Could it be Celiac?

[Lillya]

Hi everyone. Long time lurker, finally posting after crying out of frustration for another doctor simply saying "I don't know what's wrong with you." I'm a 21 year old woman, near central Texas if anyone has Dr. recommendations.

I have been on a gluten-free diet for a year now, diagnosed with NCGS. I tested negative for celiac via several blood tests, and despite asking two doctors have said I don't need a biopsy.

My original symptoms:

Constipation, diarrhea, severe gas pains (had me on the floor crying on occasion), regular foot and leg cramps, canker sores in my mouth (I had 3 a time once), depression, anxiety, chronic fatigue, and a strange rash on my face that, to this day, no doctor has been able to identify!

My rash started on my cheekbones and eventually spread to my forehead, temples, and occasionally down my neck or behind my ears. It is red, raised bumps that occasionally form whiteheads, but often just turn into large red spots. It is periodically itchy and occasionally burns, but not as intensely as DH. It gets worse as I scatch it, but it isn't frequently intense enough to warrant scratching. It isn't lupus, although I was tested for lupus A LOT.

So, then we have a crap ton of bloodwork. Autoimmune panels, hormone levels, I can't even remember all they have tested me for. No. Answers. 

The only abnormal results were

-101 total cholesterol, which is insane. Multiple doctors told me it wasn't something to be concerned about.

-Low IgA. It was JUST outside of normal range though so I was told it wasn't enough to mess up the test.

-Low ALP levels. Was also told this wasn't something to be concerned about. Interestingly, after a year of being gluten-free my levels were shown to be normal.

- Vitamin D deficiency. This was a recent discovery.

Since they couldn't find anything wrong with me, but I did seem to improve on a gluten-free diet, I was given the label of NCGS. When I went off gluten, it was magical. EVERYTHING went away, even things I didn't know were connected to gluten, like the horrible cystic acne on my back that had refused to go away before. For the first time in my life, I was buying backless shirts and tank tops. I felt SO good.

My rash would occasionally flare up, a minuscule amount, but I felt pretty good. 

I went gluten-free without worrying too much about cross-contamination. I was told that since I wasn't celiac, it wouldn't be a problem. I have been more careful than I was told to be, but I still share butter with gluten-free people and will eat at restaurants that might cross-contaminate. I was fine like this for a while.

Then, a few months ago, the rash comes back full force. I keep getting random flare-ups, occasional acne again, and mild GI symptoms. The rash has been a major concern. It's uncomfortable and I'm sick of it. 

Went back to two different doctors, got more blood tests that told us nothing, and when I asked about getting a biopsy to confirm it isn't celiac, they both told me it wasn't necessary unless I start having blood in my stool. 

I got glutened on Sunday when I accidentally put rice with soy sauce in my mouth. I spat it out, but that was enough. Yesterday and today I'm having sharp pain when I go to the bathroom. My rash made an appearance. And now I'm tired as hell. I've been told to try more elimination diets to test for other sensitivities, but in my gut, I just keep coming back to Celiac.

I have been planning to tighten up on my diet: get my own condiments, only cook at home on dedicated pans, but I also feel like this gives me no leverage with doctors. If I don't show extreme symptoms, they don't think I should be tested. 

I'm considering at this point, eating gluten again just to see what will happen. I know it'll be horrible but I feel like if it's bad enough maybe doctors will take me seriously again. They keep acting like I need to have awful symptoms but I'm not currently eating gluten???

I just don't know. I feel so helpless and unheard. I'm sick of being told "maybe try this I guess?" I just want answers. 

Please, tell me what you guys think. Share your experiences. I just need to be pointed in some kind of directions, because my doctors can't do that for me apparently. 

[tessa25]

You should get copies of all of your tests.

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You have to be eating gluten daily for 12 weeks before the blood test. A positive on any one blood test should lead to a gastroenterologist doing an endoscopy /biopsies to confirm a celiac diagnosis.

You can check if you had the above tests. Some people only have a positive on one test.

And you can just go strict gluten free from now on and see if things get better.

 

[Lillya]

51 minutes ago, tessa25 said:

You should get copies of all of your tests.

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You have to be eating gluten daily for 12 weeks before the blood test. A positive on any one blood test should lead to a gastroenterologist doing an endoscopy /biopsies to confirm a celiac diagnosis.

You can check if you had the above tests. Some people only have a positive on one test.

And you can just go strict gluten free from now on and see if things get better.

 

2

I found my results. I had been locked out of the online portal that allowed me to view them, but I finally figured out the security questions. This was my second round of testing.

IgA, tTG IgA, DGP IgA, AGA IgA, and AGA IgG were all normal in this testing. IgA was a little outside of the normal range in my first set of testing, but I don't have access to those tests anymore.

Would it be worth asking about the DGP IgG and EMA tests?

[Ennis-TX]

2 hours ago, Lillya said:

Hi everyone. Long time lurker, finally posting after crying out of frustration for another doctor simply saying "I don't know what's wrong with you." I'm a 21 year old woman, near central Texas if anyone has Dr. recommendations.

I have been on a gluten-free diet for a year now, diagnosed with NCGS. I tested negative for celiac via several blood tests, and despite asking two doctors have said I don't need a biopsy.

My original symptoms:

Constipation, diarrhea, severe gas pains (had me on the floor crying on occasion), regular foot and leg cramps, canker sores in my mouth (I had 3 a time once), depression, anxiety, chronic fatigue, and a strange rash on my face that, to this day, no doctor has been able to identify!

My rash started on my cheekbones and eventually spread to my forehead, temples, and occasionally down my neck or behind my ears. It is red, raised bumps that occasionally form whiteheads, but often just turn into large red spots. It is periodically itchy and occasionally burns, but not as intensely as DH. It gets worse as I scatch it, but it isn't frequently intense enough to warrant scratching. It isn't lupus, although I was tested for lupus A LOT.

So, then we have a crap ton of bloodwork. Autoimmune panels, hormone levels, I can't even remember all they have tested me for. No. Answers. 

The only abnormal results were

-101 total cholesterol, which is insane. Multiple doctors told me it wasn't something to be concerned about.

-Low IgA. It was JUST outside of normal range though so I was told it wasn't enough to mess up the test.

-Low ALP levels. Was also told this wasn't something to be concerned about. Interestingly, after a year of being gluten-free my levels were shown to be normal.

- Vitamin D deficiency. This was a recent discovery.

Since they couldn't find anything wrong with me, but I did seem to improve on a gluten-free diet, I was given the label of NCGS. When I went off gluten, it was magical. EVERYTHING went away, even things I didn't know were connected to gluten, like the horrible cystic acne on my back that had refused to go away before. For the first time in my life, I was buying backless shirts and tank tops. I felt SO good.

My rash would occasionally flare up, a minuscule amount, but I felt pretty good. 

I went gluten-free without worrying too much about cross-contamination. I was told that since I wasn't celiac, it wouldn't be a problem. I have been more careful than I was told to be, but I still share butter with gluten-free people and will eat at restaurants that might cross-contaminate. I was fine like this for a while.

Then, a few months ago, the rash comes back full force. I keep getting random flare-ups, occasional acne again, and mild GI symptoms. The rash has been a major concern. It's uncomfortable and I'm sick of it. 

Went back to two different doctors, got more blood tests that told us nothing, and when I asked about getting a biopsy to confirm it isn't celiac, they both told me it wasn't necessary unless I start having blood in my stool. 

I got glutened on Sunday when I accidentally put rice with soy sauce in my mouth. I spat it out, but that was enough. Yesterday and today I'm having sharp pain when I go to the bathroom. My rash made an appearance. And now I'm tired as hell. I've been told to try more elimination diets to test for other sensitivities, but in my gut, I just keep coming back to Celiac.

I have been planning to tighten up on my diet: get my own condiments, only cook at home on dedicated pans, but I also feel like this gives me no leverage with doctors. If I don't show extreme symptoms, they don't think I should be tested. 

I'm considering at this point, eating gluten again just to see what will happen. I know it'll be horrible but I feel like if it's bad enough maybe doctors will take me seriously again. They keep acting like I need to have awful symptoms but I'm not currently eating gluten???

I just don't know. I feel so helpless and unheard. I'm sick of being told "maybe try this I guess?" I just want answers. 

Please, tell me what you guys think. Share your experiences. I just need to be pointed in some kind of directions, because my doctors can't do that for me apparently. 

OK it really depends how long you have been gluten free and how gluten free you were. From what you have told me here I can say you probably have celiac. Some people test negative on the blood test despite gluten in the diet for the recomended 12 weeks but show damaged villi in the intestines. You might have to do the gluten challenge and get the endoscope biopsy. Another thought is perhaps that rash is DH, if this is the case your luck as a good dermatologist who is celiac savy can do a skin biopsy next to the the rash (NOT ON IT) and test for the antibodies that way. Those with DH will often not have as much intestinal damage so this might be a better approach.
Open Original Shared Link

Open Original Shared Link
As to your sensitivity.....almost all of us, get MUCH more sensitive with worse symptoms after going gluten free...then getting the tiniest amount and our body screams WTF and seems to rampage with it. SO double check the newbie 101 thread and see about getting that dedicated set up and getting strict with this diet if you do not wish to try testing again.

I have a bit of a group thing for the DFW area here in texas on this forum. I also know some local facebook groups and support groups I can introduce you to if your in the DFW area. I run a small cottage home gluten free bakery in Ennis, and often cook for others.

[Lillya]

I'm adding some rash pictures to see if anyone recognizes what's up.

[Lillya]

8 minutes ago, Ennis_TX said:

OK it really depends how long you have been gluten free and how gluten free you were. From what you have told me here I can say you probably have celiac. Some people test negative on the blood test despite gluten in the diet for the recomended 12 weeks but show damaged villi in the intestines. You might have to do the gluten challenge and get the endoscope biopsy. Another thought is perhaps that rash is DH, if this is the case your luck as a good dermatologist who is celiac savy can do a skin biopsy next to the the rash (NOT ON IT) and test for the antibodies that way. Those with DH will often not have as much intestinal damage so this might be a better approach.
Open Original Shared Link

Open Original Shared Link
As to your sensitivity.....almost all of us, get MUCH more sensitive with worse symptoms after going gluten free...then getting the tiniest amount and our body screams WTF and seems to rampage with it. SO double check the newbie 101 thread and see about getting that dedicated set up and getting strict with this diet if you do not wish to try testing again.

I have a bit of a group thing for the DFW area here in texas on this forum. I also know some local facebook groups and support groups I can introduce you to if your in the DFW area. I run a small cottage home gluten free bakery in Ennis, and often cook for others.

14

I've been gluten-free for a year now. I posted some images of my rash. I haven't been sure if it could be DH since it isn't as intensely itchy as DH seems to be usually. I'll try to find some celiac-knowledgeable doctors in my area.. It's been a struggle so far but hopefully it'll help.

[cyclinglady]

It looks and sounds like Rosacea but honestly, it could be anything and I am just a crazy lady on the internet.   There are different types of Rosacea.  It can flare with different foods.  They think now it is linked to GI issues or autoimmune.  So, in theory, gluten could set it off or it could be another food. 

Open Original Shared Link

I have Rosacea, diagnosed 30 years ago.    It flares when I consume garlic, onion, red wine, or hot peppers.   Those are my personal triggers.  The spot will itch first and then a pustule will appear. Inflammation is evident with bumps and some redness.  It usually resolves in a few days. 

It sounds like you need to really crack down on the gluten-free diet.  Keep a record of other possible food intolerances.  You might find that your face improves along with your general health.  

Like Ennis, I think you probably have celiac disease.  My hubby has been gluten-free for 17 years, long before my diagnosis.  He is not officially diagnosed, but it is obvious that gluten makes him sick.  So...stop eating gluten or taking risks.  So hard when you are young, but good health is worth it.  

[Lillya]

15 minutes ago, cyclinglady said:

It looks and sounds like Rosacea but honestly, it could be anything and I am just a crazy lady on the internet.   There are different types of Rosacea.  It can flare with different foods.  They think now it is linked to GI issues or autoimmune.  So, in theory, gluten could set it off or it could be another food. 

Open Original Shared Link

I have Rosacea, diagnosed 30 years ago.    It flares when I consume garlic, onion, red wine, or hot peppers.   Those are my personal triggers.  The spot will itch first and then a pustule will appear. Inflammation is evident with bumps and some redness.  It usually resolves in a few days. 

It sounds like you need to really crack down on the gluten-free diet.  Keep a record of other possible food intolerances.  You might find that your face improves along with your general health.  

Like Ennis, I think you probably have celiac disease.  My hubby has been gluten-free for 17 years, long before my diagnosis.  He is not officially diagnosed, but it is obvious that gluten makes him sick.  So...stop eating gluten or taking risks.  So hard when you are young, but good health is worth it.  

Doctors so far have definitely thought my rash seems more like an allergic reacions/contact dermatitis than rosacea. I also don't seem to have any of the typical rosacea flair ups and at this point the rash is almost a constant. Rosecsa treatment did nothing. The only thing that has worked was when I originally went gluten free.

I know everyone here is right. I definitely need to tighten up with my diet. I still am interested in perusing a formal diagnosis though.