eating gluten for 6 weeks

[marydoll60]

my daughter has been told she needs to eat gluten for six weeks before they will test her for celiac disease. she went gluten free last year when I was diagnosed with CD. eating gluten makes her very ill. is there another test that can be done that doesn't require eating gluten for 6 weeks?

[Lisahelen]

If you look on the coeliac uk site it gives the six week recommendation. As she is already gf, to get the best diagnosis she will need to reintroduce. Two slices of bread per day i believe is the basic minimum. You could call coeliac uk's helpline for advice.

[Hidden]

Hi marydoll, well what a predicament, the gold standard test for CD is a biopsy confirming collapsed villi however all coeliac have one of 2 genes or genetic markers and we have members who went gf first then had a genetic test so here's a link to a genetic test lab:

easydna.co.uk/celiac-diseas...

I think that you have to think carefully about your daughters options and the easiest is to keep her gf without a full diagnosis, go for the gluten challenge regardless of the impact on a 3 year old or put diagnosis on hold until she is maybe a teenager when teenagers seem to grow out of having coeliac due to the hormonal changes so a challenge then might be much easier for her and she would be old enough to have an input, as its her body.

I would discuss your options with your GP before paying for a private gene test and knowing that gluten has a negative effect on her could outweigh a non coeliac expert advising a gluten challenge as I know that I couldn't do one, so I think that you have to do what you think is best for her now she's been gf for a year.

Thats my 2p's worth and I wish you well with this.

[Lisahelen in reply to Hidden]

I dont want to get into an argument but the latest belief is that if someone is coeliac - at any age -then unfortunately it is for life. A proper confirmed diagnosis will enable ongoing medical support.

[Hidden in reply to Lisahelen]

Hi Lisahelen, you're absolutely right that being a coeliac is for life, you're also right to want clarification of this as it is an important point.

What I said was that some coeliac appear to grow out of having CD in adolescence as the hormonal changes seems to override sensitivity to gluten. I obviously had symptoms as a child and grew out of them and then in my mid 20's it all started again and many coeliac have the same experience.

So my point was as the little girl has responded to a gf diet and is made very ill by gluten now may not be the best time for a diagnosis. In an ideal world a proper diagnosis is for the best so I also agree with that. But we are talking about a 3 year old and then the feelings of guilt etc for mandydoll her mum and in this instance my feelings are that the moment for diagnosis has gone because she has responded to a gf diet and a gluten challenge would indeed be a challenge for the whole family.

Here's a link to a previous post by a member who has been diagnosed twice once as a child the second in their 50's because they thought he'd grown out of it in adolescence:

healthunlocked.com/glutenfr...

Lastly thank you for flagging this up as I didn't mean to say something that could be misunderstood.

[gfmum1 in reply to Hidden]

I had the genetic test done on the NHS, it was arranged by a consultant so it would be worth asking if this could be done without you having to pay for it.

It doesn't provide a definitive answer but if someone has symptoms & tests positive for both genes I think there's a high chance of coeliac disease.

[marydoll60 in reply to gfmum1]

many thanks. I'll give it a go.

[gfmum1 in reply to marydoll60]

I wish you luck, and hope you get somewhere. My son has had issues for a few years, he's just turned 18 and they've only just agreed to test him properly thanks to his tenacity in pushing to see a consultant (he wouldn't allow mum to help!)

[marydoll60 in reply to gfmum1]

good for him asserting himself. a very independent guy.

[Suzden]

Hello, I was told the same and it's absolutely ridiculous! I was so seriously ill and had to stop after only two days and just avoid it now and get on with my life. You know very well that it makes you ill so why the need to prove it to a doctor when the doc cannot change it anyway? Nothing can be done but to avoid eating it , no one should suffer, I wish your daughter all the best

[marydoll60 in reply to Suzden]

awe thank you.

[marydoll60 in reply to Suzden]

many thanks. the support on this forum is invaluable

[Hidden]

You do have to eat it for six weeks, although some consultants say otherwise (I hadn't eaten it for a year and tested negative which I expected, I have previously tested positive when eating it regularly. I now never eat it). If the gluten isn't there doing its painful damage, you'll get a false negative. I really feel for her as it's absolutely awful when it makes you so ill. I refused to eat it to get another positive, as I said I already had one with my gp but the consultant was adamant, despite me being gf for a year - very odd!!

[marydoll60 in reply to Hidden]

thanks. your support is very helpful

[liver-bird]

Hello - my understanding is that in order to get a firm diagnosis of coeliac disease adults must take the gluten challenge and eat gluten each day for 6 weeks prior to the camera down to examine the villi.

However I have read that children are spared this and can be diagnosed as coeliac based on other less unpleasant tests. Hope this helps. Very best wishes. Diane

[marydoll60 in reply to liver-bird]

thanks

[Curiosity7]

I am going to be a little biased on this topic as between the military medics and the NHS gluten was slowly killing me for many years. I was that unwell I could not get off the bed for months and bleeding from every orifice! Going in and out of consciousness, weak as a wet rag, I was slowly dying of malnutrition. I was so ill when they decided to check for Coeliac they could not even get the camera down my esophagus it was all so inflamed and swollen. It took 15 years plus for me to recover to some kind of normality and if I even smell the hint of any Gluten I get a bad reaction.

Of course it did not help that we purchased a house 500 yards downwind of a famous flour factory that kicked out tons of dust every night and the local authority would not take any action! So, my reason for this little story is just to say, do not worry too much about the "ruddy gold standard" which the professionals insist upon. They are not the ones suffering so they can afford to be pedantic!

My advice is similar to what Jerry has said above, make sure you keep your little-one's health the priority by feeding them good quality natural foods that are naturally Gluten-Free. Avoid processed foods as much as possible. If they react to gluten keep them off of it until they have grown up, don't forget that development (mental & physical) is the prime concern in young humans (as it is with any mammals & animals). When they are older that's when to worry about gold standards.

Personally, I would do what I consider 2b the best for their health to enable them to thrive, if that means Gluten-Free for a decade or two, to maintain good health, then that's the route to take! Do not worry about what the experts say! They are always ten to twenty years behind the truth of any topic! Just so you know I am a 59 year old Engineer (been in Engineering since age 16), so it's been part of my job to investigate things before doing them! I've had to investigate this subject to literally save my life, so do what you think is right and that is probably the natural thing and be concerned for your young one's health.

To finish, I will mention that both my children are now well past their mid-twenties and both managed to get good degrees on a Gluten-Free diet. I was diagnosed (by default rather that Gold Standard tests!) a week before my 40th birthday in 1997, and I then tried getting the NHS to test my kids. To cut a long story short, their blood results were ambiguous. One was certainly effected the other was borderline, but I was not prepared to put them through invasive medical procedures just to satisfy some "doctor-invented" mythical gold standard. I just went ahead & put them on the same diet as myself for the long term benefit of their health. After much discussion, I managed to get the NHS to regard them both as "Coeliec" and they got (no longer provided due to cuts) their GF prescriptions OK. Since the GF prescriptions will no longer be provided (no bad thing if your T2-Diabetic like me!) then you need not worry about that. As I said it is your children's health that is paramount here, so do what you know in your heart to be the right thing, irrespective of what the medical fraternity says! ~ That's probably Gluten-Free feeding.

BFN & Lots of Good Luck,

09 Oct 17

Curiosity7.

[marydoll60 in reply to Curiosity7]

thanks.

[Jacks]

Sadly no and a lot of us have been there.