Louise

[Louise Broughton]

Hi

I’m Louise and live in the uk. I’m 70.

I had a very rare reaction to a drug called pegylated interferon ( Pegasys) which turned a gluten sensitivity into full blown celiac. 
I studied nutrition and dietetics about 50 years ago.

I put myself onto a totally gluten free diet about 3 months ago after what I believed to be a massive gluten flare:

symptoms:

profuse sweating - dripping off my chin

shaking dizziness brain fog

severe abdominal pain bloating and diarrhoea

vomiting and finally - passing out and crashing my head on the bath

All that lasted two days, followed by a week of nausea and bloating 

since then I have ingested small amounts of gluten ( unknowingly) and suffered abdominal pain, bloating, diarrhoea and vomiting. No fainting thank heavens. 

I haven’t been tested - in the uk we have to eat gluten for SIX weeks prior to an endoscopy - something I m not prepared to do! 
 

It isn’t difficult to eat gluten-free in the uk - but hospitality outlets tend to vary and it’s like playing Russian roulette. I was served gluten-free soup with sourdough bread last week….

anyway thank you for reading this, all tips appreciated and I would really appreciate knowing if anyone else’s symptoms are as serious as mine. Thanks Louise 😊

[Scott Adams]

Welcome to the forum! I’m sorry to hear about everything you’ve been going through—your symptoms sound so intense and scary. That reaction must have been very hard to endure, and it’s incredible that you’ve taken the steps to manage your health by going gluten-free.

It’s not uncommon for some people’s gluten sensitivities to escalate into celiac disease, especially after major physical stressors like medications or other health conditions. Your symptoms after accidental gluten exposure—abdominal pain, bloating, diarrhea, and vomiting—are shared by many here, and you’re not alone in avoiding the six-week gluten challenge before testing. Many people decide against it due to how unwell it makes them feel.

I completely understand your caution around eating out; dining can sometimes feel like a gamble, even with "gluten-free" items on the menu. For situations like the sourdough mix-up, some people find it helpful to chat directly with the chef or request packaging info if available. It doesn’t guarantee safety, but it sometimes helps.

Have you tried keeping a food diary? Also, if your symptoms get intense again, don’t hesitate to consult with a doctor just to keep an eye on your overall health, especially with the fainting spells you experienced.

This article regarding accidental gluten exposure, and the comments below it, may be helpful:

 

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[cristiana]

Hi @Louise Broughton

Fellow Brit here!

I am sorry to hear of your health issues.

If I may chip in here, I think it might be worth your while at least having the blood test to see if you have raised antibodies. Whilst I agree under ideal circumstances people need to eat gluten for a period before both the blood test and endoscopy, it could well be that your antibodies are still raised enough to show that you are a coeliac.  I gave up gluten in 2013 and it took around 8 years before my blood tests were normal again, and I was very strict with my diet.

To save time I've just copied this over from a recent post on another thread and adapted it for you - forgive me, but the advice is almost the same I have just given to another UK coeliac whose daughter has been having issues:

Generally speaking most UK coeliacs will get a lot of help from the NHS, such as a nutritionist, annual blood tests and reviews with a gastroenterologist to check for dietary compliance and any complications that can arise from coeliac disease, monitoring for osteopenia/porosis, which is something that coeliacs can be prone to, extra vaccinations where required, and in some regions of the UK, gluten-free staple foodstuffs on prescription.  Also, it has been my experience that once being on the books of a gastroenterologist means I have been able to make appointments direct with the hospital to see one, rather than being re-referred by a GP which saves so much time.

If for some reason your are finding it to get tested under the NHS you may wish to think of one other option: going private just for the diagnosis.  I did this, with a Nuffield based gastroenterologist, who also works for the NHS.  This sped up the diagnosis process by a few months and once diagnosed by him, he offered to put me straight into the NHS for a nutritionist and the other benefits listed above.  If interested, you can ring their offices and find out how much it will cost.  Usually their secretaries are very conversant with the system so should be able to give you the info you require.

I hope this may be of help.

Cristiana

 

 

Edited November 2 by cristiana

[cristiana]

PS  You asked about severe symptoms.  Yes, I can tell you that the one and only time I have taken a really major gluten hit in recent times I had chills, sweats, vomited and thought I was going to pass out.  I also felt my heartbeat was affected.  I was really concerned at the severity of the reaction.

And that was down to eating one piece of homemade fruitcake - a relative of mine had made me a lovely cake but thought all Dove flour was gluten-free, it isn't, they also do organic flour!   

Edited November 2 by cristiana

[knitty kitty]

@Louise Broughton,

Some types of interferon drugs can precipitate a Thiamine deficiency, by destroying thiamine and blocking its absorption.  Thiamine deficiency symptoms encompass all the symptoms you listed.  Gastrointestinal Beriberi caused by Thiamine deficiency has symptoms of vomiting, bloating, abdominal pain and diarrhea.  I've experienced this.  I took high dose Thiamine in the form Benfotiamine, and a B Complex.

Thiamine can also be low on the Gluten free diet.  Talk to your doctor about supplementing with Benfotiamine and the B vitamins.  

Interesting Reading:

Gluten-free diet intervention reduces thiamine intake in two weeks, increases glycaemic response and decreases body weight in four weeks, with no long term nutritional deficiencies

https://pubmed.ncbi.nlm.nih.gov/34583628/

Thiamine and benfotiamine: Focus on their therapeutic potential

https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/

[Louise Broughton]

Thank you everyone for your super responses. Louise 

[cristiana]

You are very welcome.😊  Do keep posting if we can help any further, and also if you aren't a member already I would recommend joining Coeliac UK if only for one year - they produce a very good gluten-free food and drink guide, a printed copy and also an app you can use on a smartphone which I am told is very helpful when one shops.

I think the one thing I would say is be extra vigilant when eating out.  Never feel afraid to question the service staff.  I think most of my glutenings have happened away from the home.

Edited November 16 by cristiana

[Louise Broughton]

Thanks. I ve joined coeliac uk but found them particularly unhelpful - they told me to eat gluten for 6 weeks then have an  endoscopy!

I m actually a retired hospital dietician so pretty well know what I m doing……

Louise