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Member Since 01 Nov 2011
Offline Last Active Private

Posts I've Made

In Topic: Confused Boyfriend Of Someone With Celiac's

Yesterday, 06:59 PM

For starters read this entire thread:



That will give you a whole lot of information.


And I also applaud your support of your girlfriend!!!! My hat is off to you!


If you eat or drink gluten then your girlfriend can get glutened when you guys kiss unless you brush your teeth very thoroughly before any lip locking happens.


I do not eat out at all. Not worth the risk to me. I have the skin presentation of celiac disease called dh for short (dermatitis herpetiformis) and the antibodies get deposited under the skin & can stay there for a long, long, time and make you itch like there's no tomorrow so I just do not risk eating out. I do not immediately get gi symptoms to tell me I have been glutened.


Yes, when a celiac digests any gluten, even trace amounts, it damages the villi in the small intestine so she needs to be as clean as possible all the time forever. 

In Topic: I Have Celiac.. Does He?

Yesterday, 04:51 PM

No, you would not be off in thinking that. Just remember that dh does not always just "pop up" when eating gluten -- it isn't an automatic next day thing or next 4 days or even next month thing. DH can & does wax & wane while eating gluten or NOT eating gluten. SO, you have to consider that in your evaluation.

I looked up some links that you (probably have already found yourself) will be interested in reading. The most revealing is this first one &  it's the last line under "Conclusion".



I found it through this article:



More links dealing with dh in children:









http://www.ncbi.nlm....les/PMC1433959/ this one is specifically dealing with children with dh.


You would have to subscribe to these two but I see Dr. John Zone is the section editor in the 1st one. He is one of the major players in dh research -- he's in Utah.





Reading all of those ought to have your retinas bleeding for this evening.


And if all that doesn't make you google eyed here's more:





http://www.jpeds.com...3384-0/abstract  --- interesting article about the dental enamel defects in kids with dh


And this one is just plain interesting to read about someone else's experience & the progressive stages/presentations it went through with this child. I would bet my bottom dollar that child is celiac.


In Topic: Top Bar Not Working Correctly

Yesterday, 09:58 AM

Messenger, Notifications & profile does not work for me 99% of the time that I click on them. I do get the little # up there to tell me how many new notifications I have and how many messages I have but as I said, 99% of the time when I click on them I get nothing, zero, zilch, nada. this happens both in Safari & Google Chrome.

I have no idea about the FB, Twitter & RSS feeds thingys b/c I don't do any of those.


This has been happening for around 3  months now? A LONG time. I kept thinking the kinks would work out but they haven't.

In Topic: I Have Celiac.. Does He?

30 March 2015 - 05:52 PM

You are most welcome!

Actually I was surprised when to read that:

"An increasing number of patients are being diagnosed without typical GI manifestations at older ages. A reasonable assumption is that approximately 70% of patients with newly diagnosed celiac disease do not present with the typical major GI symptoms. Once again, a relationship between the age of onset and the type of presentation is noted; in infants and toddlers, GI symptoms and failure to thrive predominate, whereas, during childhood, minor GI symptoms, inadequate rate of weight and height gain, and delayed puberty tend to be more common. In teenagers and young adults, anemia is the most common form of presentation. In adults and in the elderly, GI symptoms are more prevalent, although they are often minor."




I am right with you on your feelings of celiac sucks but being thrilled to have an answer and no meds needed - easily controlled with the gluten-free diet. Also I can certainly echo your thoughts on at least one of your children having it too but again, if that is the case even with more than one of your children eventually at least it's an "easy" fix as you said. Things could be a lot worse. AND you are keeping on top of the situation so as to catch it early if any of your kids presents with celiac. That is monumental! They will not have to go through all the years of symptoms & wear & tear on every cell in their bodies that those of us who found out much later in life experience. They will most likely suffer no permanent effects of years of undiagnosed celiac. 

If your son does have dh then you are catching it so early and it shouldn't leave permanent scars. He won't have decades of antibodies built up under his skin so his dh should resolve fairly quickly and not linger for years torturing him. 


There is more I would like to impart/discuss but last night I woke around 3am & didn't get much more than a few minutes sleep after that so I'm going to call it an early night this evening.


I wish you the very best tomorrow and look forward to hearing how things went.

In Topic: I Have Celiac.. Does He?

29 March 2015 - 04:42 PM

I'm going to try not to forget to comment on all the things you've said.

So then he's presenting bilaterally now. That narrows down the list of rashes & is in line with dh.

I would like to relate my personal experiences..... When I first began to present with the little blisters they itched but not like the very devil. They would itch for a while & stop, maybe start back up & stop --- it wasn't a 24 hours a day thing. This was before I knew it was dh of course. Before the blisters I used to get places that were something like bug or insect bites (many report the same thing) & they would itch & stop & itch & stop. Also at that time there were not big groupings of them, just 1 to 3 or 4 & the same for when I began to get the blisters AND they weren't bilateral early on. I am however sure (in hindsight) that these were all early presentations of dh. As time went on all these presentations did become bilateral and when they did that it might be 3 days later that it showed up say on the other leg or other side of my neck -- you get the gist. From there things progressed to almost always bilateral concurrently and the intensity as well as the duration of the itching escalated. There were times I had none & times I had gobs. DH can & does wax & wane whether one is eating gluten or not until one day when you break out in the mother of all outbreaks & you just have no choice than to sit up & take notice & that will itch 24/7 like you wouldn't believe. It's called the suicidal itch & I know why! It didn't start out like that in the beginning though. There has been precious little research done on dh so I can't cite any bonafide studies or texts that back up what I am about to state. For this, I can only go on my suppositions based on my & my husbands experience as well as what other dh'ers have related on this forum. I believe dh is an escalating thing with tiny telltale signs that most of us never truly pay attention to b/c they seem so piddling such as when I would get 2 or 3 tiny blisters on my calf and I just knew if I told a doc about them & even showed him he would laugh me right out of his office. I believe the warning signs or early signs are there long before we get to the point of KNOWING or having a huge outbreak. Eventually the rash progresses to become more extreme with each outbreak. It would seem your son is following this line. 

I am very glad you have documented the MCV & how it cleared up gluten free as well as these photos. Make sure to take all those things with you to the Ped Derm along with your notes. I too am hoping this Ped Derm is on top of his/her game b/c your son certainly needs to get a dh biopsy if for no other reason than to rule it out. Use that to press your point if you are sensing hesitation on the derm's part. I believe (again no med studies to back me up) it's possible he could turn up negative on the biopsy but just like doing the blood panels for the other kids, a dh biopsy should be done for this one every few years if he continues to present with rashes. It may take time for things to "show up" enough to make a positive on a dh biopsy. 

I know you know your stuff so I'm not preaching at you but rather reminding you -- the old 2 heads are better than one --- so we don't leave anything out or forget anything.

Make sure your son does not have any oral steroids or steroid shots for 2 months prior to the dh biopsy also cut out any topical steroids (if any) 3 to 4 weeks prior. This will prevent false negatives.

My rash did not burn at first -- it just itched. it was later that it not only itched but burned and stung too.

The GERD as well as the dx of gastritis are telling. I wish I had a dime for every time a derm dx'd dh as molluscum contagiosum or scabies or common dermatitis or psoriasis.


You are being a great mom! I certainly agree it needs to be figured out. I'm so glad to hear you are watching all your kids & taking them for testing as they should be. 


When it comes time for the biopsy you might want to put several layers of gauze over the most likely lesions so he can't scratch them. The IGA pattern the lab is looking for is easily destroyed by scratching & such. Maybe put socks over his hands while he sleeps too.


I hope the derm is all you hope he/she is and you are on your way to some concrete answers. Please let us know how it goes.


OH, I have had tons of cavities and crowns, root canals too. I have excellent dental hygiene - I brush after breakfast every day & floss, brush & water pic every night before bed. When I go in for cleanings there is so little that they are done in about 10 minutes -- still the cavities. UGH! 


I can well imagine your 12 yr. journey to a diagnosis. It boggles the mind doesn't it? The stories I have read on here about the hell people went through trying to get diagnosed. How many times have docs told people it's all in their heads?