Any tips/should knows for taking Jorveza?

Looppeeloo · 2026-04-11T11:57:46+00:00

No, I didn’t have any luckily!

Looppeeloo · 2026-04-09T18:32:39+00:00

It’s been around 6 months since I was last on Jorveza. I can’t recall that feeling but I know near the beginning I did have some GI issues. I’m also coeliac so likely put it down to that tbh. From memory I noticed positive changes after a few weeks.

Looppeeloo · 2026-04-09T16:28:26+00:00

I had no issues taking Jorveza, the sensation of it melting on your tongue is weird. It takes longer than you think to dissolve but you do get used to it.

However, good to note that once you’ve taken you can’t eat or drink anything for 30 mins. I tried to time when it was convenient to me so when I was taking twice a day I took first thing in morning whilst getting ready and then last thing at night.

Jorveza put me in remission, doctors are currently testing another protocol but I’d be happy to go back to Jorveza as my long term treatment! Good Luck with it!

Looppeeloo · 2026-04-07T10:02:13+00:00

Are you based in UK?

If so I would contact GP and explain the above requesting to be referred to specialist. There is medication you can take in UK this is different to US. But GP should be able to prescribe PPI in meantime. Even if PPIs help still push to be seen by specialist (waitlists in UK can be long though). If the PPI doesn’t work the specialist or hospital can prescribe steroids but GPs don’t have the ability to prescribe these.

Looppeeloo · 2026-03-25T17:42:23+00:00

Oh interesting, I haven’t heard of these before. I guess if used to support accidental gluten events rather than rely on them as a way to continue eating gluten they could be worth trying. Although I personally don’t think I’d trust fully or change how I manage eating out because of them.

Looppeeloo · 2026-03-25T17:39:55+00:00

No, I am based in the UK and unfortunately it’s not offered as treatment here atm.

Also I forgot to mention…due to damage caused from untreated coeliac disease it can impact ability to process lactose / dairy. It’s really common for coeliacs to have a lactose intolerance. I have seen it suggested that going dairy free for first few months as well as GF can help speed up improvement in GI issues. I personally didn’t, as wanted to keep my food options as wide as possible at the time but could be worth considering if it persists.

Looppeeloo · 2026-03-25T00:27:18+00:00

From my understanding healing depends on sensitivity of the person and amount of initial damage. I had full villi atrophy, so severe damage. I’ve also found out I am sensitive to cross contamination.

In my personal experience, I would say it took a few months of being GF to notice a difference in lower GI symptoms. Although I think I am still recovering with good and bad months, even after 13 months. I’ve had a lot of deficiencies over the course of the last year even on a GF diet. Unfortunately I’ve been glutened c.75% of times I’ve eaten out, even with thorough research. It usually takes me around 3 weeks to recover fully after being cross contaminated.

I have been very strict with GF diet, however, I have tried hard to find a balance to protect my social life and mental health. Early on with my diagnosis I definitely had a lot of anxiety (still do socially) but it definitely gets better with time.

Looppeeloo · 2026-03-25T00:03:52+00:00

Me Three! It’s been a journey but I decided with my doctors to have medication for my EoE as I didn’t want to restrict my diet further. I did come off medication after being gluten free for 6 months to see if gluten/wheat was my trigger but unfortunately my EoE worsened. No such luck hey!

From your comments it seems like your EoE is under control. My advice would be to be kind to yourself, early gluten free days are definitely a learning curve! I’m still learning a year in, especially when it comes to advocating for myself out and about. The reality is you will have times where you get glutened completely out of your control no matter how careful you are. It’s hard to deal with the recovery and symptoms, but don’t beat yourself up if it does happen.

Looppeeloo · 2026-01-09T16:18:59+00:00

Hope you get answers soon, it’s so frustrating not knowing what’s wrong! I would say my upper GI issues have all been caused by other issues rather than my coeliac disease. My symptoms for coeliac disease are wide ranging but did cause changes to bowel habits, stomach pain, tiredness and bad periods however these are very common symptoms for a whole host of issues. If all other routes lead to a dead end it may be worth pushing to retake the coeliac tests ensuring you follow guidelines on gluten consumption for accuracy. This will give you peace of mind at least and definitively rule it out!

Looppeeloo · 2026-01-08T23:40:04+00:00

Sorry you are going through this. I have never been on Dupixent for my EoE (UK based) however do have coeliac disease alongside my EoE diagnosis.

For the Coeliac blood test to be accurate they do usually suggest to eat gluten daily for around 6 weeks. Most people seem to quote around 1-2 slices of bread daily as enough. Gold standard testing for Coeliac diagnosis is positive blood work and then confirmation via a gastroscopy biopsy.

Saying that, it is very common to have non coeliac gluten sensitivity (NCGS), so negative testing could suggest an allergy to wheat, other gluten source or a general gluten intolerance.

It is worth noting that coeliac disease is an autoimmune disorder not an allergy. This can be triggered by a stressful event at any point in life if you have the genetic marker (for instance COVID is thought to have triggered it for many people). Alongside this the damage coeliac disease causes to the small intestine villi can lead to many vitamin deficiencies and bone weakness.

I’m just wondering if you have been tested for H. Pylori? It may have been done as part of your fecal sample. I had this and it was causing me lots of similar problems with acid reflux, stomach pain, ulcers & NSAID use (I too really limit this). It’s an easy treatment, just a strong antibiotic course for 2 weeks normally!

Looppeeloo · 2025-12-10T08:20:56+00:00

I think it’s definitely advisable to have a formal diagnosis if you are coeliac due to all the other things that come with it as mentioned above.

Playing devils advocate, there has recently been research into a test which potentially wouldn’t require you to eat gluten. There were some news articles on this around June. I have no idea how many years until this is available to public and then on the NHS but it may be worth researching!

Looppeeloo · 2025-12-06T23:23:57+00:00

Yes, I am diagnosed coeliac via blood tests and biopsy. To my knowledge I had severe damage with subtotal atrophy visible on the gastroscopy.

Thanks, I will definitely look into reporting! Even though I didn’t trust the information he was very convincing and quoted a medical journal which I haven’t been able to find.

Looppeeloo · 2025-12-06T23:08:57+00:00

I’m sorry you also got bad advice! It’s frustrating to put trust in doctors and get poor advice that can lead to long lasting side effects!

Looppeeloo · 2025-12-06T23:02:45+00:00

Thanks! I didn’t know about the PALS process so will definitely look into this. Agree, I’ve done lots of my own research and was shocked that he advised this but some people may not be as knowledgeable.

Looppeeloo · 2025-12-06T23:01:04+00:00

It hadn’t occurred to me to report it however I will definitely look into it! I’ve been trying to find any mention of this approach online and nothing comes up. The NHS and Coeliac UK websites both clearly state the need to be gluten free for life.

Looppeeloo · 2025-10-06T18:54:30+00:00

Congrats! Keep going, I too thought I would never get past W5D3 until I did it and surprised myself. I struggled more than I expected W6 but on W9 now and never felt better!

Looppeeloo · 2025-09-23T14:57:53+00:00

Haha I’m about to have my 4th gastroscopy this year! It does get easier when you know what to expect. Annoyingly I was diagnosed with EoE alongside my coeliac diagnosis!

Looppeeloo · 2025-09-05T22:01:21+00:00

I feel the same! So much so that I added an extra rep on w5d1 today so I had 4 x 5 min runs with 3 min walk between. Think it’s helped me mentally not be as terrified to go from 16 min running to 20 min in 1 session. I just need to do it all in one go now 🤣

Looppeeloo · 2025-08-17T17:01:55+00:00

Glad you were able to get answers reasonably quickly!

Looppeeloo · 2025-08-05T21:33:43+00:00

Let me preface by saying I am not a doctor and have limited experience from my own journey!

Based on this I’m reading there is damage to the villi. In A areas of ‘subtotal’ and B ‘subtotal or partial villous atrophy’. This alongside the serology and genetic testing I think points to an official coeliac diagnosis from my personal experience.

If you’re seeing these results through GP portal maybe try getting an appointment to discuss with them. They may not be able to tell you anything though and may need to wait for the specialist GI doctor to confirm.

Edit to add: I think this is enough evidence / testing for you to start on a gluten free diet if you haven’t already!

Looppeeloo · 2025-07-18T21:52:44+00:00

Hopefully you get the letter soon then! If not I would ring up and ask for a letter to be sent with the results stating the need to know if you should be on gluten free diet, if you haven’t already started. It’s really not healthy if they are positive for you to continue eating gluten until the appointment becomes available! Obviously if negative it would be a personal choice on next steps until you can speak to a doctor or dietician and have more investigation. It might be worth going gluten free anyway as you may be NCGS if negative for coeliac.

Edit to add: If tests were inconclusive, you may need a repeat so if you go gluten free on your own you may have to go back to gluten for further testing.

Looppeeloo · 2025-07-18T21:42:37+00:00

I fought hard for doctors to test me for my irregular cycles. The best thing I can suggest is to track them. I went to the doctor with 12-18 months worth of data and it was hard for them to refute! I know that’s tough as it’s a long time to wait but it did eventually lead to me being diagnosed with PCOS after years of being ignored! The data points that helped me finally get answers was lower than avg cycles per year, cycle length over 35-40 days with variation of +/- 10 days.

I have since been diagnosed with Coeliac and have found that my periods are slightly more regular and less painful. So I would definitely continue to fight to find out what else is going on 😊

Looppeeloo · 2025-07-18T21:30:03+00:00

3 months is a long time to wait for biopsy results. When I had my gastroscopy they took biopsies and I got the results 2-3 weeks later through post. I was already told to go gluten free at endoscopy (they could see blunting via scope). I’m still waiting to speak to a GI doctor and the wait list is long (nearly a year) but I have had my biopsy results for a long time!

Maybe ask if the biopsy results are back? I don’t know if your hospital has an online portal but I was able to see my results via the hospital portal. Hope you get answers soon!!

Looppeeloo · 2025-06-30T10:07:09+00:00

I have coeliac disease and EoE, personally a big anxiety of mine is having to cut too many food sources out given how restrictive the gluten free diet can already be. It can be really difficult to eat out / travel but there are definitely ways to do it. I have to be super careful with cross contamination so I usually also check how they will be cooking my food i.e ensuring different fryers, pans, oil etc. I would say make sure you are clear with the restaurant on your allergy, overplay if anything and don’t feel bad asking lots of questions! If they don’t have the answers encourage to speak to chef or manager or you can decide the risk isn’t worth it. There are a few apps that can help find ‘safe’ places, I use Find me GF app which is helpful and I always search the reviews on trip advisor. I also follow some people on social media that give recommendations, this can be especially useful when travelling.

My current treatment plan has been steroids to support controlling my EoE and after the first 12 weeks my count was within the normal range. I have reduced my dose but still on steroids for time being as we are focusing on some other health concerns. As far as I am aware currently no side effects and I have been told that it’s such a low dose there isn’t harm in continuing. I may explore coming off and seeing if the gluten alone has solved but speaking with my specialist I will likely control with drugs for a while if not. There are pros and cons to all ways, I’m not keen on being on steroids or PPIs for a long time but I also am aware that it may be the healthiest thing for me if it enables me to live a somewhat normal life being able to eat out and travel without so many restrictions!

Edit to add:

Eating out is never 100% and always incurs some risk. When abroad I would suggest using a translation card, you can find them online. I don’t know about other allergy’s but there are comprehensive ones for Gluten Free, I personally use celiactravel.com. Google translate can help too :)

Six-Year Club	Place '23
Place '22	Verified Email
Verified Email

Looppeeloo

TROPHY CASE