"Clearly Celiac" Question....

[MrsChoplin]

Hi everyone! I absolutely love the information I've learned since I joined this forum a few weeks ago.

Now.... I have to be "that person" and ask for your non-medical-professional advice.....

I've had a rash for almost 2 years--my PCP as well as my Dermatologist have tried to figure out what it was for quite some time and had trouble doing so.

One particularly bad night, I started googling rashes (as I did almost monthly) and I stumbled upon Gluten Allergy-- Dermatitis Herpetiformis. Every thing matched to a T.

I called my doctor on the Monday and asked her to order a full Celiac Panel. She did.

The results are attached to this post.

She called me and said "You are clearly Celiac" and referred me to a NEW dermatologist that is "educated" in dealing with celiac disease and DH. I went and saw the Derma 2 days later, she said "No need to biopsy.....you are clearly Celiac". There is that "Clearly Celiac" comment again.

 

So..... this is my question. We have decent but not good insurance. I'm paying a LOT of money to see these doctors, run these tests, etc. If I am so CLEARLY Celiac.... why do I need to see a GI or have an endoscopy? I'm already looking at $600 in bills and the GI and Endo would put me closer to pay 2K out of pocket.

 

Can I go gluten free? See if my DH improves? Is the GI NECESSARY? Has anyone NOT gone to the GI and just went gluten-free?

[squirmingitch]

You are clearly celiac. Sorry for the bad joke but all jokes aside, you truly are clearly celiac. Here's the thing.... your derm did not do a dh biopsy. Fine. She is convinced it is dh. The blood panel is clear that you are positive on every test & I'm sure that figured into her dx. Here's the big question.... Do you have it on paper from her that she has given you a dx of dh? See, a dx of dh IS all by itself a dx of celiac -- don't even need the positive blood panel or an endoscopy; just a dx of dh. You have the positive blood to back that up. Follow me now..... let's suppose 1 day down the road, you have more problems & need to see a GI. Is the GI going to accept the derms dx who did not do a dh biopsy and the positive serum panel as proof positive you are a celiac? If you had a dh biopsy that you could show him/her that was positive then the GI would be forced or you could force him/her to accept the dx. GI's for the most part, think you have to have positive blood PLUS a positive endoscopic biopsy (as it's "the gold standard"). GI's who know their celiac stuff will know a dx of dh is a dx of celiac BUT they are thinking in terms of a dx of dh which was derived from a positive dh biopsy not one that was based on the derm just looking at your rash. See what I'm getting at? I'm just saying that down the road somewhere, someone may question or doubt your dx. If you can live with that then fine. I totally understand where you're coming from. If you're sure what you got is enough for you to go strict gluten free for life then fine. No need to go any further with testing.

Let me deviate for a moment. Some will say it's important to get a baseline by doing an endoscopy. Well, I'm not so sure about that but that's just my personal opinion. 

Back to the other issue. Will this dx be enough for all your first degree relatives to believe? I ask because all 1st degree relatives need to be tested for celiac every 2 years in the absence of symptoms but if symptoms present, then they need to be tested right away. 

These are the considerations you have to ask yourself.

Me? Yep, you bet! I went gluten-free without an endoscopy & so did my hubs - yes, believe it or not he is celiac too and both of us with dh. Life is strange isn't it?

NOW

Having said all that......

A heads up that your dh may not magically disappear on a gluten-free diet at least not at first. DH is a wicked taskmaster! It can present at any old time it feels like it whether you are eating gluten or not until that magical day that you have been strict gluten-free long enough that all the antibodies are out from under your skin. How long will that be? It varies with the individual. Could be 2 weeks, could be years - 2, 3, 4 years. No one can say for sure how your particular body will react. I think it depends on how long you've been celiac & how many antibodies got deposited under your skin before you had your first outbreak of rash.

 

Welcome to the club! 

[Gemini]

The reason they keep using the term "clearly Celiac" is because you have both a positive tTg and EMA.  That is a slam dunk for Celiac Disease, without the biopsy.  No other disease will cause a positive on the EMA.

I was in the same boat as you 11 years ago. I do not have DH.  I was so upset with the lack of help from the AMA and was wasting away from classic Celiac, that I found out there was a blood test and asked my thyroid doc to do it. I was extremely ill at the time. They ran the full panel, which I paid for out of pocket to get it done FAST, and failed every test by huge numbers. That was all I needed and went gluten-free.  Never had the biopsy and never looked back.  I figured if I continued to have GI issues after going gluten free, then I could still ask for a scope to see what else may be going on.  There was no need to do one for a diagnosis because the blood work was definitive for me. 

My response to the gluten-free diet was nothing short of phenomenal.  I healed slowly but well and to this date, do not have a GI doc or had a biopsy.  I am older too.  I refuse to go to GI docs because they did not help me and insisted it was mental and not physical. No trust whatsoever.  I have also never had a doctor question my diagnosis.  They take one look at my blood work and say the same thing......you got Celiac!

As for your relatives, don't get a biopsy of anything just to prove Celiac to them.  Most families do not want to hear they may have it also and almost none of my relatives have ever gotten tested.  They do not want to hear it.  However, my niece was recently diagnosed because her symptoms finally got so bad, she could no longer ignore them. There are others in my family but they choose to live in denial for now.  Whatever......

What Squirmy said about DH clearing up is 100% true.  It takes longer for the IgA deposits to clear form your skin.But clear it will, if you are strict with the diet.  There are other rashes that occur with Celiac, like eczema and psoriasis. Whatever your rash is, it most likely will clear with healing.

Welcome to Celiac World!  

[MrsChoplin]

& this is why I've already fallen in love with this forum!

Insightful.

I believe I have Celiac. I literally felt like I was "home" when I discovered DH Rashes and Celiac Disease. I told my husband, I'm not glad I have this but I'm glad I know why I've had the issues I've had for the past 2 years!

 

I spoke with my husband at length about this over lunch and I think we've decided to skip the GI for now. I DO have an official DX from my Derm. that says I have DH/Celiac so I'm going with that.

We have 3 children and I already had their blood work done last Monday. Waiting on results. I'd be a good portion of my bank account that at least 2 of the 3 have it because of issues over the years that I'm now realizing seem linked to celiac disease.

 

Thanks so much for responding. I appreciate it!

[squirmingitch]

Know that 60% of those with dh test negative on the blood panel. You got lucky & aced the blood panel. I just want you to be aware of that for your kids. You know what to look for in the rash & you have a celiac savvy derm so if one or more of your kids gets "the rash" go to the derm even if the blood panel comes up negative.

[PamMS]

I'm going to piggy back off this topic. My two year old was just diagnosed with celiac. Because of his age and the age of his siblings, we've gone gluten free in our home. His siblings get minimal gluten exposure at school, but are fairly gluten free. The GI doctor suggested our whole family get genetic testing done to check for the celiac gene. I'm worried about the cost and what that would actually tell us. I've read articles that say having the gene doesn't tell you much except that you are at risk of maybe someday developing celiac. Because their diets have already been altered so much, I'm sure the blood test would not be accurate. No one else is exhibiting "signs" of celiac, but I know not everyone does because there are so many signs. Any suggestions?? Thanks!

[cyclinglady]

 

I'm going to piggy back off this topic. My two year old was just diagnosed with celiac. Because of his age and the age of his siblings, we've gone gluten free in our home. His siblings get minimal gluten exposure at school, but are fairly gluten free. The GI doctor suggested our whole family get genetic testing done to check for the celiac gene. I'm worried about the cost and what that would actually tell us. I've read articles that say having the gene doesn't tell you much except that you are at risk of maybe someday developing celiac. Because their diets have already been altered so much, I'm sure the blood test would not be accurate. No one else is exhibiting "signs" of celiac, but I know not everyone does because there are so many signs. Any suggestions?? Thanks!

My home is gluten free (for both me and hubby).  We went really gluten free after my diagnosis as two vs. one won out.  My 15 year old has taken gluten in her lunch daily (here's a frozen croissant -- make your own sandwich when you get to school).  I had her tested (antibodies) a year after my diagnosis.  She was not displaying any symptoms -- nor was she anemic (which was my main symptom).  Before the test, I made sure she was consuming gluten on the weekends by stopping by for lunch or snack for about 3 months.  "Please eat that donut out on the front porch,  and wash your hands right after!"   She tested negative.  She's still in good health and it's been two years.  I have considered getting her tested genetically, but I figure that odds are, she has the genes.   A few more years and she can pay for the testing herself!  I must say we are always on the look out for celiac disease to pop up.  I am probably more concerned about other AI disorders.  Our family is riddled with them.  I take comfort in being aware!  

You are right.  Some 40% of the population has the gene that can "turn on" at anytime for celiac disease.  What will it really tell you?  No more testing for the rest of your life?   That might be worth it.  But the good news is that you have time to consider it.  Your other kids are doing well for now.  

I wonder why your doctor did not recommend testing right when your baby was diagnosed?  

[squirmingitch]

I agree. Just buy prepackaged gluten foods for them that they can take in their lunch & eat away from home. When it comes time for testing, you can up the gluten they get just the same way cyclinglady does with her kid. Take it outside & wash your hands right away afterward. You'll need to do that for about 12 weeks prior to testing. 

[MrsChoplin]

@kareng

Care to weigh in?

I've seen your responses on other posts, I made this one a few weeks back and I am just making sure I'm not making the wrong decision by skipping the endo.

[kareng]

 

@kareng

Care to weigh in?

I've seen your responses on other posts, I made this one a few weeks back and I am just making sure I'm not making the wrong decision by skipping the endo.

If you feel comfortable being diagnosed as Celiac with positive blood results only, great.  You seem to have Celiac.  Is the rash DH?  Without a skin biopsy, you can't be certain.  Even if it goes away gluten-free, it may not be DH.

 

I think the GI/endo is up to you at this point.  If you will behave as if you have Celiac for the rest of your life, then you are good.  You have a doctor that will list you as Celiac for future medical issues or to write you a note if you need one.

[MrsChoplin]

Small update if anyone is interested.....

I've been gluten-free for 1 month now. It sucks, lol.

The rash is still very there but the itching/crawling/burning feeling IS less intense though never totally gone.

I still find myself in denial asking myself if I REALLY have Celiac Disease...... but I do. I know I do. The blood, the rash, the way I feel..... Man. I just want to feel better.

[Gemini]

One of the hardest things to deal with is the amount of time it takes to heal when you are doing so through diet and no meds.  People today expect to feel better within 48 hours but it doesn't happen that way with Celiac Disease.  6 months from now you will be even better.  Add another 6 months to that and improvement should continue. That is how you have to look at recovery and feeling better. Not easy to hear but I am not going to lie or sugarcoat it.  But make no mistake.....with those blood results, you have Celiac. It would have been nice if the derm had biopsied the rash site to bolster the diagnosis for you but the blood work does not lie.  Hang in there.......you are getting better as we speak! 

[MrsChoplin]

1 hour ago, Gemini said:

 But make no mistake.....with those blood results, you have Celiac. It would have been nice if the derm had biopsied the rash site to bolster the diagnosis for you but the blood work does not lie.  Hang in there.......you are getting better as we speak! 

I appreciate it! Thank you.

[cstark]

On ‎5‎/‎11‎/‎2016 at 1:23 PM, Gemini said:

The reason they keep using the term "clearly Celiac" is because you have both a positive tTg and EMA.  That is a slam dunk for Celiac Disease, without the biopsy.  No other disease will cause a positive on the EMA.

I was in the same boat as you 11 years ago. I do not have DH.  I was so upset with the lack of help from the AMA and was wasting away from classic Celiac, that I found out there was a blood test and asked my thyroid doc to do it. I was extremely ill at the time. They ran the full panel, which I paid for out of pocket to get it done FAST, and failed every test by huge numbers. That was all I needed and went gluten-free.  Never had the biopsy and never looked back.  I figured if I continued to have GI issues after going gluten free, then I could still ask for a scope to see what else may be going on.  There was no need to do one for a diagnosis because the blood work was definitive for me. 

My response to the gluten-free diet was nothing short of phenomenal.  I healed slowly but well and to this date, do not have a GI doc or had a biopsy.  I am older too.  I refuse to go to GI docs because they did not help me and insisted it was mental and not physical. No trust whatsoever.  I have also never had a doctor question my diagnosis.  They take one look at my blood work and say the same thing......you got Celiac!

As for your relatives, don't get a biopsy of anything just to prove Celiac to them.  Most families do not want to hear they may have it also and almost none of my relatives have ever gotten tested.  They do not want to hear it.  However, my niece was recently diagnosed because her symptoms finally got so bad, she could no longer ignore them. There are others in my family but they choose to live in denial for now.  Whatever......

What Squirmy said about DH clearing up is 100% true.  It takes longer for the IgA deposits to clear form your skin.But clear it will, if you are strict with the diet.  There are other rashes that occur with Celiac, like eczema and psoriasis. Whatever your rash is, it most likely will clear with healing.

Welcome to Celiac World!  

It is interesting that you stated eczema and psoriasis in the last portion of your blog.  All of the sudden, my psoriasis has gone into hyperactive mode.  I have been gluten free since end of October of last year.  Why would the psoriasis all of the sudden flair up with no rhyme or reason?  Would there be something else other than gluten sensitivity/Celiac to be concerned about?

I have dealt with the psoriasis pretty much all my life, but it has never been this active for quite some time.

[cstark]

2 hours ago, MrsChoplin said:

Small update if anyone is interested.....

I've been gluten-free for 1 month now. It sucks, lol.

The rash is still very there but the itching/crawling/burning feeling IS less intense though never totally gone.

I still find myself in denial asking myself if I REALLY have Celiac Disease...... but I do. I know I do. The blood, the rash, the way I feel..... Man. I just want to feel better.

You will.  Just hang in there.  It took at least 9 months for my symptoms to diminish because the body needs to work out any residual gluten molecules lurking around in your system.   Don't give up.

[Gemini]

26 minutes ago, cstark said:

It is interesting that you stated eczema and psoriasis in the last portion of your blog.  All of the sudden, my psoriasis has gone into hyperactive mode.  I have been gluten free since end of October of last year.  Why would the psoriasis all of the sudden flair up with no rhyme or reason?  Would there be something else other than gluten sensitivity/Celiac to be concerned about?

I have dealt with the psoriasis pretty much all my life, but it has never been this active for quite some time.

Have you kept track of what you have been eating lately, since the psoriasis flare?  I know psoriasis has been linked to Celiac because that is just what happens with foods allergies/intolerances........they tend to produce rashes.  I have a problem with hives but they are triggered when I am exposed to molds/humidity, which is kind of hard to avoid right now. Maybe there is another trigger for you besides gluten?  Were you accidentally glutened or cc'd by something?