Help With Test Results

[dwhite42]

Well thats good to know it took 6 months to lower.  Perhaps I am being too optimistic!  Also sounds very much like my middle daughter with her vocabulary issues and slower processing!  My sister is terrible, once it was so bad that when we visited my nan in hospital I think the staff didn't want to let us in as they probably thought she had been drinking as she couldn't remember her name and then she got the wrong name. She has also introduced her husband with an entirely different name and her memory is so bad she has to write everything down.

 

Have done three weeks and feeling my brain fog lift, I have more energy and not the constant threat so far of a migraine, which is so nice.  On the plus side a few pounds have been lost and the belly has gone done.  Its a hard one to make! 

[dwhite42]

Well we went to the doctors today and confirmed that he seemed very related to gluten.  The next step he said would be for her to go on a gluten free diet.  As gluten was the problem that was how to deal with it.  I explained this was a serious condition which needed to be recognised by medical people and that needed to be on her record.  I explained that wasn't what could happen if she needed to be confirmed by biopsy.  Did not get a welcome response until I recommended that we should have private healthcare then he decided she could be referred to a dermatologist and gastro person.  Asked for him to test vitamins as I was concerned about some of the symptoms and he said no need as she could get it all done at the hospital.  

 

Called the private healthcare and they said as her symptoms were much related to her back issue and her MRI she had that they would not cover!  Am so fed up with it all.  Explained we went to the doctor regarding her skin and gastric symptoms not tingling.  Am now awaiting to see if they will accept the doctors note stating about her skin condition.  It feels like one step forward to steps back.  Am so fed up with the system.  So back to more waiting!

[squirmingitch]

Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Big SIGH. 

Banging head against a brick wall. I hope you have a hard head. 

Oooooooooooooooooooooooooooo I could chew nails!

 

You're in the UK right? As I understand it anyone who gets dx'd with celiac can get gluten free food by prescription or something like that. That would certainly help with expense. Stupid doc telling you to take her gluten-free with no testing. ARGHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

This is EXACTLY why so many celiacs are undiagnosed & will remain so. 

[dwhite42]

I know Squirming Itch.  Yes we are in the UK and its all about money,  I do wonder if thats also why they don't want to diagnose as it means free prescriptions!  I don't care about that to be honest, (although it would help with the cost of oats!)  I just want it on her medical records so that in future if she has issues it is medically recognised and that she is not just going on a "fad diet"  I don't want her to go gluten free, its really not fair as it will hit her hard when she goes back on it.  Our NHS is fantastic once you are diagnosed and if you have to have emergency care but to get anything done is just one jump of hoop into another!  

 

Must admit I came home and cried.  

[dwhite42]

He also gave her some antibiotic cream and some other cream to help the itching (steroid).  Should I use or not?  Not really wanting to use the steroid cream as it lessons the result but would antibiotic be ok?  I am thinking if we can't get it done via private healthcare we will see if we can pay ourselves to see a Consultant as that would speed up one part of the process. and then get put on the waiting list.     

[squirmingitch]

Yes, she really needs that dx for the record AND so one day when she's 25 or 30 she doesn't start doubting that she had a problem with gluten. With a dyed in the wool dx she will have no doubts & therefore not be tempted to cheat on the diet.

I can't see that the antibiotic cream will hurt anything but don't use the steroid until after a dh biopsy. I doubt she has anything infected though to need the antibiotic. I had killer lesions all over my body & not a one got infected. Just my conclusion that dh doesn't get infected BECAUSE of the antibodies themselves being present in the skin. That's what is attacking our skin is the antibodies so it stands to reason that anything thinking about becoming an infection doesn't stand a snowballs chance in hell of succeeding.

 

I think paying yourself if the private healthcare won't cover it is a good idea. In that case though, I would go to a derm first & foremost -- probably be the cheaper route too. THEN after you get a dx of dh you can get the private (or national) to pick up the tab for a gastro & endoscopy. 

[dwhite42]

lol Squirming itch about it not standing a snowballs chance!  I think you are very right about it not being infected, think the doctor really doesn't have a clue.  I think the weeping and she has been scratching and making it bleed and  as you say its on full DH attack!

 

Just wondering if all of you used to have a particular type of gluten food that hit you harder than others?  My daughter seems to suffer more with pasta and homemade bread or bread in restaurants.  We had meatballs tonight and I just felt I couldn't inflict that on her after last weeks pasta episode, which effected her badly over the weekend.  She had a sandwich for lunch and it was gluten free brown rice pasta for us all!  

[squirmingitch]

She can do with the equivalent of 1 to 2 slices of bread per day -- she doesn't need more than that. That's what you eat if you are doing a gluten challenge. However, I'm not sure that will make 1 bit of difference in her rash but then on the other hand no need putting more antibodies under the skin than 1 has to. Have you tried the low iodine for her?

I think most of us wonder if there weren't certain foods that affected us more than others but I can tell you I've never read any medical texts or studies that said one food vs another was any particular person's downfall. Having said that; it is my personal leaning that while we are all celiacs -- there can be subsets if you want to call them that. I had mild, infrequent GI symptoms BUT if I had barley OH BOY! my stomach really reacted! Beer? Felt like a rake had been taken to the lining of my stomach & I would have cramps & "D" EVERY time. Malted Milk balls? Same thing. Carnation Instant Breakfast the chocolate malt flavor? Yep, you got it -- big time GI reaction. So I learned to stay away from anything with barley or that said malt on it. So I believe there are those of us who react stronger to barley, those who react stronger to wheat & those who react stronger to rye. Just MHO.  

[squirmingitch]

I did want to ask you how she's doing mentally. How is she holding up? And I realize she's 14 & quite capable of understanding all this but how is she dealing with the whole plan? Is she on board with pursuing it until she can get tested and does she truly realize why it's so important that she gets an official dx?

 

Have her wear loose clothing. The rash seems to love pressure points. I ditched the jeans & the bra right away. Everything loose & light feeling. 

 

Give her a gentle hug from me. Tell her to hang in there.

[nvsmom]

Beer used to get me badly too.  Barley is evil..... 

[dwhite42]

Ahh thats very kind to ask Squirming Itch.  She seems to be taking it well, better than me.  I am so impatient thats my problem, like a dog with a bone!  She seems to be worse since she had the week off of gluten but am not sure whether she is more in tune with what is happening in her body and is listening.  I think she would be extremely good on the diet, if however it was my middle one, she would be cheating in all areas!  She is quite health conscious, always been good about eating her fruit and vegetables, will decline sweets etc and has been known to have her Easter Eggs left at Christmas, much to her sisters disgust! Its funny thinking about it as when she was younger and failing to put on weight they asked about her appetite, which I thought was pretty good, always loved fruit, raisens, vegetables etc. and we have always joked that she was offered some chocolate gateau when she was younger and she chose broccoli. Perhaps she instinctively knew!!    Now my other daughter pulled down the christmas tree, twice, to get the chocolate decorations off of it!  They are both totally mirror opposites with weight now, middle child being slim and my eldest really struggling, despite not eating a huge amount.  

 

 Although its not a great time for it all to be coming to the forefront in her teenage years I think she is looking forward to getting the diagnosis, she flits between believing it and then saying "well what if your wrong, the doctors don't really think it is, everyone will think your really silly!"  I will certainly lower the gluten and just give her the sandwich a day.  Will also look at the iodine diet to help with the scratching.  She had a bath of oats yesterday and it looked nicer.  Just sit tight and wait now!  

[dwhite42]

Beer used to get me badly too.  Barley is evil..... 

lol! love the picture!

[ravenwoodglass]

Please watch for flare-ups with the oat baths. I had severe DH and while it did seem to help right when I took them I think it aggravated later. That might not be the case for her though.  If you can use gluten free oats for the soaks that might be okay for her. 

I hope you get some answers soon and she gets some relief. 

[dwhite42]

Please watch for flare-ups with the oat baths. I had severe DH and while it did seem to help right when I took them I think it aggravated later. That might not be the case for her though.  If you can use gluten free oats for the soaks that might be okay for her. 

I hope you get some answers soon and she gets some relief. 

[dwhite42]

So we went to see a Gastro Consultant today and feel rather up and down.  

 

We went through history etc and he did a bit of a poke about with her belly.  His initial thoughts were that no she wouldn't be coeliac.  However he was rather confused with the doctor only ordered an Anti TTG test and only a FBC.  He has however ordered a full range on tests such as:

 

Ferritin, HLA Typing DQ2 and DQ8, Full blood count with WBC Differential, ESR, Urea, NA, K, Creat + Ca, Mg, Phos +LFT, CRP, Vit D, IGA/IgG/IgM, Coeliac Screen ttg, IgE and IgE Food Scan.  Which I am very happy about!

 

This is one for you Squirming Itch also if you don't mind.  He looked at her skin and said it didn't look like "classical DH" and that because she had scratched it, he felt it was more eczema as it didn't have blisters.  It is very weepy at the moment and looks a bit ulcerated and has really peaked in one area this week.  I will try and work out how to upload some photos.  Also the patches on her elbows are healing slightly.  Did yours sometimes always flare up on both sides at the same time?  Just that at times my daughters does and then when cream is used one side flares and then the other, but they are in identical places.  The bad patch on her leg is one sided but she has had problems on both in the past.  Also with both tops of the hands but currently only one is bad.  Did it also omit heat?  I have looked at some pictures and feel that hers looks so similar, just when people (like doctors) disagree it makes you feel a bit dumb!  

 

However he did feel that her body seemed very hyper sensitive and that there was something going on that something was definitely causing a reaction.  He also said because of her age, it is very hard to determine what was normal with stomach pain and not.  He also felt that when she was younger when she had hives and went gluten free, he felt she should have had more of a reaction returning back to it.  

 

We go back in three weeks for the tests and to see what they reveal to see what the next course of action would be.  Such a long drawn out phase!  I know that you said you failed the bloods Squirming itch but did anything in the other parts of your blood work scream out?  I feel that I have been thrown so into doubt, I was so certain and now I feel a bit of a banana for convincing myself!  My daughter has been off all this week as has felt really bad, mainly headaches, dizziness and feeling sick, alongside forgetfulness!  Sorry for all the questions everyone, its been a long week!

[nvsmom]

 He also said because of her age, it is very hard to determine what was normal with stomach pain and not. 

I don't think pain is normal. Does he mean that kids supposedly feel more pain than adults and that is normal?  Uh-huh....    I remember being told by my doctor, at about age 8, that I was just one of those people who got a stomach ache after they ate so I should drink milk with every meal.  No helpful advice for a celiac with lactose intolerance. 

 

I am glad the doctor is looking into it more.  I hope she is feeling better soon.

[dwhite42]

I don't think pain is normal. Does he mean that kids supposedly feel more pain than adults and that is normal?  Uh-huh....    I remember being told by my doctor, at about age 8, that I was just one of those people who got a stomach ache after they ate so I should drink milk with every meal.  No helpful advice for a celiac with lactose intolerance. 

 

I am glad the doctor is looking into it more.  I hope she is feeling better soon.

Thank you Nicole.  It seems harder for people to take seriously as she is a girl and is at "that age"     

[squirmingitch]

Did he elaborate as to what he considers "classical dh" to look like?

I'm trying very hard to understand WHY he doesn't think that scratching would destroy blisters? And he obviously DOESN'T know that dh doesn't always present in blisters that can been seen with the naked eye.

Reference:

https://www.celiac.com/forums/topic/84513-descriptions-of-dh-types/

And as to the validity of the aforementioned book:

Open Original Shared Linkfrom 2007! It STILL holds up!

 

As to your questions..... dh can present at the SAME time on opposite sides of the body, dh can present on opposite sides of the body but 1, 2, 3, 4, days apart or even more than that, sometimes it doesn't present bilaterally at all - there can be random ones that present on 1 side & not mirror on the other. Yes, the get hot especially when they're itching like a SOB. They get red & inflamed & puffy or raised & emit a LOT of heat. 

I'm sorry, I'm still stuck on this doc. I'm disgusted. DH is called the suicidal itch -- it didn't get that nickname because it's like a walk in the park. it's a bone deep itch. You could scratch all the way down to the bone EASILY.

Also as to the bilateral presentation -- one side can heal faster than the other or they may both heal equally. 

I'm still fuming. Sorry.

Oh & the lesions do weep. A clear watery fluid but if it gets a few minutes it will become very sticky feeling - it also hardens to a clear amber color. Like teeny amber-gold pearls. This fluid is (1 of these days I'll remember how to spell this word & not have to look it up each time!) eosinophils or white blood cells. The ones in my scalp dried to an especially hard substance akin to concrete! I swear you could make bricks out of the stuff.

 

I was low in Vit D period. 

 

These are rather heavy to read & I freely admit there are many parts I don't understand but there are some very interesting & pertinent portions so you might want to pick through them & glean what you can.

Open Original Shared Link

 

Open Original Shared Link

[1desperateladysaved]

I don't think that anyone approached the late onset of periods.  I have 5 girls so here goes:

 

Recently I told my doctor that I had started my period when I was 15.  She made the sigh I often hear when I mention this to doctors.  She felt that it was unusually late.  She furthermore went on to state that the age of onset has gone down in recent years, so that they expect the first period at 10 years old.  That surprised me as my girls have been into their teens before having theirs.  One of my girls is not a biological child and just started her period at 10 years of age.  I had two of my adult children tested for celiac disease and the results were negative. One has very low ferritin level and I am still suspicious, but what can you do?

[dwhite42]

Did he elaborate as to what he considers "classical dh" to look like?

I'm trying very hard to understand WHY he doesn't think that scratching would destroy blisters? And he obviously DOESN'T know that dh doesn't always present in blisters that can been seen with the naked eye.

Reference:

https://www.celiac.com/forums/topic/84513-descriptions-of-dh-types/

And as to the validity of the aforementioned book:

Open Original Shared Linkfrom 2007! It STILL holds up!

 

As to your questions..... dh can present at the SAME time on opposite sides of the body, dh can present on opposite sides of the body but 1, 2, 3, 4, days apart or even more than that, sometimes it doesn't present bilaterally at all - there can be random ones that present on 1 side & not mirror on the other. Yes, the get hot especially when they're itching like a SOB. They get red & inflamed & puffy or raised & emit a LOT of heat. 

I'm sorry, I'm still stuck on this doc. I'm disgusted. DH is called the suicidal itch -- it didn't get that nickname because it's like a walk in the park. it's a bone deep itch. You could scratch all the way down to the bone EASILY.

Also as to the bilateral presentation -- one side can heal faster than the other or they may both heal equally. 

I'm still fuming. Sorry.

Oh & the lesions do weep. A clear watery fluid but if it gets a few minutes it will become very sticky feeling - it also hardens to a clear amber color. Like teeny amber-gold pearls. This fluid is (1 of these days I'll remember how to spell this word & not have to look it up each time!) eosinophils or white blood cells. The ones in my scalp dried to an especially hard substance akin to concrete! I swear you could make bricks out of the stuff.

 

I was low in Vit D period. 

 

These are rather heavy to read & I freely admit there are many parts I don't understand but there are some very interesting & pertinent portions so you might want to pick through them & glean what you can.

Open Original Shared Link

 

Open Original Shared Link

No elaboration on classic DH, I said I had lots of pictures put he didn't ask to see!  I think from her history of having hives and going back on gluten after 6 months and was fine made up his mind.  He's the second person saying about her scratching, which as you say, IT ITCHES!  It sounds so like hers with the fluid liquid coming off.  She puts plasters on to stop scratching and the leakage.  I have just read your description to her and she smiled and said YES!  I am really going to have to look up how to put some pictures on!  I am praying that her blood tests show at least something in all the tests.  I think I shall also push them to refer to a dermatologist also.  Got three weeks to wait and counting!  I did take her back to the doctors this week (a different one) and said I wasn't happy by the lack of blood tests performed and I was concerned about her dizziness etc.  she has ordered quite a few tests, some overlapping the Consultants so I am going to get her to do that also and I shall have in mind a bit sooner whether anything is showing up.  I am just too impatient!     

 

Thanks for the links, I am going to print off and try and read and get my highlighter out!

[dwhite42]

I don't think that anyone approached the late onset of periods.  I have 5 girls so here goes:

 

Recently I told my doctor that I had started my period when I was 15.  She made the sigh I often hear when I mention this to doctors.  She felt that it was unusually late.  She furthermore went on to state that the age of onset has gone down in recent years, so that they expect the first period at 10 years old.  That surprised me as my girls have been into their teens before having theirs.  One of my girls is not a biological child and just started her period at 10 years of age.  I had two of my adult children tested for celiac disease and the results were negative. One has very low ferritin level and I am still suspicious, but what can you do?

I have pressed this a couple of times but when they "google"  it  states it can be as late as 15, after that then they start looking for reasons.  I feel that my daughters are being suppressed, she has the moods and hormones but nothing happens.  As you say children are so much younger nowadays.  I started mine when I was 12.  I have an 11 year old daughter and my feelings are that she will start hers before her elder sister!  All of my eldest's daughters friends all have theirs and she is taller and bigger than the majority of them.  She is  not the super skinny sporty type, so I feel something is going on.  The Consultant did ask whether puberty was delayed, which it wasn't, it just doesn't seem to have progressed into anything further!  

 

I feel if your daughter has ver low ferritin then her body will not want to give off any more iron as it hasn't got enough!  But we are just parents and we seem to know very little!     

[squirmingitch]

To do photos create an account on Photobucket:

Open Original Shared Link

then they can be loaded here or you can link to the photobucket album with those photos in it.

 

You asked about blood tests & I see some are being done so that's good but I went back & did a search of this site for the bloods that should be run to check for things that are common to be "off" with celiac. Funny, the first one I clicked on was the one I had posted asking the same thing once upon a time. so sharpen your pencil & make notes. 

https://www.celiac.com/forums/topic/94932-vitamin-mineral-iron-thyroid-etc-tests-which-ones/

 

https://www.celiac.com/forums/topic/93392-in-the-process-of-diagnosishigh-iron/

 

https://www.celiac.com/forums/topic/102218-surprised-by-blood-tests/

 

https://www.celiac.com/forums/topic/104147-help-wblood-test-results/

 

YES! Demand a consult with a dermatologist!!!!!!!!!!!!!! Tell them you're sick & tired of chasing this thing around with this one saying it's eczema, that one saying it's fungus, the next one saying it's psoriasis & you want an expert on skin -- that would be a derm to see your daughter. Then when you get to the derm flat out demand a dh biopsy or else you'll report them to (whomever you report that to in your country) & if they say it's psoriasis then tell them you want PROOF -- to do the TEST & prove it to you -- here's a link:

Open Original Shared Linkyou want a biopsy proving it's psoriasis

If they say it's Scabies then you want them to prove it to you by doing a scraping. Here's a link:

Open Original Shared Link

If they say it's fungus then you say you want them to prove it by doing the test. Here's a link:

Open Original Shared Link

And if they say it's eczema then you want them to do all the tests to prove it's NOT something else & that would include a dh biopsy.   Here's a link:

Open Original Shared Link

 

What kind of plasters is she putting on it? 

 

Also, at least for now, make sure any topical products are gluten free & that includes the oatmeal baths. There have been scientific studies to prove the gluten molecule is too large to pass through skin so topical gluten won't hurt us. I have read that study & have ONE problem with it. It was NOT a study to determine if those of us with dh are susceptible to a topical glutening. By this I mean that we have open sores or lesions where there IS NO skin -- the skin has been scratched off or the lesion has erupted leaving a raw spot. When they do a study with those factors & say the gluten is not entering through the abraded places on the skin then I will believe them. Until that time I will go with what many on this dh forum including myself have experienced. And I will say this ~~~ perhaps those of us with dh just plain have more sensitive skin, perhaps our skin is in a super heightened sensitive state ~~~ whatever ~~~ I just know that almost all of us have reported reactions to topical gluten on broken skin. 

 

Has she ever been seen by a neurologist?

[dwhite42]

Open Original Shared Link

 

 

To do photos create an account on Photobucket:

Open Original Shared Link

then they can be loaded here or you can link to the photobucket album with those photos in it.

 

You asked about blood tests & I see some are being done so that's good but I went back & did a search of this site for the bloods that should be run to check for things that are common to be "off" with celiac. Funny, the first one I clicked on was the one I had posted asking the same thing once upon a time. so sharpen your pencil & make notes. 

https://www.celiac.com/forums/topic/94932-vitamin-mineral-iron-thyroid-etc-tests-which-ones/

 

https://www.celiac.com/forums/topic/93392-in-the-process-of-diagnosishigh-iron/

 

https://www.celiac.com/forums/topic/102218-surprised-by-blood-tests/

 

https://www.celiac.com/forums/topic/104147-help-wblood-test-results/

 

YES! Demand a consult with a dermatologist!!!!!!!!!!!!!! Tell them you're sick & tired of chasing this thing around with this one saying it's eczema, that one saying it's fungus, the next one saying it's psoriasis & you want an expert on skin -- that would be a derm to see your daughter. Then when you get to the derm flat out demand a dh biopsy or else you'll report them to (whomever you report that to in your country) & if they say it's psoriasis then tell them you want PROOF -- to do the TEST & prove it to you -- here's a link:

Open Original Shared Linkyou want a biopsy proving it's psoriasis

If they say it's Scabies then you want them to prove it to you by doing a scraping. Here's a link:

Open Original Shared Link

If they say it's fungus then you say you want them to prove it by doing the test. Here's a link:

Open Original Shared Link

And if they say it's eczema then you want them to do all the tests to prove it's NOT something else & that would include a dh biopsy.   Here's a link:

Open Original Shared Link

 

What kind of plasters is she putting on it? 

 

Also, at least for now, make sure any topical products are gluten free & that includes the oatmeal baths. There have been scientific studies to prove the gluten molecule is too large to pass through skin so topical gluten won't hurt us. I have read that study & have ONE problem with it. It was NOT a study to determine if those of us with dh are susceptible to a topical glutening. By this I mean that we have open sores or lesions where there IS NO skin -- the skin has been scratched off or the lesion has erupted leaving a raw spot. When they do a study with those factors & say the gluten is not entering through the abraded places on the skin then I will believe them. Until that time I will go with what many on this dh forum including myself have experienced. And I will say this ~~~ perhaps those of us with dh just plain have more sensitive skin, perhaps our skin is in a super heightened sensitive state ~~~ whatever ~~~ I just know that almost all of us have reported reactions to topical gluten on broken skin. 

 

Has she ever been seen by a neurologist?

 

Thanks Squirming Itch.  You  have been such a great help.

 

I have made a photo bucket account.  I hope this is how you do it!!!!  Open Original Shared Link

[dwhite42]

Open Original Shared Link

 

 

 

Thanks Squirming Itch.  You  have been such a great help.

 

I have made a photo bucket account.  I hope this is how you do it!!!!  Open Original Shared Link

I  have stopped her having oat baths and double checking any topical products.  She has not see a neurologist, what sort of tests do they conduct, I may  have to add it to my list!  I just find everything takes so long, although from more and more I am reading it looks like everyone has had the same problems with time and brick walls!

[dwhite42]

OOh and the lady GP who we saw this week ordered some of the ones the consultant did but also Thyroid Function Tests, B12 & Folate.  She is having them done on Tuesday so hoping I will have some of the results back at the end of next week.  

 

I like this lady as she actually added Vitiligo down on the blood test sheet and didn't try to tell me it was a FUNGAL infection, like our last doctor did who refused to do any more blood work!