cristiana

I am unsure, did the breathing issue start with eating gluten free, or was that the reason you were tested for Celiac?
Shortness of breath can be a symptom of thiamine (vitamin B1) deficiency, particularly when accompanied by other symptoms. Vitamin D deficiency can cause breathing symptoms in children and adults. Since Celiac Disease causes malabsorption,  there are several vitamins that can cause shortness of breath.
This is an older post, but may help you understand:
"The addictive nature of gluten is often overlooked. For some, the first days and weeks of following a gluten-free diet are characterized by food cravings, disorientation, irritability, sleepiness, depression, mental fogginess, fatigue, and/or shortness of breath."  
 

Probably the best way to eat it would be to make curry regularly and just eat it that way.

Thanks, Scott.  Interestingly I've seen another post on another forum stating Vitamin C helped someone.  I've tried some /c supplements and whether it is just the sudden improvement in the weather here or Vitamin C it really works, but the inflammation has definitely improved.  I'll look into turmeric more, and thanks for the advice re: blood thinning and eating on a full stomach, something I didn't appreciate.

Hi Olioil!
I definitely felt worse before feeling better.  I ended up having to do an elimination diet to find out that soy really bothered me and that oats caused a severe reaction as well.  It took me about 6 months to really start feeling pretty good and that was after eliminating the other foods that bothered my digestive system.  
I hope that you start feeling better soon!

I felt worse before I felt better... it took a while.  Soy containing products hurt my stomach - that took about a year to right itself, and dairy made me feel bloated and very uncomfortable.  (Damaged villi can cause temporary lactose intolerance, once they are healed often dairy no longer causes problems.)  I also found certain foods containing fibre hurt my gut for a while as I healed.  

I felt worse before I felt better... it took a while.  Soy containing products hurt my stomach - that took about a year to right itself, and dairy made me feel bloated and very uncomfortable.  (Damaged villi can cause temporary lactose intolerance, once they are healed often dairy no longer causes problems.)  I also found certain foods containing fibre hurt my gut for a while as I healed.  

Thanks!

Hey, @Baz,
My yawning and anxiety were due to Thiamine deficiency.  
I was yawning all the time and having more frequent anxiety which escalated to panic attacks.  The Thiamine deficiency progressed to Gastrointestinal Beriberi, which has the same symptoms as you mentioned, gas bloating and diarrhea.  
Alcohol consumption can cause Thiamine deficiency by itself, but add to that poor absorption  caused by Celiac Disease, and you're behind the eight ball.  
We need more Thiamine if we eat a high carbohydrate diet or drink alcohol. 
We need more Thiamine when we're ill, emotionally stressed, or physically active outside in hot weather.  Heat and light destroy Thiamine, so working and exercising outside in a heat wave can precipitate Thiamine deficiency.
We can experience Thiamine deficiency symptoms within three days.
Thiamine is very important to the vagus nerve and the lower brain that controls the autonomic nervous system (things you don't have to consciously think about doing, like breathing and digesting food).  Thiamine also influences the fight or flight response.  If there's an insufficiency of Thiamine, the fight or flight response can have difficulty turning off.  So irritability and anxiety escalate.
Thiamine deficiency can affect balance, swallowing and the voice.  (Ever notice how some people who drink alcohol have hoarse, raspy voices? Low thiamine.)
Some medications can negatively affect Thiamine levels, so watch out for anti-anxiety meds and antidepressants, some diuretics and antidiabetic meds.
Thiamine and the other seven B vitamins  and Vitamin C and D work together, so take a B Complex, magnesium, and Thiamine in the form of Benfotiamine or Thiamine Hydrochloride.  Remember, gluten free facsimile foods are not required to be enriched with vitamins like their gluten containing counterparts.  Taking supplements helps boost your absorption so you can heal and feel better sooner.  
 
Interesting Reading:
Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking
 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/
 
Thiamine deficiency disorders: a clinical perspective
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/
 
Hiding in Plain Sight: Modern Thiamine Deficiency
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/
 
B Vitamins in the nervous system: Current knowledge of the biochemical modes of action and synergies of thiamine, pyridoxine, and cobalamin
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6930825/
Inhibition of α-glucosidase by vitamin D3 and the effect of vitamins B1 and B2
https://pubmed.ncbi.nlm.nih.gov/26744303/

Vitamin D deficiency.  I was depressed from age 39 until I started taking 10,000 IU a day at 64 years old.  I started being morbidly depressed at 39 because I was sure I would die on my 39 1/2 birthday.  My maternal grandfather had a massive heart attack and passed at that age.  Of course everyone said get over it, but that feeling never left, I just stopped talking about it.  I started D3 on the recommendation of my oldest friend in Spring 2015 after starting GFD Thanksgiving 2014.  I increased the dose by 1000 IU a week, until on the third day at 10,000 IU I looked at the bottle, had an epiphany and exclaimed "This stuff is sunshine in a bottle!"  Each time I go off it I get reclusive.  My first sign is annoyance at the phone and I let things pile up on horizontal surfaces and I stop reading email and avoid going out.  This last time, from May until July, my vitamin D blood dropped from over 80 ng/ml for over a year to 54 ng/ml, dispite getting several hours of full S. Florida sun every week.  Proof to me that it was not just "in my head".  In 2019, the first time a doctor agreed to test me ("In Florida vitamin D deficiency is not an issue") for vitamin D it was still only 47 ng/ml.  4 years at 10,000 a day.  By the way that doctor told me to not come back because the BP meds he prescribed were not working and he accused me of not taking them.  In fact the amlodipine dryed my eyes out making wearing contacts, -10 diopter so glasses are very thick and heavy, difficult and the Lisinopril caused that persistant cough which gave me an inguinal hernia, which I am still dealing with but is improving since raising my iodine intake to 1000 mcg a day starting last September.  My father and older brother died of sepsis after 'routine' abdominal surgery.  Leaky gut. Both surgeons stated their guts were like sewing lace.

You may want to have a restaurant card like this with you just in case:
 

We've just returned from visiting family in Spain and I wanted to let any coeliacs visiting Spain know that the Mercadona Supermarkets have a fantastic range of gluten free products, all clearly marked. 
It is so impressive - not just limited to the basics bread and pasta, they clearly label anything that is gluten free as "Sin Gluten" which takes so much guesswork out of the coeliac's shopping experience. 
At the time of writing they have over 1,600 stores. In the branch we frequented near Palma the gluten free products did not have their own section, which is what we are used to in British supermarkets, but you will find the gluten-free produce alongside "normal" products, all well wrapped to avoid cross contamination.  Look out for the red, white and blue "Sin/Sem Gluten" range on the front of relevant packs.
Congratulations Mercadona!
https://info.mercadona.es/es/consejos/alimentacion/mercadona-se-une-al-dia-nacional-del-celiaco-2022/tip?idCategoria=1470731242098

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.