Getting diagnosed CD.

[Sturgcl1]

Hi all, I've just signed up to this group as my husband has been suffering for years with what the GPs kept saying was most likely ibs. He had a blood test to exclude CD which was negative, so we assumed that was that. Unfortunately we wernt told at the time that you need to eat a lot of gluten when you have the test as otherwise it will be negative anyway. He had cut out most of the gluten in his diet at that point! Anyway after a year of suffering big time (headaches, fevers, sickness & diarrhoea & the worst cramps ever) we decided to do the FODMAP & Matt rapidly improved. We put back into his diet 1 thing at a time & narrowed it down to gluten/wheat that was the issue. He also gets bad constipation with lactose.

So he's lived the last year or do assuming he now has a bad wheat intolerance. Until a coeliac friend mentioned that the blood test gave a lot of false negatives. When I googled it I discovered it was true. I spoke with the GP, who I think also googled it(!) & has decided that given the severity of matts symptoms he could well be coeliac!

He did another blood test which was negative (matts cut gluten out of his diet completely for over a year so it was expected). And now matts waiting to see the Gastro team.

My questions (sorry about the background waffle) are, I've been told Matt can't be diagnosed officially unless he eats gluten for at least 2 weeks before the biopsy! Is that true? There is no way he's going to poison himself for the diagnosis. It's a real pain as we really need to know, but it's not worth feeling like your dying & being bed ridden for 2 weeks!

My 2nd question is I have a 5 yr old son who is also iffy if he eats too much lactose. He has quite alternating bowels, more constipated if he eats too much lactose, but he's also started complaining mildly of tummy ache in the morning. He is eating a high gluten diet & while I don't want him to suffer, I'm reluctant to cut gluten out of his diet if its going to prevent the blood test working. So, what's the chance of my son having it if hubby does? What are the symptoms in kids? He's no way near what my hubby is like, but I believe CD is hereditary & it may explain the problems he's always had with bowels, stomach aches etc. He was diagnosed lactose intolerant at 6months after basically 6 months of screaming after every feed with colic & Gas!

We don't really know a huge amount about coeliac disease so I'm hoping I will pick up some helpful advice. No idea how long We need to wait for the Gastro team, it's usually around 4-6months so in the meantime matts avoiding all gluten - the food is really expensive so I'm hoping a diagnosis will help us get a few basics on prescription (although we will have to pay for a pre-payment plan as £7.80 for a loaf of bread is even more than tesco charge! Lol).

Thanks for reading my waffle, I'm a secretary so I'm afraid I do over type sometimes!

[Hidden]

Hi there

I feel your pain as I've been all through this and later with my son.

I'm unfortunately to get the antibodies to appear in Matts blood he must eat wheat twice a day for 6 weeks. You can listen ok at the advice online:

Www.nice.org.uk

It might be worth testing your son first because if he has positive bloods it's likely your husband has too. Then your husband can make the decision to eat gluten or not for 6 weeks.

I find the gluten free products full of rubbish so don't buy them but bake instead.

I am also low fodmaps and seeing a dietician to introduce them back in, it's so complicated.

I wish you all well

Keep us posted

Best wishes

Kiki

Ps if you eat gluten for 6 weeks before blood tests I believe the blood test is always accurate.

[Hidden]

Hi there, Kiki is bang on and it's a minimum of 4 slices of bread for 6 weeks for a gluten challenge. I think it might be easier to reintroduce gluten gradually and then go for the full challenge. But I know that i could not do one now so he has my sympathy.

There is a DNA marker test but this has to be done privately and only shows that the person has the genes that can trigger CD so here's a link:

glutenfreeliving.com/gluten...

I would chat to hubbies GO before embarking on this route and good luck with it.

[tmoxon]

Hi Sturgcl1

I would definitely get your son tested now if he has been eating lots of gluten. Better to catch the CD early if he has it than for him to continue eating gluten and cause symptoms later in his life.

Something to also bear in mind is even if some people eat lots of gluten they do not produce the Iga antibodies needed for the test, meaning the normal test will not prove positive even if they have CD. It might be worth asking your GP whether he has tested your husband for the Iga deficiency as well.

More information about this is available on the CUK site

coeliac.org.uk/coeliac-dise...

With regards to CD being hereditary, I think they say its 1 in 10, whereas they say its 1 in 100 for the general population, so if you have a family member who has it you are also more likely to have it . You may be able to get the DNA test done on the NHS as my daughter did, although her results were negative for the genes and she still is better off gluten.

Good luck with it please let us know how you get on

[Sturgcl1 in reply to tmoxon]

Thanks everyone. Matts seeing the consultant soon I hope, so I will give him this info on dna testing to take with him. He knows he can't eat gluten, he knows it's that that makes him really sick, but what he doesn't know is if it's CD or severe intolerance. You can apparently be intolerant to gluten or wheat without being coeliac.

There's no way he could eat gluten for 6 weeks. He spent a day in bed after using the same bread board as me. Must have literally been a couple of crumbs! We had the same thing when he put a portion of my breaded fish on the same baking sheet as his GF fish! It's that bad! He describes it as the worlds worst ever hangover, S&D, fevers, migraine style head aches, mouth ulcers, & muscle aches. He is self employed floor fitter & no way he could take 6 weeks off in bed! To be honest I think he would probably die before the 6 weeks was up!

Guess he needs to chat with consultant about another way he can be diagnosed as that's not an option in sure!

As for my son, I will have a chat with our GP see what they say. I wasn't sure if they would test him given his lack of symptoms, but can't hurt to ask. Thanks everyone x

[Sturgcl1]

So I've spoken with the dr today & we are going to get AJ tested next week. She says given his symptoms it could be possible. My GP is actually coeliac & my hubby's GPs 2 kids are so we have understanding doctors!

She seemed to think that if my son tested positive then that would be sufficient for a positive diagnosis for Matt which is wonderful news in that sense. I really hope he's not CD, don't get me wrong, but if he has then I'm glad it will help my hubby too & we can then take action & rid the house of all these nasty gluten a that I love so much! I have made the decision to make the house 100% gluten free if they are both CD, so guess that's bye bye to all those yummy treats I shouldn't really eat & hello to a better, healthier family!

Thanks everyone, I will keep you posted