5 Year Old Boy, And Possibly Me?

[Irishgirl76]

Hello,

Just for a bit of history - I was diagnosed with Celiac in March of this year, and my 7 year old daughter was diagnosed in February. I had both of my boys tested as well, and they tested negative.

Recently, my kids went to visit their dad for 2 weeks. When they came back, my 5 year old son had a horrible rash on both of his elbows. It was itchy, and he said it hurt. I took him to the doctor, who seemed skeptical that it could be DH, but after my insistence, said to come back in a week and she would biopsy it. However, it seems to be disappearing. Is it possible that this could be DH? I read it was rare in children.

Since my daughter and I both have Celiac, I decided to make us all gluten-free. They have not knowingly had any gluten since my daughter's diagnosis in February. I asked my doctor if I should give him some gluten if the rash starts to go away, to see if it flares it. She said no. I picked up some crackers today and am debating whether to give them to him. His Celiac test was negative so it's not like I am knowingly giving gluten to a Celiac... and at the same time, if this is DH I feel that it is my only opportunity for a diagnosis, since likely there was some cross-contamination from his dad's house. His biopsy is Wednesday... if I give him some gluten over the next few days and it flares his rash, will that make it more likely that it is DH? Is that enough exposure to get a positive biopsy result? Should I trust that my GP knows how to biopsy for DH properly?

Also, when I took my son in for his appointment, I also booked an appointment for myself for what I thought was "hives". I get this intensely itchy rash on the backs of my hands, that sometimes also appears on my arms, the backs of my knees, and on my back. They are little tiny bumps that look like pimples when they are inflamed, and are so itchy I want to scratch my hands off. I assumed they were some kind of allergic reaction, as I wasn't really knowledgeable about DH, but now I'm wondering if that's what I could have as well? I didn't think the backs of the hands were a common site for DH. I have some scarring when they are not active. When they flare they are like tiny white blisters, and get redder as I scratch at them. I asked to be referred for allergy testing but now wondering if I should biopsy for DH as well. Does it matter if I already have a firm Celiac diagnosis and am gluten-free anyway? If I am gluten-free, could I still be having DH flare-ups?

Thanks for any help!

Alissa

[squirmingitch]

Because your son was gluten-free (gluten free) the crackers won't give him a positive biopsy. You have to be actively eating gluten for 2 months at least & at 3 or 4 slices of bread a day. Even then the biopsies are notoriously negative --- 37% false neg. rate. BUT, that may be why he tested neg. on the blood work. Celiacs with dh tend to test neg. on blood work more often. NO! I would not trust that your GP knows how to biopsy for dh correctly. I seriously doubt the GP will get it right. And dh is not rare in children despite what you read. You have to realize all these stats are based upon "officially diagnosed by the medical community" celiacs so the stats are quite skewed in that respect you see? Based on that; only children who were officially diagnosed celiacs would then be in the group up for question then those children would have to develop dh AND get a positive biopsy of IT before that went down in the statistics. Well, any child diagnosed celiac without dh is likely to be gluten-free before they ever present with dh & then may not present b/c they are gluten-free.

No, there is no need for you to get a biopsy & dx of dh. You have been dx'd with celiac --- there is no need for any further dx. And it is likely what you have on your hands is dh or a predecessor of it. Be glad you have a dx & are gluten-free. If you keep having flares you may want to try going low iodine for a while to see if that tamps it down for you. Go to thyca.org & click on the low iodine cookbook around pg. 11 or 13 lists foods high, med. & low in iodine content.

Now, that brings us to the problem of what to do with your son. With the history here of you & your daughter & this new development with your son I'd say he is probably celiac too. But how to get a dx without putting him through the glutening process & putting you & daughter at risk for cc during that time? He will need a dx for school, college & life.

Let's see if some others don't come on here & give us some ideas of the best way to go about getting a dx for your son without putting your family through too much grief in the process. Children are a little different too than the adults so I would like to see some of our more knowledgeable members come on here & give some input.

[MistyRG]

I've been going through this as well. Do I want to put my kids (5) through testing so we KNOW . . . or just have them go gluten free?

If there was a rash, I wouldn't hesitate to get that biopsy. It's quick and painless!! I am more leery about the endo on them. Personally, I am getting the celiac panel on all the kids, and we'll go from there. I would hate for them to NEED a diagnosis in the future and have to reintroduce gluten for a while before being able to get an accurate biopsy and diagnosis. I want to know if I can be a bit relaxed when they go to friends' houses or parties . . . or if I need to send food!!!

I am still new at this (and waiting for an official diagnosis), but I would give him crackers. If it causes a flare up, it gives the doc more to work with. I would think that a skin biopsy will come up positive for DH if it is DH whether you are eating gluten or not. Right??? I understand the intestinal biopsy would be inaccurate, but if there is a rash, it seems that it wouldn't be affected by diet.

I have read a few stories of DH flare ups while gluten free. So that could be normal. I guess the biopsy is up to you. If you are already diagnosed, it will only tell you what the rash is. Then again, if it isn't DH, you may want to know what the rash is from!!!

[squirmingitch]

NO! I can provide documentation that you need to be actively consuming gluten for a while EVEN to get the rash biopsy. I'm really pressed fro time at the moment & will be most of the day so I can't locate those medical ref. to support what I'm saying right this moment.

Will get to it asap.

[Di2011]

I am 39, single mum of one, Liam who is 9y/o.

I broke out with full blown head to toe DH in May last year. I'd been working in a bakery for 9 months with growing and growing GI/neuro symptoms I didn't recognise at the time. I feel ill with another sinus infection, in bed for 3 days, went back to the bakery for first shift and six hours later was covered in it head to toe. I am officially un-diagnosed but given the extent of my sudden onset and life time history of otherwise avoiding breakfast/pasta/pizza/sandwich etc etc it sunk in pretty quick that wheat was the problem. 48 hours literally (couldn't sleep anyway due to the insane itch) of internet research that took me to 1000s of derm images and eventually this websit my GP was supportive of my self diagnosis of DH. Unfortunately finances leave me without the "official" diagnosis via endo/skin biopsy but I came to terms with that early in the journey.

So the next and even bigger dilemma for me..

I went gluten free straight away. At first I thought keeping Liam on his usual diet would be okay. Kept it up for a while but gradually and naturally given my aversion his lunchbox and dinner were more and more gluten-free. Then he started avoiding the gluten breakfast cereal. Stocked up on eggs etc instead. I kept getting glutened and itching was barely improving.. Decided to make our house truly gluten free. Liam spends a lot of my out-of-school work hours, weekend time with his grandma which is gluten full. I didn't even consider that there might be consequences for him. He wasn't itching so going gluten free at home but having Grandmas meals/snack or me taking him for his rare takeout was not something we'd considered. Today he looks and itches like I did six months ago. I can only deduce that his immune system has had some kind of reaction to the 100% gluten-free at home/school but almost daily but high-content gluten exposure elsewhere. So he is essentially gluten lite. When he eats away from home it a big gluten hit.

We are still a long way off from a derm appt and Grandma is a "celiac/gluten intolerance is a wasting disease" ((oh yeah.. I heard it a lot the past year)) so with the need for regular intake for diagnosis and her opinions, we together over many many weeks of conversation decided to keep his gluten intake at grandmas.

Liam is learning about reading labels with me. At first out of his care/concern for me and my condition. Now he is an avid reader of labels and learning lots of things about what goes into food and how it effects people. I keep my guilt under raps whilst waiting for diagnosis for him. If he is learning now how he will have to live the rest of his life ((and he is )) then perhaps he & I have a middle ground. No diagnosis but getting to learn the drill all the same.

I dream and hope and pray that your son gets a diagnosis but if he gets a negative then you really need to take him on the journey. Show him all of your rashes. Explain to him about the 'immune system'. Tell him what causes it. Explain to him about gluten: wheat rye barley. Show him what it looks like (glutens - wheats etc). Ask him what he thinks. How did he feel eating gluten at dads (without the 'dads fault' thing of course). Make taking about gluten a regular affair without it being a big deal. I got into the habit of asking Liam to check labels "for me". "if you can't read any of the crazy chemicals then I can help". etc etc etc...

[Irishgirl76]

I do have requisitions for both boys to have gene testing done - would this be my best bet vs biopsy? I should note that when we all had our bloodwork done, we had been *mostly* gluten-free for several months beforehand (not including contamination/hidden sources of gluten). I re-introduced gluten for a couple weeks before the blood tests. This yielded an extremely high positive for my daughter (off the chart), a slight positive for me, and negative for the boys (who are 3 and 5). So there was a good chance of false negatives with their bloodwork.

[squirmingitch]

Okay, I found 2 of them. I know I have 3. Will have to hunt further.

Here is one. Read dwon just before the chart to where it says"

In children, celiac disease tests may be ordered when a child exhibits:" And see it says "

Autoantibody levels should initially be ordered when a person still has gluten in their diet. Positive or indeterminate results will then be confirmed with a

Open Original Shared Link

." Here's the link:

Open Original Shared Link

Here's the second. Read where it says, "celiac disease-specific Antibody Test" on left bottom of pg. 137 & you will also see it says:

For the interpretation of antibody results, total IgA levels in

serum, age of the patient, pattern of gluten consumption, and intake

of immunosuppressive drugs should be taken into account. If gluten

exposure was short or gluten had been withdrawn for a longer

period of time (several weeks to years) the negative result is not

reliable. For IgA-competent subjects, the conclusions should be

drawn primarily from the results of IgA class antibody tests. For subjects with low serum IgA levels (total serum IgA < 0.2 g/L),

the conclusions should be drawn from the results of the IgG class

celiac disease-specific antibody tests.

And here's the link:

Open Original Shared Link

[Irishgirl76]

Okay, I found 2 of them. I know I have 3. Will have to hunt further.

Here is one. Read dwon just before the chart to where it says"

In children, celiac disease tests may be ordered when a child exhibits:" And see it says "

Autoantibody levels should initially be ordered when a person still has gluten in their diet. Positive or indeterminate results will then be confirmed with a

Open Original Shared Link

." Here's the link:

Open Original Shared Link

Here's the second. Read where it says, "celiac disease-specific Antibody Test" on left bottom of pg. 137 & you will also see it says:

For the interpretation of antibody results, total IgA levels in

serum, age of the patient, pattern of gluten consumption, and intake

of immunosuppressive drugs should be taken into account. If gluten

exposure was short or gluten had been withdrawn for a longer

period of time (several weeks to years) the negative result is not

reliable. For IgA-competent subjects, the conclusions should be

drawn primarily from the results of IgA class antibody tests. For subjects with low serum IgA levels (total serum IgA < 0.2 g/L),

the conclusions should be drawn from the results of the IgG class

celiac disease-specific antibody tests.

And here's the link:

Open Original Shared Link

Thanks for the info. I'm going to call and cancel the biopsy, which was scheduled for Wednesday, until I have more time to figure this stuff out. It seems pointless to biopsy him if he has been gluten-free for 4 months. Poor guy was itching like crazy at bedtime, and asked if he would feel better in the morning. It's so hard when I just want to get to the bottom of it. His dad thinks we should just stick to the gluten-free diet and not bother with any further testing. I think at the very least I should pursue the gene test. I know they also didn't run a total IgA for any of us, so it is possible that he is IgA deficient.

[squirmingitch]

Yes, I don't see any point in doing the biopsy at this time. There is little chance of it turning up positive. The deck is stacked against it. Are you in a major city or near one? I think you need a real celiac expert doc. Few & far between but some are really great & have dx'd people based on things other than blood panel & endoscopy. I've heard/read of them dx'ing from family history combined with gluten challenge & even cutting the challenge short when the person in question is just too miserable to continue onward.

Honestly, I think you already have your answers. If we were talking about nothing but adults here then I would say screw the official dx's & be happy YOU know what it is & stay gluten free. But kids are a little different matter. School & all. Some parents on here have had a devil of a time getting the school to take them seriously without an official dx. That's my ONLY concern here. And it bothers me. But so does the idea of all the pain, not to mention damage the poor little guy is going to go through.

[Irishgirl76]

Yes, I don't see any point in doing the biopsy at this time. There is little chance of it turning up positive. The deck is stacked against it. Are you in a major city or near one? I think you need a real celiac expert doc. Few & far between but some are really great & have dx'd people based on things other than blood panel & endoscopy. I've heard/read of them dx'ing from family history combined with gluten challenge & even cutting the challenge short when the person in question is just too miserable to continue onward.

Honestly, I think you already have your answers. If we were talking about nothing but adults here then I would say screw the official dx's & be happy YOU know what it is & stay gluten free. But kids are a little different matter. School & all. Some parents on here have had a devil of a time getting the school to take them seriously without an official dx. That's my ONLY concern here. And it bothers me. But so does the idea of all the pain, not to mention damage the poor little guy is going to go through.

Thanks. We are in a smallish city. We do have a pediatric gastroenterologist for my daughter, but since my sons' tests turned up negative we didn't get referrals for them. She was the one who wrote us the req for the gene tests though, so maybe she would see the boys.

Luckily, I homeschool my kids, so school is a non-issue at this point. However, I'm a single mom so there is a chance that at some point in the future I will have to return to work and put my kids in school. If that was to happen, I would want to be armed with a dx. I like to be prepared for all possibilities.

I welcome any other thoughts/ideas!

Alissa

[squirmingitch]

Why don't you write her a note & ask her if she would see your boys? I bet she would. Explain the situation to her & see what she says.

[Irishgirl76]

Why don't you write her a note & ask her if she would see your boys? I bet she would. Explain the situation to her & see what she says.

Would it make more sense to wait and see what the gene test says? Positive gene test + itchy rash might be a more compelling reason to take them on rather than just the rash.

[squirmingitch]

Would it make more sense to wait and see what the gene test says? Positive gene test + itchy rash might be a more compelling reason to take them on rather than just the rash.

Yes. I meant to say that but have been in a time crunch lately.

[squirmingitch]

Oh, and another thing. Lookie, lookie!!!!!! I missed this when it was first posted. But you (WE) will have chances when this becomes widely available. Read the thread. YAY!!!!!!!!!!

https://www.celiac.com/forums/topic/91988-in-vitro-method-for-diagnosis/

Woooooooooo Hooooooooooooooo!!!!!!!!!!!!!!!!!!!!!!

[Irishgirl76]

Oh, and another thing. Lookie, lookie!!!!!! I missed this when it was first posted. But you (WE) will have chances when this becomes widely available. Read the thread. YAY!!!!!!!!!!

https://www.celiac.com/forums/topic/91988-in-vitro-method-for-diagnosis/

Woooooooooo Hooooooooooooooo!!!!!!!!!!!!!!!!!!!!!!

That sounds awesome! I wonder how long until it's widely available...

OH, one more question... Although the boys have already had the Celiac Panel, they didn't run a total IgA. Is it worth it to have this done while I'm having the gene test done (to save poking them more than once)? Do you think it's relevant? They also ran the IgG version of the Celiac test and it was negative as well.

[squirmingitch]

They should have done the IgA at the same time. Problem is..... gluten free & it will turn up negative.

[Irishgirl76]

I thought the Total igA was separate from the gluten testing? Just to make sure your body is producing sufficient IgA?

[squirmingitch]

Open Original Shared Link

[Irishgirl76]

Just to update, we finally had the genetic testing done, and all of the children turned up HLA DQ2 positive.

[squirmingitch]

So that means they have the genes for celiac but not that they WILL get celiac. If I recall correctly 1/3 of the populace have the celiac gene. However --- with the family history.......

 

How are things going now? Is your little boy still getting rashes? You do know don't you that the rash can present for 2 yrs. or even longer  EVEN AFTER GOING STRICT gluten-free. All the antibodies have to get out of the skin.

 

I was re-reading this entire thread so I could remember what all went on & want to mention that I get dh on the backs of my hands. You had questioned that in reference to yourself. Actually, there are few places, very few places I haven't had dh.

[Irishgirl76]

Thanks, squirmingitch. He has had minor flare-ups, but nothing major. I, on the other hand, had a major outbreak that lasted about 3 months (and is just settling down now). It was by far the worst I've ever had. At least I assume that was what it was. Whatever it was it was horrible, and the itching would actually wake me up in the night.

[squirmingitch]

OY! I know what that's like! I had a spontaneous outbreak that began in Sept. & lasted for 5 1/2 months --- well, I still have a lot of places but the outbreak I'm talking about was MASSIVE & I had lesions that were horrible --- BIG lesions & it got terribly painful. I now live in fear of having an outbreak like that again. If I had not been 5000% sure I was not getting any cc from anywhere then I would have sworn I had been glutened somewhere along the line. Just plugging along, putting in my time --- 15.5 months gluten-free now.

 

I'm very glad to hear your ds has only had minor flare-ups. I'm thinking that's an indication that you took him gluten-free before he got to the point where he will take as long to get the antibodies out of the skin as we will. YAY!

 

Hang in there!