Partially(?) Diagnosed & new itch no rash

[vgoebel]

Hello everyone!  I am new to this site and only about 2 months into my research on Celiac disease.  I am a 38 year old female. After months of having, what I thought was, unrelated symptoms and lots of bloodwork and even a stress test and chest CT scan, I was told my Celiac blood panel came back positive for Celiac disease.  Only one of the categories was positive: Deamidated Gliadin IgA was 37.  Anyway, it was a shock, but also helped make sense of some issues my 11 year old has had in the last few years (assuming I do habe celiac and she has been passed down the gene). I am scheduled for a endoscopy/biopsy on Dec 22.  It was the soonest they could get me in 2 months ago when I got my bloodwork back. So, I have remained eating gluten and have even been enjoying more of it than I probably needed to knowing it is the last of it I will probably get.  From what I understand a positive blood test is fairly accurate and I'm probably not going to get out of this diagnosis. 

My new issue: The last couple of weeks, I have began itching on my face and ears.  No rash whatsoever.   Just turns a little red from all of the rubbing and itching.  Apparently my legs have itched me at night because I have woke up with scratches on them.  During the day, it really is just my face that is driving me crazy.  It feels hot after I itch kind of like a sunburn.  Everything I have read sounds like it is accompanied by a rash (DH?). I feel like this is deeper than the skin.  Like creepy crawly feeling. Anyone experience this without a rash?  I have had so many ailments over the last 8 months that I can't stand to think this is something new.  To be totally honest though, most of my problems may be gluten related in hindsight.  We won't know till I am off gluten. I guess. 

[cyclinglady]

18 hours ago, vgoebel said:

Hello everyone!  I am new to this site and only about 2 months into my research on Celiac disease.  I am a 38 year old female. After months of having, what I thought was, unrelated symptoms and lots of bloodwork and even a stress test and chest CT scan, I was told my Celiac blood panel came back positive for Celiac disease.  Only one of the categories was positive: Deamidated Gliadin IgA was 37.  Anyway, it was a shock, but also helped make sense of some issues my 11 year old has had in the last few years (assuming I do habe celiac and she has been passed down the gene). I am scheduled for a endoscopy/biopsy on Dec 22.  It was the soonest they could get me in 2 months ago when I got my bloodwork back. So, I have remained eating gluten and have even been enjoying more of it than I probably needed to knowing it is the last of it I will probably get.  From what I understand a positive blood test is fairly accurate and I'm probably not going to get out of this diagnosis. 

My new issue: The last couple of weeks, I have began itching on my face and ears.  No rash whatsoever.   Just turns a little red from all of the rubbing and itching.  Apparently my legs have itched me at night because I have woke up with scratches on them.  During the day, it really is just my face that is driving me crazy.  It feels hot after I itch kind of like a sunburn.  Everything I have read sounds like it is accompanied by a rash (DH?). I feel like this is deeper than the skin.  Like creepy crawly feeling. Anyone experience this without a rash?  I have had so many ailments over the last 8 months that I can't stand to think this is something new.  To be totally honest though, most of my problems may be gluten related in hindsight.  We won't know till I am off gluten. I guess. 

Welcome!  Yes, you can have itching but not have DH.  This happens to me!  

Enjoy that gluten!  I was anemic when I went in for a routine colonoscopy (yep, over 50).  I had only one positive on the celiac panel — the DGP IgA.  Because of work issues, I scheduled my endoscopy and colonoscopy seven weeks out.  I ate all my gluten favorites.  I went overboard and consumed literally, a loaf of sourdough bread a day!  I bought boxes of cookies, baked, stopped at restaurants and ate all the gluten I could and donated the opened boxes to family and friends.  (I did not eat entire boxes of cookies!)  By the end of the seven weeks, I was so sick!  Lots of GI issues. Ugh!  I was sick of gluten!  

My biopsies revealed a Marsh Stage IIIB just with that one positive DGP IgA.  In fact, even in follow-up testing, it is the only test that I get a positive on.  

Read up and learn about the diet.  Soon, you will feel much better!  But....give it Time.  It took time to get sick and will take time to heal!  Be patient!  ?

First-degree family members should get tested every few years fen if asymptomatic.  

[vgoebel]

Thank you for the response.  I am definitely counting the days until I can officially know for sure and move on with the new diet. I am tired of feeling bad, so it's getting easier to accept the drastic diet changes.  I feel lucky that my doctor found it so quickly and I actually got a positive blood test. After reading this site, I can see that is something to be thankful for. I never thought,  I would be hoping to have damage to my intestines, or at least enough to get a diagnosis ? and move on.  But, here's hoping?

[ravenwoodglass]

3 hours ago, vgoebel said:

Thank you for the response.  I am definitely counting the days until I can officially know for sure and move on with the new diet. I am tired of feeling bad, so it's getting easier to accept the drastic diet changes.  I feel lucky that my doctor found it so quickly and I actually got a positive blood test. After reading this site, I can see that is something to be thankful for. I never thought,  I would be hoping to have damage to my intestines, or at least enough to get a diagnosis ? and move on.  But, here's hoping?

Please keep in mind that there are false negatives on biopsy and don't discount the positive blood work and the diagnosis that your doctor gave you based on those results if your biopsies should come back negative or inconclusive. You can get back on the diet the day the biopsies are taken. You don't have to wait for the results.

[vgoebel]

I had a glass of wine with dinner last night and after a few sips it immediately made my face start burning. If I itched it it felt painful, like scratching a sunburn.  At that point I had not eaten anything.  The burning pain went away after about 20 min,  but itching continued and my face just felt hot for the rest of the night.  I don't have alcohol frequently, but I have never had that reaction. I have had a general warm feeling, but not a burning PAIN. 

[Ennis-TX]

1 hour ago, vgoebel said:

I had a glass of wine with dinner last night and after a few sips it immediately made my face start burning. If I itched it it felt painful, like scratching a sunburn.  At that point I had not eaten anything.  The burning pain went away after about 20 min,  but itching continued and my face just felt hot for the rest of the night.  I don't have alcohol frequently, but I have never had that reaction. I have had a general warm feeling, but not a burning PAIN. 

Sometimes with AI disease other issues crop up, histamine responses, and mast cell syndrome are a few, the wine brought this to mind. Also issues with tannins in wines affect many of us.  Do some research into histamine intolerance, low histamine diets. Keep a food journal and see how and what foods effect you and cause what symptoms. With celiac disease the longer your keep eating gluten over the years other issues with various foods, and aspects of foods turn up. NOTE many of these secondary issues go away over years of healing, but for now start finding and keeping track of other food issues, like various intolerance, and allergies.

[cyclinglady]

Unfortunately celiac disease come with a lot of collateral damage.  A damaged gut can set you up with many new issues that can resolve with healing.  Ennis is right about checking into a histamine intolerance or even minor Mass Cell Activation Disorder.  Best to avoid those triggers for now.  

[vgoebel]

An update: 

I got my endoscopy done and just had my results come back with everything being completely normal.  I see my internal medicine doctor to go over results tomorrow.   It was already scheduled for me to see her.  This is the gray zone I DID NOT want to be in.  The GI office told me I can keep eating gluten because there is no evidence of Celiac.  They had zero explanation for the positive DGP IgA and negative biopsy combination.  I do not have classical GI symptoms all the time, but my daughter does.  I was hoping my positive would help in diagnosing her.  She has had a scope a couple of years ago and it was normal.  11 year olds should not have random bouts of vomiting, among other problems.  

Hoping my IM doc can help tomorrow with perspective.  She is the one who told me that a positive blood test cannot really point to anything else, but celiac.  She did also say that some people come back (like me) in the "gray zone".  She made it sound like it would be up to her then to decide on a diagnosis. Maybe trying gluten-free for 6 weeks...etc. Just hard because I have symptoms that are not classical and are more difficult to distinguish. 

[cyclinglady]

I am sorry that your diagnosis is not clear.  I think you need to ask about  the number of biopsies actually taken and from what part of the small intestine.   Villi damage can be patchy and damaged areas missed.  Ask if  the pathologist correctly cut the tissue samples (this has happened to other members!).  If many biopsies were evaluated, consider trialing the gluten-free diet for three to six months and then taking the DGP IgA test again.  It should normalize on a gluten-free diet.  

Make sure other things were ruled out that could mimic celiac disease (e.g. Crohn’s).  

I had a positive DGP IgA on my initial celiac panel (all other celiac antibodies testing were normal), yet I had some patches of moderate and severe areas.  I still continue  to only ever get an elevated DGP IgA each time  I have been tested after a gluten exposure.  Never had a positive EMA or TTG ever!  

I think it odd that you are discussing results with your internal  medicine doctor and not the GI.  

Read more from this interview with Dr. Crowe, who is not only a celiac expert, but is now the President of the GI Association.   She touches on  botched biopsies.  

Open Original Shared Link

[Jmg]

16 hours ago, vgoebel said:

Hoping my IM doc can help tomorrow with perspective.  She is the one who told me that a positive blood test cannot really point to anything else, but celiac.  She did also say that some people come back (like me) in the "gray zone".  She made it sound like it would be up to her then to decide on a diagnosis. Maybe trying gluten-free for 6 weeks...etc. Just hard because I have symptoms that are not classical and are more difficult to distinguish. 

Hi

I wound up in that grey zone following a negative endoscopy, which came as a massive surprise as I'd gone back on gluten for the test and experienced a big reaction. My GI consultant told me the scope was negative for celiac but that based on my response he thought I should be gluten free for life, needless to say I agreed with him having experienced how I felt on and off it.

CL above has pointed out that the celiac diagnosis process is not perfect, so it's possible that you have it but the scope missed it, or that there's damage beyond the scope's reach, which a capsule endoscopy could reveal. Or you may be experiencing NCGS which has similar symptoms to celiac but not the damage to the intestines which the scope is looking for. 

If your IM doctor thinks that testing is at an end then consider trialling the gluten-free diet to see if your symptoms respond. You may get an answer of sorts that way, at least one sufficient to let you feel better which is the main thing.

Best wishes from the grey zone!

Matt

[cyclinglady]

Matt is absolutely correct.  I just wanted to add that my hubby went gluten free  12 years prior to my diagnosis.  His GP and my allergist suggested the diet and never discussed or tested for celiac disease.  The diet worked.  Does he have celiac disease or NCGS?  Who knows?  What we do know is that the diet works for him and it has been 17 years!  

Your comment about not having typical celiac disease symptoms struck home.  I was only anemic.  I was at the GI’s office for a routine colonoscopy (all my friends were getting them!) when he suggested celiac disease.  I was shocked!  I had no GI issues except for some identified intolerances.  Once on the diet, little things that I attributed to aging were revealed. Two months later, fractures doing nothing (osteoporosis from celiac disease). 

If the diet does not work, keep advocating for your health.  

After my diagnosis, I encouraged other family members to get tested.  My niece had been having issues for several years (teen).  I thought for sure that she had celiac disease or at least the gallbladder family curse.  All tests were negative (not that she still could not develop celiac disease in her lifetime).  After four PED GIs and many an ER visit, she had a pill camera which revealed Crohn’s damage well beyond the reach of both scopes.  Her symptoms were not in alignment with standard Crohn’s symptoms either as she had just random attacks (which included vomiting) and lasted just hours and if I recall, were brought on by excitement (oddly, fun things and not the usual stressors).  

Why share this?  Her Mom persisted.  She knew her kid was sick and that it was “not in her head”.  

The good news is that my niece is responding well to her treatment!  No more ER visits!