cristiana

Hi @jadeceoliacuk
I am a UK based coeliac and I have used a private nutritionist a few times.
She is very highly qualified and having just googled her details, she is listed on this website (see link).  For that reason, I think you could trust the listings here as I am quite sure she would not want to associate with this website unless it was a professional, trustworthy resource.
https://www.nutritionist-resource.org.uk/
I hope this helps.
Cristiana
 

Hi @jadeceoliacuk
I am a UK based coeliac and I have used a private nutritionist a few times.
She is very highly qualified and having just googled her details, she is listed on this website (see link).  For that reason, I think you could trust the listings here as I am quite sure she would not want to associate with this website unless it was a professional, trustworthy resource.
https://www.nutritionist-resource.org.uk/
I hope this helps.
Cristiana
 

I guess using "GF" instead of "PL" would have been too easy! 😉

Hi @sh00148
I am so glad that your son is going to have a blood test next week.    If the blood test is that soon, and he has been consuming normal levels of gluten up until now, he should have had enough exposure to gluten to test positive should you decide to stop the gluten immediately, as Scott suggest. 
However, one thing you may wish to change in the short term instead/as well is to stop him consuming dairy products.  If he is a coeliac, he may have become temporarily dairy intolerant.  The tips of the villi, which line the gut and are damaged in coeliacs, produce lactase, an enzyme essential for the digestion of dairy.  If they are damaged it can contribute to diarrhea and gas.  I had this some months after my own coeliac diagnosis, and it improved no end when I gave up dairy for a while.  Once on a gluten free diet they heal, and most coeliacs can return to consuming dairy.
I would have thought that with those bowel issues in a young child what is happening to him is entirely normal.  
 

Since your daughter has celiac disease some studies show that up to 44% of first degree relatives also have it, and it sounds like it is very likely that your house may be going gluten-free soon, mostly anyway, due to your daughter's recent diagnosis. If you are in the UK (since you spell it "coeliac"), you may get subsidies and other health system benefits if your son is also formally diagnosed, however, the situation you describe would be very difficult to deal with, so I would have him go gluten-free ASAP to see if it helps with his symptoms (but be sure to alert his doctor that you are doing this, and why you are doing it). If his test is positive and his symptoms improve on a gluten-free diet, try to get the doctor to diagnose him without a biopsy, otherwise he would need to eat lots of gluten each day for 2 weeks before doing a biopsy.
I hope things improve for him, and let us know how the test results turn out.

Here are two older articles we've done on this topic which might be helpful:
 

I do have chronic pain in my back & sciatic nerve. The IC causes great pressure & pain In my pelvis. I am hoping that gluten free diet will reduce the inflammation & therefore, reduce my pain. 

Y'all may want to get tested for POTS (Postural Orthostatic Tachycardia Syndrome) which can cause fainting, and Gastrointestinal Beriberi, which manifests with vomiting, abdominal pain, diarrhea, fever, chills, and low blood pressure.
POTS and Gastrointestinal Beriberi are Thiamine Deficiency Disorders.  Celiac Disease causes malabsorption which results in malnutrition.  Malabsorption affects all the essential vitamins and minerals.  Thiamine, in conjunction with the other B vitamins, makes life sustaining enzymes which enable our body to function. 
Gluten free diets can be low in essential B vitamins, especially Thiamine Vitamin B1.  Gluten free processed foods are not required to be enriched with vitamins like gluten containing products.  We need additional extra Thiamine when we consume a high carbohydrate diet.  Consistently eating lots of empty carbohydrates (like gluten free processed foods) can precipitate Thiamine Deficiency Disorders because Thiamine is necessary to turn carbohydrates into energy for the body. 
We have an increased demand for Thiamine when we are physically ill, emotionally stressed and physically active, especially in hot weather.  Thiamine cannot be stored in the body longer than three weeks, so deficiency symptoms can appear in as little as three days.  Early symptoms which are vague, include fatigue, depression, irritability, anxiety and malaise.  Symptoms can wax and wane depending on how much Thiamine we consume in our daily diet.  A twenty percent increase of dietary thiamine causes an eighty percent increase in brain function.  The brain, just sitting and worrying, uses as much Thiamine as muscles do while running a marathon.  The cerebellum and the Vagus nerve, which controls blood pressure, digestion, heart rate, also use LOTS of Thiamine.  
I limped along for years with a subclinical thiamine deficiency, while suffering from bouts of Gastrointestinal Beriberi and POTS.  My doctors never connected any of my health problems to nutritional deficiencies.  It's just not on their radar.  I studied nutrition before earning a degree in microbiology.  I was curious what vitamins did inside the cells of the body.  I thought "it couldn't be that easy."  Though doubtful, I started supplementing with high dose Thiamine, and had improvement within an hour!  Occam's Razor:  sometimes it's the simplest things.  Thiamine is safe and nontoxic even in high doses.  The B vitamins work together, so I took a B Complex.  The B vitamins are water soluble and easily excreted if not needed.  No harm, no foul to try.   
Do talk to your doctor and nutritionist about supplementing with essential vitamins and minerals.  Testing for nutritional deficiencies (though not accurate measurements of deficiencies) should be done before beginning supplementing otherwise you're just measuring the vitamins you ate.  You can have vitamin deficiency symptoms before there are changes in blood levels.  
Anemia can be helped by supplementing copper, thiamine and the other B vitamins like B12, as well as iron.  
Migraines are improved with Riboflavin Vitamin B 2.  I used to have severe three day long migraines, but Riboflavin made them go away.  
 
Thiamine deficiency disorders: a clinical perspective
https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/

With the passage of time after going gluten free, we tend to react more intensely when we do get glutened. We eventually lose all tolerance to it that we may once have had when consuming it regularly.

That’s exactly what happens to me. I have been unconscious twice, vomiting afterwards for up to 9 hours and then the bone breaking chills start. I have never vomited while unconscious, thank god.  It’s an unusual presentation and my doctors were reluctant to think it was due to gluten ingestion. However, I know it was gluten as both times it happened within 2-2.5 hrs of eating. I no longer eat food that I haven’t prepared myself and it’s been 6 yrs since it happened.  I was behind the wheel once and was lucky to get off the road before I went out. I feel, and all my doctors reluctantly agree, that it’s a vasovagal reaction. If I can lay down it seems I don’t pass out but I still vomit and get the chills. It’s terrifying to say the least. I could have killed myself or others. I’m as strict as I can be for that reason. 

At the time of the one awful, substantial glutening I experienced a few years ago, I felt very near to passing out.  I think if I hadn't been able to lie down, I might have.   As a child I was prone to fainting, and was told then how to avoid it, by putting my head between my knees, or lying down.  So now, if I feel things going grey that is what I do and I've never fainted since. 
But I felt so unwell when I was glutened on that one occasion with chills and cold sweats, waves of nausea, etc, and amongst it all I remember thinking that my heartbeat was also 'all over the place', so much so I might end up in hospital.  Until I was actually sick, then I began to feel a lot better.  
I felt well initially after eating gluten, the symptoms hit like a wall about 1 1/2 to 2 hours later, and then when I was sick, they quickly subsided.  I could not believe how violently I reacted.   

Hi @Louise Broughton
Fellow Brit here!
I am sorry to hear of your health issues.
If I may chip in here, I think it might be worth your while at least having the blood test to see if you have raised antibodies. Whilst I agree under ideal circumstances people need to eat gluten for a period before both the blood test and endoscopy, it could well be that your antibodies are still raised enough to show that you are a coeliac.  I gave up gluten in 2013 and it took around 8 years before my blood tests were normal again, and I was very strict with my diet.
To save time I've just copied this over from a recent post on another thread and adapted it for you - forgive me, but the advice is almost the same I have just given to another UK coeliac whose daughter has been having issues:
Generally speaking most UK coeliacs will get a lot of help from the NHS, such as a nutritionist, annual blood tests and reviews with a gastroenterologist to check for dietary compliance and any complications that can arise from coeliac disease, monitoring for osteopenia/porosis, which is something that coeliacs can be prone to, extra vaccinations where required, and in some regions of the UK, gluten-free staple foodstuffs on prescription.  Also, it has been my experience that once being on the books of a gastroenterologist means I have been able to make appointments direct with the hospital to see one, rather than being re-referred by a GP which saves so much time.
If for some reason your are finding it to get tested under the NHS you may wish to think of one other option: going private just for the diagnosis.  I did this, with a Nuffield based gastroenterologist, who also works for the NHS.  This sped up the diagnosis process by a few months and once diagnosed by him, he offered to put me straight into the NHS for a nutritionist and the other benefits listed above.  If interested, you can ring their offices and find out how much it will cost.  Usually their secretaries are very conversant with the system so should be able to give you the info you require.
I hope this may be of help.
Cristiana
 
 

One other thought: what other blood tests have you had? It might be worth having your iron and haemaglobin levels tested.  

Welcome to the forum! I’m sorry to hear about everything you’ve been going through—your symptoms sound so intense and scary. That reaction must have been very hard to endure, and it’s incredible that you’ve taken the steps to manage your health by going gluten-free.
It’s not uncommon for some people’s gluten sensitivities to escalate into celiac disease, especially after major physical stressors like medications or other health conditions. Your symptoms after accidental gluten exposure—abdominal pain, bloating, diarrhea, and vomiting—are shared by many here, and you’re not alone in avoiding the six-week gluten challenge before testing. Many people decide against it due to how unwell it makes them feel.
I completely understand your caution around eating out; dining can sometimes feel like a gamble, even with "gluten-free" items on the menu. For situations like the sourdough mix-up, some people find it helpful to chat directly with the chef or request packaging info if available. It doesn’t guarantee safety, but it sometimes helps.
Have you tried keeping a food diary? Also, if your symptoms get intense again, don’t hesitate to consult with a doctor just to keep an eye on your overall health, especially with the fainting spells you experienced.
This article regarding accidental gluten exposure, and the comments below it, 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.):
 
 

@sh00148
Hello and welcome to the forum, I'm a coeliac based in the UK and I have only just spotted this thread.  Reading your posts about PALs I imagine you are based in the UK too?
I am so sorry for all your daughter has been going through but congratulations on your achievement on getting an appointment.  
I would definitely recommend you join Coeliac UK, and get their food and drink shopping app if you use a smartphone.  They still print copies too and it is a fantastic help, particularly in the early days of your journey.
I would also recommend you pursue a formal diagnosis for your daughter, if you can, because generally speaking most UK coeliacs will get a lot of help from the NHS, such as a nutritionist, annual blood tests and reviews with a gastroenterologist to check for dietary compliance and any complications that can arise from coeliac disease, monitoring for osteopenia/porosis, which is something that coeliacs can be prone to, extra vaccinations where required, and in some regions of the UK, gluten-free staple foodstuffs on prescription.  Also, it has been my experience that once being on the books of a gastroenterologist means I have been able to make appointments direct with the hospital to see one, rather than being re-referred by a GP which saves so much time.
If for some reason your appointment isn't very helpful tomorrow -  I do hope it will be - you may wish to think of one other option: going private just for the diagnosis.  I did this, with a Nuffield based gastroenterologist, who also works for the NHS.  This sped up the diagnosis process by a few months and once diagnosed by him, he offered to put me straight into the NHS for a nutritionist and the other benefits listed above.  If interested, you can ring their offices and find out how much it will cost.  Usually their secretaries are very conversant with the system so should be able to give you the info you require.
Cristiana
 

@SoBannaz
Have you ever been offered any sort of topical treatment for your skin?
I occasionally have issues with my skin and during one of the lockdowns in the UK the itching was driving me up the wall - it was in my scalp, on my chest, shoulders, across the stomach.  I was really stressed and worried about it.  At his request, I sent a photo to my GP.  He happens to have a special interest in dermatology, and he came back with the diagnosis that I had eczema.  I was quite skeptical as when I think of eczema, I think of children with it on their elbows, knees and hands.  Also, I never had it as a child.
He told me to buy something called Adex Gel which is an emollient cream with an added anti-inflammatory, and also prescribed me Betnovate cream, a steroid cream.  I was to take a bath in the morning, then put on the gel, then 20 minutes the Betnovate cream, thinly.  Then apply the creams again before bed, in the same order.  
As I say, I was skeptical, but it was an absolute game changer.  
At the time I was eating a lot of almonds and I think that could have been the cause.  At the moment I have it, too, this time it could be because I've been eating a lot of pure oats.  I think I can tolerate a small amount but can't over do it.   Or it could be our new washing powder, and I've been using a lot of hand gel because I've been trying not to give the family COVID - without success, as it happens!  It's hard to tie down the cause sometimes.
My gastroenterologist says to me that coeliacs can suffer from itchy skin, not related to dermatitis herpetiformis.   I must be one of them.
I am interested to read that you get relief from hot water.  I have to say that I find hot water actually may feel good at the time, but it can dry the skin and make things worse.
Cristiana
 
 
 
 
 

@SoBannaz
Have you ever been offered any sort of topical treatment for your skin?
I occasionally have issues with my skin and during one of the lockdowns in the UK the itching was driving me up the wall - it was in my scalp, on my chest, shoulders, across the stomach.  I was really stressed and worried about it.  At his request, I sent a photo to my GP.  He happens to have a special interest in dermatology, and he came back with the diagnosis that I had eczema.  I was quite skeptical as when I think of eczema, I think of children with it on their elbows, knees and hands.  Also, I never had it as a child.
He told me to buy something called Adex Gel which is an emollient cream with an added anti-inflammatory, and also prescribed me Betnovate cream, a steroid cream.  I was to take a bath in the morning, then put on the gel, then 20 minutes the Betnovate cream, thinly.  Then apply the creams again before bed, in the same order.  
As I say, I was skeptical, but it was an absolute game changer.  
At the time I was eating a lot of almonds and I think that could have been the cause.  At the moment I have it, too, this time it could be because I've been eating a lot of pure oats.  I think I can tolerate a small amount but can't over do it.   Or it could be our new washing powder, and I've been using a lot of hand gel because I've been trying not to give the family COVID - without success, as it happens!  It's hard to tie down the cause sometimes.
My gastroenterologist says to me that coeliacs can suffer from itchy skin, not related to dermatitis herpetiformis.   I must be one of them.
I am interested to read that you get relief from hot water.  I have to say that I find hot water actually may feel good at the time, but it can dry the skin and make things worse.
Cristiana
 
 
 
 
 

Hello @Bindi
Welcome to the forum!
I wonder if you have come across this post on the forum?  Do have a read of it.
I struggled for quite a long time with ongoing symptoms and I remember seeing a lot about the Fasano diet when I first joined the forum.   I never actually adopted it, but it was on my 'to do' list had my issues continued longer term, as it seems a lot of people are greatly helped by it.  I would definitely give it try.
Does your diet contain oats still?  You may find cutting them out completely out of your diet could help (and that means even the 'pure', certified gluten free ones).    Some coeliacs react to oat protein just in the same way they do to gluten.   Also, and I can't find it now, I remember reading a story on this forum of a child not recovering until dairy was dropped from the diet, and then recovered.   Perhaps something else to try, in the short term?
Out of interest, are  you doing the usual things like not sharing butter and toasters?  Are any shared cooking utensils well washed, rinsed and squeaky clean when you use them?  Have you checked supplements and medication for gluten - I was really poorly for some time, then realised I was taking Floradix instead of Floravital iron supplement - the former has gluten in it.
Lastly, are you eating out much?  This can be a huge stumbling block to recovery.  Sadly, despite caterers' best efforts, it is still all too easy for harried service staff and chefs to make mistakes.  Only this summer I was offered a gluten-free ploughman's lunch, which comes with a huge hunk of French bread.  I thought the bread looked suspiciously 'normal' and thank goodness I checked.  Other times I've been given gluten-free pasta cooked in normal pasta water, and even a salad chopped up on a breadboard, that had crumbs in it.
Perhaps some things to consider. 
Cristiana

Thank you, no I don't eat anything unless I've prepared it myself. Have my own toaster, condiments and oven racks/trays and I certainly don't have oats of any description and nothing i take contains gluten.
This Fasano diet might be worth looking into tho, and perhaps the dropping of dairy, thankyou 

Hiya @sadiec123s. 
I am not sure this will be terribly helpful, but in case, I'll share a couple of things here.
Rather than aggression, my mental health struggles were anxiety-related. I am sure there was a connection with my low B12 levels, and low iron, because once those were addressed I did start to feel better.  Have you been checked for deficiencies?
https://www.webmd.com/vitamins-and-supplements/what-to-know-about-vitamins-and-mental-health
Also, Dr Steve Llardi's book helped me a lot, too.  The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs.  It points out some lifestyle changes that can really help us to feel better:   physical exercise;  omega-3 fatty acids; natural sunlight exposure; restorative sleep; social connectedness:  meaningful, engaging activity.
Cristiana
 

@cristiana, good points! Never thought about the shoes and she lives in tight waisted shorts- Thank you! 

I had rib pain, but also hip and leg pain - google sacroiliac pain, it's common in coeliacs.
SI joint pain affects the hip, buttock and thigh area.  When I had it at its worst it was incredibly painful, a sort of burning sensation. If this is what your child is experiencing, she may find it helpful not to wear tight jeans or waistbands.  Any pressure around the area exacerbated the pain greatly.  Also, I am sure the lower quadrant bloating I was experiencing at the time made things a whole lot worse, that internal pressure seemed to add to the pain.  
One other thing is that it is important that your daughter wears the right shoes, avoiding very flat unsupportive soles or heels, and doesn't overdo exercise that jarrs the joints. 
The good news is that for me it did get much better as my gastric symptoms improved, particularly the bloating - but it did take a few months. 
You may find these links helpful:
https://www.spine-health.com/blog/common-triggers-si-joint-pain-and-how-prevent-flare-up#:~:text=The SI joint can become,the joint to flare-up.
https://pubmed.ncbi.nlm.nih.gov/19504097/
If your daughter is experiencing rib pain, that could be costochondritis.  I had that too, and a similar sort of burning.  Again, when my GI symptoms improved so did the pain.  Bloating will still kick it off from time to time.
But I am glad you are having D levels checked, as low levels can contribute to joint pain.

Hi Cristiana,
You’re spot on, I am from the UK! 
In terms of eating gluten prior to the blood test, I only had a week in between requesting and having it done but I think it would be accurate in terms of how much I’d eaten, I have two slices of toast most mornings and gluten included in most other meals throughout the day.
Thank you for the article, as you said with the family history it is probably correct that it should be investigated further. I’ll contact my GP on Monday and ask for further investigation, as you said I know they aren’t massively over the normal limit but must be a ‘normal’ range for a reason and if it’s come back above it then it needs looking at! 
I’ll continue my diet as is for now so then if I do have further tests then they should be accurate results.
Thanks again, Matt
 

Those iron tablets are probably your current culprit for stomach pain. I am also anemic and was prescribed the iron tablets as well. I wouldn’t wish those things on my worst enemy! They constipate me horribly and cause the most awful abdominal pain! I refuse to take them. I’m trying gentle iron right now and I think it’s still bloating me. 

Welcome to the forum, @cjjones5969!
Just out of curiosity, if you had no symptoms, what led to your diagnosis?
You may have developed some additional food intolerances which is very common in the celiac community, particularly with foods whose proteins are similar to gluten. Chief suspects are dairy and oats, even gluten free oats. The protein casein in dairy and the protein avenin in oats are similar to gluten. But it can be almost anything. Those two are very common offenders, however.