• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
scottb2240

Need Help For Next Step In Diagnosis

Rate this topic

Recommended Posts

Hello everybody!

 

First off, I've been reading on this site quite a bit and decided to join, so this is my first post.  Thanks in advance for any help. 

 

Here's how it goes....

 

I'm a 23 year old male.  I had migraines (1-2/month) in high school but always linked them to lack of sleep as I played sports year round.

 

In college I started getting awful "hangovers".... a few drinks would lead to being stuck in bed and vomiting until 8 pm the next day.  I had blood work done and it came back negative for celiac.

 

After graduating college I've stopped drinking because I hated wasting my weekends feeling miserable.

 

Within the past several months I have started getting those "hangovers" while being completely sober. (Stomach pains, migraines and nausea)

 

 

I have met with several doctors and this is what I've had done:

Bloodwork

Endoscopy (negative for celiac, duodenal hernia, ulcer in small intestine) so I'm on Dexilant now.

Ultrasound (nothing came back on that)

HIDA gallbladder scan (my ejection fraction was 76%)

 

Here are some symptoms:

Fatigue

Stomach pain

Heartburn/indigestion

Dehydration

Geographic tongue (dentist said it was nothing to worry about but i know my body is trying to tell me something)

Keratosis pilaris

 

My mother had rheumatoid arthritis before passing from ovarian cancer 5 years ago. 

 

My sister had her gall bladder taken out about 5 years ago and suffers from similar symptoms (no geo tongue or keratosis though)

 

 

My doctors all seem to think I'm healthy and I have the feeling that I am a hypochondriac. Now that you know all of my symptoms and my background.... any ideas how to go forward with my diagnosis??

 

My gut feeling is telling me I have celiac but i just cant find medical proof.

 

 

 

 

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


I would say that the next step after having all those tests done and come back with no answers would be to give going gluten free a try. Or some kind of food elimination diet....not quite sure which I would do first though...this is all quite new to me.

Share this post


Link to post
Share on other sites

After I posted last night I was thinking that I should have said that maybe I dont have Celiac but a gluten intolerance.  I was listening to the "gluten-free Diet" by Elizabeth Hasselbeck at work and it got me back in the rythem of researching my symptoms.  Maybe I need to get the gene testing done for the HLA DQ2/8?

Share this post


Link to post
Share on other sites

Why not get tested for Celiac? Instead of just guessing ? You have some of the symptoms. Have they tested your thyroid? Iron, Vit D, B12, etc? Those deficiencies can cause fatigue and vitamin deficiencies are symptoms of Celiac

http://www.cureceliacdisease.org/medical-professionals/guide/symptoms

Share this post


Link to post
Share on other sites

I had a blood panel to test for celiac as my gastro doctor initially thought that it was celiac.  He said that all my numbers indicate that I am healthy.

Share this post


Link to post
Share on other sites
Ads by Google:


I had a blood panel to test for celiac as my gastro doctor initially thought that it was celiac. He said that all my numbers indicate that I am healthy.

You might want to get a copy and look for yourself. Make sure there are even any Celiac tests on it. Can't tell you how many people come on here and say " the doc said my Celiac panel was negative" but find out they didn't have one or the doc ignored the positive, etc

  • Upvote 1

Share this post


Link to post
Share on other sites

yup, get ye old med rec, & bring the back here.

Share this post


Link to post
Share on other sites

It has been about two weeks since I've posted on here.  I finally got around to getting my blood work.  I'll post all my numbers from the tests I had done.

 

Total iron saturation: 94 MCG/DL

Unsaturated iron binding capacity: 267 MCG/DL

Total iron binding capacity: 361 MCG/DL

% saturation: 26

Transferrin: 293 MG/DL

 

Tissue transglutaminase AB, IGA: 1 U/mL

 

Gliadin (deamidated) AD (IGA): 4 U

 

Immunoglobin A: 436 MG/DL

 

Ferritin: 54.4 ng/mL

 

Lipase: 19 U/L

 

That is all the information I was sent.  If anything looks odd, I would appreciate any help!

Thank you, Scott

Share this post


Link to post
Share on other sites

It has been about two weeks since I've posted on here.  I finally got around to getting my blood work.  I'll post all my numbers from the tests I had done.

 

Total iron saturation: 94 MCG/DL

Unsaturated iron binding capacity: 267 MCG/DL

Total iron binding capacity: 361 MCG/DL

% saturation: 26

Transferrin: 293 MG/DL

 

Tissue transglutaminase AB, IGA: 1 U/mL

 

Gliadin (deamidated) AD (IGA): 4 U

 

Immunoglobin A: 436 MG/DL

 

Ferritin: 54.4 ng/mL

 

Lipase: 19 U/L

 

That is all the information I was sent.  If anything looks odd, I would appreciate any help!

Thank you, Scott

we need the ranges....

Share this post


Link to post
Share on other sites

The full celiac disease panel, which hardly anyone seems to get, is:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG
  • EMA IgA
  • total serum IgA
  • AGA IgA and AGA IgG

It appears they did the tTG IgA and DGP IgA celiac tests for you, as well as the total serum IgA. Celiac tests have various ranges like 0-4, or 0-1, or 0-20. I'm guessing that yours are 0-4, but you need your ranges.  the total serum Iga looks like it is fine though.

 

You might want to request some IgG based tests. some people around here are only serologically positive in the IgG tests, their igA tests are negative. That could be you.

 

Non-celiac gluten sensitivity (NCGS) could apply to you too. Those with NCGS have all the same symptoms as celiac disease but don't have the villi damage (and so have negative blood tests).

Share this post


Link to post
Share on other sites


Ads by Google:


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
      108,955
    • Total Posts
      943,655
  • Member Statistics

    • Total Members
      67,258
    • Most Online
      3,093

    Newest Member
    CharleneM
    Joined
  • Popular Now

  • Topics

  • Posts

    • Gemma......if you are ever in London, please check out this place.  It is a 100% gluten free bakery and the food is out of this world!  I can't get bread like this in the States and it certainly is worth a road trip for anyone living in the Uk, within reasonable distance from London.  It will easily satisfy all of your bakery cravings and I bet the bread freezes well. http://www.beyondbread.co.uk/
    • Celiac disease can be dormant for years til a strain/stress to the immune system makes it come out. Many of us have had this issues, your infection run in might have triggered the dormant genes for the disease if you had them. I would follow up with the testing, see about getting a full celiac blood panel if you can, you have to be eating gluten for 12 weeks daily prior to testing. http://www.cureceliacdisease.org/screening/

        If not celiac it could be another food intolerance/sensitivity I suggest keeping a food diary and tracking what you eat, seasonings, how it is cooked etc. And how you feel later. Change up our diet more and look for patterns.  Here is stuff to read up on. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Yeah , i will look into getting tested - like you say there is no harm in it . What I found very interesting is the part where you say "Later I got pains in the stomach, usually a dull ache although I could get a fierce stabbing pain there too. When I went gluten free those pains stopped. as did my chronic sciatic backache which Ive subsequently realised was probably due to inflamed tissues pressing on nerves." - I also started to get chronic sciatic nerve pain on the right side over a similar time period and am wondering if its the same kind of thing. If I could solve both those things it would be life changing for me
    • Hi ,  i was thinking that an intolerance and allergy were about the same thing really but sorry if im wrong. I know celiac is an autoimmune disease but was thinking that is different again, more serious and was erring on the side of my possible issue not being that but more of the intolerance type. Clearly im just guessing though and dont know about this stuff , hence the posting for advice, The problem with trying to get tested is that in bolivia there are very limited tests and doctors are unreliable so you have to rely on yourself to certain degree. I have heard of a test here and was planning on looking into that but it made sense to try to get some opinions and advice online first so Im in a better position to understand if any tests here are actually reliable enough. I dont think there is an issue with travel parasites etc as I have already taken the medications thats would kill them like a course of albendazol and praziquantel and that was after a 2 week anti parasite cleanse. That did feel like it got rid of anything and the only issue I have been left with is this pain as described.
    • Karen's point about parasites etc is a good one. They can cause a lot of symptoms similar to celiac /ncgs as you probably know.  At 11 I had my appendix removed following pain in the lower right side of my torso. On waking up the surgeon told me that it was actually ok, when I asked what caused the pain I think they said it was probably glandular - they didn't know. Later I got pains in the stomach, usually a dull ache although I could get a fierce stabbing pain there too. When I went gluten free those pains stopped. as did my chronic sciatic backache which Ive subsequently realised was probably due to inflammed tissues pressing on nerves. I would ask the Bolivian doctors if they can get any celiac blood testing done. The standard ttg may not be beyond their labs. can't hurt to ask? Give your diet my guess is you've had a lot of gluten for a long time. If its an issue for you expect a bumpy ride when removing it.  Best of luck!  
  • Upcoming Events