Tests, tests, more tests and more questions!

[Casy]

Ok, so long story, but I'm hoping some knowledgeable folks can chime in and tell me if a) I'm not crazy for thinking this sounds a lot like celiac and not a lot like anything else and  are the tests being run the right ones?

I had malabsorbtion symptoms my whole life, rashes on the inside of my elbows and knees, chronic constipation, chelisis, brittle cracking nails, my hair sheds a ton, irritation on the edges of my scalp, blistery rashes on my hands, low iron, migraines, low blood sugar, bloating, painful gas (like bring me to my knees type). I pretty much just accepted it as my normal, and when I went to get the skin issues checked out in my early 30s, I was just told it was eczema and sent away. The rashes on the insides of my elbows and knees went away when I was about 15 or so, but in my 20s I started seeing a blistery, itchy rash on my elbows occasionally. Also in my 30s, realized I had infertility issues. It took us four years to get pregnant.

Fast forward to 2015, and I have a terrible outbreak of GI symptoms (always constipation with me, with the occasional horrible D experience sprinkled in) along with a pretty bad itchy rash on both elbows. I start researching and find that a lot of what I have experienced sounds like DH/celiac. By the time I get my referral in and appointment to the GI doc, I've decided to cut milk out of my diet. I thought back to when I had the last period of time where I had no GI symptoms, and it was when I was last deployed. The dairy in the chow hall was either expired or near it, so I lived on eggs, rice, and chicken, and hot sauce. ;p. I figured it was worth a try because my son can't tolerate milk or soy protien, and maybe it's hereditary. Once I cut out milk, and I saw a pretty impressive relief of most of my symptoms. The chelisis is gone, my rash disappears, bloating is much better, gas pains are gone. I get tested for celiac- negative, lactose intolerance- negative, SIBO- positive. Two rounds of antibiotics 6 months apart and my SIBO (methane type) clears up. Basically they said I had IBS-C and my skin were likely unrelated. I'm pretty sure my issue with milk is casein-related, because my son has the same issues with casein, and I sure have GI issues when I drink it. (TMI... mucousy rabbit poo).

So I figure most of my issues have cleared up, no active rashes, good, right? Nope.

Since then, I had a couple outbreaks on my elbows, but they went away fairly quickly, My scalp rash thing ebbed and flowed, and my hair still sheds a ridiculous amount. About a month ago, I had another  outbreak on both elbows, a couple blisters on my hands, pretty bad migrane, and the rash stayed. After a month of rash, I finally contacted my doc and said "look, this rash is active, please take a look." Just as if it sensed it, the rash started clearing, that same day. :-< By the time I saw her a week and a half later, it was gone, save for a couple scabs.

So, good news is my doc disagreed with the GI doc and said it sounded auto-immune to her. I took pictures, and was able to at least show what it looked like. I'm military, so I get what I get for referrals, labs, and doctors, but she's luckily very good and knowledgeable. She ran the following tests:

Complement Panel: Awaiting results

C-Reactive Protein: Awaiting results

Celiac Disease Ab IgA Panel: Awaiting results

Tissue Transglutaminase Ab IgA: Awaiting results
Gliadin Ab IgA: Awaiting results

Endomysial Ab IgA: Awaiting results

Rheumatoid Factor: NEG

Comprehensive Metabolic Panel W/eGFR: Normal with the exception of a higher than normal Urea Nitrogen/Creatinine (indicates poor kidney function or bleeding in intestines (ding ding ding) My GFR was normal, so kidneys are probably okay.

ESR: 9 (normal is 0-20) Indicates inflammation

 

Here are a couple of pictures, although you can't see the little clear blisters very well. Obviously, I was scratching. These are same rash, 1 month apart. It's been lots worse. I'd call this a mild outbreak.

[Jmg]

Hi Casy and welcome!

I say welcome, you've been here before! Welcome back then

You probably know already that you tick a lot of the celiac boxes (so answer to a) is no you're not crazy ). It's a bugger to diagnose however and you have to be eating gluten for the tests to work. So your previous test when the mess hall diet was eggs rice and chicken may not have been accurate. 

I collected some faqs on the diagnosis process sometime ago. They're here along with a couple of links that may be of use in regard to the second question about the tests available: 

There's also the board FAQ stickied above of course: https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/

 If I were you I'd be tempted to try cutting gluten. My advice would be not to do that at least just yet - if the test comes back positive they may want to run an endoscopy or other blood test. It's not pleasant to go back on it if its a problem for you, the 'gluten challenge' in other words. 

One final point, I don't know what a positive diagnosis would do for your military career prospects. Maybe thats something you should think about or discuss with someone in confidence? The diagnosis can't do much for you practically, treatment is to not consume gluten. So you may be able to not pursue the diagnosis and just do your own test with avoiding gluten. Although I don't know how practical that is with MRE's etc... There may be others here who can help with that question. 

Oh and theres a genetic element, so your son's GI issues may also be related...

Best of luck!

Matt

 

[Casy]

Matt,

No, I was eating gluten (and still am) when the tests were being done. I haven't cut it out because I know I'd never get a diagnosis if I did, and I don't want to if I don't have to. I love food.   At this point, I just want to know the root cause, whatever it is. I don't want to give up gluten if it's not the problem. As far as military career, there is no impact. There is no reason why a dietary restriction would effect me, so that's not an issue. Thanks for the links! I'll definitely read (and thanks for affirming I'm not crazy!)

 

 

[Jmg]

8 minutes ago, Casy said:

I haven't cut it out because I know I'd never get a diagnosis if I did, and I don't want to if I don't have to. I love food.   At this point, I just want to know the root cause, whatever it is. I don't want to give up gluten if it's not the problem.

Of course you shouldn't cut gluten unless you need to. But, there's one point I tried to make in the FAQ but bears repeating. If you go through the diagnostic process and test negative for celiac, please give serious consideration to trialling the gluten free diet regardless.

The reason for this is that some people test negative, but gluten is still the problem.  If you were one of those people you'd have a lifetime of issues but never find the truth because of the negative test. I am one of those people and it was my reaction to the challenge which finally settled any doubts. 

As for the diet itself, yes its a pain, yes there's some foods that aren't quite as good as before, but after some time you forget and for me now I can sit and enjoy a plate of pasta or a pizza without feeling I'm settling for second best and in any case, its totally worth it to feel healthy.  There isn't a cheesecake in existence that would tempt me back. 

13 minutes ago, Casy said:

(and thanks for affirming I'm not crazy!)

 

 

Now steady on, I only meant in terms of suspecting celiac, I make no wider claims 

 

[Victoria1234]

Casy I just want to say on this Memorial Day, thank you for what you do! 

And good luck finding out what's going on with your body!

[Casy]

1 hour ago, Victoria1234 said:

Casy I just want to say on this Memorial Day, thank you for what you do! 

And good luck finding out what's going on with your body!

Thank you! 

[Casy]

1 hour ago, Jmg said:

Of course you shouldn't cut gluten unless you need to. But, there's one point I tried to make in the FAQ but bears repeating. If you go through the diagnostic process and test negative for celiac, please give serious consideration to trialling the gluten free diet regardless.

The reason for this is that some people test negative, but gluten is still the problem.  If you were one of those people you'd have a lifetime of issues but never find the truth because of the negative test. I am one of those people and it was my reaction to the challenge which finally settled any doubts. 

As for the diet itself, yes its a pain, yes there's some foods that aren't quite as good as before, but after some time you forget and for me now I can sit and enjoy a plate of pasta or a pizza without feeling I'm settling for second best and in any case, its totally worth it to feel healthy.  There isn't a cheesecake in existence that would tempt me back. 

Now steady on, I only meant in terms of suspecting celiac, I make no wider claims 

 

:-D I'm hoping the labs will show something, but I'm thinking you're right and I'll just have to go gluten-free if there're no "evidence". My doc seemed willing to ask for a skin biopsy if it flares again, so that may do it if the labs don't. The tricky thing is most of my symptoms are gone since I cut out milk, except the rash crops up every now and then, my scalp never calms down completely, and my hair falls out. Huh, I guess that's still pretty unsatisfactory, lol.  I may just need to cut out the gluten after we get through the testing.