Issues before diagnosis

[sha1091a]

I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.

 

going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 

[trents]

Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!

[cristiana]

I agree, it so often overlooked!

I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. 

I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety). 

I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac. 

Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money.

Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for.

Cristiana

Edited December 17, 2025 by cristiana

[Wheatwacked]

Sadly, you story is not rare.

Now that you know, you can heal.  Avoid foods that disturb you.  It will imprve as you heal.

Doctors forget that Malabsorption Syndrome is comorbid with Celiac Disease.  The small intestine absorbs virtually all vitamins and most minerals. Iron, calcium, zinc, B vitamins, fat-solubles A, D, E, K, most carbs, fats, proteins, vitamins, minerals, B12, bile salts.

Brine-fermented pickles are rich in vitamins A, C, and K, plus minerals like potassium,  B vitamins (thiamin, riboflavin, folate) and   probiotics lactobacillus for gut health.

The supplements that helped me the most were Vitamin D, Phosphatidyl Choline, Liquid Iodine and Thiamine.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

educe foods with high omega 6.  If a food causes you distress, eat something else.  As you heal it gets better.  Doctors tend to ignore also that Malabsorption is comorbid with celiac disease.  The small intestine absorbs virtually all vitamins and most minerals,  so some of your symptoms will be from deficiency, not gluten.  GFD foods are not fortified.

The vitamins that helped me most were Vitamin D, Iodine, Thiamine and Phosphatidyl Choline. 

Brine-fermented pickles are rich in vitamins A, C, and K, potassium thiamin, riboflavin, folate and beneficial probiotics.

[sha1091a]

To hear others also had issues being diagnosed by the medical system in other countries takes away some of the frustration and anger by being  misdiagnosed for so many years.  

[trents]

Perhaps the takeaway from this is that you can help others who may have symptoms of celiac disease but flying under the diagnostic radar of the medical establishment to advocate for celiac testing themselves. Our community has painfully discovered that passively trusting the medical establishment to run the appropriate tests is a paradigm that doesn't work. We have found that it is necessary to be appropriately assertive.