiac seal of approval official diagnosis

[mommida]

I see other posters have jumped in to answer questions. (I should have told you how wonderful everyone is here!)

The white lines of the finger nails are called Muehrcke's lines. Definately a sign of significant illness from Jan. Working with an infectious disease doctor isn't such a bad idea. Now you are stuck with sorting out the details of what symptom was from the mystery illness and what are the Celiac or DH symptoms. Add to that the possiblity this illness triggered celiac disease or DH.

I think you may run into some resistance because young children have to run through so many rash producing illnesses. So be persistant.

[KayLynn52]

I see other posters have jumped in to answer questions. (I should have told you how wonderful everyone is here!)

The white lines of the finger nails are called Muehrcke's lines. Definately a sign of significant illness from Jan. Working with an infectious disease doctor isn't such a bad idea. Now you are stuck with sorting out the details of what symptom was from the mystery illness and what are the Celiac or DH symptoms. Add to that the possiblity this illness triggered celiac disease or DH.

I think you may run into some resistance because young children have to run through so many rash producing illnesses. So be persistant.

Resistance is fine. Coming from someone that has been told no many times and looked at like a complete idiot. I WILL get answers. I will find someone to help me. Just spoke with her pedi and she said the infectious disease doctor can see us on June 7th. In the meantime, I'll be contacting our dermatologist and will tell them I want to see the gastroenterologist as well. Everyone here is great. I appreciate it more than I'd ever be able to express with words. I will keep all of this info in a folder and bring it with me to any and every doctor that we see. If I have more questions, I'll def post them. Are there and other signs or symptoms that could be caused by celiacs?

[KayLynn52]

Would this be okay to repost on the children forum as different people probably read that? I'd really like to see if anyone has a similar incident to ours.

[mommida]

My daughter just had a weird virus(?) this January too. One day she was complaining of sore throat no fever, next day no voice 97 degrees (not really considered a fever), by day 4 full blown pnemonia! then the freaky rash started. little squiggly lines under her skin like blood vessels. Then the rash went to litle blotches. It did not go into "puss points", but the little splotches were so close together it looked like her cheeks were painted circles on her cheeks.

Never got a full diagnoses as to what the illness was. She seems to have made a full recovery.

[Jestgar]

Please don't cross-post, but if you want, we can move your thread to the children's section.

[KayLynn52]

Please don't cross-post, but if you want, we can move your thread to the children's section.

I'm glad I asked first, then If you wouldn't mind, could you please move it over there? Thanks so much!

[Jestgar]

I'm glad I asked first, then If you wouldn't mind, could you please move it over there? Thanks so much!