cristiana

@Katiec123
Welcome to the forum.
I started to have symptoms related to coeliac disease (mouth ulcers, aura migraines etc) but no gastric symptoms during my first pregnancy.  That went to term, in fact, I was 10 days over and had to be induced.  But my second baby, born 21 months later, arrived at 33 weeks.  He's now doing well, and taller than all of us - it was just an earlier than expected arrival!
I agree, it would not be wise to eat gluten  if there is any suspicion that you have coeliac disease during a pregnancy.  
It would of course be good to know for sure, one way or another, because I believe coeliacs receive extra monitoring during pregnancy in many countries.   I think it may be well worth asking your GP if you can be referred to a gastroenterologist for a formal diagnosis asap.   By the way you spell 'coeliac' I'm guessing you are posting from the UK?  If that is the case, the NHS may rush things along for you, I suspect they will. 
If it appears that they cannot refer you urgently, if you have the money for a private consultation it might be well worth it, as there is a trend here in the UK (I'm British) to diagnose coeliacs without the need for an endoscopy if the blood test results are compelling. Sounds like this is the case for you.  If you can see a gastroenterologist privately s/he might be able to diagnose you there and then (make sure you take a printout of your blood tests).
Generally, there is a lot of support for coeliacs through the NHS, with a nutritionist, annual reviews and blood tests to check for diet compliance and health related issues, DEXA scans to check bone density, extra vaccinations where indicated and in some areas, certain gluten free food available on prescription.  So for lots of reasons, if you can get a diagnosis it's worth it.
I hope all goes well with your appointment, let us know how you get on.

Good afternoon @Blanco!
It's always good to see a British coeliac on the forum.  Coeliac UK, the British coeliac charity,  is a fabulous organisation (worth joining it just for the gluten-free food guide app, by the way) but the one thing it doesn't have is a forum, so we do get quite a few British people posting here.
One of the things that stood out to me from your original post was your mention of the 'in-between' period.  It will feel strange eating wheat etc when you know that with those TTG numbers it is pretty much 100 percent certain you have coeliac disease.  But what I would recommend in your shoes is to make the most of this 'last chance saloon' to eat all the things that you will miss when you give up gluten for good. When it was my turn I can't remember eating a lot of bread, but I do remember eating loads of chocolate Penguin biscuits!  I'm so glad I did as no gluten-free equivalent has yet been put on the market and I do miss them!
The other thing I noticed in your post is the list of symptoms and your wondering what you can blame on coeliac disease, and what might be caused by something else.
The fatigue, the loss of concentration, headaches/migraines, lack of energy, brain fog, feeling hot most of the time.... those could all be part of the way it affects you.  However, like me, you may find that some symptoms stick around despite going gluten-free.   The only way to find out is to give up gluten once your condition has been formally diagnosed. 
(In my case I have for decades fallen asleep in front of the TV in the evening.  I just can't help it.  I thought once I was found to have coeliac disease and I had adopted a gluten-free diet that would stop happening.   It hasn't! - and I've been checked for diabetes and thyroid issues, it isn't those either.  But my painful migraines have for the most part gone now.)
Another thing which may be causing some of your symptoms is malnutrition, caused by possibly years of malabsorption.  Once you have been checked for deficiencies (the NHS frequently check for Iron, B12 and possibly Vit D deficiencies) you will know if you need to supplement, or eat more of a particular foodstuff.  Once your levels are normal you should feel a lot better.
One thing touched upon in previous posts on this thread is the NHS support for diagnosed coeliacs.  An NHS diagnosis should entitle you to a nutritionist, an annual coeliac review with a gastroenterologist which will include blood tests for compliance and also to check for any complications which sometimes arise from coeliac disease, DEXA bone scans to check for osteopenia/osteoporosis, to which coeliacs can be prone,  and also possibly a prescription for gluten-free staples such as bread and flour.
Do come back to me if I can answer any questions.
Cristiana
 

If you are prepared to self-fund, it is sometimes possible to self-refer to a private gastroenterologist in the UK.  My friend did. 
To see a gastroenterologist through the NHS, you typically need a GP referral or a referral from another consultant (for example, a gynaecologist who suspects someone has in fact a gastric problem can refer them onto gastroenterology).  Private health insurers also normally require a GP referral before authorising cover, or a referral from a consultant.

Back in 2013,  prior to diagnosis, I had been quite unwell so my GP ran several blood tests and the tests for coeliac disease just happened to be some of them.  I have no idea what my precise numbers were, but the cut-off was 100 for the TTG test and mine was over 100.  I remember both my GP and I were delighted when I went to see her as finally we felt we'd found the explanation behind my various symptoms.   But the story did not end there - I had to be referred to a gastroenterologist for an endoscopy as then it was considered the gold standard for a formal diagnosis.  It was not until that test was done I was formally diagnosed.
You are quite correct about the endoscopy now not always now being deemed necessary but if my memory serves, this came about around the time of COVID when gastroenterology departments had huge backlogs to contend with.  It will be interesting to see how things pan out in the coming months as other Brits share their coeliac journey stories on this forum.

Hello @brian1
I'm a UK based Moderator here on the forum.  If you are British, you may find that in your region you might be able to get certain gluten-free food (usually staples like bread) on prescription.  I recommend you ring Coeliac UK for the most up-to-date advice on this.
https://www.coeliac.org.uk/home/
There is some advice here for UK coeliacs which might also be of use, on how to best navigate the gluten-free diet on a budget.
https://www.coeliac.org.uk/information-and-support/living-gluten-free/the-gluten-free-diet/gluten-free-diet-on-a-budget/
I am afraid I don't know anything about the benefits you mention but maybe the charity can help?
Cristiana
 

Back in 2013,  prior to diagnosis, I had been quite unwell so my GP ran several blood tests and the tests for coeliac disease just happened to be some of them.  I have no idea what my precise numbers were, but the cut-off was 100 for the TTG test and mine was over 100.  I remember both my GP and I were delighted when I went to see her as finally we felt we'd found the explanation behind my various symptoms.   But the story did not end there - I had to be referred to a gastroenterologist for an endoscopy as then it was considered the gold standard for a formal diagnosis.  It was not until that test was done I was formally diagnosed.
You are quite correct about the endoscopy now not always now being deemed necessary but if my memory serves, this came about around the time of COVID when gastroenterology departments had huge backlogs to contend with.  It will be interesting to see how things pan out in the coming months as other Brits share their coeliac journey stories on this forum.

Good afternoon @Blanco!
It's always good to see a British coeliac on the forum.  Coeliac UK, the British coeliac charity,  is a fabulous organisation (worth joining it just for the gluten-free food guide app, by the way) but the one thing it doesn't have is a forum, so we do get quite a few British people posting here.
One of the things that stood out to me from your original post was your mention of the 'in-between' period.  It will feel strange eating wheat etc when you know that with those TTG numbers it is pretty much 100 percent certain you have coeliac disease.  But what I would recommend in your shoes is to make the most of this 'last chance saloon' to eat all the things that you will miss when you give up gluten for good. When it was my turn I can't remember eating a lot of bread, but I do remember eating loads of chocolate Penguin biscuits!  I'm so glad I did as no gluten-free equivalent has yet been put on the market and I do miss them!
The other thing I noticed in your post is the list of symptoms and your wondering what you can blame on coeliac disease, and what might be caused by something else.
The fatigue, the loss of concentration, headaches/migraines, lack of energy, brain fog, feeling hot most of the time.... those could all be part of the way it affects you.  However, like me, you may find that some symptoms stick around despite going gluten-free.   The only way to find out is to give up gluten once your condition has been formally diagnosed. 
(In my case I have for decades fallen asleep in front of the TV in the evening.  I just can't help it.  I thought once I was found to have coeliac disease and I had adopted a gluten-free diet that would stop happening.   It hasn't! - and I've been checked for diabetes and thyroid issues, it isn't those either.  But my painful migraines have for the most part gone now.)
Another thing which may be causing some of your symptoms is malnutrition, caused by possibly years of malabsorption.  Once you have been checked for deficiencies (the NHS frequently check for Iron, B12 and possibly Vit D deficiencies) you will know if you need to supplement, or eat more of a particular foodstuff.  Once your levels are normal you should feel a lot better.
One thing touched upon in previous posts on this thread is the NHS support for diagnosed coeliacs.  An NHS diagnosis should entitle you to a nutritionist, an annual coeliac review with a gastroenterologist which will include blood tests for compliance and also to check for any complications which sometimes arise from coeliac disease, DEXA bone scans to check for osteopenia/osteoporosis, to which coeliacs can be prone,  and also possibly a prescription for gluten-free staples such as bread and flour.
Do come back to me if I can answer any questions.
Cristiana
 

Several of us on this forum have found ourselves in this situation -  anxiety is often common in coeliacs around the time of diagnosis.   
Although it is written to help people with depression, I found Dr Steve Llardi's book (link below) really helped my anxiety.  You might wish to take a look at it.  He suggests making some lifestyle changes, all natural, which often prove helpful, all things which can so easily be in short supply in modern life:
- physical exercise
- omega-3 fatty acids
- natural sunlight exposure
- restorative sleep
- social connectedness
- meaningful, engaging activity
https://www.amazon.co.uk/Depression-Cure-Six-Step-Programme-Without/dp/0091929814
 
 

Oh, ok. Great advice! I know I need to start vitamins and I do a pretty good job with a healthy lifestyle. I will check out the book.  It’s such a learning curve with diet. I haven’t been diagnosed with celiac. Don’t want to have to eat gluten to get tested. My dr said I’m at least gluten sensitive, and think maybe I’m NCGS because I get a lot of migraines and joint pain when I consume gluten, as well as the gut stuff, but I find the best info when searching for celiac. I’m careful with cross contamination anyway just because I don’t want to take chances. Thank you all so much for your input! This forum has the best info I’ve found online by far. 

It typically takes two years or longer for the gut to experience complete healing and regain its efficiency in nutrient absorption. So, you would do well to supplement with gluten free B-complex and magnesium glycinate.

I've found good posture helps.  Keep your ears over your shoulders.  
Our posture tends to suffer when glutened because we tend to round our back to allow for abdominal bloating.  As our tummies bloat, curving our backs allows for more room in the abdomen to expand.  
Watch your posture when using phone and computer screens.  We tend to sit with our heads in a forward position.  This means our eight to twelve pound (bowling ball sized) head has to be supported by our thin stalk of a neck.  With a forward head position, our jaw muscles have to help support our heads.  This can cause fatigue and tightening in the jaw muscles. 
So keep your ears in line with your shoulders!

Thank you for your post, @Nedast, and welcome to the forum.
It is interesting to read of your experiences.
Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits.
Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.

My mother who also has celiac disease suffered with TMJ for many years before her diagnosis, but her situation did slowly improve after going gluten-free, but it took a decade or so for most of her TMJ symptoms to go away.

Thank you for your post, @Nedast, and welcome to the forum.
It is interesting to read of your experiences.
Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits.
Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.

Hi Tibaked
If you are diagnosed with coeliac disease, you may find that all sorts of symptoms will be alleviated by a gluten free diet.  GERD and lactose intolerance can be greatly reduced if not eliminated once the gluten-free diet is adopted.  However, if you want to be tested and officially diagnosed you will need to have been consuming gluten until your blood test/endoscopy.  
Although I don't have the same sensations you describe before my diagnosis, I frequently woke up with numb arms and numb fingers.  I could feel pins and needles in my extremities.  Weirdest of all, the sensation that drops of cold water, like rain, were falling on me, even though the sun was shining or I was indoors.
It took time but things got much better after after following a gluten free diet for a while. Of course,  some neuropathy is caused by malnutrition, common in coeliacs when first diagnosed,  so make sure the doctor checks your vitamin (particularly B12) and iron levels.
Cristiana

Welcome to the forum, @LimpToeTheTimeless
Bone growth plates close in the late teens to early twenties, so it's doubtful you'll grow much taller, but you may start to bulk up in muscle.  Remember to boost your absorption of vitamins and minerals needed to build muscle by eating a nutritionally dense diet and supplementing with essential vitamins and minerals, especially Thiamine B1, to counteract the malabsorption caused by Celiac Disease.
Keep us posted on your progress!
References:
The effects of endurance training and thiamine supplementation on anti-fatigue during exercise
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4241913/
A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10542023/

Hope so. And I definitely feel better than i did last fall. I just thought the terrible tiredness and aching all over was part of getting old. And oh the terrible stomach problems. All of those are gone as well as my 25 yrs of horrible “heart burn”. A miracle. Hope not too many effects from a long case of malnutrition which is what celiac gives us all. 

Hello @BunnyBrown and welcome to the forum.
I cannot say that I have had the procedure you describe, but recently I did have general surgery and was routinely intubated.  That pain was what troubled me most after the operation, far more than the operation site.  It took a few days to really settle down, I was quite badly bruised.
It was taking so long I was a bit concerned so asked the question on another forum. A few patients came back to me and said they had suffered the same.  I imagine in my own case possibly the throat got bashed about a bit,  maybe they had difficult inserting the tube?  I've suffered with a painful throat post-endoscopy too, but never as long as the intubation pain.  
I hope you will be feeling better very soon.
 
PS BTW - love the name!  I saw this today in an Easter display in a shop and your name reminded me of it.🙂

 

Hello @BunnyBrown and welcome to the forum.
I cannot say that I have had the procedure you describe, but recently I did have general surgery and was routinely intubated.  That pain was what troubled me most after the operation, far more than the operation site.  It took a few days to really settle down, I was quite badly bruised.
It was taking so long I was a bit concerned so asked the question on another forum. A few patients came back to me and said they had suffered the same.  I imagine in my own case possibly the throat got bashed about a bit,  maybe they had difficult inserting the tube?  I've suffered with a painful throat post-endoscopy too, but never as long as the intubation pain.  
I hope you will be feeling better very soon.
 
PS BTW - love the name!  I saw this today in an Easter display in a shop and your name reminded me of it.🙂

 

This wonderful, Anne.
I think you have a point about why people disappear off forums. 
I found the first few years post diagnosis a real struggle and frankly wondered if I would ever feel better (not to dishearten people, but just to say it can take a while longer for some folk to heal).  However, once my antibodies were back within normal range it really has made a big difference to my health.  I've chosen to stick around because I'm a Mod, otherwise I might have been one of those that disappeared, too!
 
 
 

Welcome to the forum, @BunnyBrown!
Many people with Celiac Disease become deficient in vitamins and minerals even if following a strict gluten free diet for years.
Thiamine deficiency disorders can present with dysphagia, difficulty swallowing.  I had developed nutritional deficiencies and experienced dysphagia.  High doses of Thiamine are administered to correct it.  Thiamine deficiency disorders present differently than Thiamine deficiency in Alcoholism, so my doctors didn't recognize my symptoms as a Thiamine deficiency disorder.  Thiamine is safe and nontoxic even in high doses, so it doesn't hurt to try it.   I took over-the-counter thiamine hydrochloride, benfotiamine and Allithiamine (Tetrahydrofurfuryl Disulfide) to correct it.  My symptoms started improving within an hour.  A B Complex and magnesium malate glycinate should be taken as well since all the B vitamins work with Thiamine.  
References:
Wernicke Encephalopathy Presenting with Dysphagia: A Case Report and Systematic Literature Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9788281/
 
Thiamine deficiency disorders: a clinical perspective
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/
 
Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8398893/
 

I'm sorry to hear about your experience. It's not uncommon to have some discomfort or pain after an esophageal dilation procedure, especially if biopsies were taken. The fact that you're still struggling to drink liquids and experiencing pain a week later is concerning, though. Since you've already been to the hospital and had a CT scan that came back fine, it's good that they provided you with lidocaine for some relief.
It's important to follow up with your healthcare provider and let them know about your ongoing symptoms. They may need to evaluate you further or adjust your treatment plan. Every person's body reacts differently to medical procedures, so it's possible that your experience may be different from your sister's or others'.
In the meantime, continue taking small sips of water and broth as you've been doing, and avoid solid foods until you're able to swallow more comfortably. Keep track of your symptoms and any changes you notice, and communicate openly with your healthcare team. They'll be able to provide you with the best guidance and support during your recovery. Wishing you a speedy and comfortable recovery.

Where did you hear that young adults with (untreated) celiac disease die within a year?!
While it's possible that some people who are untreated could die if they continue eating gluten, the likelihood is still relatively low. In general, if someone with celiac disease goes 100% gluten-free, especially when they are younger, they can expect to  have a normal lifespan. 

there’s no reason ppl with celiac live any less than anybody else providing you’re following a gluten-free diet and monitoring your health 

My mother was diagnosed (after nearly dying!) in 1967 at age 46.  At that time it was challenging to be gluten free because there weren't any gluten-free foods at that time.  She would buy rice flour at Asian markets and make baked goods the best she could.  She just ate natural fresh foods and almost never ate out, and she was very healthy her whole life.  She lived until age 95.