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Need Help For Next Step In Diagnosis
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10 posts in this topic

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.

 

 

 

 

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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.

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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?

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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

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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.

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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

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

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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

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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....

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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).

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