I need some peace of mind from others who really know what they are talking about

[bennutley]

My son was diagnosed in april by a biopsy as a severe coeliac patient and since then we have had our ups and downs with his diet a few accidents here and there but only been small things I have changed all my main meals to gf including mine and my other sons meals due to contamination he's now had his 6 month check and routine blood tests and I knew before his consaltation his ttg wudnt be perfect but I was shocked to be told he was still 300 and I still dnt know where we have gone wrong. So I have changed what we are eating maybe the chips I bought where contaminated so we have stopped but becuase my son has global development issues aswell I am being blamed for nt following his diet and they won't believe me and its getting to the stage where social are putting it as a risk as they think I'm lying its reallly unfair as they judge me wen they come round 20 questions is tht his food is he aloud tht and I feel like saying NO I'm just poisoning him with gluten food for sarcasm I'm sick of being belittled by these people is it common for a ttg test not to drop passed 300 in the first 6 months please really need some advice

[maidforit]

Oh gosh, this is awful, I really feel for you, no one would want to make their child ill.

Does he have a dietician at the hospital? It sounds like it could be useful to get in touch with them and ask for further help on the foods that he should be eating, it will give you peace of mind and make things easier for you when shopping and preparing food. If you don't have a deitician, demand that you have one

It may make sense to only eat foods that state that they are Gluten Free on the packaging. Sainsburys are quite good for this, as are Aldi, and it means that you can find ranges of 'normal' that don't cost a fortune.

I hope that this helps a little. There will be lot's of people who will be able to give even more advice.

Good Luck! xx

[bennutley in reply to maidforit]

Thanks you I use the coeliac uk directory when I am shopping and also check ingredients when looking at products my main concern is the ttg level as I've done my best to keep him gf but some where I've gone wrong and now being told I'm not following a gf diet at all and constantly being asked to show what I have for him to eat

[jan44]

Hi

What a nightmare for you. I don't know how old your son is but I wonder whether if when he is not with you he is still consuming gluten containing foods ie having a few maltesers given by his friends there are loads of confectionery products which contain gluten he may be eating someone elses cakes or crisps(things like wotsits quavers and hula hoops still contain gluten)Its only a guess but this sort of thing could really be undoing all your good work and it is so frustrating especially if he doesn't understand how serious the condition is. Perhaps you could post what he would eat on a fairly typical day so we could see what hidden gluten may still be in his diet. I got caught out with heinz smoky bbq beans recently when they changed the recipe and the new bbq beans now contain wheat!!

Jan

[bennutley in reply to jan44]

Thanks Jan yes I recently checked bbq beans and found they contained gluten he is 4 years old and has school lunchs but my social worker has explained tht the school is very strict with his diet so I'm the only one left to blame before his results I was getting takeaway chips and smokie which I found was gluten free but I think could of been contaminated so we have stopped that all together now and when it comes to gfood I used bistos best gravey all fresh meat mince gammon stated gf sausages gf burgers beans waffles ( stated gf ) pom bear chrisps gf biscuits gf crackers gf bread he also has a seperate toaster and butter and chopping board vegtables chips big soup tomato soup gf pasta chopped tomatoes cerael that's noted in directory and gf cereal brand buttons kindereggs stars chocolate lollys that's what I can think off from top of my head

[Hidden]

It certainly sounds as if you are doing everything you can thinks of. I feel so awful for you being treated as a villain- that isn't a good way to get people to change even if they aren't doing what they should!

As he is so little perhaps he could have some wipes in his pocket to clean his hands more - I found I got ill all the time when I visited my stepdaughter as her little children carried glutened food around so often everything was covered in gluten. Now they are older I don't have the same problem. The kids he plays with probably do the same thing - carrying biscuits etc means they will have a layer of gluten on their hands and clothes, and then they touch the toys and furniture.

The other thing to look out for is codex wheat starch, which is in prescription foods and I can't tolerate. The official 20ppm safe level is too high for me.

Hope things improved for both of you soon

[Lynxcat]

Hi Ben, The first year after being diagnosed is very difficult for anyone and will be especially trying when it involves a child. I am not sure what advice you may have been given or what foods you are trying out. These are my thoughts and I hope that they help you and your son.

Firstly, to aid healing as quickly as possible, although it is difficult I would try and avoid the 'free from - or gluten free' aisles of the supermarket if you can. Check out any 'gluten free' bread, etc that you buy and avoid ones that include Codex Wheat Starch, Maltodextrin and Xanthan Gum. It is difficult to boycot cereals for youngsters so look out for Nature's Path which are gluten free and use molasses to add a malt flavour to them rather than barley malt - which is in most other cereals. Avoid all oats - even gluten free ones to make the healing process much faster. Gluten free sadly doesn't mean void of all gluten it is simply means that they have taken the gluten down to levels of 20ppm or less which is allowed in law. Although some coeliacs eat foods with this amount of gluten in - it may be advisable to try and avoid it to bring down the antibodies in the blood and allow healing to take place. Avoid things like Brewer's Yeast and Marmite. Sweets may also be a problem as most contain gluten. Avoid sliced meats and sliced and grated cheese as these are sprinkled with wheat starch to help to keep them separated. Ice cream - everyone loves - but this too can be problematic so look for full dairy (unless your son is allergic to milk or lactose) - I believe Mackies of Scotland is fairly safe (always check the ingredients and avoid maltodextrin, etc - rather look for natural sugar).

Here is a link that may help you find extra flours, etc that are useful to keep clear of gluten:

foodchallenges.ca/food-fact...

Hope that this helps - just a tad. It is so overwhelming when first diagnosed and all you want is to be well ..

Best wishes and I hope that your son is soon well again.

[bennutley in reply to Lynxcat]

Thanks I am now overwhelmed and very confused. The bread I get on prescription is glutafin white loaf which contains wheat starch is this a bad thing is maize flour bad as noted in biscuits from trufree bourbon biscuits??? Also oat flour??? You mention not to go near the free from isle?? Should I only get prescribable products ?

[FionaGFG Administrator]

Hi Bennutley,

Thanks for posting. I'm one of the admins here but am recovering from an injury so haven't been as active here as I'd like. I'm sorry to hear about your problems and that you feel that some of the answers you have received have confused you even more - as you can imagine the site is for sharing hints and tips on living gluten free not for scaring or confusing anyone. So I hope this post can help reassure you.

Firstly, from what you have written and as other members here have said you really do appear to be doing all the right things. So please do not lose confidence! It's hard enough going gluten free yourself as a coeliac after diagnosis, let alone looking after the diet of a young coeliac child.

Here's some key points for you:

1. Having separate toasters, prep areas and butter etc is great. So you're spot on here!

2. The food items you have listed that you are feeding your child all appear to be gluten free so it sounds unlikely that the problem is there

3. Using the Coeliac UK food directory is a good starting point

4. Be assured that when the new EU law came into effect in Jan 2012 that gave all coeliacs an opportunity to eat gluten free foods that were at a reduced level from the previous classifications as the law and levels changes e.g. previously foods / drinks could be labelled gluten free at 200ppm or less now they can only be labelled gluten free at 20ppm or less. The aim of this law was to protect coeliacs who had adverse reactions to foods at those old levels. Be reassured that your son should not have any ill effects from eating gluten free foods.

One of the big risk areas for any Coeliacs is what happens outside of the home where you can't have complete control over food preparation or cross contamination. So I'd urge you to flip the spotlight from you and demand from your social worker and school that they identify and provide a list to you of all of the food AND drinks that your child is consuming on a weekly basis. The big risk area is what happens outside of the home where you cannot see and take measures to ensure his food is gluten free. I'd recommend you ask them: 'Is the food cooked in the same oil as other items containing gluten? What measures are taken to prevent cross contamination? What ingredients are in sauces and gravy he has on his food? What drinks is he consuming? Is the food prepped at school or brought in from outside? Are they sure he isn't eating food from his friends? '

5. We'd also recommend that you see a well qualified NHS dietitian and you take with you a typical meal plan for your child so that you can have support and advice that he is eating a balanced and gluten free diet. If you haven't ever seen a dietitian then visit your GP and ask for one. Given the current situation I'm surprised social services haven't considered this option instead of just trying to lay the blame at your doorstep - after all a dietitian will know a lot more than social workers will about strict gluten free diets. Get your GP on side with you and I'm sure that will be a real support.

6. Oats: this is always confusing. Here's what you need to know. Normal Oats can sometimes be contaminated with other gluten containing grains. So the Free From aisles of supermarkets instead has a variety of Gluten Free oats and oat cereals for Coeliacs to eat.

Coeliac UK say oats are OK for the majority or coeliacs. However, NHS dietitians normally recommend that all Coeliacs avoid gluten free oats for the 1st year after diagnosis and then only reintroduce them gradually in very very tiny amounts with their support. This is because the protein in Oats is very similar to the protein 'gluten' i.e. Oats contain Avenin which is similar to gluten and some coeliacs cannot tolerate even gluten free oats due to this protein.

7. Hints and tips:

We avoid any products containing barley, barley malt, malt vinegar plus those that are labelled 'no gluten containing ingredients' (this means an item can be produced in the same place as gluten items, but it doesn't mean they regularly test their foods so there is a greater risk of cross contamination. It doesn't mean an item is gluten free although it sounds like it does) or 'produced on a line that handles wheat' e.g. Bisto Best gravy. Here's why. Although many coeliac societies deem this to be OK we've personally had reactions to them. So to keep life simple and not spend hours when shopping in the supermarket we avoid them. Instead we use Kallo gravy pouches (labelled gluten free) and buy items that say gluten free. If in doubt we email producers directly so we get the most up to date information from them.

8. FYI ref previous comments:

> Free From asiles are fine - some of the foods are higher in fat, salt and sugar but eaten in moderation they're fine and labelled 'gluten free'

> Codex Wheat Starch - is classified worldwide as gluten free - it is processed to remove the gluten. Often new coeliacs avoid products with this in whilst their body heals to help keep life simple - however dietitans will readily recommend it for coeliacs

> Maltodextrin is also classified as gluten free worldwide. Some coeliacs find it hard to process however it should have no impact on blood test results for coeliacs

> Grated cheese sold in supermarkets is normally gluten free. Note: any food or drink item sold in the EU has to label allergens by law please do not be scared to use these. Obviously grating your own cheese is simpler and cheaper anyhow ; )

> Xanthan Gum - please again be reassured that worldwide this is classified as gluten free and is used in many gluten free breads to give it a bread like texture

9. 300 is quite high on the blood test results. These blood test results normally reflect anything that has been eaten or consumed in the last 6 weeks prior to the test. Getting to the bottom of problem is obviously a key concern for you. You could ask your GP to repeat the test over Christmas when you're in control of the food and see if the levels have dropped. But it's not nice to subject young kids to blood tests. Really chasing a dietitian and a good gastro doctor for your child is the best way forward. It's unlikely but sometimes labs make mistakes in their blood tests. You don't say how many before this your son has had. Either way talking through your concerns with your GP and getting them to support you is useful. Do explain you're keen to help ensure your child is fit and well and are following the steps Coeliac UK outline etc.

10. Do you know what your child's blood test ttg levels were at diagnosis? I ask because if they were very high they can take at least 6 mths on a GF diet to come down to lower levels.

I hope this helps. Please keep in touch and let us know of your progress.

[bennutley in reply to FionaGFG]

Hey thanks for your advice my sons initall TTG level was 300 when first diagnosed and has had his routine 6 month blood test due to how severe his symptoms are he had. 7 for his iron lvls and is now on iron meds he also has to go bk in april for another blood test to see what's going on I have a dietician within the hospital I thought I was doing well but some thing has went wrong I used bistos best gravey as its stated in the coeliac uk directory and I use it a lot would you not advice this? I feel my social worker thinks I'm just being a lazy mum and feeding him anything I wish to choose to give him as the test shows he's not been on a gf diet and the dietician is concerned to so I'm lying to everything makes me feel lyk I have. Leg to stand on

[FionaGFG Administrator in reply to bennutley]

Hi - from our personal experience we avoid Bisto Best gravy. You are right it is listed a GF in the CUK directory. However, each time I ate it I had a bloated stomach and became constipated. Like you I trusted it as it was in the CUK Directory. The Bisto Best gravy is made on a line with gluten and they do run tests from time to time and clean the lines in between production. It maybe another ingredient within it didn't agree with us. Since we stopped using it I don't have those problems. Instead I use Kallo Bouillion gravy granules but they recently discontinued them. So now I use their new sachets (fab taste and they make a nice and thick gravy) and these are clearly labelled gluten free: saykallo.com/products/stock...

It's highly unlikely that Bisto Best would have any impact on your son's ttg levels. Yet if you keep his diet as simple as possible you may find his levels improve i.e. just eat Free From items, avoid codex wheat starch, oats, barley, barley malt, malt vinegar and any items labelled as 'no gluten containing ingredients' and 'produced on a line with wheat products'.

There are a lot of items in the CUK directory classed as 'low gluten' i.e. 200ppm or less (we avoid all of these) and there's also a lot made on a line with gluten. We also avoid those as we mentioned in our earlier post. The debate about super sensitive coeliacs etc is a red herring. All coeliacs whether they have obvious symptoms or not will be damaged by eating gluten. Many will eat items labelled as 'produced on a line with gluten' and think they are fine but will discover at check ups that their ttg levels are high or their iron, vitD and B12 are extremely low and not improving as they are being affected by the items they are eating produced on the same lines as gluten items.

Some Coeliacs can have a condition called Refractory coeliac disease whereby they don't recover on a gluten free diet and they need medication. However, this is very rare and more common in adults who have had undiagnosed coeliac disease for years and so had a lot of damage to the villi in the small intestines. You can search our 'tag' directory here on our site to learn more about it. Before that is diagnosed Drs must rule out other conditions like microscopic colitis, gastro infections etc. Instead medical research commonly points to people not sticking to the GF diet as to the common cause of high ttg levels. Which is why you're finding you're under the spotlight. In fairness to medics many adults do cheat on the diet at first and some make simple mistakes in the early days so it's easy to see why they focus on this area as it is the simplest to solve and least invasive to any patient. As we and others have said it does sound like you are doing the right things - so it's important to get your Drs on side with this.

As Coeliac Disease is an auto-immune disease the reactions each person has are different; some are sent dashing for the loo with stomach pains, some bloat, some feel hungover, some develop eczema, some get moody and low. However, what stays the same is that if anyone with Coeliac Disease ingests gluten they will damage their body as their immune system will attack the small intestine and other cells.

You may find it useful to call your dietitian - often they're happy to do phone consultations and ask for advice. If your son's levels were 300 originally they won't have suddenly dropped to 0 after 6mths on a GF diet. They'll still be relatively high as it takes time for the anti-bodies to lower. Discuss this with your gastro Dr and dietitian. It's also worth getting your son's B12, Vitamin D and folic acid and calcium levels checked. If his Iron is low then these will all normally be low and will need extra supplementation or injections to boost them. With the iron being so low it probably means his intestine and villi must still be damaged as he's not absorbing the iron from his diet properly. Again this is something to discuss with medics not social workers. I'd recommend you take a good friend with you to appointments so they can back up what you have said and help prompt you if there's anything you forget to ask. It can be quite intimidating tackling all of this on your own but don't give up!

As I said before the thing that jumps out at me as the biggest risk area is the school meals. I'd chase that up and get well defined answers to exactly what happens then and how he is managed! Or insist on switching him to packed lunches instead (not so great in the cold winter). Keep us posted.

[suzi_lewis]

Hi

I am a super sensitive coeliac. Like your son after 1 year my biopsy showed no signs of improvement.

I have now been put on a super sensitive diet, which means I can only eat naturally gluten free food, so the codex wheat starch index is unacceptable for me even if levels are apparently low enough for a normal coeliac. I definitely can't eat the GF bread from glutafin, or bisto gravy, and I also avoid oats. I have to listen to the 'handled in a factory that uses gluten' warnings. I now never eat out as contamination is such a risk

If you follow this 'naturally gluten free' rule you can't go wrong.

[jan44]

Hi Again

I too had what was considered by my GP a sky high ttg level at diagnosis. When I first saw the dietitian she advised me not to eat products with wheat starch and also the Cereals from the supermarket which contained barley malt extract (but were listed as ok in cuk book). I have eaten the trufree custard creams and as far as I know maize starch is ok. I also eat other things from the freefrom aisle. Do you have access to an independent Health food shop locally? I do and I am able to order the odd item that I fancy that you can't buy in the free from section ie products from orgran,eskal and different shapes of doves GF Cereal. That way I don't get clobbered for heavy postage charges but I get to try something new. They just charge me the price they would sell it for in the shop.

Another thought does your son play with play doh or pasta shapes? the stuff at school would probably be the gluten containing version which is not helpful at the moment. I wonder whether when the school say everything is checked how thorough this is, there is a tremendous ignorance from people who don't suffer with CD how serious a small amount of gluten can be. I have that battle regularly with members of my own family.

I hope you see some light at the end of the tunnel soon.

Jan