To think she doesn't *really* have coeliac disease?

Thanks for getting back to me. Recently cut out bread and I've noticed decrease in joint pain (neck in particular). Everything else in my diet is GF due to household being coeliac so im effectively gluten free now and feel so much better- it's just got me thinking!

Thank you for your reply, that's useful to know. Sorry to hear you aren't well at the moment also. Sounds like you have enough to contend with. X

Coeliac here, I cannot tolerate GF oats at all. There are many symptoms other than gut issues, I had terrible headaches, bone and joint pain, numb patches on my body - and gluten ataxia - which made me feel like I was going to fall over, hair thinning. Plus all the usual gut issues.

Technically you can be diagnosed without a biopsy. I had bloods done and was told that anything above 50 was so strong it would negate the need for other invasive tests. My two blood tests came back 95 and 97, and I was diagnosed as coeliac without a biopsy.

If someone is coeliac then this will have been explained to them. Stupid to think only a short term reaction will follow. That's why medically diagnosed coeliacs tend to stick to a strict GF diet.

When the body's immune system overreacts to gluten in food, the reaction damages the tiny, hairlike projections, called villi, that line the small intestine. Villi absorb vitamins, minerals and other nutrients from the food you eat. If your villi are damaged, you can't get enough nutrients, no matter how much you eat.
https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220#:~:text=Your%20small%20intestine%20is%20lined,necessary%20for%20health%20and%20growth.

Coeliac Disease is largely genetic. When my DD was diagnosed we all had to get tested - my DH was then also diagnosed. You could ask her to confirm as your GP will want to run tests if that is the case....

I think maybe joint pain might describe it better? But she would sit for hours with a hot water bottle on her neck.

• Coeliac disease is commonly diagnosed by a blood test followed by an endoscopy.
• Most people with coeliac disease can eat gluten free oats but some can't eat them as oats contain a substance similar to gluten.
• Many standard oats are produced in the same place as wheat, barley and rye, which makes them unsafe because they can be contaminated.
• A very small number of people are still sensitive to gluten free oats.

Not OP, but I too get these symptom - sore throat after eating the "wrong" foods and my whole gullet (?)/esophagus (?) burns for days like the bread or pastry has scratched every bit of surface on the way down. I think it's intolerance rather than allergy for me, but I like nice food and I have cancer anyway so I put up with the pain.

She could be putting herself at risk of bowel cancer doing this. Coeliacs simply should not eat any gluten at all, as you can't know what silent damage is being done.

Some coeliacs even have trouble with GF oats, as there's a protein in oats that's very similar to gluten and the body can get confused and react to it in the same way.

Neck pain? Is that a recognised symptom? Would be really interested to know more about this if you could come back to me. Could answer a few worries!

CD runs in my family and while we have plenty of relatives who religiously avoid any chance of cross contamination we also have two fully diagnosed older relatives who more or less refuse to follow the diet. One of whom tucks in to normal biscuits quite happily then complains later about stomach ache and neck pain. This one insists the doctor told her it was fine to eat gluten containing foods as and when 'especially at her age'.

DH is a 'silent coeliac' so he doesn't get the digestive issues in terms of cramps, immediate illness etc, however it affects his skin, his energy levels, his sleep etc. He sticks to a gluten free diet 95% of the time but will occasionally have a sandwich, or a beer, or fish and chips, if the situation leads to it. He shouldn't. It still causes damage to his gut and intestines. But as he doesn't feel horrific after it, he doesn't see the issue.

It is possible.

Yes you can have a silent / asymptomatic version of the disease where you may not display typical symptoms from eating gluten but the damage is still being done to your gut. This still affects absorption of vitamins and minerals and leads to long term problems associated with difficiency. Two of my family members will be immediately unwell from eating gluten. The other would suffer no short term affects but within a few weeks of eating gluten would have reoccurring tonsillitis, fatigue, poor skin condition etc. She's much more likely to be less careful with what she eats and so would be more likely to eat the odd biscuit

I have diagnosed ceoliac disease (by endoscopy process and blood test) and I can actually in theory eat a normal bread sandwich and have zero symptoms. But I don’t have any because I am out of those ceoliacs where earring gluten more causes us autoimmune issues with it so if I was eating gluten on a regular basis I would eventually get sick.

We are in a social group with an adult who's got gluten intolerance and two children with Coeliac Disease. All eat GF, but the adult will be fine if her food is cut with the same knife as the other bread. If there is a tiny bit of gluten in something her tummy might feel a little sore. For Coeliac kids the same amount would mean a few hours curled up with a hot water bottle for awful tummy ache and a bucket & toilet for horrible D+V. I suspect though some people who are GF but not Coeliac might be as ill as the kids with gluten? I don't know if any Coeliacs who have a milder reaction.

Dd has diagnosed coeliac disease and has to be ever strict. A tiny bit of cross contamination causes projectile vomiting and she’s in bed for two days in a weird sort of semi conscious stupor.

a colleague of mine also has properly diagnosed coeliac disease and eats cakes and biscuits still as she says gluten free stuff is shit and then moans about stomach ache all the time.

some people with coeliac disease will have no noticeable symptoms at all. So it is possible.

but if she is hazy on details/not wanting to discuss tests it’s also possibly bullshit.

Why do you care? She sounds difficult but really what is it to you if she is or isn’t? My child has a proper allergy (epi pen - scary reaction etc) but can tolerate her allergy when it’s highly processed. This is amazing and allows us some food freedom and in fact we try hard to keep it in diet under medical advice. very scary if she was to have it unprocessed though. I’m sure some people question it which is so annoying and potentially unsafe.

You can have Coeliac Disease and still choose to eat gluten.
Bit stupid IMO, but if you're ok with the horrendous side effects, nobody else's business I suppose.
What the fuck that has to do with your bikini line though, I cannot imagine.

I knew someone who said the had chrones.
She didn't, it was an excuse to do fuck all in the bathroom for ages.
Before anyone jumps on me, she also didn't want me to mention it in front of her parents, and lied about having cancer, even shaved her head ffs.

@CookiePookie

Has she had an endoscopy/biopsy at her local hospital?

I have Coeliac Disease; the diagnosis was about 10 years ago.

The initial diagnosis came from a blood test organised by my GP.

I was referred to the gastroenterologists at the local hospital some time later. The specialist there told me that he considered the gold standard for diagnosis to be a blood test PLUS an endoscopy/biopsy, so I agreed to have the endoscopy/biopsy.

The specialist was able to see everything, as there was a little camera in the apparatus they used and a screen in front of him. The villi in the gut are flattened in people with Coeliac Disease who are still eating gluten and he could see the flatness on the camera.

The apparatus can also take a sample for biopsy, so he did that too and the analysis confirmed that I had Coeliac Disease.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/

There is a difference between a gluten allergy and a gluten intolerance. Maybe she is getting confused between the two.