Personal Story

Claire

Christine
My name is Claire Lynch. I was born in Epsom, Surrey and worked as a legal secretary in London law firms and US banks until retiring to Cumbria in 2021 with my family, Kevin, my husband, Harry our cockapoo and Scarlet our cat.

I had digestive issues, chronic headaches, and low energy going back many years. In 2005, I developed a very painful skin condition on my lower shins called erythema nodosum. After doing some research, I decided to try a gluten-free diet. The improvement was incredible: the bloating subsided, my headaches became minimal, and energy levels returned. I have been gluten-free ever since.

In 2011, after a course of antibiotics for a tooth infection and extraction, I developed very severe diarrhoea, cramping and weight loss. As I was unable to get an appointment with my NHS GP, I saw the private doctor at Citibank in London, where I was working. He suggested I tried a course of probiotics, which unfortunately did not work, so he referred me to my first gastroenterologist. Colonoscopy results showed collagenous colitis (a form of microscopic colitis), which was treated with a course of steroids that put the disease into remission. An autoimmune blood test screen also revealed anti-parietal gastric cell antibodies, but my B12 levels were normal at this stage.

In 2012, I was referred to my second gastroenterologist (the first one had since retired) as I had been having some gastric issues, including a gnawing feeling in my stomach, frequent belching and lack of appetite. As this gastroenterologist specialised in coeliac disease, he suggested that as well as having an endoscopy for my stomach issues, he would also like to do a further colonoscopy, as there is a strong link between microscopic colitis and coeliac disease. In order to test positive for coeliac disease I would had to come off my gluten-free diet, but he understood that as this would make me feel so unwell the biopsy would be negative. The results of endoscopy showed non-specific chronic gastritis, and the colonoscopy lymphocytic colitis (another form of microscopic colitis). He could not give me a cause for the gastritis and prescribed Domperidone, a drug to speed up the digestive process in my stomach. This medication did work well but was later withdrawn from the market because of side-effects, including heart attacks, so I could no longer take it. As expected, the test for coeliac disease was negative, but the gastroenterologist felt that, due to my symptoms and the microscopic colitis, I had non-coeliac gluten intolerance.

In 2013, due to worsening of Raynaud’s affecting my hands, I saw a rheumatologist who specialised in scleroderma and Raynaud’s. A nailfold capillaroscopy test was negative for any underlying connective tissue disease, so it was confirmed as primary Raynaud’s phenomenon, which had probably worsened due to significant weight loss from colitis.

I would like to mention that in December 2013 my dear mother sadly died of an autoimmune liver disease called Primary Sclerosing Cholangitis. There is a strong link with ulcerative colitis, which my mother was diagnosed with in 1982. In order to save her life, an ileostomy was required in 1992. She was also diagnosed with Hashimoto’s thyroiditis in 1993 and polymyalgia rheumatica. Her death from liver disease was extremely distressing and made much worse by the negligence of her GP, who had ignored her extremely abnormal liver function tests since 2005.

In 2014, my thyroid test showed very high TPO antibodies, indicating I would develop Hashimoto’s thyroiditis. I did consult with an endocrinologist in 2016, who told me that had I still been eating gluten, I would have developed Hashimoto’s, as there is very strong link with gluten intolerance.

In March 2016, I had a further endoscopy done by the gastroenterologist I had seen previously, as I was experiencing further gastric issues. The results showed bile reflux and chronic gastritis. I did ask his opinion as to whether this could be due to the anti-parietal antibodies causing a lack of stomach acid, but he dismissed this and suggested I take a PPI drug, Omeprazole, to reduce stomach acid. I did try this, but it did not help my symptoms, so I stopped taking it. Later that year, I saw a second rheumatologist as I was having some lower back pain and shoulder stiffness. MRI scans of my spine were all normal, but a DEXA scan showed osteopenia, so I was put on calcium supplements.

In November 2016, following a company health check, I was referred by a private GP to my third gastroenterologist/hepatologist as I hadmildly deranged liver function test results. An MRI scan showed normal liver bile ducts, with no sign of an autoimmune liver disease. Due to my family history of Primary Sclerosing Cholangitis, he asked my GP to transfer me to NHS Royal London Hospital, Whitechapel for six-monthly ultrasound scans and liver function blood tests. When I moved to Cumbria in October 2021, my GP told me I could no longer have the ultrasounds, but the blood tests for liver function, B12, and full blood count would continue once a year.

My B12 levels had always been around 460, but then started to drop quite significantly and by November 2024 were down to 270. My ferritin had always been boarderline low at 23, but by November 2024 had dropped to 18. In addition to the ongoing epigastric pain and nausea, I was becoming quite fatigued and breathless during my afternoon walks with Harry. I was also coughing, mostly during the night, and had numbness and burning sensation in my feet, pins and needles and numbness in my hands, dizziness when doing yoga, could now only run in first gear, and a strange feeling of irritation/anger, which is not like me at all! Kevin was concerned about the coughing, so I made an appointment to see my GP. His opinion was that upper symptoms could be gastritis/reflux and the cough could be silent reflux. So, to no surprise, he prescribed the PPI drug Lansoprazole, suggesting to try it for a month. I also expressed my concern about the low ferritin and dropping B12 levels, both of which he just dismissed. As expected the PPI drug did nothing for my gastric problems, and in fact, made me feel worse.

In April 2025, I had my annual blood tests done by the GP. My B12 had remained the same at 270, but my ferritin had dropped again to 15. I therefore asked my GP to refer me to my fourth gastroenterologist. A gastroscopy showed a small degree of Barrett’s oesophagus, chronic gastritis, and faecal intestinal metaplasia. Stool tests for FIT were negative, which confirmed that my low ferritin was not due to blood loss. I also asked for instrinsic factor antibodies to be tested, which were negative, so he told me that I did not have Pernicious Anaemia or atrophic gastritis. He had also prescribed a PPI drug for the Barrett’s, which I said I would not be taking, as I had previously told him that I did not suffer from acid reflux, but had gastric pain, and was concerned that I didn’t have enough stomach acid due to the anti-parietal cell antibodies, so why take an acid reducing drug. Again, my concerns were dismissed, and he said I should be aware of the risk of oesophageal cancer. He then said he wanted to do a colonoscopy to completely rule out blood loss. I left that consultation upset, angry, and disheartened that nobody was listening to me.

I was concerned about the Barrett’s diagnosis, so I had a consultation with my fifth gastroenterologist for a second opinion. He reassured me that the grading that I received was a very low risk for confirming diagnosis, and he would not have prescribed PPI medication. I found this reassuring. I did ask him whether the Barrett’s could be caused by belching as I did not digest food well, and whether this could be due to a lack of stomach acid (hypochlorhydria). He said this condition did not exist, and that I had hypersensitivity syndrome, and that a ferritin of 15 wasn’t that low!

Throughout this time, I did a great deal of online research. Thankfully, I found the PAS website, which was incredibly informative and helpful. Reading other people’s personal stories in particular, I made me feltel less isolated. A webinar from the B12d Club in July 2024, called “Functional B12 Deficiency with Andrew Klein – A Midwife’s Tale”, was also very helpful. During a Q&A at the end, a lady asked a question:She had been diagnosed with autoimmune gastritis, had positive parietal antibodies, but negative intrinsic factor antibodies, so did she have Pernicious Anaemia? Andrew replied: “Absolutely, you have classic autoimmune pernicious anaemia. Forget about intrinsic factor antibodies, which is a completely useless test and only positive in 50% of patients”. I also found some information on autoimmune gastritis noting that one of the first symptoms can be low ferritin.

Armed with this knowledge, I decided I had to have a further conversation with my GP, as I wanted a referral to my sixth gastroenterologist, who specialised in iron deficiency anaemia, and to ensure ongoing monitoring of the gastritis within the NHS. As expected, the conversation was not an easy one. I asked for the referral, but he said he didn’t think he could do it as a GP, as the NHS hospital was a tertiary centre of excellence. I said that under NHS patient rules, I could be referred to any hospital if there was a consultant there specialising in my condition. He said he would try, but couldn’t confirm he would be successful. We then discussed the low ferritin. He said that I wasn’t anaemic as my haemoglobin was normal, and that he had several patients who just didn’t absorb iron very well. I said that I found it surprising that if blood loss/diet/coeliac disease had been ruled out, this would leave malabsorption as the cause, but he didn’t respond. He then pressured me again to take PPI medication and stressed I was at risk of oesophageal cancer. He obviously had not read the report from the fifth gastroenterologist, but by this stage I just wanted the call to end. Not surprisingly, a week later, I received a text message from the GP surgery confirming a successful referral to the NHS gastroenterologist!
In August 2025, I decided to go ahead with the colonoscopy. After the procedure, the gastroenterologist told me that there was no evidence of any cancer or polyps that would cause blood loss, but we would have a follow-up appointment to discuss the results of the biopsies. At the follow-up appointment he told me the biopsies showed a thickened collagen membrane, which was caused my previous collagenous colitis, but this was of no concern, as my disease had been in remission since 2011. My consultant then asked me what my main concern was, and I told him it was the gastritis, and now intestinal metaplasia, and that I needed to understand the cause of the gastritis, which I had now suffered from for 13 years. He said that, ruling out everything else, the inflammation in the gastric body biopsies was due to strongly positive gastric parietal cell antibodies, resulting in autoimmune metaplastic atrophic gastritis. I requested testing of my B12 levels and ferritin. In October 2025, I received his report confirming a ferritin of 8, which would require iron supplements, and a B12 level of 190. Due to my persistently falling B12 levels over a number of years, I would require B12 replacement therapy, and that it would be lifelong, due to the autoimmune gastritis. I felt relieved to finally have a diagnosis, but at the same time concerned, as he did not confirm that the B12 deficiency was due to Pernicious Anaemia—presumably because I did not have intrinsic factor antibodies.
Once the report was on my NHS patient App, I spoke to my GP, who confirmed the loading doses would be every other day for two weeks, followed by lifelong injections every 12 weeks. I was surprised that this request was not met with the usual resistance, particularly as I felt that the GP/-patient relationship had now broken down. After the first couple of injections, I did have an improvement in my symptoms : the dizziness disappeared, afternoon fatigue had lessened, and the numbness/burning in my feet, and pins and needles in my hands, started to improve. Unfortunately, after 8 weeks I noticed that the feet/hand problems were worsening, as was the irritability. I therefore emailed the Pernicious Anaemia Society to ask for advice on how best to approach the GP to change my injections to eight-weekly. Karyl from PAS responded very quickly with extremely helpful advice and the link for the new 2024 NICE guideline, and in particular the section on the frequency of B12 injections in relation to symptoms. I forwarded an online request to the GP, attaching the NICE Guideline, and was successful, as he agreed to change treatment to eight- weekly injections.
In December 2025 I saw my sixth gastroenterologist, who specialised in iron deficiency anaemia. She confirmed a diagnosis of Pernicious Anaemia, autoimmune gastritis, intestinal metaplasia, a very short segment of Barrett’s, and iron-resistant anaemia. We had a long discussion about the role of PPI medication for Barrett’s and its potential adverse side-effects, including poor iron absorption, reduction of already low stomach acid, and precipitation of my collagenous colitis. On balance, as I have minimal reflux symptoms and the Barrett’s segment is very small, it is reasonable to adopt a pragmatic approach of using PPI’s as and when it is required. She also confirmed that I should continue taking iron supplements every other day to minimise stomach issues. I was happy with the outcome of this consultation. Once her report was sent to the GP, I requested that my NHS patient records be updated from “B12 deficiency” to “Pernicious Anaemia”, which was done. My ferritin level was also now normal at 54.
My first piece of advice to others is: research, research, research. There is so much information available online. In particular, the Pernicious Anaemia Society has been an invaluable source of knowledge and guidance for me. I am not sure why the fourth gastroenterologist changed his diagnosis to autoimmune gastritis, but perhaps, as I challenged him with my knowledge and understanding of this disease, combined with the two-page medical history I gave him, pointed him in the right direction, and he did some of his own research! Of course I have had some low times during this journey. My last two pieces of advice would be: firstly, always keep a detailed medical history, including a timeline of symptoms and test results. This can then be provided to a consultant or even a GP prior to any appointment (which they may or may not read!). I find it helps me feel less overwhelmed , as medical appointments can be a little intimidating. Secondly, try not to take any lack of empathy personally. This can be a tough one, especially when you feel so unwell, but if you become lost in your emotions you will be less likely to be able to clearly communicate what you need to achieve from the appointment.
So, how is life today? I believe I have been lucky not to suffer with the extreme fatigue that many people with this disease have to deal with. I do, however, continue to experience joint and muscle stiffness, mainly in my hands, elbows and neck, which is exacerbated by lack of movement, and this can disturb my sleep. The numbness and burning pain in my feet is has improved a lot, but I do think recovery will take time. My stomach acid production has been under attack for many years, so expecting to be fully recovered after only six months of B12 injections would be unrealistic. I am still “running in first gear”, and this may not change, but I am happy just to be able to run! I have practiced yoga and meditation for many years, and I believe it is a powerful practice for relaxation, and given me the resilience to keep going through some difficult times. I have a wonderful reflexologist, who has really helped with my muscle stiffness, and also identified that my thyroid is struggling. so now I take a thyroid supplement. In addition to a gluten-free diet, I also follow a 16/8 fasting diet (which means I only eat between 2pm and 10pm) and take a natural digestive supplement—Betaine HCL with pepsin— which has resolved my gastric issues by 80%.

Living with any autoimmune disease for which there is no cure does require reaching a place of acceptance. I feel privileged to have inherited my dear mum’s genes. She was my greatest guide, who accepted her own suffering with exceptional bravery and humility. She had deep love and care for others who were suffering, so I hope that by telling my story I can offer comfort, guidance, and strength to others dealing with this complex disease.

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