cristiana

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. 
 

Hi @DynamoCappo
Your post caught my eye as I, too, have found myself in the Accident and Emergency Department, as we call it in the UK, with pain between my shoulders, and awful burning pain in my chest, where the stomach lies just under the ribs.
Those pains come in particular when I have gastritis/reflux.   I find taking a few days Omeprazole and/or following a simple diet for a while (gastritis/reflux diets, there are lots of examples on line) really helps.  Sometimes I take Gaviscon after a meal which also helps.  Sleeping with a wedge under my pillow at night means that the reflux can't burn my throat, and that makes a big difference.  Trying not to eat too close to bedtime (allow about 3 hours if possible).
These flares can be caused by bad eating - too much spicy, fatty food for example but also by glutening. 
Also, I get rib pain if I lift heavy weights or do too much driving.  This has been diagnosed as costochondritis.. There is also another syndrome called Tietze Syndrome which affects the sternum - another doctor told me I had that.  Worth googling both conditions.
If I have a flare of costochondritis with gastritis/reflux the combination is horrendous, hence the trip to hospital!  I was convinced it was a heart attack -  I can definitely relate!
 

Hello! Wanted to give an update. I began taking supplements—B complex, magnesium, and D3–and the tingling and numbness is soooo much better. The tinnitus is still there but it’s manageable. Thank you all for your help! 

PS  If you get pain that goes down the left of your lower abdomen that too can be bloating.  I got that for a while, but it went after I gave up lactose for a few weeks.  While you are healing, you may be temporarily lactose intolerant, and that can cause gas and bloating.  I had a sigmoidoscopy just to be sure that pain wasn't anything to worry about as at times it really hurt - but nothing was found.

@ruthbrown89  Welcome to the forum!
Your post caught my eye because that's a familiar pain to me, and  I've had clear endoscopies and colonoscopies over the years.
I remember once when it was particularly bad I showed an ultrasonographer where the pain was and she said, "That's your stomach!".
I feel that in my case the pain is caused either when I'm bloated, or when I have excess stomach acid.  Both conditions caused by glutening or just by eating too much rich food or too much spicy/acidic food.  I still get it from time to time, even after having Ttg numbers return to normal levels.  It can actually cause my ribs cartilage to feel painful (google costochondritis).  
Apart from watching your diet, you may find it helpful to take the pressure off that area by not wearing tight waistbands and underwired/tight bras. 
I hope this helps.
Cristiana
 
 

Welcome to the forum community, @Cristal31!
Products like this are always a crap shoot for celiacs. The gluten content from cross contamination will likely vary from one batch of the product to another and will cause reactions for those celiacs in the more sensitive range of the spectrum but not for those who are less sensitive or who are "silent" celiacs. There are just too many variables to make a definitive statement about whether or not they are safe but when in doubt, the best practice is to abstain.

I agree christina, there is definitely many contributing factors! I have the pain today, my pelvis, hips and thighs ache! No idea why. But i have been sitting at work for 3 days so im thinking its my back.
This disease is very mysterious (and frustrating) but not always to blame for every pain. 

Still dealing with this rash on my legs. I've eliminated ringworm (through use of topical ointments). And I also know it's not shingles, as I've never had chickenpox before and I'm still fairly young.
Through a lot of online research, I'm leaning more towards dermatitis herpetiformis, eczema, or psoriasis. I've actually got a doctor's appointment in May (finally got some insurance) and I'm going to bring it up then. I'm feeling really hopeful and excited to maybe be getting some relief soon.
 
Big thanks to everyone for the suggestions and positive thoughts!

Chiming in here to say that if dermatitis herpetiformis and shingles are eliminated, one other thing it might be is adult onset eczema.  I got it during one of the lockdowns, so I guess it must have been about 21/2 years ago. 
I had it first on my chest, then it went to my scalp, then my midriff.  It seemed to be both sides too.  My doctor thought at first it might be a fungal infection and gave me an anti-fungal cream but that didn't help at all.  I then tried an over the counter and therefore mild steroid cream - no help either, in fact, it seemed to make things worse.  Finally another doctor prescribed Betnovate which is a much stronger steroid and it almost worked overnight - I'd apply a moisturiser first, then the steroid cream 20 minutes later.  Amazing stuff! 
Around that time I happened to have a blood test and my IgE levels were much higher than normal; I looked at my diet and realised I'd been eating a lot of almonds and I wondered if that was what set it off, as I gather for some it can be a trigger. Might be worth looking at something you are eating other than gluten that could be triggering a reaction.

@Richard1973, welcome to the forum! 
@cristiana is on the right track, stay hydrated. 
Also have your potassium level checked.  Low potassium causes dry skin and dehydration.  
We need Thiamine B1 to keep our potassium level correct.  Without sufficient thiamine, we lose potassium and our skin loses moisture.  
Ask your doctor about supplementing with vitamins and minerals.  The Gluten free diet can be lacking in the eight essential B vitamins, Omega Threes and minerals.  

Hi @Richard1973 and welcome to the forum.
I did go through a period of feeling thirsty all the time and my first thoughts went to asking my GP to test me for diabetes.   Have you had a test for this condition as if not I think that would be the first thing to rule out?  
If you were suffering from diabetes, either Type I or Type 2, I've read that can cause dry skin and paresthesia. 
Cristiana
 
 
 
 

Oh, okay. The lower case "b" in boots in your first post didn't lead me in the direction of a proper name. I thought maybe it was a specialty apothecary for people with pedal diseases or something.

Hi @trents
Just seen this - Boot's is a chain of pharmacies in the UK, originally founded in the 19th Century by a chap with the surname, Boot.  It's a household name here in the UK and if you say you are going to Boot's everyone knows you are off to the pharmacist!
Cristiana

Yes, that's probably best. (Honestly, that is an extraordinarily high number, I've never seen anything like that. I repeated my blood tests (not taken while pregnant BTW); before giving up cake, pizza, and beer, I wanted to know for sure! You don't wanna mess around with anything while pregnant. Congratulations and best of luck!

You can always do the gluten challenge later, after your pregnancy, should you need a formal diagnosis. I think it's best to play it safe in this case.