Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Could I Be?


absentee thoughtlord

Recommended Posts

absentee thoughtlord Newbie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Kay DH Apprentice

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

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

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

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

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

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



sb2178 Enthusiast

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

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,027
    • Most Online (within 30 mins)
      7,748

    Rick Yaehne
    Newest Member
    Rick Yaehne
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.