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

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Coeliac disease - I understand from other friends who have been diagnosed with this that it's tricky but OK to deal with being gluten-free forever. My MIL has been diagnosed with this a year or so ago. Out of the blue she just announced she cannot have gluten any longer, and has Coeliac disease.
Just a bit of history - my opinion is that she seeks attention in all situations. My husband and my wedding - she demanded my private list of 'to-do' items including such things as 'wax bikini line', and when I did not give it to her she threatened not to come to the wedding until I apologised. Now, she may have CD and we always get in lots of gluten-free foods when they visit. She always asks in restaurants for the GF options. (and bemoans how poor they are). But most times we see her she will eat something containing gluten, like a regular biscuit or a bit of batter off fish and chips my FIL is eating. Can you just have a minor allergy to gluten? But she does insist it's Coeliac disease.

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.

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.

• 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.

I'm coeliac and a tiny crumb of normal bread makes me really ill for days. I was once given a normal bread roll in a hotel, queried it three times as it didn't look like or taste like a GF roll and then, being assured it was GF, ate it. I was in bed for 4 days and straight to the doctors when we got home. I also can't eat gluten free oats (you can find certified GF oats in the Free From section of supermarkets) but occasionally, as my diet is restricted in other ways too, I fall off the wagon and buy GF biscuits which contain oats. This is NOT a good idea unless I'm near a loo for a few hours afterwards, but I'm never as ill as if I eat wheat, rye or barley. However if you can eat oats, can I recommend Tesco's Free From Chocolate Ginger biscuits? They are eye wateringly expensive, but so delicious that sometimes I just have to buy a packet and put up with the consequences!

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 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....

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.

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.

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.

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

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!

This is actually good advice, I hadn't thought of that being important for the kids. Much appreciated.

I have clinically diagnosed CD however I can eat very small amounts of Gluten without any outward symptoms. Internally is probably a different matter!

I was in almost constant agony with my stomach (didn’t the runs or sickness) but I had a lot of stomach pain and was forever breaking wind.

I had a biopsy which indicated damage, coeliac disease and precancerous something or other. I was in so much pain I had worked out to stop eating bread by the time my GP finally organised a blood test (I had no guidance before the test and so it didn’t confirm coeliac disease). But I was advised to follow a coeliac diet by a hospital Dr to see if it helped improve my symptoms which helped with the pain enormously. I still do follow a coeliac diet. I live in an ordinary family home. I don’t use the toaster at all as feel it is too risky, all dishes and cooking implements go in the dishwasher. I sometimes feel some people feel I am being difficult but I would rather not eat than risk ingesting gluten and going back to living in pain again and damaging my insides further. I am gluten intolerant.

There’s a slight association between coeliac and chiari malformation if that might mean anything?

Not everyone is the same, my mum eats bits of it stupidly. Over time she gets ill if she does it too much - anaemia and all sorts. She has diagnosed coeliac.

I am diagnosed Coeliac, by blood test and endoscopy. I never had any of the classic symptoms but l got very anaemic. My sister is diagnosed too, also one of my children who also didn't have the classic symptoms but does feel better on GF diet.
My diet is strictly GF and I'm very surprised to read on here that others diagnosed as Coeliac don't strictly stay GF .

I could eat an ordinary sandwich without any obvious effects like a PP but l would not do this. I don't want to damage my gut.
Yes , tell your Mum that perhaps you should get tested too , also relatives as it runs in families and you need to know what tests her doctor did.

Can still have a Chinese. My husband has a severe gluten intolerance, and has special fried rice, spicey ribs, duck pancakes, vermicelli noodle chow mean, seaweed, sweet and sour (non battered) and various other items. Only things he can't have are the noodles and anything with batter

No, you can't have a mild form of CD that's absolutely fine if you happen to fancy a biscuit.
I used to work for Coeliac UK - we had someone that worked there that was inadvertently served something with a trace of gluten & was off sick for a week.

@LoveSandbanks When I was at CDUK, if we went out to eat we'd often go to Wagamama - they had an alternate menu of all their dishes that they could make gluten free - usually substituting rice for noodles.

I had this happen to me 12 years ago. Blood test said yes but biopsy said no. 3 yrs ago during COVID I lost 8kgs over a couple of months whilst living on a diet of cake and sandwiches at work and had another round of blood tests. Blood test said yes and I was convinced it was wrong. Had a biopsy and this came back positive! Absolutely gutted and it’s taken a long time to come to terms with.

I'm not coeliac but am either gluten or wheat intolerant and cannot touch it or else I get a nasty reaction. I don't know whether a few molecules would do it, maybe not as I live with someone who eats gluten, so probably I do encounter it although I use a separate cutting board and so on. I'm not going to experiment to find out!

There's nothing quite the same as bread made with wheat but honestly I won't touch it now, not worth it, I just stay GF all the time, life's too short to be spending it in the loo in pain!

I didn't have obvious symptoms pre-diagnosis but my bloods showed my liver function was very poor and I could have ended up with liver disease if I kept eating it. Theoretically I could have done and not had obvious symptoms but I didn't because I value my liver! Now I've given it up I vomit for hours if I have the slightest trace so she could have it but be bad at sticking to it because she thinks it's not affecting her but that's very dangerous long term.

For anyone diagnosed CD that still eats gluten for cost reasons, I'm not judging, I know it's hard but gf pasta is the same price as regular in some supermarkets and rice cakes can be a good cheap alternative to bread. Lots of things can be bought from the regular aisles if you check the packets like some own brand crisps, stock cubes, rice noodles etc. Or see if there are any food banks that can help. I know it's easier said than done but statistically the gluten is likely to kill you eventually and if you get cancer I imagine that's pretty expensive!

My friend who has coeliac disease has had to have multiple abdominal surgeries, is on medication for her liver and kidneys, has developed ulcers along her colon, and developed early onset arthritis, possibly needing a knee replacement in her early 30s, all attributed to undiagnosed coeliac basically causing havoc with her organs. Your mil maybe gets a bit bloated and uncomfortable when she eats bread, she doesn't have coeliac.

I can’t tolerate the soy sauce. I can’t even eat marmite anymore. I definitely couldn’t eat spare ribs in sauce or pancakes.