Tag Archives: coeliac

Germs, school rooms and dreaming of a farm!

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Not feeling very “bloggy” lately. I can honestly saw we are all exhausted.

End of May, I finally went to the hospital and handed all our papers in. So many hospitals working together on our case. I just wasnt ready to hand it in sooner. It looks like they will still want us to go to Warsaw to check something there. We have the unexplained signs of autoimmune activity and bla bla bla. Bla bla bla may seem a bit blasé, but I just cant manage more then that right now. Im tired of “it” constantly being what our life revolves around. Waiting now to see how often we need to re test her igg’s also.

On a very positive note, she has not had pneumonia since she was taken out of school. TOUCH WOOD (as she sits downstairs with a big wheeze and a cold). She even had the same 48 hour cold / virus that here brother had a few weeks back, and hers ALSO lasted 48 hours. I almost cried with relief. I had no idea her immune system knew how to do that!!

The doctors are hopeful that this break is all that we need, but lets see, only time will tell.

On the school front, we have our plan, and our back up plan. She will have tutoring in school 3 times per week without germy other kids around. Hopefully she will still be ok with this once flu season starts, if not we will have to take her out fully. Im ok with all of this, I have gone over the plan in my head a million times!

New house is looking fab, and thanks to my Pinterest research, our school room eats other peoples school rooms for breakfast! We LOVE the school room, its probably our favourite room! A couple of more things to do, then its all ready.

We had Celiac kiddos birthday party just a few days after moving in, and it was fab! I thought the preparations would send me in to a stress fit, but it really wasn’t so bad! Guess Im becoming a pro at catering to people the gluten free way. Even the corn free and egg free is getting a tad easier, although I do miss being able to buy bread!

Our biggest enemy lately is not gluten anyway, its those pesky germs that everyone carries around, the stuff that lives in peoples noses, the stuff that little kids sneeze out and cough out and touch and then attack celiac kiddo with. Ok, fine, nobody is attacking, but sometimes it really feels like it. Its SO hard keeping her safe without going overboard.

I go to the supermarket early in the mornings now when its not so busy, that way she wont need a mask, more times then one Ive changed checkout after seeing a snotty cashier sneeze / cough in her hand and then carry on moving peoples groceries to bags. I don’t even want to start thinking about the stuff we don’t see!

Im telling you, the only safe way to live is in a house in the country, where you grow and raise your own food! It used to be a sort of joke I told, but I am more and more serious about it as time goes by! haha (any excuse to wear wellies full time really).

So, thats us! 3 more days of school, then maybe, hopefully, we can all re gain some energy! Which might mean more blog posts. Lucky you 😉

-Linda

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The image is of a big scary germ. Obviously. Just incase you didn’t get it 😛

Myths and facts and insensitive bas***ds (FAQ about Celiac)

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Why is your house gluten free? I mean common, its just gluten right? 

Because Celiac disease kills. Yup, it kills. Only it does it slowly without huge obvious signs. Would you keep nut dust around in a nut allergy home?

Oh common, just one bite wont hurt? 

Hell yes it will. It will hurt, ALOT. In some you cant see it, in some the effects are felt and heard, for a long time. The last contamination we had the effects lasted almost 3 months (and that wasn’t a bite, it was contamination!)

Oh yeah, Im allergic to gluten too.

No you are not. You either have Celiac disease, gluten sensitivity (NCGS) or Celiac disease. Celiac disease is not an allergy, its an autoimmune disease.

You are just being difficult / embarrassing. 

HELL YES, Im trying to save my kids life here. Did you know Celiacs who are not gluten free or are repeatedly exposed to gluten have a much larger chance of premature death then the general population? There is also a higher chance of developing another autoimmune disease, as well as the risk of malnourishment and everything that comes with it, to name just a few of reasons I am being difficult / embarrassing.

Do you really have to wipe the darn table when we go out for coffee (insert eye-roll)

Yup, I do, if you cant deal with it you cant be my friend. An 8th of a breadcrumb can be enough for a reaction, thats my kid touching the table all over and then forgetting about it and popping a finger in her mouth or touching her lip then accidentally licking it. If you are my friend, you will help me wipe and give evil looks to anyone that stares!

Its Christmas, let her have one, it wont hurt her

Sorry, Celiac disease doesn’t take holidays.

Gluten is killed off / burnt off in high temperatures

If this logic was correct we would be able to eat a loaf of bread, its baked in the oven…. or an onion ring thats deep fried…? No… not so much? Didn’t think so.

So if you can write a list of what she can and can’t eat….

Yes, because that would be so easy, why didn’t I think of that earlier! THANK YOU!

If you leave bread out overnight the gluten will evaporate.

You really must have had a really special kind of education….. like …. say what?

Don’t worry, she will grow out of it.

What part of THIS. IS. NOT. AN. ALLERGY. Did you not understand? Autoimmune diseases are like very special gifts, they are for life.

Cant you just scrape the filling out of the bread and eat that? / PEEL the KFC chicken? /Pick the croutons out / Scrape the breading off?

Yeah, sure, lets sprinkle nuts all over this donut and then scrape it off a bit with a spoon and feed it to your nut allergy anaphylactic kid! No? Didn’t think so.

Oh gluten? Thats only in pasta and bread, not that hard.

hahahahahahaha. Thats is all. Really, hahahahaha.

Its SOUP, there is no gluten in SOUP!!

SO glad you told me, so AWESOME to have met an expert on this. THANKS! Assume you checked the thickener and the stock cubes? Oh yes, those can have gluten too. Never mind the small bits of pasta / croutons / barley / whatever floating in it…..

If I threw a crumb in her mouth what would happen?

You may very well end up dead thats what would happen

I got this for me and the kids – I couldn’t find anything you/she/he could eat

Yes, because picking up some sliced melon, bananas, fruit, plain yogurt, berries, cheese slices or anything cleverly labelled (!!) gluten free would have been too difficult. I understand.

You really are fussy aren’t you.

Yes, extra specially fussy in a very special kind of way 🙂

But, she’s not going to EAT glue / playdough / waterpaint 

No, but she’s 5. How many 5 year olds do you know who are impeccably clean after playing with stuff like that? Actually, scrap that. YES, she might eat it.

Might have to edit this one and add more later. Thanks to the awesome gluten free people in the Facebook group called Gluten Free and Me (not mine) for helping some with some of theirs. The lady who was told she was only Celiac because of her pregnancy must have been the best one. Or the gluten evaporates one. Heck, some of the stuff some of these people have been told, often by close friends and relatives ASTOUND me. Surely people who know someone with Celiac would take their time to do a quick google on actual facts?

I actually meant to put proper answers explaining very carefully, until I realised just how much bottled up gluten rage I held inside! Go ahead, add yours in the comments below or on my facebook page!

For those of you with a sense of humour failure, this kind of stuff is the stuff families like ours hears on an almost daily basis, while we smile sweetly and answer politely for the 5th time at the same dinner party, these are the answers in our heads. Or at least mine.

-Linda

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An unwilling homeschooler

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Yup. Not only am I one of those mums *insert eyeroll*, I am now also about to be one of THOSE mums *insert even bigger eyeroll*.

We are back from the lung hospital. We have the results from the immunologists. And guess what, there is nothing wrong with with our kid! (Apart from recurring pneumonias with low oxygen levels).

PCD, CF, back normal, no growths or foreign objects in the lung. No asthma although she may be heading that way. A couple of new allergies diagnosed. All immune levels are ok, some a bit low, but within the accepted range, some signs of autoimmune activity that needs to be followed up but thats it.

The doctors agree that its not normal to get so many severe pneumonias, and they agree the low oxygen levels that go along with it are also not normal, all our specialists were so sure they would find something, either in the lung or with her immune system, and I know I shouldn’t be disappointed, because obviously its great news that she’s ok and its not one of the big things, but I cant help but think that this isn’t over at all….

Oh, and there is a plan. Her pulmonologist and immunologist agree that she needs “time off”. A year off school I asked, and the reply was; “probably more like 2”.

I should be happy about this as well as my gut instinct has been telling me for a good year or two now to take her out of school so she can rest, but again, I feel cheated somehow, I wanted a better answer, an answer where we could actually DO something.

I know, it makes sense to have her rest and not be near other kids for a couple of years, if one pneumonia takes 6-12 months to get over she really does have her work cut out for her. But a diagnosis of ‘lots of bad luck and vicious circle and immune system that needs to mature etc’ just doesn’t sound very much like a real diagnosis to me.

One of her antibodies to pneumonia was a little low, but not so much, her overall igg is a bit on the low side but acceptable, the igg1 a bit on the low side but acceptable. FUCK acceptable. Acceptable doesn’t get us anywhere. What if we wait two years and then after that there is no change?

Now back on to the steroids also, yeah, the ones that make her not grow and suffer from bone pain. The ones that make her cry walking down the stairs, the ones that when she came off them she rapidly grew 3 cm!

Im so so tired.

On the bright side we have had doctors confirm she shouldn’t be in school and the paper work to support it. On the not so bright side I need to come up with a home schooling plan in a country where you are only allowed to home school in extreme cases and if so then it must be in Polish.

Anyway. Bla bla. Still sort of processing all this, and Im feeling positive, ish, but also not so much.

Deep breaths and all that.

-Linda

Playdough Contamination.

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I had a discussion with a lady who runs a big (gluten free) blog here in Poland about Playdough. She said its ok for her (celiac) kids to play with as long as they wash after, Ive always said no way Jose. Playdough residue sticks to your hands, under your nails and gets everywhere. Any classroom with gluten free kids should (in my opinion) be a gluten playdough free zone. If other kids play with it little bits will get everywhere, on the floor, on their shoes etc, the risk of contamination is just to large, and one that is easy enough to eliminate.

Our school uses playdough, but Celiac kids class all use gluten free playdough. I bought enough for the whole class and I have extra at home that can be brought in any time. You can also easily make it, but Im lazy 😉

We are on week 3 now after contamination. Something went wrong in art class and celiac kid got given a piece of playdough to stick something on to something with. She wiped her hands after, but with play dough, wiping is just not enough. There should be nail brushing and plenty of hot soapy water all supervised by an adult and even then its just not a great idea as residue may still remain on the hands or in the environment.

I picked her up that day and her tummy was huge. Imagine a 5 year old girl about 7 months pregnant. Thats how her tummy looked.  Of course at that point I didn’t know why, I just knew there had been contamination. I also knew it must have been little, because she was not in extreme pain.

Celiac kid was home then for a couple of days, I cant actually remember why, but for the following two weeks she had diarrhea and also a few occasions of vomiting. Horrendous stomach cramps, mainly in the evenings or after eating.  Of course all this has its own issues, fear of using the toilet, having small accidents in school and being embarrassed, ashamed and insecure. Fear of eating because after eating there is more stomach pain. Tearful, cranky, very very tired etc. I obviously don’t know all the symptoms, because many of them she would be to young to explain to me.

It took a week or so to get to the bottom of what contaminated her. I am not angry that it happened, its all a learning curve, for all of us. The art teacher had not received the same paper work as the other teachers and was not aware playdough had gluten in it. I blame myself for this, although some may argue its the schools job. I say its all our jobs. And now me, the teacher and support staff will be sure to remind / point out an extra time that playdough has gluten and where the gluten free one is kept. Celiac kid herself is also old enough to ask and has been told that asking is a good idea.

My point here is, that gluten playdough is not really safe. There is a risk involved. If you have Celiac kids, please do not allow them to use gluten playdough in school. Make gluten free one (I have a ton of pins on pinterest), or buy it. Below is a gluten free brand widely available in many countries.

So we continue on with week 3 after contamination, we continue being dairy free while she heals, and give extra cuddles and probiotics. For some playdough, all this, is definitely not worth it.

Remember also, that not everyone will have a clear reaction, damage on the inside still occurs! 

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-Linda

Blood tests, ambulance rides and extra oxygen.

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Well, I guess I knew it already as I was writing my last blog post…. we got to the clinic and they wanted to call an ambulance to send us to hospital straight away (in my opinion a slight over reaction on their part). I refused the ambulance (why scare the children more then needed?) and drove home to grab bags and iPads and food. Dropped son at neighbours and went to hospital where we were admitted.

This latest hospital stay was actually the smoothest one yet, maybe because I am getting so used to them? Or because I know exactly what we need? I actually have a bag thats always partly packed in a wardrobe, likewise we have a small bag partly packed for son. After this latest stay the bags will be improved further, but they sure do help a lot, especially if someone else has to go to my house to get stuff.

The hospital stay in itself was eventful…. Every test they could think of and then some has been done. It seems Celiac kids haemoglobin is high, her body responding to oxygen levels that are too low and trying to adjust them….. clever on her body’s part, but not good for her. The pneumonia was also a bit of a mystery, a strange kind, very severe, not the kind of pneumonia ‘normal’ people get. Well, my daughter is anything BUT normal, haha (that haha is mildly hysterical by the way). Its almost as if she enjoys playing games with science, because her test results are always a bit strange and baffling.

We were sent to a different hospital to be tested for Cystic Fibrosis. Its a sweat test. Above 60 is positive and below is negative, but a negative should really be below 30 or it needs to be investigated further. Celiac kids result was 49.

I am calm. Hubby is stressed. And I remain calm. Sortof. Celiac kid is super exited because the trip to the other hospital was by ambulance, and the super cute ambulance guy gave her both lights and sirens the whole way after she asked to hear them! Haven’t seen a smile like that in ages!

Normal people don’t GET this many pneumonias. Is it still her RSV as a baby giving us crap or is it the celiac and the crappy immune system being silly? At this point I think we need more answers, because if my counting isnt completely off we are now at something like 11 pneumonias, a handful of bhronciolitis and countless upper respiratory illnesses.

I actually think we struck gold at this latest hospital visit, because they are as concerned as I am, and I didn’t have to be assertive (read bitchy) in the slightest to get some action.

We were admitted on monday evening and they finally let us go Saturday evening after some straight talking to from hubby. They just cant feed a celiac kid in a hospital here, and if you really want someone to get better they need proper food! Thankfully her oxygen levels weren’t super low so she was only on 1-2 litres until Friday then she managed ok without.

We have been back to the hospital daily since. She is having her last antibiotics today. Next week we go to a mountain town that has a specialist hospital to be admitted for a few days, there they will check her lungs properly and hopefully before they let us go we will know more definitive answers as to why she keeps getting this sick.

We did the Cystic Fibrosis genetic test too, Im guessing they will repeat the sweat test next week also. The genetic test only checks for the more common genetic mutations but around 90% of Cystic Fibrosis should show up in this. To be honest I don’t really trust the sweat test anyway because I’m so used to my daughter having results that aren’t ‘normal’.

I wasn’t really going to write about this at all, but then I figured that its probably good to write about it, because no matter what the results are eventually, our story can probably help others. Much of the information about cystic fibrosis is pretty scary, but to be honest, if she does have it, then we already lived with it for 5 years anyway, so putting a name to it (whatever it may be) can only be a good thing so that we can help her. We are obviously hoping its something else, but lets see.

Trying to explain now why we are going to hospital without being particularly sick has been harder. Then the question ‘will they poke me?’, which breaks my heart, because obviously they will but I so don’t want to tell her this and make her cry! By poke, she means needles. She is still bruised black and blue on her arms from the IV going in last week, her veins kept bursting and it was only attempt 5 that was ok!

Anyway, thats whats going on with us. Hopefully you are all having a better month then us.

I have decided to stay as positive as I can, feed the kids the best and most nourishing food I can think of and just breathe deeply as much as I can. Me losing the plot is hardly going to help.

– Linda

Eggs and dogs and underwear.

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Its been a while. Ive been feeling very uninspired and lazy. Frankly, its been to hot to THINK. We have had days with 33 degrees, which is not so bad actually compared to Dubai, but in Dubai there is AC everywhere! Here, the closest I get to AC is standing in front of the open fridge looking for snacks. Me and the kids have all taken to wearing just underwear in the house.

(Funny that, apparently Polish people do a fair bit of walking around in just their underwear, lol,  Polish Housewifes facebook post , my friend Brooke has a whole blog post coming on the subject )

We had a ton of new medications given to us for Celiac kid, we are getting closer to answers. Seems her lungs, the bronchii (bhroncolii?) bits, are constantly inflamed, when it flares up and gets even a tiny bit worse, pneumonia or upper respiratory infection follows. We also now know that her bone pain is highly likely to be linked to her over use of steroids. Dr has her on a new medication and we are hoping to slowly faze out her other two steroids.

Her allergy test results are also back, and they say dogs and eggs. Both a total shock. Dogs, because although we have dogs, our dogs dont have the dander normal dogs have, they are a non shedding breed and most people with pet allergies tolerate them very well. Doctor also seems to think its wrong as nothing showed on dust, yet she reacts strongly to any amount of dust. More testing needed in that department. But EGG! It all makes sense once I start reading…. egg allergy can cause wheezing, respiratory issues etc etc etc. So on the one hand Im numb and a tad devastated that she can no longer eat eggs, but on the other hand, I feel a little like we just won the lottery, because maybe, just maybe this is the answer we needed, and maybe, just maybe, her lungs will finally be able to improve!

We have also consulted a naturopath, who also happens to be one of the ladies I met with just when I started GlutenFree UAE, her daughter is gluten intolerant. She gave us some great advice and I hope to share all this with Celiac kids Dr – who seems very open minded – and hopefully we can all work together to help make this awesome shining star of a girl feel a bit better.

Celiac Kid’s comment when we told her about the eggs was ‘but mum, thats so lucky, I don’t even like eggs!’ , its true, if she knows something has egg in it she wont eat it, the only hard blow here is ice cream and pancakes. Awesome kid that she is she is already getting stuff out of the drawer asking me if she can still eat them, ‘has it got egg inside mumma?’.

We still haven’t been on our holiday, but should be off soon, then school starts with all the work that comes along for us gluten free mums, new classroom, teacher etc. I never shared my school letter last year, I will be sure to do so this year. I edit it yearly to suit our needs so have a ton of versions already 🙂

Off to make glutenfree – eggfree cheese rolls now 🙂

Have a fab day!

Linda

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Please note, its the egg thats sad, not us! 😉

My Celiac Awareness Post

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May is for Celiac Awareness.

In the UK Celiac is spelled Coeliac, same in Australia and New Zealand. In the UK they have Celiac Awareness week, rather then the full month they do in the US. Its in May, so for me, May is for Celiac.

Celiac Awareness is not really needed on a blog like mine, because to me, Celiac Awareness is about reaching those who are NOT here on this blog. Those mums endlessly walking their screaming (undiagnosed children), those dads who scratch their elbows with a knife because their (undiagnosed) DH is itching so bad. The women who have been trying for years to become pregnant. Those who struggle daily with stomach issues and put it down to IBS or stress (yeah… could be undiagnosed celiac).

Of course, not all people with stress tummy or an itch or whathave you have undiagnosed Celiac disease. But the numbers speak for themselves, in Europe something like 1 in 100 (slightly less or more in some countries) have Celiac, in The US numbers used to be 1 in 133, thats now thought to be incorrect and latest figures show similar to European figures. And how many are diagnosed? Hardly any. Estimates say that somewhere around 97% of Celiacs in the US today could be undiagnosed. In Europe they talk about numbers around 80% (varies from country to country).

So that pretty much means most of us know at least 1 undiagnosed Celiac. Maybe they have classic and visible symptoms, or maybe they are walking around with nothing other then slight anaemia or feeling a bit depressed. Thats the thing with Celiac. You can have diarrhoea or be constipated, you can gain weight or loose weight, you can have aching bones or depression. There are 300 symptoms to date associated with Celiac disease, and a sufferer can suffer only one symptom, or 50!

The people who need to know all this are not Celiacs, the people that need to know all this are people who may never have heard of Celiac!

Then the other part of Celiac awareness, the one that explains to the world that Celiac is an autoimmune disease, not a fad. Not an allergy.  The one that explains what gluten actually is. A protein, found in wheat, rye and barley and all products thereof. The one that talks about cross contamination, and explains that one breadcrumb is enough to hurt someone with Celiac disease. The one that explains that although we may not suffer anaphylaxis, there is long term damage to our systems every time we are exposed to gluten, and a Celiac who keeps being exposed to gluten can suffer other life threatening diseases such as cancer.

Eating just a little bit of gluten, is not an option. Some may not react to ‘just a little’, but the long term damage on the inside still occurs.

I am asking you all a favour today. Help us spread this awareness. Help us – the Celiac community – to spread this awareness as far as we can. Please share this post, or one of the many other Celiac awareness articles out there. If you see it on twitter or Facebook, like it, tweet it, share it. Help take the awareness further.

I also have a challenge for the bloggers out there, the non gluten free bloggers. Please, if you can find the time, write a post about Celiac for Celiac Awareness Month. YOU can reach exactly the person who needs to read it. I already gave this challenge to my small expat bloggers Europe group, and two lovely ladies accepted the challenge. I will be sharing their posts next week, along with yours if you accept 🙂

MAY! Is for celiac Awareness. May is when my own little Celiac was born. How oddly appropriate 🙂

Linda

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3 years since we were diagnosed…..

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I cant quiet believe its been three years…. I don’t remember the exact date, I remember the hospital stays, the dehydration, the coming home after, the vomiting, the diarrhoea, the wasting away, the screaming. I remember the heartache, I remember being absolutely numb. I remember not functioning for any other purpose then to hold my so obviously miserable daughter. I was at the end of my tether…. she was to young to tell me where she was. We were all suffering on a daily basis. Our life was awful. I remember the April school holiday, searching every shop in Dubai for gluten free foods, I remember learning to bake.

Its been 3 years since we got our lives back. Its been 3 years, since we were able to finally, on some level, relax.

Our life is talked about in terms of ‘before diagnosis’, and ‘after diagnosis’. Before diagnosis it was almost like we were somehow paralysed. There were days when I would walk with her for hours, and if I stopped, at any point, she would scream. So I would do circles in the mall, never stopping, just walking. I say WE were diagnosed, because Celiac disease affected all of us so very much, and still does. This is our life, as a family we are in this together, and we are a Celiac family.

Its been 3 years, since we got our lives back.

The road is still not always easy, but we do our best. Incidents of contamination are far and few between as we have all learned to avoid it best as we can. The battle now is with weak lungs and a crappy immune system that took a hard hit from a delayed diagnosis.

The battle now, is to help teach the world about Celiac disease.

Its been 3 years, and it feels like forever.

I cant remember us being a ‘normal family’ before diagnosis. Sure, we had our good days, and bad, but its only really since diagnosis that life has made sense. If someone is going to scream and cry fore a whole day, then its really better and easier for those around if they know why.

Its been 3 years, and we just keep smiling 🙂

-Linda

The question finally came….

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‘Mummy, when Im a grown up, will I be able to eat gluten?’

I knew it would probably come, one day, but yet when it did I wasn’t ready. I didn’t expect to feel so sad, I didn’t expect to feel so bloody hurt, for her!

We have had many questions, and statements, and she’s so smart, so clever, she ‘gets it’. ‘Is autinka Celiac like me mummy?’, ‘When big brother was a baby he could eat gluten right?’, ‘I know big brother can eat gluten, just not at home, because we dont want gluten in our house‘. Etc etc etc. So why then did the question surprise me? And why on earth did I feel so sad…?

I don’t miss my relationship with gluten, I haven’t touched it for almost as long as she has, the last time I had it I felt awful, so its no big deal for me. But Im an adult. I got to grow up eating what I wanted. And although she is so amazingly cool with everything right now, I am in mourning for the things she wont ever get to do. She wont get to do the spontaneous pizza at midnight after the cinema, the kebab after the pub, the walking past a greggs the baker and buying a bag of donut holes and scoffing them all in one go, instead, she has to grow up and be careful, always prepared, plan everything, and although we have a great life and we are OK…. its obviously not going to be easy for her growing up, being different in your pre teens and teens is what we all strived NOT to be.

I hope by hanging out with as many Celiacs as we do that she can continue to feel that what she has is as normal as freckles or a wonky toe. I really really hope so. But deep inside I am so sad for her 😦

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Gluten free food in Europe is not always gluten free…..

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We learned to be gluten free in Dubai, we learned to be gluten free in a place where there was no bread available to buy in the shops (at that time), hardly any biscuits or crackers or cereals available at all, and what WAS available (back then) was gluten free, gluten free as in as close to 0 gluten as you can get, in european terms, ‘naturally gluten free’. The sucky thing is, many countries now produce gluten free foods using wheat starch. Yeah, I know, makes zero sense. Wheat = gluten, so why the hell are you putting it in my gluten free food? I don’t care how hydrolysed and processed it is, to me its still gluten, and you know what, it IS! Its STILL gluten, just happens to be below 20 ppm. But think about it… if its 15 ppm, and you eat it every day, and then eat crackers and bread and pasta and a few other things then holy CRAP are you really eating gluten free at all?

In our case the choice is made easy, because our celiac kiddo reacts to wheat starch, she reacts to traces, she reacts to things that are not as close to 0 gluten as you can get, and why shouldn’t she? She has CELIAC!? All those people who eat the pretend gluten free foods and feel great, I wonder how they would feel if they ate only 0 gluten free food….?

Anyway, back to why they put this gluten free wheat starch in food. Heres the deal. Gluten means GLUE in latin, and thats how it works, when you bake or cook with gluten, gluten is what binds things together, the glue that makes your bread not fall apart (like a gluten free bread might..). Wheat, is CHEAP. So for manufacturers it makes sense to use GLUTEN in our gluten free foods, because the alternatives are far more expensive. But who is paying the price… really? Will research in a few years come far enough to ban wheat starch in gluten free foods? I hope so!

Please note, there is wheat starch and there is gluten free wheat starch, so if you are a celiac wheat starch eater, make sure you ONLY eat the one that is labelled as gluten free, its not 0 gluten, but it is at least below 20ppm. 

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