Combination of results and issues

[Tara90]

Hi all,

I had a positive coeliac serology (Deaminated Gliadin IgG 39) about three years ago and a subsequent negative intestinal biopsy. I was told I don’t have coeliac disease and sent on my way.

Fast forward three years and I am still having severe fatigue. I have recently been diagnosed with Narcolepsy but would describe my tiredness as fatigue more than sleepiness. Stimulants have no effect. 

I have also previously been diagnosed with anaemic of chronic inflammation, but this is thought to be due to a past history of anorexia nervosa.

I have also recently tested positive on ANA blood tests but negative for lupus specific markers. 

I have just had my coeliac serology retested at my request and the results are virtually identically to last time. My GP will not refer me to a GI specialist as I have had a previous negative biopsy. 

My question is - are all these things related or merely coincidental? Is it worth pushing to have another scope done? Or alternatively is it worth trying a gluten-free diet myself to see if I have any improvements? 

 

 

[Tara90]

20 hours ago, Tara90 said:

Hi all,

I had a positive coeliac serology (Deaminated Gliadin IgG 39) about three years ago and a subsequent negative intestinal biopsy. I was told I don’t have coeliac disease and sent on my way.

Fast forward three years and I am still having severe fatigue. I have recently been diagnosed with Narcolepsy but would describe my tiredness as fatigue more than sleepiness. Stimulants have no effect. 

I have also previously been diagnosed with anaemic of chronic inflammation, but this is thought to be due to a past history of anorexia nervosa.

I have also recently tested positive on ANA blood tests but negative for lupus specific markers. 

I have just had my coeliac serology retested at my request and the results are virtually identically to last time. My GP will not refer me to a GI specialist as I have had a previous negative biopsy. 

My question is - are all these things related or merely coincidental? Is it worth pushing to have another scope done? Or alternatively is it worth trying a gluten-free diet myself to see if I have any improvements? 

 

 

Anyone? I’m really anxious and desperate for answers. 

[RNGayle]

You could possibly have Non Celiac Gluten Sensitivity. I’m sure someone else here knows more about this than me. I sincerely hope you get the answers you need.

[knitty kitty]

Would DNA testing for the most common Celiac genes be possible for you?  If you've got the genes and positive serology, the doctors might be willing to take another look with an endoscopy, although some doctors will make a diagnosis of Celiac Disease with just the genes and positive blood tests.   

The damage to the small intestine is often microscopic and cannot be seen with the naked eye.  Pathologists familiar with Celiac should examine the biopsy samples. 

The damage can also be patchy and can be missed or out of reach.  The damage in the early stages may not be as clear cut as someone who has had active Celiac for much longer.  Repeat endoscopy can check for further damage or healing.  

The fatigue and anemia suggest vitamin and mineral deficiencies.  Thiamine (Vitamin B 1) deficiency can cause severe fatigue, and has been linked to anorexia.  Have you been checked for vitamin and mineral deficiencies?  

Remember to get all testing done before going gluten free.  Once you quit eating gluten, your antibodies will go down and your blood tests won't show up as positive.  Intestinal healing will occur, too, so damage might not be seen.  

You may want to consider getting new doctors.  

Hope this helps! 

[Tara90]

7 minutes ago, knitty kitty said:

Would DNA testing for the most common Celiac genes be possible for you?  If you've got the genes and positive serology, the doctors might be willing to take another look with an endoscopy, although some doctors will make a diagnosis of Celiac Disease with just the genes and positive blood tests.   

The damage to the small intestine is often microscopic and cannot be seen with the naked eye.  Pathologists familiar with Celiac should examine the biopsy samples. 

The damage can also be patchy and can be missed or out of reach.  The damage in the early stages may not be as clear cut as someone who has had active Celiac for much longer.  Repeat endoscopy can check for further damage or healing.  

The fatigue and anemia suggest vitamin and mineral deficiencies.  Thiamine (Vitamin B 1) deficiency can cause severe fatigue, and has been linked to anorexia.  Have you been checked for vitamin and mineral deficiencies?  

Remember to get all testing done before going gluten free.  Once you quit eating gluten, your antibodies will go down and your blood tests won't show up as positive.  Intestinal healing will occur, too, so damage might not be seen.  

You may want to consider getting new doctors.  

Hope this helps! 

Hi knitty kitty,

I am positive for HLA-DQ2.

[knitty kitty]

I vote for finding new doctors then.  

 

[RMJ]

You could go gluten free for 6 to 12months and have the deamidated gliadin IgG retested.  If it was lower or normal it would certainly indicate that your body has a problem with gluten.  Also you could see if you feel better when gluten free.  Luckily a doctor’s prescription is not needed to go gluten free!

[Kate333]

It could be that something other than gluten/celiac disease.  For example, constant fatigue is a classic symptom of chronic, depression/anxiety and/or insomnia (speaking from personal experience here).  Anxietycentre.com is a great resource; explains how long-term depression/anxiety can affect us physically.  You don't mention TTG blood tests but if it is consistently normal and you don't notice any GI problems, you can probably consider other possible causes.   Also, get your thyroid/glucose levels tested.   If all these are normal, then take a good look at your daily routine:  do you get enough/good quality sleep, eat healthy, balanced diet, regularly exercise?  Is your work much too stressful or with demand for long hours?  Is there anything else going on in your life (recent deaths of family/friends, job loss, birth of a new baby, weight gain over the last 3 years) that could have made you feel so drained?  Also, the last 2 years of the pandemic have been very challenging for even the strongest, most optimistic among us, so not surprising that so many people feel burned out now.  You might consider asking your primary doc for a MH referral or low-dose antidepressant if needed.  Personally, I would not recommend DNA tests because: they are so expensive, almost half the global population has a celiac disease gene, and knowing you have the gene does not mean you have active celiac disease.

I hope you feel better soon!