Positive Blood Test And No Symptoms...what Should I Do?

[ip87]

Hi all,

 

I have an interesting situation that I'm trying to make sense of here.  My doctor didn't seem to have a satisfactory solution for me, so I'm hoping that someone in this wonderful community of Celiacs could give me some advice.  Here is the situation:

 

I'm a 25 year old male, and a couple of weeks ago my doctor referred me to a gastroenterologist because I was having some acid reflux and, sorry for the graphic nature of this, but really bad itching sensations in my anal region (not sure if anyone else with Celiacs has had this symptom as well??).  My doctor ran a routine blood test and called for an endoscopy to check out my reflux.  I had the endoscopy and no one mentioned the possibility of Celiacs; just some minor tissue damage from the reflux and again in my upper small intestine.  The next day, I got a call saying that my blood tested positive for Celiacs.  She explained to me what it is and what kind of symptoms people generally have, and it confused me because, up to that point, I had never had any problems eating gluten.  I love bread and pasta and never noticed any discomfort, gas, diorrhea or anything else that would suggest my body is intolerant of gluten.  She said that I need a biopsy to confirm the diagnosis, but that the blood test is pretty accurate, and considering my results (I forgot what the test actually tests, but my level of whatever it is was 120, where normal levels are between 0-20) she is pretty certain I have Celiacs.  Here is where it gets a little complicated.

 

The day after my endoscopy I moved from Wisconsin (where my mom's health insurance still covers me), to Portland, (where I'm only covered for "emergency" care).  I haven't started a gluten-free diet yet and have been eating all the bread and drinking all the beer I can in order to soak it up before I will have to change EVERYTHING.    I certainly don't have the money to pay for an endoscopy and biopsy out-of-pocket in Portland to confirm the diagnosis, so that leaves me with a few options.  I'm going home to Wisconsin in August (5 months from now).  Assuming I can't get insurance to cover the tests here in Portland, should I (a) just continue eating gluten and pretend that nothing happened until I go home in August to get the confirmation biopsy; ( try to find a way to fly home early ($$), to get tested and start the diet as soon as possible, or © start the gluten-free diet now and wait for the endoscopy and confirmation to happen later in my life??  My doctor said that I probably shouldn't start the diet without the confirmation, but also didn't recommend waiting five months before taking care of this. 

 

There's just a lot about Celiacs that I don't know yet, so I'd appreciate any advice I could get on the issue.  Especially since I feel fine now, and have been eating gluten for 25 years, it seems silly to rush into a gluten-free diet, so maybe I could  just wait until August, but then again, are there other risks of continuing on with a gluten diet that I might notice?  Also, it seems like, from reading a lot of threads on this site, once you go gluten-free, even if you didn't really have symptoms before, you don't really go back, and can develop a pretty severe intolence once you stop eating gluten.  So that makes me even more hesitant to start.  I should also mention that neither of my parents or any relatives that I know of are Celiacs...

 

Thanks for any help!

-Ian

[Cara in Boston]

Your parents and relatives may have celiac disease and simply have no outward symptoms like you.  All first degree relatives should be tested.  

 

Many people have it and have no symptoms.  It is not uncommon.

 

The fact that it is more than a food sensitivity makes it important to stay away from gluten 100%.  It is an autoimmune disease.  If you continue to eat gluten, your body could develop other autoimmune conditions - ones that cannot be reversed by a diet change.  You want to STOP the AI reaction.  Once on the diet, you have a normal risk of the other things, including some cancers.  Don't mess around with this.  Just because you can't feel it does not mean your body isn't being damaged by it.

 

A positive blood test is enough.  You don't need a biopsy.  Some doctors require it for diagnosis.  At your age, getting an "official" diagnosis may not be necessary (for accommodations in school, summer camp, college cafeterias, etc.)

 

The diet seems overwhelming at first, but after a few weeks, you get the hang of it.  It is worth it for your continued good health.

 

They make some pretty good gluten free beers now.  You don't have to give up everything.

 

Be aware that in the first few day/weeks of being gluten free, you may feel worse.  It can be like giving up any addictive substance (headaches, mood swings, fatigue) but after that you may notice that you have more energy, sleep better, look better, etc.  You may have subtle symptoms that you just don't know are related to gluten.

 

Cara

[1desperateladysaved]

I would get gluten out of your life and see what happens next.  You might find that your reactions to it will become more obvious.

 

Is reflux a possible symptom?

 

Diana

[Smylinacha]

_{New Planet has awesome gluten free beer!   Angry Orchard hard cider is also gluten free.  Believe me, I was a major microbrew girl until this happend.  I will be going for my endo tomorrow.  I went gluten free for a while and felt better but had to gluten up again for the test tomorrow.}

[ip87]

Thank you for your advice, Cara.  I really appreciate it as I am grappeling with this decision.  In regards to your suggestion about simply starting the gluten-free diet without any biopsy confirmation, I find myself hesitant.  I'm probably still in the denial phase of all this, but it's obviously a major lifestyle change to undergo without being 100% sure, especially since starting the gluten-free diet can be so harsh to begin with.  I'm also not in a living situation that's conducive to starting a total gluten-free existence, as I just moved in with my girlfriend and her sister's family, and we cook and eat together.  Is there any chance that the blood test was wrong, especially considering my family history??

 

I will certainly advise my parents and siblings to get tested as well, but if I find out that one of them does, in fact, have Celiacs, then it will make switching over to gluten-free for me even more difficult as I know that my parents are both in their 60s, and are as healthy as ever, with no digestive problems. 

 

In reaction to your comment, Diana, why do I want my reaction to gluten to become more obvious, as I feel fine now?

[Takala]

Go home and get tested.  This is a no- brainer.  Otherwise you are more likely to spend the next few years going on and off gluten because  you have doubts, plus you don't have the official biopsy results, and you will have created that situation by going gluten free for long enough to have screwed it up.   If you're celiac, every day you eat gluten, you're slowly killing yourself by trashing your digestive tract, which will effect all your hormone production.   If you think you have problems now, wait until you are too incapacitated to work or to be able to have a relationship. 

[EmiPark210]

If you feel like you need the double security of having a biopsy to be absolutely sure, then do it. If that's what it takes for you to go completely 100% gluten free for the rest of your life, then do it. As Cara said, this is a really serious autoimmune disorder that has it's consequences whether you're symptomatic or not. If you have a copy of your blood tests and are willing to share, we can help you interpret them; there are some tests that point more towards celiacs than others. But there are a lot of people who are only diagnosed based on blood tests.

 

I know it's really overwhelming at first and is especially confusing without all the symptoms. If what we're saying seems extreme, we're trying to point out how important it is for you to go gluten-free. It's confusing and difficult at first, but it gets easier and it will make your quality of life better in the long run. It sounds like you're at a stressful point in your life with a move and financial restrictions and this is just another thing on top of all that, but it'll be worth it.

[Cara in Boston]

Really, the consequences can be really far-reaching - not just "digestive problems."  Infertility, Lymphoma, Debilitating Arthritis, Anxiety, Depression, you don't know what you might develop or when it will happen.    This is not something to take lightly.  I don't know what it will take to get you to stop eating gluten (how about hair loss?) but really, the blood test is enough.

 

My son (diagnosed at age 5) had very few symptoms that he was aware of - mostly just a behavior change.  Two years later (100% gluten free) he gets a very painful stomach ache if he accidentally gets glutened.  While I would never wish him to be in pain, it actually has been helpful in helping him accept the diet.  No matter how good the cupcake looks, it is not worth being sick for a week.  He gets it and it is easier to say no to the cupcake.

 

Cara

[ip87]

I appreciate the advice, everyone.  I guess I didn't realize the breadth of the different consequences that Celiacs can have on your overall health and wellness.  You often hear about people going "gluten-free" and it almost seems like a fad that people try-out for a while, but I'm gathering that Celiacs is a bit different, and isn't something you just casually deal with.  I'm working on a plan to fly home soon to do the biopsy and a few other tests.  It's definitely hard to figure out with so much in flux now, though.  Assuming they confirm my diagnosis and I start a gluten-free diet, would it be the worst thing in the world to wait until the fall, when I'll be in a more controlled environment, to begin the diet?  I may have plans to travel to South America for the month of July, and I don't anticipate gluten-free living being easy there...

[Cara in Boston]

After I tested positive (blood test) my doctor did an endoscopy and it was negative.  I had already been gluten free for two weeks.  Not sure if that skewed the results or if I just didn't have enough damage to measure at that point.  I did, however, feel 100% better gluten free.  He instructed me to go back on gluten for 6 months so he could retest.  Not sure the logic of continuing something just to cause enough damage that could be measured, but I gave it a shot.  Didn't make it past 6 weeks as all my symptoms returned.  Anyway, the doctor didn't seem too concerned about me continuing gluten for 6 months.

 

Also, when my son was diagnosed, it took 4 months to get all the testing done (from initial blood test to getting the endoscopy results) . . . while he was uncomfortable, he survived with no lasting problems. 

 

Do what you think is best, but don't put it off too long.  You have celiac disease.  It is not going to go away.

 

Cara