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Could I Be?

absentee thoughtlord

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absentee thoughtlord Newbie
absentee thoughtlord
Posted

Hi Everyone,

Sorry if this isn't the right part of the forum for asking this, but...

I'm still awaiting the results of a blood test for Celiac disease, but wondered if any of the following makes sense or suggests that I might be. Truth is, I'm so worried about my health at the moment, especially as I have two young children and I can't be the dad I ought to be.

Here goes...

I'm a 39 year old male.

Eighteen months ago I can honestly say that I've never felt fitter in my life, but around a year ago I started to feel a bit "off colour" and mild pains in my upper abdomen (more to the right than left). I had a course of antiacids which seemed to work, but I had the same ups and downs when I wasn't on the PPI's.

About 4 months ago the malaise became more "foreground" and I've been losing weight ever since. Truth is, I've always been slim despite eating well, but it's been a gradual decline since mid Summer. Furthermore, tehre have been days when I thought I've been dying (literally) and others when I feel comparatively well.

I've just had a CT scan on my Pancreas (no results yet) but blood tests suggest that it's working fine. Similarly, an ultrasound about six weeks ago showed no obvious signs of anything untoward.

A gastroscopy two weeks ago showed a mild/moderate gastritis, but nothing that should account for the weight loss.

Other things worth mentioning:

I have consistently had slightly elevated levels of bilirubin for over a decade.

Eight years ago I had a biopsy on one of my raised lymph nodes - no cancer - but they remain permanantly up.

I don't have any diarrhoea or such.

I had some nausea a few weeks ago but that seems to be a lot less now.

Does this sound familiar to anyone???

Any thoughts are very, very gratefully received.

Christian

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Kay DH Apprentice
Kay DH
Posted

There are so many symptoms and potential symptoms of celiac and gluten sensitivity. It can hit anything, and not everyone has GI symptoms or damage. Even with negative blood and biopsy results, the best test is to see how you are when gluten-free. My symptoms started a year ago, a couple of weeks after getting the flu. My symptoms are fairly typical for celiac, but all my tests have been negative except for having the HLA-DQ8 genetic marker. My health is great as long as I don't get glutened. I assume you have also been tested for allergies, thyroid function, and had the poop test for GI pathogens. Being gluten-free can result in false negatives for blood and endoscopy biopsies, so after all your tests are done, you might try going gluten-free. Also, a lot of people have problems with dairy. It might be good for you to check with a nutritionist that is trained in gluten and other food intolerances for help in your diet. It is very frustrating trying to find out what is wrong and how to fix it, not knowing is emotionally so draining. We have all been there. Life is much better once you know.

RiceGuy Collaborator
RiceGuy
Posted

I agree with Kay DH's comments. Nothing jumps out at me to suggest it can't be Celiac. Since antibodies generally remain for about two weeks or so after the last exposure to a given invader, you should be able to try a few days gluten-free and see if you notice anything, without impacting test results. However, as was stated, it is highly advisable to try a gluten-free diet after any testing you desire to have done. Many people don't experience significant improvement for several weeks or more, so it is important to give it time enough to be sure. And yes, dairy is often problematic as well, especially in the early stages of healing.

lovegrov Collaborator
lovegrov
Posted

Like you I felt amazingly fit until ... Boom! Are you anemic? Unexplained anemia and fatigue are MAJOR symptoms. And I had very little diarrhea but plenty of gas.

richard

absentee thoughtlord Newbie
absentee thoughtlord
Posted
  • Author

Like you I felt amazingly fit until ... Boom! Are you anemic? Unexplained anemia and fatigue are MAJOR symptoms. And I had very little diarrhea but plenty of gas.

richard

First, thank you all for your replies. Very much appreciated.

As for anaemia? No. In fact, according to my blood tests I'm Usain Bolt - except he can run the 100 in 9.6 seconds, and I can't get out of the house.

absentee thoughtlord Newbie
absentee thoughtlord
Posted
  • Author

First, thank you all for your replies. They are greatly appreciated.

As for anaemia? no. In fact, my blood tests say that I'm Usain Bolt - except he can run the 100 in less than 10 seconds and I can't get out of the house some days.

Loey Rising Star
Loey
Posted

First, thank you all for your replies. Very much appreciated.

As for anaemia? No. In fact, according to my blood tests I'm Usain Bolt - except he can run the 100 in 9.6 seconds, and I can't get out of the house.

What's Usain Bolt?

Loey

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sb2178 Enthusiast
sb2178
Posted

Who. Wicked fast runner, sorta famous if you follow the sport. That's the 100 meter (bout the length of a football field).

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    • trents
      Testing

      By trents · Posted

      Did your symptoms improve after going on a gluten-free diet?
    • Scott Adams
      Testing

      By Scott Adams · Posted

      Thank you for sharing your genetic test results and background. Your results indicate you carry one half of the DQ2 heterodimer (DQA1*05), which is associated with a very low celiac disease risk (0.05%). While most celiac patients have either DQ2 or DQ8, these genes are also present in people without celiac disease, so the test alone doesn’t confirm a diagnosis. Since you’ve been gluten-free for 10 years, traditional diagnostic methods (like endoscopy or blood tests) would not be reliable now. If an official diagnosis is important to you, consider discussing a gluten challenge with your doctor, where you reintroduce gluten for a period before testing. Alternatively, you could focus on symptom management and dietary adherence, as your gluten-free diet seems to be helping. Consulting a gastroenterologist or celiac specialist could provide further clarity.  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      Celiac or Addison's complications? Can someone share their experience?

      By Scott Adams · Posted

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    • Kj44
      Testing

      By Kj44 · Posted

      Hello I received this in a genetic lab test I requested from my provider.    The patient is positive for DQA1*05, one half of the DQ2 heterodimer. The celiac disease risk from the HLA DQA/DQB genotype is approximately 1:1842 (0.05%). This is less than the 1% risk in the general population. Allele interpretation for all loci based on IMGT/HLA database version 3.55 HLA Lab CLIA ID Number 34D0954530 Greater than 95% of celiac patients are positive for either DQ2 or DQ8 (Sollid and Thorsby, (1993) Gastroenterology 105:910-922). However these antigens may also be present in patients who do not have Celiac disease.   Some background, I have been eating gluten free for about 10 years now. I have never had an official celiac diagnosis due to endoscopy and labs tested after I had already been eating gluten free for over 1 year. I was constantly sick and told you slowly remove foods and see what effects my symptoms. I have also come to realize that I have other symptoms of celiacs and recently requested the genetic testing shown above.    I am looking to see if anyone has other recommendations for testing or just to clarify the results for me as I feel the official diagnosis could be helpful but I am not positive that it is even true for me. 
    • cvz
      Celiac or Addison's complications? Can someone share their experience?

      By cvz · Posted

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