cristiana

Welcome to the forum, @Kenz!
Eating out is the number one threat to anyone with celiac disease. The best advice I can give is "don't"! Especially if you are supersensitive. The biggest problem isn't avoiding gluten in what you order but in how it is prepared and handled back in the kitchen where cross contamination can and does happen at multiple stages before it gets to you. You would need to have conversations with the cooks and receive assurance that your food is cooked on clean surfaces and in clean pans and handled with clean utensils, separate from anything that contains gluten.

Yes, I doubt you can find a perfectly safe restaurant--perhaps a dedicated gluten-free restaurant, but in general, very few of them exist, and they tend to be in larger cities. Super sensitive celiacs should probably just avoid eating out.

@cristiana Yes - just to add to this: my ferritin went down after my first 2 infusions (which were 8 months ago), so I got more infusions a couple of weeks ago. From those alone, I'm feeling better. It's a work in progress! Be patient! I was also taking iron supplements the entire time.
 

@TempCloud  How are you doing?  I hope you aren't reacting too badly?
I would most likely react like Trents.  That said, I have read accounts of some coeliacs not showing any symptoms after glutening, after a long break from eating gluten. 
But should that happen to you, unfortunately it should not be interpreted as the 'green light' to go back to gluten.  I am afraid coeliac disease at the present is a lifelong condition, and so, too, must be the gluten free diet. 
Here are some tips to try, to help you feel better.
 

Thank you for your response. I had read that they are more careful in the UK and the wait staff are much more aware. 
I always bring gluten-free snacks with me when I travel even here in the US. Airports are  a nightmare to find anything that is gluten-free to eat. If you are lucky enough to find a Chick-fil-A in the airport the fries(chips) are a safe bet as they are fried in a fryer that is dedicated. Five Guys is also a pretty safe bet. While the only thing they fry is their fries, they also are very careful when cooking their burgers and will change gloves, and put them on a clean grill.
Thanks again for all the info. All I don't want is to get sick on a much anticipated trip from food that has gluten in it.

Traveling to the UK with celiac disease is actually one of the easier European destinations thanks to strong allergen labeling laws and widespread awareness. Since Road Scholar is already aware of your dietary needs, take these extra steps for peace of mind: First, pack gluten-free translation cards (even though English is spoken, these clearly explain cross-contamination risks to kitchen staff). The UK uses the "Crossed Grain" symbol for certified GF foods, and most supermarkets (like Tesco, Sainsbury’s, and Marks & Spencer) have excellent GF sections—stock up on snacks like GF biscuits or cereal bars for backup. When eating at restaurants, pubs are often surprisingly celiac-friendly (look for places displaying Coeliac UK accreditation), and don’t hesitate to ask about dedicated fryers for fish and chips. For your tour meals, politely double-check with staff at each location—hotel breakfasts can be tricky with shared toasters, so request sealed GF bread or yogurt/fruit alternatives.
As for medications, there’s currently no FDA-approved treatment for gluten exposure—some find digestive enzymes (like GliadinX -- they are a sponsor here) help with minor symptoms, but they don’t prevent damage. Pack your usual remedies (peppermint oil for bloating, anti-nausea meds, etc.) and consider bringing a doctor’s note for any prescription medications. The Coeliac UK website has a fantastic restaurant guide and emergency food listings—download their app before you go. Bon voyage, and enjoy your trip with confidence!

@Scott Adams has done an amazing job at explaining the situation.  Shop at Asda, Morrisons, Tesco's, Sainsbury's, Marks & Spencers and Waitrose which have great gluten free sections and you won't go hungry.  Even small Co-op corner shops tend to have a dedicated gluten free area.  I haven't had much luck with the German store, LIdl.  Can't speak for Aldi but I think they may have a gluten free section.. 
Food labelling has become very strict here so you should be able to shop anywhere and trust their labels - if the product comes from a shared line, it will say 'May contain traces of gluten'.  If that is the case, avoid those products.  I am not sure how long you are here for but if you are here for a while I second that you join Coeliac UK who produce an app which will help you navigate the supermarket.
Personally, I would not eat pasta or pizza out., as in the words of a Food Inspector I know, there is just too much glutenous flour about in these places.  
When you order anything, make a big deal about the fact that you are a coeliac.  My line is... "I'm very sorry to be a pain but please can you make sure to tell the chef that I am a coeliac and because I throw up very quickly after being served gluten by mistake!"   That tends to work get the message home!  I find as soon as they hear that they type/write coeliac/or allergy in very big letters on the chit for the kitchen!
When the food comes out,  at the point of service, always double check what they are serving IS actually gluten free.  Twice I have narrowly avoided being glutened because my daughter or I double checked the bread was gluten free:  the poor, harried waiting staff had made a mistake and put the wrong bread on the plate.
We don't seem to have the medication that you have for glutening episodes, as you do in the US, so if you can I'd bring some with you.  
 

I agree with Trents. And if you already have other health issues, it is just one other thing to have to think about.   
But on the matter of other health issues, depending on what they are, you may find that coming off gluten might help, which could be an unexpected bonus.  

I agree with Trents. And if you already have other health issues, it is just one other thing to have to think about.   
But on the matter of other health issues, depending on what they are, you may find that coming off gluten might help, which could be an unexpected bonus.  

@LeeRoy83   
Hello again. 
Picking up on something else you said re: the shock that you may be a coeliac.
It may has come as a shock to learn that coeliac disease is a possibility, but if that is the case, although it can be at times a bit of a nuisance not to be able to eat gluten anymore, it has been my experience that most of my friends and acquaintances who have it have adapted to it well, and are thriving.  Although statistically it affects 1 in a 100 people, I know more than that, strangely, so I can see first hand how the diet can make a big difference for most people.
In the UK we are blessed with a wonderful selection of gluten free food on sale in the shops, which seems to be ever-increasing, well labelled food packaging making it easier to determine if food contains gluten, a fabulous charity called Coeliac UK who provide a lot of very helpful information, including a gluten free food app and guide that you can take shopping with you, and good follow-up care provided by the NHS.  
But that's for another day - IF you have indeed got Coeliac Disease.   Do meet up with your GP, take a list of questions to ask, and then if he wants you to take the coeliac diagnosis a step forward do let us know if we can be of help  - we can walk with you every step of the way.
Cristiana

There are some other things that can cause elevated blood antibody numbers on the celiac tests. Some other diseases, some medications (olmesartan, NSAIDs) and even some other intolerances to non-gluten foods, especially dairy. But the odds are, the elevated numbers are caused by celiac disease.

Hi @LeeRoy83 and welcome to the Forum
I'm a coeliac based in the UK, it is always nice to meet another on the forum, although I'm sorry for your recent troubles.
It sounds as if they have not provided the normal lab ranges with your results.  Is there any chance you can double check with your GP's surgery, or alternatively, if the tests were done by the NHS, you should be able to find your readings and the normal lab ranges on the NHS app, although I have to say I find it quite hard to navigate myself.
I'm afraid without the ranges it is difficult to be absolutely sure what is going on.
Cristiana

I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well.
From Coeliac UK
"The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary."
So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it.
As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.

I developed a heart arrhythmia and on several occasions had to wear a 24 hour Holter monitor. Among other things, I had premature atrial complexes (PACs) and occasional AFib. I was very fit at the time, running and cycling. This completely disappeared following my diagnosis and following a strict gluten free diet. I haven't had a single episode since, in 4 years.

I think both systems have merits and faults, but in my opinion no citizen of any country should be denied health care, and it should be a basic human right, no matter your income.

I want to stand up for the NHS! Yes, it has its issues, but after moving from the U.S. a few years ago, it’s been a real eye-opener to see just how much better the NHS is compared to the American healthcare system.
For example, I can call my GP in the morning and often get an appointment that same day. Healthcare is provided to all UK residents, free at the point of use, no matter your income or job status. That’s a massive relief. In the U.S., people regularly go bankrupt because of medical bills—it’s one of the leading causes of financial ruin. Here, that just doesn’t happen. Plus, the UK consistently reports lower infant mortality rates and higher life expectancy compared to the U.S.
No system is perfect, but the NHS deserves recognition for what it does right—and that’s a lot.
 

Thanks for sharing, Karen. Certainly a needed reminder what we already knew (and I've posted many times on this forum) but sometimes forget, namely, autoimmune disorders tend to cluster. Where one is found, you can look for others to show up eventually. The thing that is unusual in your son's case is the onset of several of them at such a young age. My sister in law, who is in her early 60's has Crohn's and struggles with constipation so I don't think that is unusual with Crohn's. If nothing else, it's the outcome of not eating much because of the pain.
Now that you know what is going on with your son and the Crohn's, we hope he is beginning to improve.

Hi there. My son is turning 16 this month. He had an endoscopy and biopsy to confirm celiac. He went gluten-free and his pain never got any better. I think it got worse. Months went by. The pain started around 7th grade. He missed a lot of school in 8th grade, and a whole lot in 9th grade. He couldn't go to school in 10th grade. All along the gastroenterologist prescribed Hyoscyamine, didn't help at all. Cyproheptadine, no less pain. Peppermint oil, ginger, Miralax, Senna. Doc said he was constipated, but I couldn't get him to have Miralax daily. Eventually he went on Linzess and no senna or Miralax. Sorry this is long, there will be a point.  We gave his school not just a doctors not, but everything, and U of M makes a lot of notes. They still turned us in for Truancy.  I didn't get him enrolled in online school fast enough.  The school would not recommend an online school and i didn't know which one to choose. 
Doc thought it was nerve pain and mental. He recommended the u of m my pain program.  Nathan did so good, 3 days a week supposed to be for 4 weeks.  Never missed, always on time.  
After two weeks, they discharged him. Said it was not  benefitting him. 
Pain went on. I had been asking if there were any other test they could do. Ultrasound, colonoscopy. Doc said we can do it, but I don't think we'll find anything. 
Finally he had a colonoscopy and another endoscopy.  Guess what, they did find something. They found a ton of tiny ulcers everywhere, from the esophagus to his rectum. They think Crohn's. I understand they didn't check for that because he was more constipated, not much diarrhea. He is getting an MRI with contrast on Sunday. Also they want him to do a cal-protectin (give a poop sample). Then an appointment on the 16th to talk about treatment. Then the probation officer on the 17th.
In the meantime he is taking Budesonide extended release.  $276.00 for 30 pills, and that's with insurance. Also he was diagnosed with hyperthyroidism, Graves disease a few months ago. If it is for sure Crohn's,  it will be three autoimmune diseases.
If someone is gluten-free for a month or more, and the pain is no better, don't stop looking. I was beside myself. Did they think he was exaggerating, lying?
I was considering taking him to a holistic doctor, who would probably recommend Peppermint oil and ginger. 
He's such a good kid. Kind of an introvert. He was on the 9th grade soccer team. He would try to go to practice and kept having to stop, the pain was that bad. Every time he ate, it didn't matter what, gluten-free chicken tenders, mac and cheese, pizza, ice cream, all gluten-free, he would eat a normal amount but stop and say, I can't eat anymore, my stomach hurts. 
If anyone reads all this, thank you. I had a gut feeling, no pun intended, that he had an additional problem. They found celiac and stopped looking. If you don't feel better, keep on your doctor to check further, keep looking.  
Take care,
Karen
 

I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well.
From Coeliac UK
"The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary."
So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it.
As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.

Hi @Farralley and welcome to the form
I have had soreness, ulcers and also find my tongue and inside my mouth is very sensitive and blisters easily (blood blisters) if I bite something sharp.  Ulcers were a big issue twice before I was diagnosed, the doctors didn't put two and two together and think of coeliac disease, but I had two episodes where I had so many, even eating toast and marmalade made me think I was chewing glass.
In your case, what you are describing could well be due to a reaction to cross contamination, or perhaps even a sensitivity to oats?  Are you consuming gluten free oats - i.e. certified pure oats, free from contamination?  You will probably know that coeliacs cannot eat standard oats, they have to be oats that are grown and processed separately from gluten containing grains, and certified as such. 
But even then, a small percentage of coeliacs cannot tolerate pure oats, in the short term while they are recovering, or even in the longer term, unfortunately.  It took me eight years before I stopped reacting to even pure oats and now eat them with no issues, but for some a reaction to the protein avenin in oats can be either a temporary or long term issue.
Another issue is you may be short of iron or B12 and other B vitamins, which can leave your mouth sore and prone to ulcers.  Have you had these levels tested recently?  If the burning continues, I'd definitely ask your doctors to do another blood test.
Lastly - you may have burning mouth syndrome, do have a look into that, which could just be a temporary reaction to something - food, a new toothpaste, reflux?
For now, in your shoes I'd probably keep an eye on any recurrences and perhaps keep a food diary to see if there is a pattern.  Have the blood test to check for deficiencies, and try to eat soft, bland food for a few days to help recovery along.
Hope this helps,
Cristiana
 

Thanks Christina. 
The Granola products I tried were marked Gluten Free so supposed to be suitable. 
I've had many tests done but no results yet but I get the results in next day or so.  
I may well have these issues due to deficiencies. Just wanted to get some anecdotal feedback about the issue before I see the GE specialist  
If and wwhenI get an answer, I'll post it her. Cheers!! Carmel
 

@Parkrunner Your journey with undiagnosed celiac disease highlights how easily this condition can be overlooked, especially when symptoms are mild or mistaken for other issues. It’s frustrating that it took decades—and serious complications like osteoporosis—before getting answers, but it’s inspiring to hear how much your health has improved since going gluten-free. The fact that you’re running again, sleeping better, and avoiding medications in your 70s is a testament to the power of proper diagnosis and dietary changes. It’s also a good reminder that celiac can manifest in so many ways (like your arrhythmia, muscle cramps, and night sweats) and that food intolerances, like lactose, often go hand-in-hand. Your experience gives hope to others—even after years of undiagnosed damage, healing is possible. Keep enjoying that gluten-free, active life—you’ve earned it!

I probably had celiac for 40 years, late 20s to late 60s, before being diagnosed.  I was a runner and had mild intestinal symptoms most of the time.  There was a couple of months in my late 40s where I had significant diarrhea every day for 6 weeks.  Saw two PCPs about it and celiac wasn't on their radar.  In my 30s, 40s, 50s, and 60s I had insomnia, hot flashes, night sweats, muscle cramps, muscle twitching, and cardiac arrhythmia.  It took osteoporosis and fractured vertebrae before I got diagnosed.  Long term undiagnosed celiac will lead to osteoporosis.
Once you go gluten-free, symptoms should away eventually.  But you may have other food intolerances.  I happen to be lactose intolerant also.  I'm in my 70s now.  In good health.  Running again.  Take no medications/drugs.  Sleep much better.  I digest more food than I used to, so I have to reduce my caloric intake.  I seem to be hungry all the time.  My cholesterol has gone up, as has my iron levels. I don't eat much junk or ultra processed food.  My bone density in improving.  Life is good!!

Hi @CarolTN
I haven't been diagnosed with seborrheic dermatitis but as @Scott Adams says, like a lot of coeliacs I do suffer from itchy skin, and now adult onset eczema. The latter started during one of the lockdowns. 
I find my skin is often itchy if the temperature changes from hot to cold or cold to hot, that seems to set it off. This time of year is bad,  I also get an itchy throat, so maybe pollen is having some effect.
I am not sure where you live but here I'm mentioning the products I buy in the UK that help me - they may be available where you live?
For my scalp, I have used with some success Neutrogena T-Gel, but I think Philp Kingsley's products for flakey, itchy scalps are amazing. I've used the shampoo and the toner.
For the rest of my skin, I use something called Adex Gel after I have showered, and then any really itchy patches I treat with Betnovate, a steroid cream, 20 minutes later, as suggested by a doctor.
I currently have some very stubborn patches around my waist, no idea what they are - Canesten anti-fungal cream makes them worse, so does Betnovate.  But when I rub the patches, they disappear, i.e. blanch, which apparently classic for dermatitis.  It's a constant challenge!
When I first got eczema I had given up chocolate and was eating cakes which contained almonds.  My blood tests showed the markers for eczema were elevated at that time - the  IgE.  I felt there might be a connection. So you  may find something in your diet isn't helping the situation, other than gluten?
Cristiana
 
 
 

This is a very good comment.  I found all sorts of things difficult to stomach for about 2 years after my diagnosis , that I was able to eat again after a while.
Eventually there was one thing that I still couldn't eat and that was pure oats (i.e. those certified uncontaminated with gluten, the only oats we coeliacs should be eating).  I think it took until I was fully healed, and my antibodies were normal at last (about 8 years, from memory!) for me to be able to eat pure oats and now I have no issue with them whatsoever. 
I remember nutritionists kept saying, "keep trying to reintroduce oats", and I thought "No way, José!", but they were absolutely right. 
It is important to note, however, that a small percentage of coeliacs do react to the avenin in the oats, in the same way as coeliacs react to gluten, and that is something that will never change for them.  I thought I was in that group, but it turns out I wasn't in the end.