Non-stop Itching / Skin Crawling, No Rash

[Oneloved]

My 7-year-old has been complaining of constant itchiness and a skin crawling sensation for the past five months, but has no external rash or symptoms.   It seems to get worse at night, although that may be because it's more difficult to distract herself at bedtime.   We've tried switching shampoos and detergents, tepid baking soda baths followed by gluten-free lotion, re-reading the labels on anything that comes in contact with her skin, having her re-tested for more food sensitivities, and even checking the house for mold and cleaning all the air ducts.   Nothing has helped. Her pediatrician referred us to an allergist who had us try several different histamine blockers, but not even Benadryl brings relief, so it doesn't appear to be a histamine issue.  Blood tests show that her kidneys, liver and thyroid are all functioning normally.   Right now I'm trying having her go nitrate-free since that isn't included in food sensitivity tests, but so far no improvement.   Now they want to refer her to a dermatologist, but the appointment is a month away and she is MISERABLE.  I have no idea how to help her.  

[Victoria1234]

Have you tried an elimination diet to check for other food allergies? A lot of people on here can't have milk, soy, eggs, etc. and it's fairly easy to do the elimination diet to test at home.

[squirmingitch]

Is she celiac? If so, are you positive she's not getting any cross contamination from ANYWHERE? Do you have any pets? Does she get exposed to pets at friends/relatives homes? Do you have a pest control service?

[Oneloved]

4 hours ago, Victoria1234 said:

Have you tried an elimination diet to check for other food allergies? A lot of people on here can't have milk, soy, eggs, etc. and it's fairly easy to do the elimination diet to test at home.

I did have her get a second round of food sensitivity testing and it came back positive for dairy (casein) and almonds (we had been using almond milk).   Eliminating those has helped relieve her constipation, but has done nothing to alleviate the itching.  

[Oneloved]

2 hours ago, squirmingitch said:

Is she celiac? If so, are you positive she's not getting any cross contamination from ANYWHERE? Do you have any pets? Does she get exposed to pets at friends/relatives homes? Do you have a pest control service?

She's never had a formal celiac diagnosis, but all four of my girls have tested positive for gluten intolerance with the stool test, and have been gluten-free since they were toddlers.  She's my third child, and by far the most sensitive.   She's growth delayed and has had ongoing digestive issues.  We can't afford genetic testing and I'm not willing to put her through the misery of feeding her gluten for the blood test, or the invasive biopsy (which probably would show nothing anyway, since an endoscopy showed that we had succeeded in healing her gut).  

I have purged my kitchen countless time, combing over every label and banning all gluten.  My husband is the only one who eats wheat in our house and he has a separate cupboard and toaster out in the garage.  When she was five, we discovered that she was being glutened from the raw chicken I was buying, which had been injected with broth.  That discovery enabled her to finally gain enough control of her bowels to get out of diapers.   

Since eliminating dairy and almonds a few months ago, we've finally been able to forgo the Miralax and get her regular just with a daily dose of calcium/magnesium.  But this itching sensation is a new thing, and we just can't seem to nail down the cause.  We homeschool and we always bring our own gluten-free/df food wherever we go, so I can't figure out where she might be getting gluten, if that's the cause.  

We've had a dog for the past four years, but it's never been a problem before.  We do use Terminex, and flea treatments for the dog.  Since there are no bug bite marks or rashes, it doesn't appear to be fleas.   Her blood allergy testing came back normal, and none of the histamines our allergist recommended have worked, so he says it doesn't believe it's an allergy/histamine reaction. 

[squirmingitch]

I was thinking along the lines of a reaction to the poison used by the pest control people. Not a allergy to what they're using but a reaction to the poison itself OR the flea treatments used on the dog. This is where my mind was moving when I asked those questions. Just trying to brainstorm with you. 

Another thought...... what do you feed the dog? Is IT gluten free? Dogs lick, they lick themselves & they give their people kisses (which we LOVE getting but.....if they aren't gluten free kisses & they land on lips.......).

[squirmingitch]

Another thought

Have you considered taking her to a neurologist? itching can be coming from nerves & I mean the actual kind of nerves not the mental kind of nerves.

[Oneloved]

7 minutes ago, squirmingitch said:

I was thinking along the lines of a reaction to the poison used by the pest control people. Not a allergy to what they're using but a reaction to the poison itself OR the flea treatments used on the dog. This is where my mind was moving when I asked those questions. Just trying to brainstorm with you. 

Another thought...... what do you feed the dog? Is IT gluten free? Dogs lick, they lick themselves & they give their people kisses (which we LOVE getting but.....if they aren't gluten free kisses & they land on lips.......).

That's a good question.  I hadn't even thought about the dog food.   I'll have to double check that.  We did have the dog staying with my parents for two months (we're in the process of getting ready to sell), and the itching didn't stop while he was gone.  Hmm...

As for the pest control poison, it's all been outdoors, and the last treatment was 8 months ago (we can't afford quarterly service).  Since the itching started five months ago, it seems odd that there would be that long of a delay.  

[Oneloved]

9 minutes ago, squirmingitch said:

Another thought

Have you considered taking her to a neurologist? itching can be coming from nerves & I mean the actual kind of nerves not the mental kind of nerves.

Honestly, this is where my thinking is headed.  When the allergist said it didn't appear to be a histamine reaction, I asked the pediatrician if it might be neurological, but she wants us to try the dermatologist first.   I don't know why, when there are no outward rashes or symptoms, but that was her recommendation.  Unfortunately, it'll be a month before dermatology can see her, and who knows when or if they'll agree to a neurological assessment after that?  

They've already labeled it "idiosyncratic," which worries me.   Some doctors, when presented with a case they can't immediately explain, start suspecting the parent or child of being hypochondriac, of it being all in our heads, or faked, or worse.  

I'm doing whatever they recommend at because I want to rule out every possibility, but I suspect that they're just as confused as I am at this point, aimlessly searching for anything that might stick.  None of them are very familiar with celiac or gluten intolerance.   

[cyclinglady]

I would suggest the Fasano diet (mostly Whole Foods) for a few weeks.  She might be reacting to low levels of gluten in even gluten free products.  It might be worth running a celiac antibodies panel even though your household is gluten free.  I get itchiness without a rash if exposed to gluten.  

[Victoria1234]

1 hour ago, Oneloved said:

I did have her get a second round of food sensitivity testing and it came back positive for dairy (casein) and almonds (we had been using almond milk).   Eliminating those has helped relieve her constipation, but has done nothing to alleviate the itching.  

I actually meant the elimination diet, not more testing. This is where you eat foods that are very unlikely to be causing a reaction, such as just chicken and rice, for a period of time. Then you reintroduce a single food group such as dairy for a day and wait a few days to see if there is any reaction, feel free to google elimination diet for a much better description than mine. This is what I had to do to find out I was intolerant to dairy for about a year. It did not show up on an allergy test. Many people here have to do this as they are sensitive to many other foods.

[squirmingitch]

1 hour ago, cyclinglady said:

I would suggest the Fasano diet (mostly Whole Foods) for a few weeks.  She might be reacting to low levels of gluten in even gluten free products.  It might be worth running a celiac antibodies panel even though your household is gluten free.  I get itchiness without a rash if exposed to gluten.  

This is what I'm thinking too. I can vouch for this as it's what I had to do & it's made a world of difference. I have a totally gluten-free household but I was reacting to even gluten-free products. Here's a link:

https://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-13-40

I have dh, the celiac rash, and can tell you that long before I ever got rashes, I would get intensely itchy places that would drive me batty. I would look & there was nothing there, absolutely nothing, no redness, nothing. I used to ask my friends if that ever happened to them & they looked at me like I was out of my mind. For me, it was just small areas, not all over my body or say a whole arm or belly. Eventually, I began to get the blisters. BUT it may not be early dh for her; then again it could be if she's super sensitive.

I can't see the dermatologist doing anything but the regular old lotions & creams & steroids. Maybe I'm wrong.

[Oneloved]

1 hour ago, Victoria1234 said:

I actually meant the elimination diet, not more testing. This is where you eat foods that are very unlikely to be causing a reaction, such as just chicken and rice, for a period of time. Then you reintroduce a single food group such as dairy for a day and wait a few days to see if there is any reaction, feel free to google elimination diet for a much better description than mine. This is what I had to do to find out I was intolerant to dairy for about a year. It did not show up on an allergy test. Many people here have to do this as they are sensitive to many other foods.

Thank you for the suggestion.  The food sensitivity test we did is different from an allergy test.  It's an IGg blood panel, not a histamine panel, so it looks for a delayed immune response, not an allergic one.  My naturopath did it for us since our doctor poo-pooed it.  

[Oneloved]

6 hours ago, cyclinglady said:

I would suggest the Fasano diet (mostly Whole Foods) for a few weeks.  She might be reacting to low levels of gluten in even gluten free products.  It might be worth running a celiac antibodies panel even though your household is gluten free.  I get itchiness without a rash if exposed to gluten.  

The celiac antibodies panel is the blood test, correct?  I'm worried that if it comes back negative because there's not enough gluten in her system, it will go into her medical record that she tested negative for celiac, and that will make it much more difficult for me to get her the help she needs.  

Unfortunately, I'm dealing with a lot of doctors who are pretty clueless about gluten issues.  I had one pediatrician tell me that if the allergy test for wheat was negative, it was OK for her to eat it.  She thought the histamine test was "more accurate." Unreal!   Celiac and gluten intolerance are NOT food allergies!   I also had a gastroenterologist totally dismiss the IGg stool test, tell me that there was no such thing as "leaky gut," and that "tummy aches are normal for kids."  This was when my 5-year-old was still in diapers because she couldn't control her bowels, had serious growth delays, and was suffering from Cyclic Vomiting Syndrome.  I feel sorry for any celiac or gluten intolerant kids who come to him looking for answers.  

Where can I find more info about the Fasano diet?  I'm not familiar with that.  Right now we're going nitrate-free, trying to do organic for "the dirty dozen," and washing all produce in vinegar, but so far no difference. 

[Victoria1234]

6 minutes ago, Oneloved said:

it will go into her medical record that she tested negative for celiac, and that will make it much more difficult for me to get her the help she needs.

At some point you may want to get your kids formally diagnosed so they can get a 504 plan for school, and once they get old enough to get food out with friends they may start to rebel without it. They'll need it for college too and if they have to go overnite to the hospital.

thoughts on the enterolabs testing is a. mixed bag  here and on the internet. What symptoms were your children having before they went gluten-free? What are their symptoms when they get an accidental glutening?

I got itching where my dh had been when I had the smallest bit of cc my first year or two. No rash. 

call the dermatologist office every day asking if their is a cancellation. Squeaky wheel and all that. It must be miserable dealing with this day in and day out for her!

[squirmingitch]

I gave you the link for the Fasano diet in my earlier post.

Something else that struck me was you said her itching ramps up at night. Almost all of us with dh will tell you it ramps up at night.

[Mia17]

 I have the exact same thing happen to me when I'm very tired or stressed. It's the nerves overreacting.   There is no physical sign. I recommend you see a neurologist as soon as you can because these are the symptoms of some more serious issues.    You have done all you can on the diet front and more.  You are right for a dermatology condition there needs to be a physical manifestation. This is more than skin deep.   Nerves give off powerful signals, why your child is in so much discomfort.   I experienced it first hand, it's an awful sensation.   Nerves seem to act up at night more for some reason probably because if there is a condition they are more reactive when the person is tired.   Good luck.

Edited July 29, 2017 by Mia17
would like notification of replies

[Oneloved]

31 minutes ago, Victoria1234 said:

At some point you may want to get your kids formally diagnosed so they can get a 504 plan for school, and once they get old enough to get food out with friends they may start to rebel without it. They'll need it for college too and if they have to go overnite to the hospital.

thoughts on the enterolabs testing is a. mixed bag  here and on the internet. What symptoms were your children having before they went gluten-free? What are their symptoms when they get an accidental glutening?

I got itching where my dh had been when I had the smallest bit of cc my first year or two. No rash. 

call the dermatologist office every day asking if their is a cancellation. Squeaky wheel and all that. It must be miserable dealing with this day in and day out for her!

Yes, I need to get a formal diagnosis, especially for my 7-year-old, but I don't want to have to feed her gluten for the blood test.   She gets horribly constipated and it's difficult to keep her regular as it is.   I don't think our insurance will cover genetic testing , either.   An endoscopy showed that we healed her gut successfully, so a biopsy would be pointless (thank God).   Thankfully we homeschool so we don't need 504 plan right now. 

I first got suspicious when my second daughter's baby teeth started coming in with incomplete enamel.  She wasn't absorbing the nutrients she needed, and had to get a double root canal at 20 months.  Still, three of my children only get diarrhea when they cheat.  It's my third daughter, 7, who has had serious problems from the moment I weaned her, falling off the growth chart, wavering between constipation and uncontrollable diarrhea, skin and hair showing signs of malnutrition, developing Cyclic Vomiting Syndrome, and other issues.  

I agree I need to keep calling the dermatologist.  They told me it wasn't "emergent" so she had to wait for a regular appointment.  As if itching non-stop for five months is no big deal!  Soooo frustrating!  

 

[Oneloved]

34 minutes ago, squirmingitch said:

I gave you the link for the Fasano diet in my earlier post.

Something else that struck me was you said her itching ramps up at night. Almost all of us with dh will tell you it ramps up at night.

Yes, I saw that link, thank you.  The "Products allowed/disallowed" chart is helpful.  I was just hoping to find something that explained it in more laymen's terms, LOL.   

I had ruled out DH because there were no blisters or bumps, but it's interesting to hear that it can manifest without external signs.   

[Oneloved]

3 hours ago, Mia17 said:

 I have the exact same thing happen to me when I'm very tired or stressed. It's the nerves overreacting.   There is no physical sign. I recommend you see a neurologist as soon as you can because these are the symptoms of some more serious issues.    You have done all you can on the diet front and more.  You are right for a dermatology condition there needs to be a physical manifestation. This is more than skin deep.   Nerves give off powerful signals, why your child is in so much discomfort.   I experienced it first hand, it's an awful sensation.   Nerves seem to act up at night more for some reason probably because if there is a condition they are more reactive when the person is tired.   Good luck.

Ugh, that's what I'm afraid of.  If this is neurological, I don't want permanent nerve damage to be done while the doctors keep grasping at straws.  But I have to tread lightly since they've already labeled it "idiosyncratic."   I want them to work with us, not dismiss me as some sort of over-reactive mama who reads too much Web M.D.   

[cyclinglady]

Well, the IgG test is not very accurate and is not accepted in the traditional medical community for a variety of reasons. You could just view the results as one of the tools in helping to identify some food intolerances.  Best to keep a food journal and test as Victoria suggested.  

Leaky gut is real per Dr. Fasano.  They just do not know how it works, but are looking at zonulin as a possible culprit.  

Your child is young.  I would seriously ask you to consider a gluten challenge under the care of a Ped GI who is celiac savvy.  With an endoscopy, it only requires a two week challenge.    You are always going to run into negative feedback without a formal diagnosis.  Fine for adults (my hubby has been gluten-free for 16 years without a diagnosis), but he does not require accommodations for his diet. 

Can you not order a celiac antibodies test online?  Can't that NP order it?  

My kid was tested three years ago.  If my kid needs to get retested, I do not think my doctor will talk me out of it,  will insurance pay?  Who knows?  But I would be willing to pay cash.  My doctor did not recommend the genetic test.  Even though some 30% of the population carries the genes, only a tiny few GI on  to develop celiac disease.  My doctor runs the entire group (which is huge).  He knows the ramifications of adding something into my kid's medical record (access to future medical, life insurance, etc) more than the average doctor.  

If you choose not to test, a super restricted gluten-free diet might be your best bet.  

[Oneloved]

29 minutes ago, cyclinglady said:

Your child is young.  I would seriously ask you to consider a gluten challenge under the care of a Ped GI who is celiac savvy.  With an endoscopy, it only requires a two week challenge.    You are always going to run into negative feedback without a formal diagnosis.  Fine for adults (my hubby has been gluten-free for 16 years without a diagnosis), but he does not require accommodations for his diet. 

Can you not order a celiac antibodies test online?  Can't that NP order it?  

I hate to admit it, but I think you're right.  We do need a formal diagnosis.  I just know that she'll be constipated with stomach cramps within a day, and I can't imagine torturing her like that for weeks.  Ugh.  There's GOT to be a better way! 

You can order a HLA genetic test online, but I haven't seen a home test for celiac antibodies.  

A recent blood panel showed that her neutrophils and overall white blood cell count was a little low, but they didn't seem concerned.  

[squirmingitch]

2 hours ago, Oneloved said:

Yes, I saw that link, thank you.  The "Products allowed/disallowed" chart is helpful.  I was just hoping to find something that explained it in more laymen's terms, LOL.   

I had ruled out DH because there were no blisters or bumps, but it's interesting to hear that it can manifest without external signs.   

Well basically, in layman's terms, the study concludes that some celiacs are so sensitive that they haven't healed even though they have been following a strict gluten-free diet. They aren't doing okay eating 20ppm or less therefore their body is reacting & staying in a state of autoimmune attack. As celiacs, we don't eat gluten but we know there are minutia in even the gluten-free foods we're eating. We live in a gluten filled world & things get cc'd, that's just a fact of life, even though that cc might be less than 5 ppm. Apparently, as the study shows, some people are continuing to react so Dr. Fasano developed a diet which eliminates all chance of any gluten possibility.

As to dh without any blisters or bumps..... I don't think docs would call it dh but I know for a fact, at least with me, that is how it began. Call it pre-dh, call it anything you want but it happened with me. When I did begin getting bumps & later, blisters, they began in those same areas where I had the intense "invisible" itchies.

I will still say it could be something neurological.

[Oneloved]

11 minutes ago, squirmingitch said:

As to dh without any blisters or bumps..... I don't think docs would call it dh but I know for a fact, at least with me, that is how it began. Call it pre-dh, call it anything you want but it happened with me. When I did begin getting bumps & later, blisters, they began in those same areas where I had the intense "invisible" itchies.

Is DH usually localized?  My daughter's symptoms are all over her body.  

[tessa25]

Quote

I hate to admit it, but I think you're right.  We do need a formal diagnosis.  I just know that she'll be constipated with stomach cramps within a day, and I can't imagine torturing her like that for weeks.  Ugh.  There's GOT to be a better way! 

There are foods that help with constipation. For instance, large portions of cooked zucchini help get things moving. Magnesium gets things moving (easy to go overboard on that one).