cristiana

Hi @Patsul
I had the very same issue with gas, it affected me at first in my mid abdomen, then moved to the lower left quadrant, so I sympathise!  My gastroenterologist recommended that I went dairy free for a little while.  He suggested giving it 2-3 weeks.  It worked a treat. 
Coeliacs are often temporarily lactose intolerant at diagnosis, because the damage to our guts means our body cannot produce enough lactase, the enzyme that breaks down lactose.  One of the side effects of this can be diarrhea and/or gas.  Once the gut heals, quite often the lactose intolerance passes.  
You might wish to give it a try.  Maybe go completely 'cold turkey', and see how you feel after three weeks.  Then reintroduce slowly.  
I also found products like soya, lentils and certified pure oats  (oats certified uncontaminated by gluten) hard to digest at first.  Listen to your gut, maybe keep a food diary, and you will probably see a pattern emerging.  As our diets are restricted already it can be a bit frustrating at times, but it is worth noting that although we mustn't consume gluten ever again, some of the other foods that might be causing you problems now might well not be an issue in a few months or even weeks, so do try to reintroduce things from time to time. 
A word of caution, however.  A minority of coeliacs cannot tolerate even pure oats in the long term, they get similar symptoms to glutening when they eat them.  Nutritionists in the UK often recommend coeliacs give up oats for about 6 months before trying again, for that reason. I thought I was in that camp but after eight years of trying oats from time to time I finally was able to eat them again.  My gut did take a long time to heal though, I think that is perhaps why. 
Cristiana
 

Hi @beeboschmeebo82
It is always good to meet another British person on this forum - there are quite a few of us!  
Certainly, a small percentage of coeliacs have negative blood tests,  your GP may or may not be aware.   So, to properly diagnose coeliac disease, or to rule it out, people often have to take on the role of self-advocate in these circumstances and unfortunately it can be quite a journey. 
A friend of mine was in this position, she had symptoms but negative blood tests.  However, her dad was a diagnosed coeliac, so had strong reason to suspect that she might just be one of those coeliacs who will never test positive.  In the end, she decided to go private and pay for a private gastroenterologist, who performed an endoscopy.  It turns out she was not a coeliac but had gastritis and a hiatus hernia.  So even if you don't have coeliac, you may have something else going on like that, which would still be worth investigating.
If private health isn't an option, and you feel you are getting nowhere with a referral to a gastroenterologist,  the Coeliac UK website contains UK specific advice on how to best navigate the system - it is well worth reading.  (see link below for what to do if you have negative blood test results).  
A couple of notes of caution, however.  When you are referred to a gastroenterologist, be sure to specifically ask them to test you for coeliac disease.  Tissue samples will need to be taken as coeliac disease isn't always visible to the camera.  Another friend of mine who is wheat intolerant was given an endoscopy.  I asked her what they checked for, and it appears no samples were taken,  by the sounds of it they simply checked to see if the stomach was inflamed and for ulcers.
Also, bear in mind you will need to be eating the equivalent of two slices of glutinous bread or the equivalent for about 5-6 weeks before a blood test, to show the right antibodies.
https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/if-your-tests-are-negative/?&&type=rfst&set=true#cookie-widget
Cristiana
 

Hello @Lrgthrcl
I am a Mod but haven't been on the forum for a while as I have a lot on at work, but saw you post. 
I think it is excellent that your daughter has been referred to paediatrics.  However,  if you do have private insurance, I'd definitely use it in your position as I suspect you will be seen much sooner.
I agree that addressing deficiencies something you can do now.  Has your daughter had her iron and B12 tested?  If these are low, that can cause awful anxiety, something that I had around the time of my diagnosis.  I would talk to your GP about this, if you haven't already.
Although it would be completely understandable for your daughter to try a gluten free diet without further testing, what I will say is that in the UK a formal diagnosis of coeliac disease is helpful as the NHS supports coeliacs in all sorts of ways - referral to a dietician, annual blood tests to check for compliance to the diet and any associated health issues, bone scans as osteoporosis can affect coeliacs, and in some cases gluten free food can be obtained via prescription.
I would have a good read of the Coeliac UK website, too, for UK specific advice.  There are special sections for children and young people.
Cristiana
 

I take dates and stuff them with natural peanut butter.  Then drizzle melted sugar free chocolate over and freeze. 

A reaction to or damage from gluten will be related to the dose.  So one time contamination from a tiny stain on a plate will be a tiny, tiny dose of gluten and shouldn’t cause much, if any damage.  Many people with celiac disease can handle the amount of gluten in a small crumb or two of bread.
If the dishwasher cycle couldn’t remove the material it may not have even gotten into your food at all!

@Sandra85, welcome to the forum!
Did you get ill from this small exposure? I mean did it cause you any particular symptoms? I assume not since you do not mention any. Please here me. I'm not saying that no illness from a gluten exposure equates to no inflammation of the villi. What I am saying is that it isn't the occasional exposure to gluten that you should worry about causing damage but rather regular exposure from sources you are systematically missing over time.  But you can't obsess over what might have happened to your gut every time you get gluten exposure. It's probably not the first time and it won't be the last time. There are some celiacs who get violently ill over any exposure to a very small amount of gluten. There are some who seem to experience no reaction at all even when getting a more significant exposure. I'm talking only about symptoms here. Life happens. Learn from it and move on. Don't make mountain out of a mole hill. Your husband probably feels guilty enough for not catching it.

Believe it or not there is no guarantee the restaurants are 100% gluten-free, even if the app says so. 

Hello, @LabLynnie,
I used to have terrible frequent migraines, but since correcting nutritional deficiencies caused by Celiac Disease, I rarely get them anymore.  I had tried the gamut of pharmaceuticals without any of them working.  I'd much rather take vitamins that our bodies need to function properly than take medications that don't work.
I do get Ophthalmic migraines (auras, sparkling, and dimming of vision) triggered by computer screens, but that is due to optic nerve damage caused by vitamin deficiencies (B12 and Thiamine deficiencies can affect the optic nerve leaving permanent damage).  
Following a low histamine Paleo Diet helps.  High histamine levels in the brain can cause migraines.  We need B12, Vitamin C, Thiamine, and Pyridoxine B6 to help us make enzymes that break down histamine.  Pyridoxine B6 is used to make the enzyme Diamine Oxidase (DAO).  DAO supplements are also available over the counter.  Magnesium and zinc also improve migraines.  
The eight essential B vitamins, extra Thiamine, Vitamin C, Vitamin D, magnesium and zinc are frequently low in newly diagnosed people with CeD.  
Do talk to your doctor and nutritionist about the benefits of supplementing with essential nutrients while healing.  Gluten containing products are required to be enriched with vitamins, but since you are not getting those while gluten free, supplementing with essential vitamins and minerals is beneficial.  
Hope this helps!
References:
Magnesium and migraines...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8912646/
...Associations between migraine, celiac disease, non-celiac gluten sensitivity and activity of diamine oxidase
https://pubmed.ncbi.nlm.nih.gov/32416409/
...Zinc and migraines
https://pubmed.ncbi.nlm.nih.gov/36588459/
...B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9860208/
...Chronic Migraine Responding to Intravenous Thiamine: A Report of Two Cases
https://pubmed.ncbi.nlm.nih.gov/27197607/
...Nutrients to Improve Mitochondrial Function to Reduce Brain Energy Deficit and Oxidative Stress in Migraine
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8707228/#B17-nutrients-13-04433
...Migraine associated with panic attacks
https://pubmed.ncbi.nlm.nih.gov/10570728/
...https://www.hormonesmatter.com/migraine-diet-thiamine/
...Histamine Intolerance Originates in the Gut
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8069563/
...Histamine Intolerance—The More We Know the Less We Know. A Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8308327/
 

I was diagnosed with Celiac 4 years ago and went completely gluten free but still had issues with nausea, diarrhea and occasional sharp abdominal pain. Just by chance my sister told me she had tested positive for fructose malabsorption because she was having similar issues.  I decided to test and was also positive.  I had never heard of it, but once adjusting my diet to eliminate as much fructose as possible my symptoms reduced dramatically.  It's quite an adjustment, and I don't always catch things so still have occasional issues, but I recommend getting a fructose breath test for anyone who is still having issues despite having gone gluten free.  It's a life changer!

Here's some interesting reading...
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/
The Role of Vitamins and Minerals in Psychiatry
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046018/

Hello, @badastronaut,
I am seronegative on blood tests, but I have two genes for Celiac Disease.  With positive DNA and improvement on a gluten free diet, I finally had a diagnosis.  
Diabetes, anemia and Thiamine deficiency disorders can cause seronegative blood test results.  I had all of these, but only one is necessary to cause seronegative results.
Celiac Disease is genetic.  Having one gene is sufficient for the potential to develop Celiac Disease.  Resolution of symptoms on a gluten free diet means the Celiac genes are activated.  All first degree relatives (parents, siblings, children) should be tested if you have Celiac genes.  
Celiac Disease affects the absorption of vitamins and minerals.  Many Celiac health problems are related to nutritional deficiencies.  Once the deficiencies are corrected, health improves.  Most people with Celiac are lacking in the B vitamins, Vitamin D, and minerals like magnesium and zinc.  Correcting nutritional deficiencies is part of proper follow up care.  
I had to have my gallbladder out, too.  I had very bad anxiety and panic attacks while on gluten.  Gallbladder dysfunction is related to Thiamine deficiency disorders.  My anxiety has improved greatly.  Anxiety is also related to Thiamine deficiency disorders.  
Hope this helps!

This is an important consideration. 
Interesting how things vary in Europe, I think there are benefits to having a diagnosis in Italy as well as in Britain.

Hello @badastronaut and welcome to the forum!
Can I start by asking a couple of questions:  when you were tested for celiac disease, did that include a biopsy?   Sometimes it takes a biopsy to be 100 percent sure as a small percentage of coeliacs do not have positive blood tests.   And for your previous blood tests, were you consuming gluten regularly for at least six weeks before the blood test?
Regarding your anxiety, consuming gluten for people with non-coeliac gluten sensitivity can affect mood, so you could definitely try following the diet much more strictly to see what happens. 
But going back to my first points, if you did want to repeat testing for coeliac disease it would mean consuming at least the equivalent of two slices of normal glutinous bread for six weeks and two weeks before a biopsy.  It is a tough call if gluten makes you feel so unwell and a lot of people decide against it. 
I am not sure what the state healthcare support for coeliacs is in the Netherlands but in the UK it is good, so this is why some people feel it is worth pursuing a  formal diagnosis despite the gluten trial.
Cristiana

There are a number of blood antibody tests that can be run that are designed to detect celiac disease: 
The most popular one doctors run is the tTG-IGA but that is not the only IGA-based test that can be run and there are other tests that are not IGA-based. Total IGA is not a test for celiac disease per se but a measure of the collection of of various types of IGA antibodies. If this one is low it can mean that individual IGA tests scores will be artificially low and may produce false negatives. Reduction of gluten consumption before testing, whether by blood antibodies or by endoscopy/biopsy can sabotage test results. There is no test for NCGS (Non Celiac Gluten Sensitivity) so for this diagnosis, celiac disease must first be ruled out. If you are eating a gluten free or low gluten diet, it is a waste of time to be retested. 

This thread might be helpful:
 

Hiya @LabLynnie
My sympathies, this is such a thing for us coeliacs.  Mine tend to be the aura variety these days but occasionally I still get the strangest migraine where I feel quite nauseous with generalised pain at the back of my neck, and light sensitivity.   
I've come to the conclusion that that type really responds well to lying down, if possible, with a rolled up hand towel under my neck and relaxing that area.  There are videos online which help such as this.
https://www.youtube.com/watch?v=0ZQoJ2psHIs
Warmth too.  
I don't get on well with NSAIDs so I only use this as a last resort, but if I can't get a headache to budge after a couple of days I find coffee with sugar and an aspirin works wonders with of all things a small amount of chocolate (except the aspirin leaves me with a sore stomach for a few days, so I need to take an omeprazole afterwards or beforehand!)
Prevention is key, of course.  I don't know if you find this but I find getting dehydrated can be a contributor, so I try to keep well hydrated.  Also, I find low sun in the winter and travelling distances by car triggers some headaches, so sunglasses and a preventative paracetamol before a such a journey helps.
A friend of mine (not a coeliac) manages her migraines by keeping her blood sugar levels in check, she avoids missing meals as she says this is also a trigger.  Might help you, too?
Cristiana
 
 
 
 
 

@Sledwards  I wouldn't worry unduly if the numbers are only slight, and don't keep rising - some people run at higher levels.  Good to run past your doctor but as plumbago says, it could just be that you were dehydrated.
@plumbago    I think this topic was started by someone trying to find an association between polycythemia vera and celiac disease.  I was interested in this as after my diagnosis my haemoglobin levels rose steeply. My local hospital is also a training hospital and I recall my gastroenterologist saying to a student who sat in once, "We're watching her for polycythemia" when he was perusing my notes.  I asked him about this and he said to me that in time I might be put onto aspirin and referred to a haematologist. 
However, it seems that since I last posted on this thread that my blood seems to have settled around or just below the higher levels you mention for females.  I notice these levels are higher if I'm tested when I'm dehydrated, so I try to keep as hydrated as I can before a blood test, but my gastroenterologist continues to steer me away from iron supplements because I run at these higher levels.
Interestingly, though, I now have a type of phlebitis following surgery, this is for the third time since I was a teenager, so I do wonder if there is a connection and I've had these high levels all my life, bar the time I got very anaemic around the time of my coeliac diagnosis.

Hello there.  I'm so sorry to hear you are suffering from these headaches, the throbbing type are horrible. 
Just one other thought - might be worth doing a food diary in case anything new that you have added to your diet as a substitute, such as gluten free bread for normal bread, contains an ingredient which is causing these headaches.  Reading your post reminded me that someone once posted on either this forum or another that xanthan gum caused them problems - so I googled it, and indeed there appears to be some evidence that it can cause headaches.
It's a bit of a bore but you might want to keep a note of the ingredients to see if a pattern is emerging.
I had a lot of very painful migraines in the past and some of the weirdest things used to kick them off - such as quinine in tonic water, and blackcurrant juice.  

Hello @Dionysus and welcome to the Forum.
I am so sorry to hear about all your issues.  
When you say you have seen a lot of specialists in the past, did that ever include a gastroenterologist or any other specialist who has run a coeliac panel, which would include these important blood tests:
Total immunoglobulin A (IgA) IgA Tissue transglutaminase antibody (shortened to tTG)? Have you ever seen a dermatologist when you have had a bad skin rash?  Some coeliacs have a rash called Dermatitis Herpetiformis (DH).  It can occur anywhere on the body but it is often found on the face, elbows, buttocks, knees.  It is very itchy and stings.  It is usually found symmetrically so you might get it on both knees, for example.  The blisters burst when scratched. If this sounds familiar, definitely make an appointment with a dermatologist who can test you for DH.
As an aside, I have a friend who seemed to be reacting to so many things.  It turned out it was not coeliac disease but a severe yeast intolerance. Some of your symptoms sound very much like what she experienced.  Something else you  may wish to consider?
I do hope you can find some answers in the New Year.
Cristiana 
 
 

Poor you, @trents,  that sounds really tough.  I am glad you have found something that helps you.
Interesting, @RMJ
Thanks for the tip, @knitty kitty.  I never really thought about migraines being caused by deficiencies before.

Good morning Risk Assessed and welcome to the forum.
I am sorry to hear you are experiencing this but rest assured that you are not alone.  Just one quick search of this forum has turned up this thread and others:
Anxiety can arise following a glutening purely of itself,  and/or perhaps, as in my case, another type can arise - a fear of what symptoms might follow,.  The two will 'feed' off each other.  
Hopefully you may find that if anxiety was one of your symptoms prior to diagnosis/around the time of your diagnosis, any generalised anxiety will improve the longer you are on a gluten-free diet. It may be worth making sure you aren't deficient in any vitamins or minerals through a blood test as deficiencies can exacerbate the condition. 
That aside, here are some tips, again from this forum, on how to recover from a glutening episode.  In the next few days drink lots of water and try to do things that will help your anxiety levels come down. I find walking helpful and focussing an interesting project or hobby rather than on the anxiety itself helps me in such situations.
 

Hi Tanja
Congratulations on the birth of your baby!  How old?
I echo @trents advice, and @RMJ's thoughts.
It is so tough that you have to cope with these concerns, so soon after having a baby which can be a challenging time for a new mum at the best of times.   
Thoughts: I wonder the lumps might turn out to be lipomas, which are benign?  I have a friend who had one come up randomly on her leg.  Also around the area you mention it is possible to have a type of hernia, an umbilical one, and I have one.  Perhaps they don't always show up on ultrasound?  I have a hard bulge near my stomach where the belly button is, less noticeable when I lie down, and it turns out it's trapped fatty tissue.  This is something that can arise in pregnancy, which was the case with me, but I didn't notice for several months and it gave me quite a start when I did!
Perhaps you are losing weight because of the breast feeding?  An acquaintance at church the other day who is breastfeeding told me she's able to eat anything and the weight is dropping off, so that is possible.  
Well done for getting it checked out, though, and in the meantime, we are here for you.  Do let us know how things go.
Big hugs
Cristiana
 
 
 

My nutritionalist told me to say allergy because some people only understand that word.  I can't quite bring myself to say it, though!  I have never been asked the preference or allergy question myself - yet .  
I haven't dared eat out for months but now I am again and what I now find myself doing is ordering and then when everyone else has put their orders in catch the member of staff before they disappear into the kitchen and just explain I am sorry to be awkward, but please can you tell the chef that if any gluten gets into the food I will be ill for days.   I think the strategy is working.

I hope you recover quickly! 

I didn't realise you had had shingles, Scott.  Some years ago someone posted on this forum ( @Mimsy)  that they had had repeated bouts of shingles as a child.   I wonder if coeliacs are more prone to it? 
My first two suspected episodes did not have the accompanying rash (therefore it could have been zoster sine herpete) but during a third bout my doctor found suspect lesions along a dermatome but the swab was done too late. 
The vaccine hit me quite hard with aches and chills and I had to go to bed the following day but so much better than months of burning pain.