Newly Diagnosed & Anxious

[EmilyT]

Hi everyone,

 

I'm a 29 year old woman from the UK who has recently tested positive for coeliac antibodies on a blood test. I'm awaiting a biopsy & I'm really struggling with worrying about the related diseases caused by coeliac. Hoping to have a bit of a ramble & see if anyone can offer a different perspective please. 

 

I've been having GI symptoms ever since a really bad case of norovirus in December. Had a few trips to my GP which eventually lead to the positive coeliac blood test. I'm now waiting for a biopsy & have very unpleasant GI symptoms (bloating, loose stools, indigestion, abdominal pain). 

 

My main concern at the moment is the increased risk of other serious things like cancers (particularly the T cell lymphoma with poor prognosis), MS, and osteoporosis. But I'm mostly concerned about cancer. I have had health anxiety following my mum's cancer diagnosis in my teens & I've worked incredibly hard for years to overcome this. So it feels very strange that after all those years of worrying & overcoming my health anxiety that something is actually wrong with me! I have definitely lapsed back into old ways of catastrophic thinking & I'm just really struggling with feeling like I am bound to have lymphoma or will get it in the future. 

 

Does anyone have any info please on how likely cancer is as a coeliac? I've read lots of conflicting things & hoping for a bit of perspective on this. Apologies for coming across dramatic at all or scaring anyone else! My biopsy is thankfully only a few weeks away & I really can't wait to cut the gluten and feel in control of my health again. 

 

Thanks in advance,

 

Emily x

[EmilyT]

Would like to add that I have also experienced (inconsistent) low iron & folic acid over the past 10 years or so. I have 6 monthly blood tests to check they haven't dropped. Weirdly they aren't always low & I only take moderate over the counter supplements, unless they are very low.

But if coeliac is confirmed via biopsy I'm not convinced that it's only been since the norovirus in Dec. I do wonder if this may be behind those odd blood tests for all those years too (which, in turn, concerns me about all those years of damage!). 

Emily x

[trents]

EmilyT, lymphoma of the small bowel is 4x more common in the celiac population than it is in the general population but the rate is still pretty low. But with the family history your anxiety is understandable. 

How far out is your endoscopy/biopsy? I'm sure you realize that you must continue to consume regular amounts of gluten until that procedure is done.

Cany you share how high your antibody test scores were? Please include a reference range for positive v. negative as different labs use different standards. It has been common in the UK during the pandemic years to grant a celiac diagnosis without biopsy if the tTG-IGA antibody score was 10x normal or greater.

[EmilyT]

9 minutes ago, trents said:

EmilyT, lymphoma of the small bowel is 4x more common in the celiac population than it is in the general population but the rate is still pretty low. But with the family history your anxiety is understandable. 

How far out is your endoscopy/biopsy? I'm sure you realize that you must continue to consume regular amounts of gluten until that procedure is done.

Cany you share how high your antibody test scores were? Please include a reference range for positive v. negative as different labs use different standards. It has been common in the UK during the pandemic years to grant a celiac diagnosis without biopsy if the tTG-IGA antibody score was 10x normal or greater.

Thank you very much for your reply, that's very kind of you.

I forgot to mention that my mum's cancer was breast cancer so nothing related to lymphoma & no other family history except my Dad's type 1 diabetes (he's also being tested now for coealic in case). 

My blood test results say IgA 19U/mL and the only other numbers I can see are 0.00 - 7.00U/mL.

My biopsy on the NHS is around 6 weeks (already been waiting 3) but I am very tempted to go private. I have a consultation with a private gastroenterologist this Thursday & will likely book the endoscopy with him sooner.

And yes, thank you I am aware about continuing to eat gluten. I've been eating gluten in at least 2 meals per day.

The 4x more likely risk of lymphoma is what I've read so thanks for confirming. I'm aware this is 4x a very small number, so I know I need to be a bit more rational!

Thanks again. 

 

[knitty kitty]

@EmilyT, welcome to the forum!

I understand your concern about cancer and Celiac Disease.  

Studies have shown high dose Thiamine (Benfotiamine) to have anticancer effects.  

Correcting nutritional deficiencies is important for us due to the malabsorption that occurs as a consequence of Celiac Disease.  

Discuss with your doctors and nutritionist the importance of supplementing in order to boost absorption of essential vitamins and minerals.  

References:

High Dose Vitamin B1 Reduces Proliferation in Cancer Cell Lines Analogous to Dichloroacetate

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3963161/

Thiamine mimetics sulbutiamine and benfotiamine as a nutraceutical approach to anticancer therapy

https://pubmed.ncbi.nlm.nih.gov/31810115/

[cristiana]

Hi Emily

I'm a coeliac based in the UK, and was diagnosed eleven years ago.

My mum was diagnosed with breast cancer on my son's fifth birthday, two years before.  The strange thing is that I have never put two and two together, but perhaps it added to my health anxieties post-diagnosis, of which there were many.  I had a lot of odd symptoms running up to my diagnosis, and then beyond, things like numbness, tingling, rib pain, hip pain, hallucinations on waking, painful bloating, back pain, even one episode of double vision. As a seasoned health anxiety sufferer, the list of things I diagnosed myself with was very long indeed.  Once I saw a consultant about something else and he actually asked me if I worked in healthcare, I seemed to know a lot about it! The good news is that things really began to settle down once my antibodies came down, and also once my blood iron and B12 levels were better. 

As regards that Lymphoma, try not to worry about getting that particular cancer,  it is still low in coeliacs. Once you are diagnosed, coeliacs get annual NHS  blood tests and follow-up reviews with a gastroenterologist which will help spot anything amiss.  

I don't blame you for going private with your endoscopy, it will be nice to get it behind you.  My one bit of advice for that is to make the most of eating all the things you enjoy that contain gluten (my thing was McVitie's Penguins!)

Join Coeliac UK when you have your diagnosis confirmed, they have a great app and food and drink guide which will help you when you go out shopping.   

I hope all goes well, do come back if you have any questions re: the system in the UK.

Cristiana