Gluten intolerance?

[JoJeffery]

Hi all,
My hubby has been suffering with IBS for about 8 years and has just put up with it. His Dad was resently diagnosed with celiac so hubby took the test, which came back negative. He has other symptoms as well,for example, hives on his back, headaches, and just over a year ago he had a neurological condition that was put down to stress, he was diagnosed asthmatic 13 years ago, has struggled with formal education and has recently described a 'fog' like feeling making it hard to think clearly. All of these things seem to fit with celiac.

He is considering a gluten free trial and challenge. I would like to hear from any of you who have experience of gluten intolerance.

It could also explain conditions that 2 of my children are experiencing.

Your support would be greatly appriciated.

Many thanks.

I did the test for celiac etc and it came back negative but cutting out gluten and dairy has made a massive difference.

Give it a shot as you have nothing to lose by trying.

DH has had all those symptoms too for years. He had the test which came back negative but the gp advised him to avoid wheat and gluten amyway.
This has made a world of difference to him.
He buys gluten free versions of flour, pasta, stuffing, pastry etc which I use for everybody when cooking because it is easier.
It is not that dificult to avoid, It just means checking the labels of everything

When you say the test came back negative do you mean the blood test or biopsy? If it was a blood test then I strongly recommend NOT to go gluten free yet but go back to the GP to ask for a referral to gastro specialist to have a biopsy. Given the family history and symptoms your husband should definitely push for this. False negative results with the blood test are common whereas the biopsy will give a definitive result. Have a look at the NICE guidelines for coeliac disease and show them to your GP if necessary.

I had blood tests and a york test privately which tests you for everything and it was still negative.

Still cutting gluten etc improves things vastly.

I also tested negative for coeliac, as did my sister, brother, and my late father. My brother and late dad had the full tests, but no sign of it whatsoever.

But.... We are all intolerant to gluten. In my late dad's case, it was never spotted, and he was told it was IBS.

My siblings and I suffered from pain, bloating, problems urinating (sorry, tmi ), constipation, sore throats, skin problems, hives... all relating to wheat/gluten. If we eat any, the symptoms start within 10 mins and last for 48 hours.

Our GPs have all suggested avoiding gluten. They are all of the view (independently) that there is something else, like a missing gene that stops the enzyme production at a certain age. We can now see the family line (dad eventually died of bowel cancer, grandma and great uncle couldn't eat etc....)

Sorry, changed nickname.
Thank you to all for your responses,

He has only had the blood test, which dr said no further action was required. I think he will go back to the dr, for a 'where do we go from here' kind of consult. I'm not sure how much help the dr will be as I've found that they aren't that interested with other issues before!

His Dad said that he thinks his Mum, as in hubby's grandma, had it but was undiagnosed and was very poorly towards the end. His Dad has had multiple issues and has been on various medications to combat the issues with no success and its only because they diagnosed osteoperosis that they did a blood test and biopsy.

Don't read on if squeamish, lots of tmi, sorry, but here are some of his symptoms including mouth ulcers, wind, bloating, stomach cramps, loose pale stools, multiple hives, asthma, frequent urination, eye twitch, night time calf cramp (which his dad gets), he won't let me list any more as he thinks he might be turning into a hypercondriac!

My 8yr old is struggling with bowel incontinence and will be playing one minute and the next running for the loo. It really stinks the house out!

Obviously, if the kids are affected I want to get us all gluten-free asap.

Its a bit like an episode of embaressing bodies!!

Thanks again for your responses.

MY DS (coeliac) has the most horrific sickly smelling poos when glutened - they have there own unique aroma.

At nursery we've been told our DD's offerings are eye-watering! We just got used to them but my lovely BIL looked after them this weekend and had to wrap a tea towel round his face and open all the windows! hoping things will improve on GF whenever we get there.

I suffered with IBS for about 9 years. I also have allergies (hayfever, cats, dust). Symptoms included foggy brain feeling, severe diarrhoea, bloating, headaches, hives, asthma and joint inflammation.

I did the York test for coeliac which came back negative but, after researching my symptoms, decided that I needed to drop all grains (wheat, oats, barley etc), dairy, legumes and sugar from my diet - at least for a trial period, to see whether I was intolerant to any/all of them.

The 'diet' I follow is often referred to as 'paleo' - in that is reflects the way our paleolithic ancestors ate: meat, fish, veggies, seasonal fruit and some sweetness in the form of occasional honey.

I can honestly say that in the months that I have been eating this way all the horrible symptoms I listed above have gone/reduced. Even my hayfever has reduced in severity.

If your DH is interested in reading a bit more about it then there are a number of books on Amazon about it: Robb Wolf's The Paleo Solution and Loren Cordain's The Paleo Answer are both excellent. Robb Wolf also has a website that carries his blog, the forum and a good explanation of what a paleo diet is about:

robbwolf.com/what-is-the-paleo-diet/

It is suggested that a 30 day trial is enough to see a change in your situation. 30 days is not long - your DH should give it a go. I can honestly say it has changed my life for the better.

Good luck.

I would definitely second the advice about not going GF quite yet, once you go down that path it's very hard to get a proper diagnosis. I got fobbed off with an 'IBS' diagnosis from multiple doctors. I repeatedly asked if I needed to modify my diet, was always told no but offered drugs...I was moving in between countries for a number of years which made it difficult to follow things through. Did get tested for celiac but it came back negative. I wonder now if it was a false neg. I then went GF on the advice of a nutritionist, and many of my symptoms cleared (I also can't tolerate dairy). If you really get no joy with the doctors then it's definitely worth seeing a clinical nutritionist or dietician to supervise an elimination diet.

Here's the link to the NICE guidelines: publications.nice.org.uk/coeliac-disease-cg86/guidance Note in particular article 1.1.18 which says that if blood tests are negative but coeliac disease is still suspected refer to gastro specialist. My advice would be not to take no for an answer even if it means making an official complaint as the guidelines are quite clear and your DH has a very strong case given his symptoms and the fact that his father has been diagnosed. I've learnt that when it comes to GPs, you have to fight for what is right for you and your family and not be fobbed off. They hate referring anyone (must be due to money or targets) but you have a right to see a specialist. It's very important that he keeps eating gluten until the biopsy is carried out.