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Need Help For Next Step In Diagnosis

scottb2240

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scottb2240 Newbie
scottb2240
Posted

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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mommy2krj Explorer
mommy2krj
Posted

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.

scottb2240 Newbie
scottb2240
Posted
  • Author

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?

kareng Grand Master
kareng
Posted

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

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scottb2240 Newbie
scottb2240
Posted
  • Author

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.

kareng Grand Master
kareng
Posted

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

frieze Community Regular
frieze
Posted

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

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  • 3 weeks later...
scottb2240 Newbie
scottb2240
Posted
  • Author

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

frieze Community Regular
frieze
Posted

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....

nvsmom Community Regular
nvsmom
Posted

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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      Ibuprofen

      By cristiana · Posted

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    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
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