Do I Get Testing Or Not?

[zachattack]

Hi all. I've been wondering about my symptoms for years, and am finally seeing a GI next week. I thought it was gluten about a year ago, and cut it out, and my symptoms went away for a bit, but have returned lately. I thought maybe I was getting accidentally glutened. I'm starting to consume TINY bits of gluten every day so I don't get a false negative while doing my testing and I'm MISERABLE. This is what I'm going through:

-Bloating and fullness after eating
-A rash all over my legs, arms, butt (it kinda looks like this, but it doesn't itch: Open Original Shared Link
-Itching, tingling face
-Diarrhea sometimes, but not always
-Often undigested food in tarry, black stools (sorry if TMI)
-Itchy, often sore throat that sometimes feels like it's closing up
-Stomach aches and cramps (often extremely painful)

Does this sound familliar to anyone else? Lots of people in my family think it's just IBS and purely psychological bulls$#&, but I don't think so. Just looking for some validation here as to whether I should get the testing. My girlfriend's cousin just tested positive and the only symptom he ever had was the rash.

If it is celiac, is there a possibility I've severely damaged my guts? (The undigested food makes me real... uneasy.)

Thanks a ton for the help.

[NatureChick]

It sounds as if you have been doing a little mini-experiment on yourself to see what your reactions might be. Unfortunately, there really isn't a way to do an armchair diagnosis.

• Bloating and fullness could be celiac, but can be a reaction to lots of different things.
• Rash - can't see the picture, but rashes can also be a symptom of an allergic or autoimmune reaction.
• Diarrhea might only be a symptom if larger amounts of gluten are consumed, but can also be caused by all sorts of food intolerances and digestive problems.

• The stools - tarry and black normally means that there is bleeding somewhere in the digestive tract.
• Itchy, sore throat is an indication of an allergy.
• Stomach aches and cramps - could be celiac-related but can also be caused by ulcers or vitamin deficiencies (B12) and plenty of other things.

For now I'd keep an open mind about possible causes and hold off on doing a gluten challenge until you talk to the GI. He may start with doing some sort of stool test to see if there is blood present. But while there, ask him to test you for vitamin deficiencies as well (They can also help narrow in on possible causes because some are more prevalent in particular health problems). And because of the itchy throat, seeing an allergist may be another appointment to make before considering eating wheat at all. If you are getting a scratchy throat from just a crumb and you do have a wheat allergy, eating an entire piece of bread might bring on a worse reaction.

Note that a gluten challenge requires that you consume the equivalent of two pieces of bread a day for 4-6-8-12 weeks (different sources) to ensure accurate celiac blood-test results. 

Also, be prepared to not get all of the answers you seek with just one doctor's appointment. I know, not what you want to hear, but getting a proper diagnosis is often a long-term ordeal.

But glad to see that you're asking questions and looking for answers on your own. And I'm sure someone else here on the forum who has more experience with allergies or ulcers or gluten reactions different from my own can offer different thoughts once they get back from their Fourth of July picnics.
 

[nvsmom]

I agree that those could all be possible celiac symptoms, but an itchy throat does sound allergy related. It is possible to have celiac disease AND and allergy to wheat; someone around here had that double whammy although i can't remember who it was.

 

IBS... Someone aound here said that IBS is a doctor's way of saying, "I Be Stumped".  It's just a chronic collection of GI symptoms with a label.  Most celiacs had IBS symptoms beforethey were treated.  And many many people around here with celiac disease or non-celiac gluten esnsitivity (NCGS) were told that it's all in our head.  Unless your family are medical professionals, I would take their advice with a grain of salt.  Of course that can be said about getting info from us too, but at least some of us read books, medical journals and go to seminars about this specific disease. 

 

Most celiacs have a damaged intestine when they are diagnosed. In fact, that is how doctors diagnose us - they look at the intestinal villi damage in an endoscopic biopsy or they do blood tests to find the autoantibodies that are doing the intestinal damage. It's not a great set-up. 

 

It is possible that your black tarry stools are a result of intestinal damage to the upper intestines due to celiac disease, or it could be from some other damage to the esophagus or stomach.  You might want to take a picture of your stools to show your GI when you go in next week so he knows what you are talking about.

 

In fact, it's a good idea to keep a food and symptoms journal to bring in to him (foods eaten symtpoms, and the times the meal and symptoms occured).  A written list of symptms is always a good idea to give the doctor.

 

A gluten challenge for blood tests is usually 8-12 weeks of eating the equivalent of 1-2 slices of bread per day.  If you are wanting to really start your gluten challenge before seeing the GI, it sounds like you may have to eat more gluten, and with the severity of your reaction, I'm not sure that would be wise. That being said, if you have been eating close to that amount of gluten, and you are able to continue for another week, it might enable the doctor to test you immediately. Some people's blood tests will show positive after only 2 weeks on gluten (but it is usually large amounts of gluten).

 

If you can, request as many celiac disease tests as possible. The full panel is ofte considered to be this:

ttG IgA and tTG IgG - most common tests

DGP IgA and DGP IgG - newer tests often good for detecting early disease

EMA IgA - similar to the tTG IgA but detects more advanced disease

total serum IgA - a control test

AGA IgA and AGA IgG - older and less reliable tests

 

Good luck and welcome to the board.