cristiana

I have found the same in the UK I don't know what your stance is on this, but I'm exasperated by it all because I'm fed up of checking labels and finding lots of food manufactured in the same environment as gluten (and other allergens) and huge companies eg Kelloggs thinking it's fine to warn you and that (in a sense) it's ok then for you to consume it! NCGS and coeliac are serious conditions - it's like saying to us, go on then poison yourself and make yourself ill. My NCGS has an affect on my brain that leads to panic and depression so I'm in constant anxiety about eating ANYTHING!! I'm currently in Spain and find that I relax a lot more due to the clear labelling 
I reiterate Full marks to Spain!
Karen 

Hi cristiana 
 
thank you so much ! When I get back to the UK I will definitely look into all of this. I’m fully prepared to go private at this point too . Thank you for all your help and I will definitely report back when I have some answers! 

I think getting your own pans may help.  Good idea.   It is great you are having an endoscopy as you should get some answers then.  If it isn't gluten a problem like a hiatal hernia could be causing the issues, quite a common issue.    Do keep us posted.

PS
Sorry @Sabrine, I missed your last point about fattening food.
I was in this place at diagnosis, I've never lost weight so fast but I can tell you that now it has come back on, and more!  😂
These foods are full of good fats, and are naturally gluten free.
Avocados. Cheese. Dark chocolate. Whole eggs. Fatty fish. Nuts. Chia seeds. Extra virgin olive oil.  Also, if you can tolerate dairy, go for full fat anything.
However, as I said, if you opt for an endoscopy please don't give up gluten altogether before the test:  normally, it is advised to keep eating 2 slices of glutinous (i.e. normal) bread or the equivalent DAILY until the test.  I took the view that this was the 'last chance saloon' to eat what I might miss most after going gluten free, so ate the equivalent in Weetabix and McVities Penguins!
Cristiana
 

Increasing the fat content in meals can help individuals with celiac disease feel less hungry by providing longer-lasting satiety, since fats digest more slowly than carbohydrates and proteins.
Fats take longer to digest compared to carbohydrates and proteins, which helps in maintaining a feeling of fullness for a longer period. Fats play a crucial role in the production of satiety hormones such as leptin, which signal to the brain that you are full. Fats provide a concentrated source of energy, meaning even small amounts can significantly contribute to the feeling of being satiated.
By incorporating these healthy fats into your diet, you can manage hunger more effectively, leading to better overall nutritional balance. 
This article may be helpful:
 
 
 

H @Staci19
I agree with Trents.  Also, 'google' healthy fats and buy these products if you can (such as tinned fish, nuts, advocado, cheese). If you can tolerate dairy products, consume full fat versions.   When your weight increases, you should see a difference in your figure.  For myself, I am currently trying to lose some weight, having lost a lot of weight when I first was diagnosed over ten years ago it piled on again after a year or so!
 

Hi Amanda
I had a friend whose father was a coeliac and he was the sort of man who would be very thorough and ring manufacturers if he was in any doubt about a product containing gluten.  He made a point of buying Tesco's yeast extract.  I've used it myself more recently as I missed Marmite which I do know can contain traces of gluten, and I haven't had any issues.   You may wish to contact Tesco's HQ to be doubly sure, but I think it is safe.
Cristiana

Hello @Jessica Hoffman and welcome to the forum
It is possible you are suffering from vitamin and mineral deficiencies - were any levels checked? If so, I wonder what your Iron and B12 levels are like, as being deficient in either could make you very tired.  Of course, two other reasons for fatigue are Thyroid issues and also diabetes.  Have you had tests for these?
One other possibility - do you think you might have had COVID recently? A friend of mine has and it has left her feeling very tired indeed.
Cristiana

@Blue Roan  Hi Blue, sorry as this is going to have to be a bit of a rushed not properly edited post as I'm going on a trip for a few days but will try to check back on replies, if there are any, when I can.
I have felt like you do (and still sometimes do) with arms and legs not being mine.   It wa particularly bad following a neck injury (picking up my small son and flying him like a plane above my head!) shortly after my diagnosis.  Also, for some months, my arms and legs didn't feel right, and it felt like I was walking on board a ship, when your foot lands on the deck but the deck isn't where you think it should be.  Or hard ground seemed 'spongey', and not hard.  You do complain of neck pain and stiff shoulders and in my opinion that is important, you could have the same issue.  (I ought to add that my 'son flying' injury was so fleeting and seemingly inconsequential when it happened, it took me months to put two and two together that it might have been the thing that triggered the sensations!).
I pursued a slew of tests and it turned out, once I'd had an MRI, that I had badly aligned discs in my neck which were the cause - I was diagnosed with cervical dizziness (have a google).  Have you any history of whiplash?  I am not a medical person, but feel that sometimes putting your neck out even if very slightly could cause problems with old injuries.
Also, I used to wake up with completely numb arms from the elbow down, or pins and needles in my fingers, before diagnosis.  That was separately diagnosed as ulnar compression.
When we are first diagnosed with coeliac disease long term deficiencies can cause all sorts of weird issues, too. You may have normal levels of B12 and iron but having read quite a bit about it, sometimes these levels, if they are on the lower side of normal, would be considered too low in other countries, or perhaps not high enough for your body to really benefit.  Case in point, I once read on this forum that B12 levels in Japan are considered normal when at 500, whereas my lab, which used the same measurements, said that anything at half that value was normal, here in the UK.  Another example with iron levels, a maxillofacial  consultant told me he wanted to give me an iron infusion when my levels were at 15 (normal in the UK) but in his view they should be 40 or above to prevent ulcer issues I was getting at the time.
It is just possible that as your levels improve, so too will the issues you speak of.   Keep us posted.
Cristiana

@Blue Roan  Hi Blue, sorry as this is going to have to be a bit of a rushed not properly edited post as I'm going on a trip for a few days but will try to check back on replies, if there are any, when I can.
I have felt like you do (and still sometimes do) with arms and legs not being mine.   It wa particularly bad following a neck injury (picking up my small son and flying him like a plane above my head!) shortly after my diagnosis.  Also, for some months, my arms and legs didn't feel right, and it felt like I was walking on board a ship, when your foot lands on the deck but the deck isn't where you think it should be.  Or hard ground seemed 'spongey', and not hard.  You do complain of neck pain and stiff shoulders and in my opinion that is important, you could have the same issue.  (I ought to add that my 'son flying' injury was so fleeting and seemingly inconsequential when it happened, it took me months to put two and two together that it might have been the thing that triggered the sensations!).
I pursued a slew of tests and it turned out, once I'd had an MRI, that I had badly aligned discs in my neck which were the cause - I was diagnosed with cervical dizziness (have a google).  Have you any history of whiplash?  I am not a medical person, but feel that sometimes putting your neck out even if very slightly could cause problems with old injuries.
Also, I used to wake up with completely numb arms from the elbow down, or pins and needles in my fingers, before diagnosis.  That was separately diagnosed as ulnar compression.
When we are first diagnosed with coeliac disease long term deficiencies can cause all sorts of weird issues, too. You may have normal levels of B12 and iron but having read quite a bit about it, sometimes these levels, if they are on the lower side of normal, would be considered too low in other countries, or perhaps not high enough for your body to really benefit.  Case in point, I once read on this forum that B12 levels in Japan are considered normal when at 500, whereas my lab, which used the same measurements, said that anything at half that value was normal, here in the UK.  Another example with iron levels, a maxillofacial  consultant told me he wanted to give me an iron infusion when my levels were at 15 (normal in the UK) but in his view they should be 40 or above to prevent ulcer issues I was getting at the time.
It is just possible that as your levels improve, so too will the issues you speak of.   Keep us posted.
Cristiana

I never eat pasta or pizza out, in a busy restaurant it's too easy to be served the wrong portion, as I've found to my cost. 

I've not baked bread for many years, but I had a look at a few websites and found this on Quora, as someone posted their bread had this problem.
I really don't know if it will help, but it might help.  
https://www.quora.com/If-my-whole-wheat-bread-smells-like-alcohol-does-it-mean-that-I-undercooked-the-bread#:~:text=What makes yeast bread taste,given sufficient time to work.
No. It means that you let rise too long.
As the yeast does its thing, it gives off CO2 and alcohol. Normally the alcohol content us so low that it is unnoticeable. However, too long of a rise will result in enough alcohol production that the bread smells and tastes of it.
Next time, don't let the bread rise so long. Let it double (usually 1 -2 hours) punch it down and let I rise again just until it's doubled again (about half the first rising time) and then form into loaves and give it another 30 minutes or so before baking.
Also, If your recipe doesn't have any sugar, honey or other sweet stuff in it, try adding a couple of tablespoons sugar or honey. That will give the yeast a boost so that it produces more CO2 faster and makes the bread rise faster which also cuts down on alcohol production.

I'm so sorry you had this experience @GardeningForHealth.   I've had this happen to me.  Responding so violently to gluten as that (I'm the same)  puts you off eating out.  When we go on holiday this year I've decided I just can't risk being that ill so will be on a permanent gluten-free picnic, buying things which are certified gluten-free in stores and eating veg, chicken, salad and rice at our timeshare.  It's such a pity as eating is a great part of a holiday for me, but I'd rather be well.  When I had a major glutening experience a few years back I also got terrible ectopics and felt really faint, chills, the lot - and thought I'd pass out.  I just don't want to do that when I'm not at home.  I didn't need to go to hospital, but I remember at the time it felt like I might!
I've decided to view my holiday as a kind of health farm experience and just eat simple foods, I need to lose weight so it will be a bonus if I return from holiday a few pounds lighter for a change!
 
 

Just to say I am the same as trents, and another friend of mine, too, diagnosed roughly at the same time as me.  In the old days we felt unwell, now our reactions are very much worse if we are glutened. 

Have you considered increasing the fat content of your meals? 
Increasing the fat content in meals can help individuals with celiac disease feel less hungry by providing longer-lasting satiety, since fats digest more slowly than carbohydrates and proteins. Here are five healthy ways to incorporate more fats into a gluten-free diet:
Include sliced avocado in salads, on gluten-free toast, or in smoothies.  Drizzle extra virgin olive oil over salads, vegetables, or use it as a cooking oil for sautéing.  Add a handful of almonds, walnuts, chia seeds, or flaxseeds to your meals or snacks.  Include salmon, mackerel, sardines, or trout in your diet a few times a week.  Opt for full-fat yogurt, cheese, and milk instead of their low-fat counterparts. Fats take longer to digest compared to carbohydrates and proteins, which helps in maintaining a feeling of fullness for a longer period. Fats play a crucial role in the production of satiety hormones such as leptin, which signal to the brain that you are full. Fats provide a concentrated source of energy, meaning even small amounts can significantly contribute to the feeling of being satiated.
By incorporating these healthy fats into your diet, you can manage hunger more effectively, leading to better overall nutritional balance.

Scott has good advice. Also, craving of food can be due to vitamin and mineral deficiencies. If you are relying heavily on gluten free flours and gluten free ready made foods you are not getting much nutrition. Those things aren't required to be fortified like as are mainline products using wheat flour. Are you taking any vitamin and minerals supplements?

He could have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but for which there is not yet any diagnostic testing available. It does not do damage to the small bowel lining as does celiac disease so it does not produce antibodies that can be detected by a blood test or and, of course, a biopsy of the small bowel lining would be negative. A diagnosis of NCGS is arrived at by first ruling out celiac disease.
My suggestion is that you need to feed you hubby generous amounts of wheat products daily for at least three weeks, the ones he seems to tolerate, and then have celiac antibody testing done. Ask for these tests:
1. Total IGA, 2. TTG-IGA, 3. DGP-IGA and 4. DGP-IGG
Push for these four tests which is a more complete celiac panel. Many docs will only order minimum testing consisting of the TTG-IGA.
If the antibody testing is negative, he could have NCGS or something else is causing this reaction pattern. First, however, see if you can eliminate celiac disease.

@Chris butcher
As you are feeling so unwell, it might be worth requesting a cancellation appointment from your hospital.   Perhaps worth ringing the hospital concerned and to speak to the booking team, to ask them to please contact you if anything comes through?  Do you know how much longer you have to wait?
But that aside,  I think because you are feeling so unwell you should go back to your doctor and let him/her know.  They might also be able to speed up your endoscopy?

Acid Reflux/GERD is very common in the celiac population. Chris, you should get checked out for other gut maladies that are often found in the celiac population such as an H. Pylori infection or SIBO (Small Intestine Bacterial Overgrowth). You probably need an upper GI scoping to check for a hiatal hernia as well or an ulcer.

Hello Bran and welcome to the forum.
The strange thing about coeliac disease is that people react to glutening in so many different ways.   Some people know they have been glutened because they get gastric issues.  Others find their symptoms are neurological - twitching, tingling and numbness, for example. Some individuals get both.  YetI have one friend who hasn't a clue if she's been glutened or not - there is no reaction at all.
Returning to your issue, I am not a doctor but it could well be that your loss of taste ticks the 'neurological' box.  
Your system will take time to recover - some find it takes a few days, others a bit longer, before they feel right again.  I attach a link below with some great tips on what to do if you have been accidentally glutened.
However, it is just possible that your glutening has coincided with a virus, and not even necessarily COVID.  My grandmother temporarily lost her sense of smell and taste many many years ago for a time and from memory the doctors put it down to a virus.  
As I say, am not a doctor - I think I might give it a few days, then speak to one if it carried on for much longer.  I saw an item on the news where patients were helped when they had temporarily lost their sense of smell or taste, can't quite remember which, through COVID, and it really helped them regain what they had lost.  I think the treatment involved exposure to strong flavours or smells first.  Sorry can't quite remember what it involved, but basically it helped.  
Do come back to us if we can help further.
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
 
 

Hi, @Blanco
Yes, I missed the Northern Lights too.   Although my sister tells me there are some more due soon, I think this coming week.  Maybe we'll see them next time, hope so, I felt quite cross that I was asleep in front of the TV when the last lot happened!
I agree with Trents, now you have your official diagnosis you won't be expected to keep consuming gluten.  Well done for keeping things going as long as you did.   I would say join Coeliac UK if you can, at least for one year - their food and drink guide and app are fabulous. When you see your nutritionist they may well give you a lot of money off vouchers for gluten free food that you can try, it's all one big adventure!
If you need help with interpreting any more blood test results let, us know.  It could be they are just checking to see if the joint pain has another cause, but so often many different symptoms improve once you have left gluten behind - some that you have never associated with gluten.
Thanks for keeping us posted.   
Cristiana
 
 

Ceslater am so sorry to hear about your situation and that of your daughter's. Yes I had blood done in Feb then biopsy May and didn't get results til September, ended up chasing through PALs patient liaison. My daughter is now diagnosed too, but purely on ttg blood test as her levels were really high .. keep pushing your hospital, it felt soul destroying but in the end I got there.... Best wishes to you both

As strange as it may sound, low stomach acid can actually be the culprit instead of excessive stomach acid such that taking proton pump inhibitors and frequent antacid over the counter remedies are actually counterproductive. PPIs increase stomach PH and inhibit digestion of food and the assimilation of vitamins and minerals. They are way over prescribed and way under monitored. They can be very helpful as a temporary healing agent but most of the time docs put people on them and leave them on them indefinitely. On label usage is like 8 weeks.

Thanks for the reply, Christiana. Sorry to hear you've got pretty much exactly what I have. It's really debilitating at this point. 
I've been on Omeprazole (after initially taking Nexium) for reflux for a good few months. Apparently that can also cause issues with your stomach so my latest Gastro doc has advised that I come off both that and the Alverine as they're not making a difference to me. 
My reflux hasn't been as bad recently but I'm likely restricting my diet a bit anyway due to having less of an appetite so that might be helping that. 
I was advised, a few weeks back when I was still on both sets of pills, to take Gaviscon after each meal and before bedtime and it possible did reduce the sternum pain but at the point I need both Omeprazole and Gavison my concern is that there's an issue which needs properly addressed instead of another medicine on top of it that only alleviates things at times and doesn't in any way solve the problem. Can't do that for the rest of my life. 
The more I hear about glutening, the more it rings true with my issues. I've been wheat free for a week now but yesterday was the first time I had symptoms like the sternum pain in that period. It came on after I felt severly fatigued midafternoon. 
The doc has initially ruled out Costochrondritis for me as the pain is inside my sternum rather than being sore to touch on my chest but I'm going to ask again about that. I'll definitely look Tietze Syndrome up. 
I really hope your pain eases up soon. It's awful to deal with.