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Guest celiac mum

Refactory Sprue

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Guest celiac mum

Has any one else have any children diganosed with refactory sprue , I have two 5yrs and 7yrs find it really tough

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Has any one else have any children diganosed with refactory sprue , I have two 5yrs and 7yrs find it really tough

What prompted their doctor to diagnose them with refractory sprue? What are their symptoms? How long have they had celiac disease?

I am asking these questions because it is exceedingly rare for children not to heal very quickly after going gluten-free. They might still have symptoms because of other intolerances! Dairy and soy can cause villi damage as well, and can stop people from healing from celiac disease even after going gluten-free.

Are your children still consuming dairy and/or soy?

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Guest celiac mum

The 2 older children were diganosed with celiac about 3 years ago , My middle child Abigial was diganosed with refactory sprue Jan 07 after 2 years following a gluten , wheat, milk and Soya free diet unfortunately there was still a lot of damage seen via biopsy and she was in and out of hospital quite unwell, and Jan 07 last year was when she was started on tube feed diet and is Nil by mouth still and her last biopsy still shows some villi damage.

My Elder daughters biopsy results were improving following the same diet but still weren't right, but over the last few months her symptons have got worse and so has the damage shown on her biopsy.

Its very hard as i know it is rare to have one child with refactory sprue let alone two

I have followed their , but its hard to think its my falut somewhere, My baby is also on the gluteen free milk and soya free diet and has been since birth .

I don't know i'm struggling to take it all in at the moment

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Maybe there is still gluten in their diet somewhere. That is usually why kids won't heal.

Have you replaced all their personal care products (bubble bath, shampoo, conditioner, lotion, soap etc.) with gluten-free ones? Did you get rid of play-doh and get gluten-free stuff? Kids WILL put their hands in their mouth and get glutened from things like that. It is inevitable.

Also, a lot of glues contain gluten that might be used for crafts.

Did you replace your toaster? What about wooden cutting boards and wooden cooking spoons, and plastic colander? It is not possible to clean those properly of gluten, and you will keep getting glutened unless you replace those items.

Do you eat gluten, does your husband? There are so many ways of getting cross contamination!

Have you made sure their vitamins are gluten-free? Many times they contain wheat starch as a filler. And often vitamin E is derived from wheat germ oil.

I don't know where you live. Your name suggests England. I know that over there they claim that wheat starch and wheat germ oil are gluten-free. But many people with celiac disease will get sick from those, and here in America the labelling laws are different.

It must be very hard for you, I can't imagine having two kids that ill. I hope that somehow they can be made well again.

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Guest celiac mum

Thats what I keep thinking am I doing something wrong, giving them a small amount of gluten by mistake, I keep going through all of their food to make sure and the moment I can find a source.

The girls have their own cupboard in my kitchen , their own toaster , their saucepans and chopping board and dairy free spread in the fridge.

I think I'm doing all the right things but you can't help think am I missing something.

Although I'm feeling really fed up today Abigail had a bad day today, she goes to school for a few hours and on the way home she callopsed a problem with her blood pressure I was told, but I don't think anyone really knows.

It is difficult to think that two out of three of my children have been diganosed when I know it is rare for children to get it , not sure what to do next .

I would love a day that I could not worry so much , sorry must sound like a drag .

I'm sure I'll being feeling strong again tomorrow

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Ursa made a good point.

Alot of prescription food in the UK contains 'Codex A' wheat starch - although deemed 'safe for coeliacs' NOT all coeliacs can tolerate it - just checking you are aware of this :)

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(Did you post on another thread, in another forum? Because I could swear I just read about someone with refr.sprue overseas.....but just in case it isn't you.....here I go!)

Let's assume you do, in fact, have these children gluten-free. If that's the case, obviously something else is seriously wrong, and changing their shampoo won't help and only endangers them further. Even a non-compliant celiac would not be reduced to tube feeds by incidental exposure, IMHO

What specialists have you seen, and what did they say? They've been thoroughly tested for other food allergies? My son has autoimmune enterpathy and celiac -- a very, very, very rare combination----and if your children are resorting to tube feeds then perhaps someone should investigate AE. AE presents very similar to celiac but has characteristic damage and does not respond to dietary change. The only treatment for AE is immunosuppressant meds, usually tacrolimus or cyclosporin.

My son was dx celiac, was not recovering on a gluten-free diet, and dx with AE as part of a long hospitalization. I want to emphasize this is a rare disease, so don't be alarmed by anything you might google! But keep asking "if they are celiac, why are they still so sick". You are doing the Good Momma thing, so keep it up!

joanna

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changing their shampoo won't help and only endangers them further

How could changing their shampoo endanger them further? What sense does that make?

On the other hand, I agree that it is time to find another doctor who is willing to find out why these children are not responding to a gluten-free diet. Usually people only get refractory sprue after having had undiagnosed celiac disease for a very long time, and therefore have severe damage. Little kids haven't been around long enough for that kind of irreversible damage to have occurred, in my opinion.

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Just some thoughts, but is anyone cooking with wheat flour or wheat cake mixes in the house? This is enough to get in the air & keep the kids sick. Also, any candles, air freshners, fireplace smoke, cigarette smoke in the house?

For the child in school, I would get the individual hand wipes & teach the child to use them often. I carry those in my purse & even I forget to use them sometimes. I would think it impossible that the child was not getting cross contaminated at school.

I would also do a trial of totally grain free. & definitely dairy free & soy free. I did not see if you said that the children were dairy free, but dairy is sometimes as bad as gluten on the villi. I do not know if in England the moms are as mis-informed by the government as they are in the U.S. that dairy is a necessary food for good health. It is a total myth that anyone needs dairy to "build good bones & teeth", but one that is hard for people to let go of... I keep hoping that as the price of milk skyrockets here, that people will just quit buying it... I highly recommend coconut milk as a replacement for cooking.

& yes, I would also use gluten free shampoo, we all run our hands thru our hair & touch our eyes, mouth, teeth and our food. I do at least. I do not think I would want to put anything on my hair that had lead in it, I feel the same way about gluten, just something that is unhealthy for me & I do not want to be touching, lead or gluten in my hair.

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How could changing their shampoo endanger them further? What sense does that make?

...well, it doesn't make sense the way I originally put it :) I meant that if there is something ELSE wrong with these children, that they are in fact gluten-free, the time spent (therefore needlessly) examining their diet (which also is doctors basically blaming mom for not getting that right) endangers them by it being that much longer that a real diagnosis can be made. Of course you are correct, gluten-free shampoo/lotion/etc. do need to be checked....

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@Alaskaguy With regard to the timing, I think that everyone is a bit different! I used to have a shorter time to onset when I was first diagnosed (within 24h). As time has gone on, and I've glutened myself less and less, I have noticed that the time gets a bit longer.  Recent history seems to matter a bit too - if I've been glutened recently and then get glutened again, the rash will show up faster on the second round. For example, in the last 3 weeks I got slightly glutened by inadvertent
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