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

Really Scared To Go To The Specialist
0

7 posts in this topic

I figured out that I have celiac 2.5 years ago from a combination of elimination diet, symptoms and 23andme results (I had previously been diagnosed as having IBS for 5 years, getting progressively worse). My GP at the time felt that was good enough after I tried to go back on gluten to get tested and ended up curled on the floor of my bathroom for 2 days. My new GP was comfortable enough to put the diagnosis in my record but I have been having more symptoms since a recent glutening, and I want to go see a GI specialist. My GP/insurance company is making me go in to see the GP for a screening first but I know I can get past that (my belly has been distended for 2 weeks, I've been constipated and I've been having pain after almost every meal, among other things).

What I'm afraid of is that I'm going to get to the Gastroenterologist and be told it's all in my head, have my diagnosis blown off and/or be told the doctor won't do anything unless I go on gluten for a month to get a "proper" diagnosis. I know a gluten challenge is out of the question, (I'd be incapacitated and I have a physical job that I can't take that much time off from). I do have one test result that supports the celiac diagnosis, a deficiency of intrinsic factor of B12.

What would you guys do? How can I prepare myself to get what I need from the doc? I'm comfortable arguing with doctors in general, but I don't know what I'm asking for at this point. I have no idea what's wrong!

0

Share this post


Link to post
Share on other sites


Ads by Google:

If possible find a GI that specializes in Celiac Disease within your system so that you can request a particular doctor when you see the new primary.

One possible reason for your current symptoms could be Small Intestine Bacteria Overgrowth (SIBO). Might want to read a bit about it before your appt.

I wasn't clear if you have had celiac blood work before, but I would request a full celiac panel along with nutrient testing from the primary so the results are ready for the GI.

Good luck, be clear and concise regarding your history with gluten and bring a list of all symptoms that improved when you removed gluten along with your current symptoms. You'll do fine.

I do hope you are feeling better very soon.

0

Share this post


Link to post
Share on other sites

Pain after eating could be several things. You might have an ulcer, or you might have gall bladder issues, or you might have gastritis, etc. You might just be gassy. Write down your symptoms as Lisa suggested. It doesn't matter if you have celaic or not, you have symptoms you want help with and that is the doctor's job.

0

Share this post


Link to post
Share on other sites

Since you know your are already at least gluten intolerant if not officially celiac, you tell the Gastro doctor you are unable to go back on gluten for testing because it incapacitates you. Then it is up to he/she to devise the next steps. Don't make yourself sick just for test.

Your symptoms could be chronic mild levels of cross contamination and/or glutening. It is also more proof that you are celiac, because celiacs become more sensitive to accidentally ingesting gluten as time progresses on a gluten free diet. Try going over your diet and anything else that goes into your mouth, such as medications, especially newly purchased items, and making sure that those items are gluten free. Also, you can have developed an additional problem to something like oats, and may need to avoid oats or oat cross contamination more carefully, or soy, or another food such as the fillers in certain artificial sweeteners,etc.

Going "back to basics" and then adding in one food at a time can help pinpoint this problem. I had to ditch several items last winter, and switch brands on a few more, which is sort of odd after the amount of time I've been avoiding gluten, but I am so much better without them, it is worth it.

1

Share this post


Link to post
Share on other sites

I've apparently put the cart before the horse. Because I don't have a proper diagnosis (And I will not be getting one as I'm not going to do a gluten chalenge), the GI docs want a series of tests before I can come in. Today they took 4 vials of blood (liver panel, kidney panel, cbc, lipid panel, fasting blood sugar and various vitamins), and on thursday Friday I'll be getting a fasting abdominal ultrasound to check my gallbadder and pancreas. :rolleyes: Granted, for all I know it will turn out that I'm having some unrelated issue. Who knows.

Edited by moonablaze
0

Share this post


Link to post
Share on other sites




Glad you are moving forward. Hope your GI appt is helpful :)

0

Share this post


Link to post
Share on other sites

Apparently another of the tests was for H. Pilori antibodies and was positive, so there's a good chance I have an ulcer. joy.

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
      104,364
    • Total Posts
      920,549
  • Topics

  • Posts

    • Hi Laurabella, Yes, you could have celiac disease!  It is important to keep eating gluten until all testing is completed, including an endoscopy with biopsy samples if the doctor recommends it.  The doctors usually do want the endoscopy.  The biopsy samples of the small intestine lining (4 to 6 samples) are checked for microscopic damage that indicates celiac disease.  Gall bladder problems can happen with celiac disease.  Your pain could also be from intestinal damage in any part of the small intestine. Some things you could try while you are waiting for your tests to be completed are stopping all dairy, and taking peppermint tea for gas in the stomach.  Celiac disease damage makes it hard to digest dairy sugar (lactose) and that can cause bloating and pain.  Constipation and diahrea are also possible fun symptoms. Welcome to the forum!
    • Hi Beachgrl, We have had members with microscopic colitis before, usually in addition to celiac disease.  Have you been tested for celiac disease?  The reason I ask is, it is much better to be tested for celiac before starting the gluten-free diet.  The primary tests for celiac are to detect antibodies to gliaden in the bloodstream.  Those antibodies start to decline when a person stops eating gluten, so the tests become useless. There is no reason a person can't have more than one digestive system disease.  So it is smart to be tested for celiac disease if you can get the testing arranged.  Any change in symptoms after stopping gluten is an indicator that gluten is causing a reaction of some kind.  It could be celiac, or it could be non-celiac gluten intolerance, (NCGI).  There aren't any reliable tests for NCGI yet. Welcome to the forum!
    • I have microscopic colitis. Having a bad flare of D.  On Budesonide for first time for this. It's helping some- only on it a week. Do you think gluten free would help even if tested negative a few years ago?  Was gluten free yesterday and no BM changes. Even had cramps this AM that wasn't really having before. Thank you!!
    • Do you want to tell us the name of it ans where it is located.  maybe someone else will be looking for a restaurant there. Also, it is very helpful if you go to Find me Gluten Free and review it.
    • Hi. Im currently under consultants at my hospital,  and have just been for a blood test to test for celiacs. My symptoms are.... Low weight (8stone and 5ft6tall) Joint pain,particularly my hips and lower back  Severe pain in my gall bladder area which happens spontaneously... Especially after eating foods containing gluten.  When i have foods with wheat in i pain in my  right side just under my bottom rib, i become a bit spaced out and cant focus on anything. Also get diahorrea aswell. I recently contracted C-Diff and was in hospital for 4 days very poorly. Im 29years old (female) and the doctors r trying to work out what is wrong with me. I have always struggled to gain weight,  even after having 2 children i am still only 8stone. I was just wondering if u think i could have celiacs?  The pain in my side has been on and off for 7years! And the last 3years its been severe. And it definitely comes on as soon as i have gluten/wheat.   
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,439
    • Most Online
      1,763

    Newest Member
    DKH0614
    Joined