Allergies Negative...on To Gi

[wmramsel 0]

We had my daughter tested for allergies yesterday- various indoor/outdoor nasal allergies, then wheat, barley, oats, milk, eggs, and peanuts.  Everything came back negative.  I asked the allergist if there was any way that she could have those allergies and the tests came back negative and he said basically no.  He did tell us to be sure and get a referral from our pediatrician for a dermatologist asap next time she has an outbreak of what looks like DH.  

 

Our GI appointment is a week from today.  I'm not sure what to expect.

 

I almost feel disappointed- I wouldn't wish allergies on my child for anything, but she could grow out of allergies.  So I guess if I had to choose between the lesser of two evils, I'd choose the one she has a chance of growing out of.

[StephanieL 74]

 

I almost feel disappointed- I wouldn't wish allergies on my child for anything, but she could grow out of allergies.  So I guess if I had to choose between the lesser of two evils, I'd choose the one she has a chance of growing out of.

 

This statement is really really ignorant. Neither one is fun. While things may be outgrown, many allergies are not (specifically peanut which has a very high likelihood of cause anaphylaxis which can lead to death).  

 

I know you are searching for answers but to downplay one disease process over another when they aren't even in the same ballpark is really not cool. 

[wmramsel 0]

This statement is really really ignorant. Neither one is fun. While things may be outgrown, many allergies are not (specifically peanut which has a very high likelihood of cause anaphylaxis which can lead to death).  

 

I know you are searching for answers but to downplay one disease process over another when they aren't even in the same ballpark is really not cool. 

 

I know.  I know exactly what you are saying, and that is why I feel terrible about it.  I didn't really want to put words to it.  I'm not even really sure if that is the way to describe it, or if it is just disappointment that I'm not really much closer to anything definitive.  I'm not meaning to say that either one is "fun" and by no means did I ever say that.  Allergies ARE incredibly serious and nothing to mess with- the reactions are scary and I was incredibly worried that we would come out of the appointment with the need for an epi pen.  The idea that my child COULD some day out grow an allergy and not Celiac disease, though, is an easier thought to swallow- but just that small part of it.  In no way was the above meant to "downplay" anything.  I'm sorry that it seemed like that- but I disagree that it is ignorant.  I know what they entail- and the fact is that I said "lesser of two evils"- neither one is desirable, which I iterated.  Simply, a glimmer that maybe one day she wouldn't have to mess with it at all.  I don't know why any parent wouldn't want their child to not have to mess with a dietary restriction? 

[wmramsel 0]

This statement is really really ignorant. Neither one is fun. While things may be outgrown, many allergies are not (specifically peanut which has a very high likelihood of cause anaphylaxis which can lead to death).  

 

I know you are searching for answers but to downplay one disease process over another when they aren't even in the same ballpark is really not cool. 

 

Omgoodness- I just realized something, too.  I did NOT mean that I would rather her have allergies in general- that definitely warrants the above reaction!  I just meant the wheat- not the rest they tested for (peanut, milk, etc.)!  They just sort of did that as a precaution since her symptoms haven't been real definitive of anything.  I talked with the allergist specifically about a wheat/barley/oats allergy, and knew that it was one that she could grow out of before we ever had the tests done.  I knew going into the testing that we more than likely wouldn't need an epi pen (even though I worried about it), and that her reaction more than likely would never include anaphylaxis.  I'm sorry!  So when I said I was disappointed, I only meant that I would have rather her reactions be caused by a wheat allergy (something she could potentially grow out of, and wasn't immediately serious in reaction type) than Celiac.  Does that make any better sense?  I'm having a hard time explaining myself, I know.....

[StephanieL 74]

Ahhhh, yes That I totally get now!  An allergy to wheat (possibly outgrown) vs. Celiac (life long issue).  

 

Like I said, I know you just want answers!  It's so hard when we want to fix things for our kiddos and we can't figure it all out.  I don't think any parent wants any kid to have any medical condition!  

 

Again, I do hope the GI Dr. has some good info to help you figure things out!

[wmramsel 0]

Ahhhh, yes That I totally get now!  An allergy to wheat (possibly outgrown) vs. Celiac (life long issue).  

 

Like I said, I know you just want answers!  It's so hard when we want to fix things for our kiddos and we can't figure it all out.  I don't think any parent wants any kid to have any medical condition!  

 

Again, I do hope the GI Dr. has some good info to help you figure things out!

 

Exactly!  I re-read my first post and realized it wasn't clear after I had mentioned the other things she was tested for.  I'm really banking on the GI doctor- he has Celiac himself.  

The Allergist said that we should call the pediatrician as soon as she has another break out of the suspected DH so we can get a referral to a dermatologist right away.  Has anyone ever had the skin plug done?  That seems awful painful

[stanleymonkey 15]

It is possible to test negative to an allergen but be allergic. My eldest tested negative to milk, yet she had 1 drop of milk into anaphylactic shock! Skin prick testing and IgE blood testing are not 100% accurate.

I also get where you are coming from the allergies vs celiac disease. Our daughter outgrew her milk allergy, and it was such a relief, but knowing celiac is for life was so overwhelming at first, now, just like her milk allergy, it's part of life. Mi get frustrated when people don't get the seriousness of celiac versus an anaphylactic allergy, but it's just how things are.

Having a child who had anaphylactic allergies and now has celiac disease I completely understand where you are coming from, at least with even a mild allergy you can see what is going on, and usually it's pretty clear what is happening to them, but celiac disease is such a crap shoot when it comes to symptoms and diagnosis

[wmramsel 0]

Thank goodness hers is not anaphylactic.  At least not yet.  She did have coughing after we attempted the gluten allergy, but didn't seem to have trouble breathing.  Her symptoms are so all over the board- I mean she is in, what, the 10% of Celiac's who have predominantly skin issues?  IF she has Celiac, we call it that for simplicity sake instead of having to take a 20min mini lesson for everyone when it isn't necessary.  

I am incredibly worried about my in laws not taking it seriously since her allergy tests came back negative.  FIL already acts like gluten is the most difficult thing on the planet to understand (he isn't a dumb man, come on now) and my MIL acts like she doesn't know about it, even though several people have told her several times.  My Aunt-in-law who is my husband's biological Aunt (not married in) has Celiac, but hers are the more "traditional" GI symptoms.  As if Celiac has anything that is traditional.....But anyway, since my daughter doesn't have the symptoms like my hubby's aunt....it will be even harder to get my in laws to take it seriously.  It gives me serious anxiety even thinking of visiting them.  Luckily my brother and sister in law are great, and that is who we stay with.  

 

I can't imagine dealing with an anaphylactic allergy AND Celiac.....Oy.   I have read just enough about the allergy world (above and beyond what I learn just in course of conversation with people) to understand what I needed to know about a wheat/rye/barley allergy to be confident going into the allergist office.  I felt so overwhelmed, I just didn't want to look into it as far as I did Celiac if I didn't have to.  I specifically asked the allergist, who comes very well recommended, what the chances of a false negative were, and he said he was extremely confident in telling me that my daughter had no allergies.  I think it is as close to definitive as I am going to get.....

[stanleymonkey 15]

Is your allergist an immunologist too? Most ped allergists tend to be. If he is I would talk to him about celiac disease as well as the gastro. Our allergist/immunologist was annoyed that we were getting the brush off from our gastro and said based on her symptoms, and a rash wish she was 100% positive was DH, and her dramatic improvement gluten free, if we had been sent to her for celiac testing she would have given her the diagnosis on the spot, screw what the blood tests say.

[wmramsel 0]

Yes, he is also an immunologist.  He said the next step would be the gastro (for scope) and a dermatologist for official diagnosis of the DH.  Her rashes have basically healed since her reaction 3 weeks ago, and we have been back to gluten-free since, so there wasn't anything he could really go on as far as her rashes.  He did tell us from the get go that he didn't think that her symptoms were allergies.  The gastro we are going to has Celiac himself, so I'm hoping that he will be our ticket to an answer.  We'll see!  Thank you for all of the information!

[pricklypear1971 355]

You need to get into a dermatologist NOW, and discuss how testing will be done. You need to discuss how to communicate with the scheduling staff that the need is URGENT. I had to do this with my derm - he told me to call in to schedule as soon as I broke out, but the staff wouldn't do it...I had to ask for someone else at the office - it was a mess. The derm put a note in my file and all was ok after that...

Also, you need to know how the doc will biopsy, and what meds she should NOT be on (steroids). Some derms do NOT biopsy for dh correctly. Find out if yours will beforehand.

[wmramsel 0]

You need to get into a dermatologist NOW, and discuss how testing will be done. You need to discuss how to communicate with the scheduling staff that the need is URGENT. I had to do this with my derm - he told me to call in to schedule as soon as I broke out, but the staff wouldn't do it...I had to ask for someone else at the office - it was a mess. The derm put a note in my file and all was ok after that...

Also, you need to know how the doc will biopsy, and what meds she should NOT be on (steroids). Some derms do NOT biopsy for dh correctly. Find out if yours will beforehand.

 

 Ok, I'll call the pedi now.  Our pediatrician is really good, but I can definitely understand the need for the referral now and not later.  Especially since it took us 2-3 weeks to get in with the Allergist and Gastro.  

They should do a skin plug of one of the blisters, right?  I'll be sure to ask before hand how they do it.  We have been putting a steroid on her eczema, do the steroids affect the DH? Thank you for the insight!  

[stanleymonkey 15]

2 weeks to get in to an allergist? Wow my daughter had an anaphylactic reaction and it took us 4 months! I'd see as many specialists as you can , gastro, allergist and derm. Our gastro dismissed us as our daughter was didn't have the symptoms he expected, she was constipated and he was adamant that meant she had reflux!????? Our allergist on the other hand was a lot more educated on celiac disease, allergist can order the full celiac panel nd can request a derm to do a biopsy of a lesion and request endoscopes, they usually have someone they know who will do it rather thn a guessing game of who'll you get.

Going back to my allergist before my eldest starts kindergarden boy is she in for a shock when she sees how tall she is now!

Good luck

[wmramsel 0]

2 weeks to get in to an allergist? Wow my daughter had an anaphylactic reaction and it took us 4 months! I'd see as many specialists as you can , gastro, allergist and derm. Our gastro dismissed us as our daughter was didn't have the symptoms he expected, she was constipated and he was adamant that meant she had reflux!????? Our allergist on the other hand was a lot more educated on celiac disease, allergist can order the full celiac panel nd can request a derm to do a biopsy of a lesion and request endoscopes, they usually have someone they know who will do it rather thn a guessing game of who'll you get.

Going back to my allergist before my eldest starts kindergarden boy is she in for a shock when she sees how tall she is now!

Good luck

 

That is ridiculous!  I definitely didn't feel dismissed by the allergist, just that since we had the gastro appointment already, that the gastro would be the best person to treat her moving forward.  

 

I am worried about being passed around and landing on the "non celiac gluten intolerance" dx just because we can't do a gluten challenge w/Celiac blood work and her symptoms being mostly non-gastro unless she is having an acute reaction.  I think I'll push for the genetics test just to rule out Celiac if we can.  What ton to think about!

[pricklypear1971 355]

Ok, I'll call the pedi now. Our pediatrician is really good, but I can definitely understand the need for the referral now and not later. Especially since it took us 2-3 weeks to get in with the Allergist and Gastro.

They should do a skin plug of one of the blisters, right? I'll be sure to ask before hand how they do it. We have been putting a steroid on her eczema, do the steroids affect the DH? Thank you for the insight!

Read this about dh biopsy. No, it does not come from the lesion but from next to it. http://m.arupconsult.com/Topic_DermHerpetiformis.html

Stop using the steroids NOW. It can cause false negatives in serological and biopsy results.

[wmramsel 0]

Read this about dh biopsy. No, it does not come from the lesion but from next to it. http://m.arupconsult.com/Topic_DermHerpetiformis.html

Stop using the steroids NOW. It can cause false negatives in serological and biopsy results.

 

Oh dear.  Ok.  I didn't know that.  We have been using the 1% hydracortisone cream, and have recently used the prescription 2% hydracortisone cream for her.  We just got a prescription from the allergist, and my husband is going to pick it up today.  I didn't ask if it was a steroid, but will ask the pharmacist.  If I remember correctly it is called Dermatize? 

 

Thank you for the link, I had not come across it yet.  I have mostly been googling pictures of the DH and definitions of it.  

 

Thank you all so much for all the help and information!  I feel like you have cut days off of my research time!

[pricklypear1971 355]

Oh dear. Ok. I didn't know that. We have been using the 1% hydracortisone cream, and have recently used the prescription 2% hydracortisone cream for her. We just got a prescription from the allergist, and my husband is going to pick it up today. I didn't ask if it was a steroid, but will ask the pharmacist. If I remember correctly it is called Dermatize?

Thank you for the link, I had not come across it yet. I have mostly been googling pictures of the DH and definitions of it.

Thank you all so much for all the help and information! I feel like you have cut days off of my research time!

Google meds for classifications.

Dh is a b%$@#. No polite way to put it. And getting a positive biopsy is difficult. I wonder many times if its because steroids are handed out first, used, then the rash biopsied. I was personally on steroid injections, creams, and pills. Yeah.

[wmramsel 0]

Steroids don't work very well on what I classify as her DH rash.  It is blistery and nasty, itches her like crazy (she digs deep scratches into her skin where the lesions are), and is painful for her.  We end up putting anti-bacterial cream on the blisters to try to avoid an infection from her scratching, and because it is located on her bottom for the most part.  We usually end up using the hydracortisone cream at the same time because her eczema flares as well with the reactions.  Her gastro appointment is in a week, so we'll definitely stop using the steroids now.  

 

I got her some new lotion that, as far as I can tell, is gluten-free.  It is by Peter Rabbit Organics.  Their skin care line website is down for maintenance at the moment, but I emailed them regarding their manufacturing and testing processes.  Hopefully that will help with the eczema since it is healing at the moment.

[pricklypear1971 355]

Steroids don't work very well on what I classify as her DH rash. It is blistery and nasty, itches her like crazy (she digs deep scratches into her skin where the lesions are), and is painful for her. We end up putting anti-bacterial cream on the blisters to try to avoid an infection from her scratching, and because it is located on her bottom for the most part. We usually end up using the hydracortisone cream at the same time because her eczema flares as well with the reactions. Her gastro appointment is in a week, so we'll definitely stop using the steroids now.

I got her some new lotion that, as far as I can tell, is gluten-free. It is by Peter Rabbit Organics. Their skin care line website is down for maintenance at the moment, but I emailed them regarding their manufacturing and testing processes. Hopefully that will help with the eczema since it is healing at the moment.

Dh may be reduced by steroid creams, but usually it won't disappear.

You need to tell the gi about the steroids. S/he may pooh pooh the possible effect on serological testing, but I would not take chances. Steroids are used to put AI diseases into remission - and it is documented as a testing contradiction. I don't know of any studies showing how much, for how long, has an affect. Many here will say it takes a few months for steroids to clear the system. Again, I don't think anyone really knows.

I would try ice packs to reduce itching. Also, look on the dh board here for mention of a pain/ skin otc numbing gel for the sores. Many say it works.

My lotion if choice is Vanicream. Ice packs and Vanicream.

Be warned, discontinuing steroids will probably cause a rash flare. But what else can be done??? Just manage the rash and get into a derm ASAP.

You are keeping her on gluten for now, right? You need to keep her on gluten until testing is complete, or you can get a false negative.

I swear the testing for Celiac is inhumane.

[wmramsel 0]

No, she is off of gluten  She has been off of gluten since November 2012, and only had about 9 months of gluten containing foods before that due to severe vomiting before she was a year old.  She has only eaten gluten containing products from 14 months to 22 months of age.  I took her off gluten for the eczema not even knowing about Celiac.  We tried a gluten challenge to do the testing about 2 weeks ago and we ended up in the ER after her first meal with gluten in it.    

 

I just posted a pic of her rash on the DH board.  It is a mix of what I call her DH and eczema.  It is right before we headed to the ER.  

[pricklypear1971 355]

No, she is off of gluten She has been off of gluten since November 2012, and only had about 9 months of gluten containing foods before that due to severe vomiting before she was a year old. She has only eaten gluten containing products from 14 months to 22 months of age. I took her off gluten for the eczema not even knowing about Celiac. We tried a gluten challenge to do the testing about 2 weeks ago and we ended up in the ER after her first meal with gluten in it.

I just posted a pic of her rash on the DH board. It is a mix of what I call her DH and eczema. It is right before we headed to the ER.

Okay...you know she can't be accurately tested then, right? I'm not saying out her back on...just that she can't be accurately tested. Even for dh...

You can get a NCGI dx, but you can't know if she has celiac without being able to test antibodies/scope.

[wmramsel 0]

Yup.  I was hoping DH dx would be the kicker, but I was just reading some of your other posts and just read that it won't come back positive unless she is on gluten.  Dangit.  I want to do the genetics test to rule out Celiac if we can.  Otherwise it will be what the Dr's will dx her by symptoms.  We gave her 2 pieces of bread to start the gluten challenge, but then I read that just a cracker a day can be sufficient?  I don't know.  Her reactions seem to correspond with her exposure in intensity.  I.e. 2 pieces of bread = ER, but sitting in the high chair after her brother had cheerios in it and the  cheerios were cleaned out = just worsening of the rashes.  Idk.  I guess that is what I'll talk to the GI about!

[pricklypear1971 355]

Yup. I was hoping DH dx would be the kicker, but I was just reading some of your other posts and just read that it won't come back positive unless she is on gluten. Dangit. I want to do the genetics test to rule out Celiac if we can. Otherwise it will be what the Dr's will dx her by symptoms. We gave her 2 pieces of bread to start the gluten challenge, but then I read that just a cracker a day can be sufficient? I don't know. Her reactions seem to correspond with her exposure in intensity. I.e. 2 pieces of bread = ER, but sitting in the high chair after her brother had cheerios in it and the cheerios were cleaned out = just worsening of the rashes. Idk. I guess that is what I'll talk to the GI about!

What I would ask is if the Doc would write a letter stating she's gluten intolerant - for school, etc. because that's what you may NEED. If s/he will work with that, then you have a future with that Doc. If not, go elsewhere.

[wmramsel 0]

What I would ask is if the Doc would write a letter stating she's gluten intolerant - for school, etc. because that's what you may NEED. If s/he will work with that, then you have a future with that Doc. If not, go elsewhere.

 

I have no doubt that my pediatrician would right that.  She is fantastic.  She readily admitted that she didn't know a lot about Celiac, and (knowing me and how much I research) offered to refer me to whomever I wanted to take M (my daughter) to. The GI doc comes highly recommended as well- so I'm hoping for lots of info at our visit in a week.

[pricklypear1971 355]

I have no doubt that my pediatrician would right that. She is fantastic. She readily admitted that she didn't know a lot about Celiac, and (knowing me and how much I research) offered to refer me to whomever I wanted to take M (my daughter) to. The GI doc comes highly recommended as well- so I'm hoping for lots of info at our visit in a week.

I would ask about nutrient testing and AI disease monitoring - diabetes, thyroid, etc. that's important.