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Need Help For Next Step In Diagnosis
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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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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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