Coeliac test negative - now what?

[wangle99]

Finally had the result for DS coeliac screen - its negative. Admittedly the Dr said he got that result over the phone and is waiting to see paperwork before 100% sure that is the case.

He has said to start DS on a gluten free diet asap and will review him in a year, we are getting an appt for the dietician.

Argh was so hoping it would be coeliac disease as it would be nice to know what we are dealing with but I feel just as lost as ever!

[tatt]

you're doing a good job of educating your doctor, Isababel.

[wangle99]

We saw a paediatric dietician today, her opinion was that testing for food intolerances is a waste of time and that it should be sussed via an elmination diet.

Her suggestion was we try wheat removal only for 1 month but try and keep gluten in DS diet.

So that's what we will do from tomorrow!

[clerkKent]

I read that it takes American adults an average of 7 years to be diagnised as coeliacs. During that time they have 35 days sickness a year; after diagnosis it drops to under 5. Medics who know what they are talking about in this field are few and far between.

[Isababel]

I have realised that I'm about one year ahead of DS's paediatrician.

First time I explained about him having intolerances and he laughed on my face, next visit a year later he justified DS reaction to milk despite a negative test result as... intolerances!

Second time I explained about the need to retest for soya as it was the thing that was causing more dificulties in gettings DS into a healthy diet. He told me that he couldn't see why soya could be a problem as it was "hardly" part of anybody's diet. One year later he lectured me on how soya is present in almost every processed food (a thing I knew when I asked 12 months before)

I recently asked about probiotics and enzymes and he told me the only way to deal with food allergies is total exclusion of the offensive food... someway I know we will be talking probiotics next year!

[nightcat]

No surprise re: doctors, you will find many on glutenfreeforum who have given up on educating their drs and moved on to those who understand. It's a very complex area and many are simply not trained in that.

[wangle99]

Have only just checked back here, wasn't expecting any more replies!

Tatt - I think they did test IgA - I haven't had exactly results yet.

Nightcat - we did vega testing and it showed wheat and eggs, my gp laughed in my face and said load of rubbish and wasted my money. However DS responded fantastically well on a wheat free diet.

Isababel - that is really interesting regarding your son. I wonder whether DS's problem is with only wheat but I was told they couldn't test for that! Presumably they can as your son was tested for it - I will pursue that!

daisyandbabybootoo - DS had the full coeliac blood testing. Paed not interested in doing biopsy if not sure is coeliac or not.

mishmash - thanks, I have heard alot of good (and unfortunately some bad) about York testing, I may enquire with them about getting DS tested as they can differentiate between wheat and gluten.

heartmum2jamie - definately coeliac, wouldn't test for wheat specifically (told me they couldn't!) am going to ask paed for that.

The reason they were suspecting coeliac is because my husband has the same symptoms and of course coeliac is hereditary. We have a dietician appt tomorrow - a cancellation happened and they are fitting us in! Very pleased although not sure how useful it will be! Am very cross with my GP though, he doesn't seem to know what testing is available for that grrr.

[TMD]

Hi, I found it very interesting reading all your different experiences. I have found my self trying to sort out my stomach as doctors don't seem to want to recognise this problem. I was told for 6 months in the beginning just a tummy bug but I lost 2.5 stone! Food was becomming an issue didn't want to go out as too scared might have an episode and not be near a toilet. At my age, well any age really quite embarrasing! I was offered councelling as thought could be pshycological?So that prompted me to go it alone! I've changed doc surgery's recently but not been consuming wheat or gluten for last 4 years. They tested Blood for wheat gluten but from what I now understand is that the test would have come back neg as I haven't purposely been eating it! I am much healthier than before less sore throats colds, no stomach upsets, however I still experience nausea but the doc just says unexplainable? Just made to feel like making it up!I make most of my food from sratch very rarely eat out as too much hastle finding out what things are made from.
I was anxious when My C was born but we introduced wheat and gluten and touch wood no problems so far! I would imagine it's more difficult with children especially when at age peer pressure and making them understand why can't eat same as their freinds.
Well i'd better go and sort out some lunch. I'll catch up again soon.

[Isababel]

Thanks for looking Tatt.

[tatt]

still acn't find it - but the special needs section of mumsnet is worth a look as they are well informed about gf diets. You may also want to read what they have to say about enzymes.

[tatt]

4% of coeliacs have levels low enough to affect the test according to this (1c) www.enabling.org/ia/celiac/diag-tst.html

[tatt]

don't know - will try to find out but it gives false results in about 2 or 3 % of cases www.labtestsonline.org.uk/understanding/analytes/coeliac_test/sample.html

[Heartmum2Jamie]

I have not read all the replies and am unsure of your back story, but was the test specifically for coeliacs or have they tested for a wheat allergy (different to coeliacs, although you follow the same kind of diet)? My ds has not been tested for coeliac, but had a positive RAST for wheat and he reacts exactly like your ds. If it is neither of these things, it could just be an intolerance. I am intolerant of quorn and react very much like I have an allergy, which I know I don't because I can eat everything else just fine, but not quorn.

[Isababel]

TMD,

Thank you, he is currently in Pepti, a formula for children allergic to milk protein... I think there is more to milk than lactose, he is reacting even to lactose free milks... well, tbh... he is even reacting to rice milk, but well... he is a walking allergy catalogue...

Which reminds me, please take York Test results with some caution. DS shown to be positive to 97 of the 113 food tested. Apart of the main allergens he seems to be relatively fine with the rest.

[mishmash]

Hi Wangle

I did the York test which came back and it also showed that I was ok with Gluten but not Wheat. I found this strange as my sister is coeliac and was convinced I was the same. Mine also showed me to be highly dairy intolerant, yeast and eggs.

I have been on an elimination diet for a week and a half now but am still having symptoms, albeit not as severe as before.

I am going to stick with it for the recommended 4 weeks although I am finding yeast difficult to totally eliminate as so many foods contain Yeast Extract.

I am keeping a food diary and am also gone back to cooking everything from scratch.

My sis has recommended me to go for proper coeliac testing - ie the biopsy so will see how I am in a couple of weeks.

[daisyandbabybootoo]

How was your DS screened? If it was only a blood test, these are not always reliable. I have coeliac disease and everything I have read on the subject says the only way to test for it is to do a gut biopsy.

You need a referral to a gastro-enterologist with experince in coeliac disease.

also confused as to why your GP has said start the GF diet. It is against all medical advice to start a restrictive diet if it isn't necessary.

[TMD]

Hi Isababel,
Was just reading your message and rememebered this artical in this months Now mag! 17th sept 2007. it is about dairy allergy and what to try to do if you think it may be a problem. But what i actually thought may be helpful was apparently a new milk on the market called lactofree with a pic of a cow on the front. It says it tastes like fresh milk but without the lactose and they have a hard cheese out too. They give a website ( you may have already visited it) www.lactofree.co.uk
Hope this might be helpful????{smile}

[Peachy]

DS- and me to an extent- cant tolerate casein or wheat, ds1 is on a gf diet and is due a blood test next time he sees the Paed in November; I tsted negative on the blood test but the diet amkes a difference.

My BIL also tested negative for everything- had full tets including biopsy- negative. Turned out the tests were done wrong, has intolerances linked to ulcerative colitis and is awaiting an ileostomy (irreversible) at 30

[Isababel]

Tatt, which are range values to consider an IgA test not reliable?

[Isababel]

Wangle.

You really don't need a positive in a test to know your child is not OK with a certain food. Tests are not perfect (DS's test for coeliac was negative, so was his RAST for glutten but he showed a positive for wheat in his skin prick test), if you see such a problem with glutten, you just need to avoid it regardless of what the tests say.

DS results to milk are getting lower and lower and we were told a year ago that he was no longer allergic to it, but... if we give him dairy products he either gets a rash, his tummy hurts, the asthma is back and his face always gets puffy.

[nightcat]

In gluten-free circles there is an opinion that positive dietary response is the only real proof.

You could try the scio/vega nutritional testing (at least that's not invasive), alternatively there is also a specialist genetic testing for genes that carry gluten intolerance (my son was tested by a neurologist and was found to have the gene - he was already on the diet showing amazing improvement by the time we got to the neurologist).

I actually never pursued free g/f prescriptions for him (so the 100% diagnosis wasn't that vital) because I realised that the main nutritional benefit lies in veg rather than carbs, so we don't buy that much bread.

[tatt]

when you get the test results ask if they tested total IgA because if that is low the test is not reliable.

Anyone who has a problem with wheat may find that causes a problem with dairy - eliminate wheat and you may be able to have dairy again.

Wish I knew what else you can do to identify the problem - sorry.

[TMD]

Hi here is the carrot soup recipe.

1 Bag Carrots
1-2tbsp sunflower/olive oil
Kallo Organic Low Salt Vegetable stock cubes
(gluten/lactose free/low sodium)find in tesco
Coriander Leaf

• Put oil in sauce pan.
  
• Peel and chop carrots into slices place into pan and saute for about 10mins.
  
• Depending on how thick you like your soup take stock cube dissolve in boiling water and add to carrots, simmer for about 20mins.(full instructions on packet for use of stock cubes).
  
• Transfer contents of pan to a blender add coriander to taste. Blend to required consistancy.
  
• Return soup to pan and Keep warm until ready to serve.
  
  I have frozen this in portions for my little one. Taken out the night before its gone down well for lunch following day.
  Enjoy! {smile}

[wangle99]

DS has been on a full gluten/wheat diet since 15th July and I am making sure he has been eating sufficient amount a day!

It was the blood test for sensitivity, the paediatrician has said we will leave the biopsy for now.

If it is a intolerance there is no formal diagnoses so I guess we'll never know for sure. DH is going to be tested because he has EXACTLY the same symptoms which is why we thought coeliac as hereditary.

I feel like I'm going around in circles!

[tribpot]

wangle - my dh has been tested a number of times for coeliacs, always negative but clearly has a wheat/gluten intolerance. (He is fine with oats, but ds can't have them either - haven't had ds tested because of the time he would have to be back on gluten to make the test meaningful).

If cutting out wheat is helping your ds, then it may just be an intolerance rather than coeliac's. Bit of a pain as you still have all the same stuff to deal with but none of the support that comes with a formal diagnosis.

Would like the carrot soup recipe though!

[tkband3]

The blood tests are not fool-proof...there are often false negatives. Given your son's reaction to being on a gluten-free diet it would appear that there is every possibilty he is coeliac. Given this, perhaps your GP could refer him to a gastro-enterologist so that he can have a biopsy to confirm once and for all. How long had he been back on gluten before the blood test? Coeliac UK advise that you should be back on gluten (eating as much as equivalent of 4 slices of bread per day) for 6 weeks prior to testing. Obviously if you go for the biopsy, you will need to keep him on gluten until the biopsy, but it might be worth it in the long run.

Sorry that you still don't have a definitive diagnosis - I hope you get somewhere very soon.