cristiana

I was tested for celiac disease because of migraines, not gastrointestinal issues.  Turns out I have it (blood tests and biopsy positive). I’m strictly gluten free and still have migraines, but overall feel better, more energy.
In case the biopsy confirms celiac disease you may want to enjoy your favorite gluten-filled foods while you wait for the next steps!

Hello @OhDeer and Welcome to the Forum
The diagnostic journey varies enormously, depending on where you live. In my own case, and I am posting from England, from memory I think I got the positive blood test results back in March and then had a biopsy in May.  However, this was over ten years ago and pre-COVID, and waiting lists in gastroenterology may mean that it could take longer now.
If you didn't have any obvious symptoms of coeliac disease (such as diarrhea, anaemia etc) all this will have come as quite a surprise/shock.  However, you may have some minor health niggles which you wouldn't associate with coeliac disease which could improve after you go gluten free.   This thread from the forum details some such symptoms:
https://www.celiac.com/celiac-disease/what-are-the-symptoms-of-celiac-disease-r1090/
In my case I suffered from painful migraine headaches for years which cleared after going gluten free. 
Anyway, do come back to us with any further questions 
Cristiana
 
 

Thanks! I'll look into that one 🙂
Bias or not, so far this website seems very comprehensive and a good resource. I definitely will stick around ✌️

You are more than welcome - happy reading!  But without wanting to sound biased, as I am a Mod, I think this website was just as helpful, if not moreso, so stick around! 😉

Sorry - we say this in the UK, put food into a blender, or put a hand held blender into food, to make a puree.  Probably an new application of a word we used a lot in WWII, although I wasn't there at the time!😄
I am sorry as I am short of time so I can't read this thread properly, @Always-Hungry-Kate.  But certain foods affected me around the time I went gluten free (such dairy, oats, soy and corn) which prior to the time of my diagnosis had no affect.  Only when I went gluten-free.  It took a while for this to calm down, I can eat them all now.    
Have you been tested for Heliobacteria Pylori, a possible cause of gastritis?  

I have had bouts of nausea when I have accidentally ingested gluten, and when I was first diagnosed.  It was pretty miserable at first.  I've since concluded that gastritis-like symptoms related to gluten  is an issue for me.  Worth looking into the symptoms and if you think it could be an issue for, look up some of the gastritis threads in this forum.   Keep away from gluten first and foremost, but also at least in the short term avoid spicy, rich, fatty food, alcohol, caffeine and citrus.  Drink lots of water.  Chamomile tea is very soothing, as is ginger sliced into hot water, adding a splash of cold water before you drink it.  I find a very short course of omeprazole has helped in the past, or gaviscon.  Sleep with a raised pillow if you are getting acid reflux in your throat and make sure your stomach has time to rest well, so don't eat too late.  Small regular meals are best.  A good standby meal is chicken slow-cooked in water in a covered pot with herbs, potatoes and carrots.  When you eat it the ingredients should almost melt in the mouth.  Very easily digested, and can be blitzed to make a soup.
Cristiana

Hi cricketboots
I am so sorry to hear that you are struggling like this.  It is not uncommon to feel this way, and interestingly, you will find that some coeliacs are affected by anxiety and depression prior to diagnosis.  It is something that can also improve once you have mastered the diet - it certainly has in my own case.
I'm based in the UK and when I was diagnosed I was given some very basic blood tests for B12, D and ferritin deficiencies.  I am not sure where you live but some countries will offer much more than this, and if you can, I'd definitely have the tests done as you may find that once these deficiencies are addressed, you feel a lot better.  Can you get this fast tracked?  In my own case I had a borderline normal result on B12 so it wasn't even flagged as a problem, but I remember reading on celiac.com at the time a borderline normal deficiency in the UK would be considered abnormal in Japan.   I supplemented B12 and I noticed after a while all sorts of odd tingling sensations in my nerve endings were getting better.   I also felt much less anxious.
With regards to your depression, a book I found really helpful with my own recovery was the Six Step Depression Cure by Dr Steve Llardi.  If you are taking medication for it I am not advising you to give up (please follow your own doctor's advice) but Llardi's book is so helpful as it highlights areas in our modern lives that only add to the depression problem, and gives solutions on how to improve our mental wellbeing through lifestyle changes.
If you are suffering from anxiety Paul David's book, At Last a Life, was another great resource for me.  Both books can be purchased online and have reviews you can read first.
Do you know any other coeliacs? Perhaps you could try to make contact so you have a buddy to travel with on this journey?  But do keep in touch with us too, we're here for you.  
This is a helpful link, if you haven't seen it already.  But try not to feel overwhelmed by it all.   This will all become second nature to you one day.  My husband gave me some great advice when I was first diagnosed and missing some of my favourite food - he told me, "Concentrate on what you can eat, rather than what you can't".  If you are struggling with gluten free bread - which I have to say I found rather unpleasant, until I found one particular brand that tasted OK - you may find it nicer toasted.  
C
 
 

I have had bouts of nausea when I have accidentally ingested gluten, and when I was first diagnosed.  It was pretty miserable at first.  I've since concluded that gastritis-like symptoms related to gluten  is an issue for me.  Worth looking into the symptoms and if you think it could be an issue for, look up some of the gastritis threads in this forum.   Keep away from gluten first and foremost, but also at least in the short term avoid spicy, rich, fatty food, alcohol, caffeine and citrus.  Drink lots of water.  Chamomile tea is very soothing, as is ginger sliced into hot water, adding a splash of cold water before you drink it.  I find a very short course of omeprazole has helped in the past, or gaviscon.  Sleep with a raised pillow if you are getting acid reflux in your throat and make sure your stomach has time to rest well, so don't eat too late.  Small regular meals are best.  A good standby meal is chicken slow-cooked in water in a covered pot with herbs, potatoes and carrots.  When you eat it the ingredients should almost melt in the mouth.  Very easily digested, and can be blitzed to make a soup.
Cristiana

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.
Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.
This article may be helpful:
 
 

I have had the exact same experience. Even went as far as a colonoscopy to check other things going on. Which came back clear. My endoscopy showed stage 3C celiac and I am currently 4.5 months gluten free. I have noticed improvements but still have off days and definitely also struggled with being nauseous and hungry at the same time. My guess and hope that it is just a long healing process 

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.
Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.
This article may be helpful:
This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):
 
 
 

Congratulations @koreanresto on this venture, I wish you every success.
I am from the UK.  
In this country, as a result of some tragic cases where a number of people have been taken ill or worse due to nut and sesame allergies, food standard regulations regarding the preparation of food have tightened up significantly to protect the customer.  It makes things very much more challenging for caterers, but it is my experience in recent years things have improved significantly for coeliacs as a result.
I am not sure where you are based, but in the absence of any national legislation you might like to try contacting the major UK charity 'Coeliac UK' to see if they can help.  I see that they have a form you can download.  Of course, where you are posting from requirements may be even more stringent, but it might be a helpful place to start.
https://www.coeliac.org.uk/form/gluten-freevolution-guidance-form/
All the very best.
Cristiana

Sometimes it can take other people longer to recover from being sick compared to others regardless of being celiac or not. 1 tip I can give you is make sure all pills and medicines they take are gluten free . When I was first diagnosed with celiac disease I had no idea gluten could even be in medicine, but it can, what I thought was longer than normal sick symptoms from me being sick was actually also celiac symptoms because of gluten in some of the headache pills I was taking at the time. I Hope they feel better soon. 

Make sure she gets plenty of fluids. Diarrhea can cause dehydration. Keep us posted.

We did an at-home test that was negative; not sure how accurate those are for the GI stuff, though. 
She just had labs for iron and Vit D and all was normal. I’m sorry it takes you longer to get over bugs but it does reassure me a bit that maybe that’s the issue here. Thanks for the response!

My 15 year old with Celiac just came down with her first stomach bug since being diagnosed 5 years ago. Her Celiac has been well-controlled and we’re fairly certain this was a bug as others in the household were also sick, though not as affected as she was. It’s been 7 days since she first got sick and she’s still having symptoms—some nausea, diarrhea, sulfur burps—and I’m wondering if it just takes Celiac folks longer to recover from these bugs. Anyone have any thoughts or experiences? She’s feeling pretty hopeless and I’m feeling very anxious, so any thoughts and/or advice are appreciated!

I remember my gastroenterologist saying to me once, when I was complaining of generalised itching, "Coeliacs get itchy skin".  Our appointments aren't long so I never asked him why.  However, at the time I got the impression that he wasn't talking about Dermatitis Herpetiformis, but generally itchy skin.  He will have seen many hundreds, if not thousands, of coeliacs during his career, so I just thought to myself, itching must be 'one of those things' that we coeliacs can be prone to.  
If I have time to ask at my next appointment, not for a couple of months, I'll see if I can find out what he thinks in most cases is causing this.  But it does look as if @Aaron2018 you have perhaps found your cause.  Reducing your exposure to the wheat flour as much as you can (perhaps opening windows when you need to move it, wearing gloves to wipe down a surface, etc) might help? Also of importance is to find what treatment helps you best.  In my case, it's my trusty Betnovate steroid cream and emollient cream.  And make sure you are on top of any new flares, it seems to me that itching begets itching.
And on that last point, I read somewhere that it can help if you try to apply gentle pressure to an itchy area rather than itch it - it help calm things down.  
I can't recall if I mentioned this but it might be worth having your ferritin levels checked - when I was anemic I remember I had quite itchy skin.

I remember my gastroenterologist saying to me once, when I was complaining of generalised itching, "Coeliacs get itchy skin".  Our appointments aren't long so I never asked him why.  However, at the time I got the impression that he wasn't talking about Dermatitis Herpetiformis, but generally itchy skin.  He will have seen many hundreds, if not thousands, of coeliacs during his career, so I just thought to myself, itching must be 'one of those things' that we coeliacs can be prone to.  
If I have time to ask at my next appointment, not for a couple of months, I'll see if I can find out what he thinks in most cases is causing this.  But it does look as if @Aaron2018 you have perhaps found your cause.  Reducing your exposure to the wheat flour as much as you can (perhaps opening windows when you need to move it, wearing gloves to wipe down a surface, etc) might help? Also of importance is to find what treatment helps you best.  In my case, it's my trusty Betnovate steroid cream and emollient cream.  And make sure you are on top of any new flares, it seems to me that itching begets itching.
And on that last point, I read somewhere that it can help if you try to apply gentle pressure to an itchy area rather than itch it - it help calm things down.  
I can't recall if I mentioned this but it might be worth having your ferritin levels checked - when I was anemic I remember I had quite itchy skin.

I remember my gastroenterologist saying to me once, when I was complaining of generalised itching, "Coeliacs get itchy skin".  Our appointments aren't long so I never asked him why.  However, at the time I got the impression that he wasn't talking about Dermatitis Herpetiformis, but generally itchy skin.  He will have seen many hundreds, if not thousands, of coeliacs during his career, so I just thought to myself, itching must be 'one of those things' that we coeliacs can be prone to.  
If I have time to ask at my next appointment, not for a couple of months, I'll see if I can find out what he thinks in most cases is causing this.  But it does look as if @Aaron2018 you have perhaps found your cause.  Reducing your exposure to the wheat flour as much as you can (perhaps opening windows when you need to move it, wearing gloves to wipe down a surface, etc) might help? Also of importance is to find what treatment helps you best.  In my case, it's my trusty Betnovate steroid cream and emollient cream.  And make sure you are on top of any new flares, it seems to me that itching begets itching.
And on that last point, I read somewhere that it can help if you try to apply gentle pressure to an itchy area rather than itch it - it help calm things down.  
I can't recall if I mentioned this but it might be worth having your ferritin levels checked - when I was anemic I remember I had quite itchy skin.

Hives can also be a symptom of low B12 Cobalamine.
The prevalence of gastrointestinal symptoms and cobalamin deficiency in patients with chronic urticaria
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9960171/

See link, and extract from it, below.  If this is anything to go by, it would appear that exposure to wheat could cause issues.
https://www.ncbi.nlm.nih.gov/books/NBK538209/
"Deterrence and Patient Education
It is essential to determine the triggers for a patient with atopic dermatitis. Reduction or elimination of these triggers is an important step in the treatment of atopic dermatitis. Patients may see an improvement in their skin and reduced flare-ups if they avoid allergens (commonly dust mites, egg, peanuts, milk, fish, soy, rice, and wheat) and irritants (particularly chemicals, heat, soaps, humidity, acrylic, and wool)."

This article, and the comments below it, may be helpful, at least for the next time this happens:
 
 

Hi Aaron
Yes, worth reading some articles about the permanency of this condition it but having done so myself, I came away concluding adult eczema is something that I will need to learn to live with. 
Oddly enough, I when I wrote my post to you I was thinking "I haven't had a flare in ages" - only to be awoken last night with unbelievable itching at the back of my scalp, a hallmark of a flare that could last days or weeks, without treatment.   This time I can't say I've knowingly eating almonds, but I have been using a new shampoo and conditioner.   So tonight I'll be resorting to my usual Neutrogena T/Gel coal tar shampoo or my Philip Kingsley Flakey Itchy Scalp shampoo and toner.  All being well, quick treatment normally works best.
I am sure that Eucerin is very good but you may find it helpful to ask your GP for some prescription strength steroid cream, rather than an over the counter steroid cream which at least in the UK tend to be weaker, to use as well as the moisturiser.   If you do have eczema, it should be very effective at reducing the itching.  It is very important to read the instructions but perhaps best after a bath or shower (not too hot, it dries the skin and makes itching worse), then an application of the moisturiser, then wait 20 minutes to put the steroid cream in the areas that are an issue, very sparingly. 
It really should help nip any flares in the bud.

Hi Aaron
Yes, worth reading some articles about the permanency of this condition it but having done so myself, I came away concluding adult eczema is something that I will need to learn to live with. 
Oddly enough, I when I wrote my post to you I was thinking "I haven't had a flare in ages" - only to be awoken last night with unbelievable itching at the back of my scalp, a hallmark of a flare that could last days or weeks, without treatment.   This time I can't say I've knowingly eating almonds, but I have been using a new shampoo and conditioner.   So tonight I'll be resorting to my usual Neutrogena T/Gel coal tar shampoo or my Philip Kingsley Flakey Itchy Scalp shampoo and toner.  All being well, quick treatment normally works best.
I am sure that Eucerin is very good but you may find it helpful to ask your GP for some prescription strength steroid cream, rather than an over the counter steroid cream which at least in the UK tend to be weaker, to use as well as the moisturiser.   If you do have eczema, it should be very effective at reducing the itching.  It is very important to read the instructions but perhaps best after a bath or shower (not too hot, it dries the skin and makes itching worse), then an application of the moisturiser, then wait 20 minutes to put the steroid cream in the areas that are an issue, very sparingly. 
It really should help nip any flares in the bud.

Hi Aaron
I sometimes have extreme itchiness, where I can't see anything on my skin.
At times it has felt like I've been bitten by mosquitoes bodywide, or sometimes it has been just patches of skin, like the nape of my neck, round my waistline, chest, back etc.  When I have a flare changes of temperature makes the itching worse, and the itching does seem to move from one place to the other as you describe.
Anyway, it got bad during one of the lockdowns and I sent a photo to my doctor who suggested it was eczema.   I was skeptical at first but he advised me to use Adex Gel (an emollient with an anti-inflammatory and then, 20 minutes later, apply Betnovate (a prescription strength steroid cream) - and this brought relief.   
During one bad bout I happened to have a blood test and it showed up in my blood - the IgE reading was really elevated. 
I looked at my diet and realised I'd been eating a lot of almonds.  I'd given up eating chocolate and replaced it with Bakewell Tarts (a British cake/tart, full of almonds).  I think almonds were the trigger.  But on another occasion we were on holiday in France and I think the chemicals in the pool might have set it off.
If it turns out to be your problem, one important tip I have learned: it is important to start using the cream as soon as possible to stop the flare in its tracks.
Cristiana