Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Some Pre-Diagnosis Questions
0

3 posts in this topic

After living with bloating, upset-stomach, gas, and a bunch of other symptoms for probably a few years now I came across celiac disease and this site about two weeks ago. I never really thought of my symptoms as anything that could be wrong with me. I am a college student and as this semester started coming to an end I found myself really stressed out with finals and other assignments. My symptoms got A LOT worse and I realized that they have always gotten worse at certain times of the year when I find myself stressed (before i go back to school, beginning and ends of the semester, act). So I did a bunch of research online and figured I might have celiac.

After basically not going to any of my classes during the last week of school I came home and went to the doctor right away. My doctor thinks its either IBS or celiac. He ordered 4 different blood tests, gave me a prescription for ibs meds and also told me to try not eating gluten for at least a month. I am still waiting for the results from the blood test to come back but have recently learned that the blood tests aren't always reliable. Since I'm pretty sure that what I have been experiencing are symptoms of celiac disease I had a few questions.

If my blood test comes back as negative, what should be my next plan of action?

Would I be able to get a biopsy even if my blood test comes back as negative?

Any advice or insight is welcomed!

0

Share this post


Link to post
Share on other sites


Ads by Google:

You shouldn't go off of gluten until all testing is done. Generally, if someones bloodtest comes back positive, then generally an endoscopy for a biopsy comes next.

Another thought is that stress can be a royal you know what when it comes to making your body feel like crud. Has it always been bad before the stress? I understand the whole finals thing (currently a college student with finals going on as well).

At any rate i'd hold off on the removing of the gluten. If the blood tests come back negative, i'd insist on the biopsy and the genetic test. If nothing comes back positive then i'd remove it for 3-6 months then add it back in.

0

Share this post


Link to post
Share on other sites

I would seriously consider staying on gluten until test results come back and you see if biopsy is necessary. It can be a whole lot harder to restart gluten once off a while. Unless your doctor is one of the enlightened ones who will diagnose on blood alone. Even then you might find you need more info from a biopsy, and it may be misleading if you have been gluten-free.

Confused or plain wrong doctors are sadly all too common, definitely find out more before removing gluten

Good luck

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,655
    • Total Posts
      921,622
  • Topics

  • Posts

    • Below is copied & pasted from this thread:   My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE.  I would recommend him to the whole, entire world.  I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having.  I wish all doctors were like him.  I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out.  He's not like that.  Good luck to you.     There are recommendations on this thread too:  
    • I never worried about cross contamination because i was originally told i was just intolerant. after going gluten free i felt so much better up until this last march. dairy and fructose have been giving me problems but both lactose and fructose test came back negative.  this is what my gi doctor emailed me today 
    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,656
    • Most Online
      3,093

    Newest Member
    bentcreekmom
    Joined