Diagnosed with Type 1 AND NOW ALSO Coeliac Disease!

[New2T1D]

So my son had his T1D diagnosis 9 months ago. Routine testing for other autoimmune conditions revealed elevated Coeliac antibodies. A second blood test 6 months later showed lower, but nonetheless elevated levels. A recent gut biopsy looked normal to the naked eye. No symptoms were present, so we were optimistic of a false positive on the blood tests. The 4 gut biopsies however showed the beginnings of microscopic gut damage. The good news: a very early diagnosis. the bad news: another diagnosis to deal with. This was 2 weeks ago.

So I'm posting here for some help please. What do we do? Is it cold turkey or a gradual thing, to remove gluten? We have tried all kinds of bread and it's all disgusting (and expensive). Any advice on where to find nice basics alternatives: bread, pasta, etc? And generally where to buy nice foods?

Do we need separate cooking utensils, breadboard and a new toaster?

What is the benefit of giving up gluten when there are no physical symptoms? My sister had symptoms all her life and only got diagnosed aged 45 and she gave up gluten then. After a few years her gut had recovered. Why can he not wait until he's older and do the same as she did? What are the consequences?

With diabetes, it was 100% obvious what the benefit of changing one's diet was, but this has me slightly unconvinced. Probably a mixture of denial and lack of knowledge.....Any information/ pointers welcome. Thanks.

 

[SockFiddler]

Hey there, @New2T1D - sorry to hear of your difficulties.

I have neither T1 nor Coeliac's but I have a couple of coeliac friends who are both avid fans of the following site:

https://www.coeliac.org.uk/gluten-free-diet-and-lifestyle/

From what I know (and I'm certain others will be along with more knowledge than I), the advantage of an early diagnosis is minimal gut damage and a reduction in serious long-term complications. If his gut is undamaged, he will be able to digest and absorb nutrients normally. We only partly digest our food in our stomachs - mostly we just churn it up and break it into smaller bits that then get digested in our guts, by our lovely flora there. Vitamins, minerals, proteins (as amino acids) are all absorbed through the intestines, so if there's any damage, their efficiency will be (over time as damage increases) compromised.

https://www.niddk.nih.gov/health-information/digestive-diseases/digestive-system-how-it-works

http://www.nhs.uk/Conditions/Coeliac-disease/Pages/Complications.aspx

As for what to eat, where and how, I've really got nothing for you, though I can tell you that one of my friends is an ace gluten-free baker and both my gluten-free friends enjoy happy, healthy lives uncompromised by their diseases. So have hope - it'll be a lot to get your head around, but you and your family will get the hang of this in no time.

Good luck!

Edit: To add UK-NHS info link.

 

[Indy51]

The is no such think as "a little bit coeliac". The only solution for a coeliac is complete avoidance of gluten.

The long term consequences of exposure to gluten for coeliacs go way beyond just gut symptoms. It is absolutely not a diagnosis to be taken lightly.

It's actually quite common to have clusters of autoimmune disease, with Type 1 and coeliac combination being one of the most common.

I'll tag @Engineer88 as I know she has both. I'd also suggest you check out the Gluten Free section of the forum: http://www.diabetes.co.uk/forum/category/gluten-free-forum.72/

I'd highly recommend the Gluten Summit for anyone dealing with this diagnosis:
http://theglutensummit.com/

 

[Indy51]

Do we need separate cooking utensils, breadboard and a new toaster?

Sorry, meant to address this - yes, you should isolate the utensils you use for your son from others used in the house.

Personally, in your situation I'd make the whole house a gluten-free zone. You might find other people in the family will benefit - especially since autoimmune conditions tend to have a genetic basis and other family members could also have silent issues - not all coeliacs even get gut symptoms. Neurological symptoms are even more common than gut based ones.

 

[donnellysdogs]

Agree with utensil swaps totally. Its very hard to keep separate.. I too would recommend whole household going gluten free.
I'm not just gluten free but all flours, pastameat etc free. Flour and certain things like pasta do not travel well in my stomach.

Do I miss it? At home, no. Going to shops was hell but then I realised 1) I was leaner than majority with trollies stacked with cererals etc 2) 5 seconds after going up a useless aisle, I had forgotten, 3) I had extra money to spend on myself!! Organic veg and boots(lol!!) and a dog!!

Once coelic diagnosis, it is for life. My friend has it and I always make her a gorgeous gluten free biscuit based cheesecake and my kitchen hasnt had gluten or any flours in it so I am confident she will not be ill.

I concentrate on good organic veg, crustless quiche, and some fruits.

Your son is young and it is really parents, as in all cases that give children their initial learning with foods. To me, embracing the challenge with the whole family will make him feel less different when older. He will realise if you are eating different foods, even at a young age.

I'll never forget a friend of mine childs 1st words for food was chocolate...... I was totally gobsmacked.. they laughed but I had to hide my horror.... the child does actually eat everything but I admit I was horrified.

It is a challenge but it is do-able. Honest.

Make sure you are claiming PIP by the way or what ever benefit it is for children.. you need to give extra care to your child and you alshould claim for it.

 

[New2T1D]

Hey there, @New2T1D - sorry to hear of your difficulties.

I have neither T1 nor Coeliac's but I have a couple of coeliac friends who are both avid fans of the following site:

https://www.coeliac.org.uk/gluten-free-diet-and-lifestyle/

From what I know (and I'm certain others will be along with more knowledge than I), the advantage of an early diagnosis is minimal gut damage and a reduction in serious long-term complications. If his gut is undamaged, he will be able to digest and absorb nutrients normally. We only partly digest our food in our stomachs - mostly we just churn it up and break it into smaller bits that then get digested in our guts, by our lovely flora there. Vitamins, minerals, proteins (as amino acids) are all absorbed through the intestines, so if there's any damage, their efficiency will be (over time as damage increases) compromised.

https://www.niddk.nih.gov/health-information/digestive-diseases/digestive-system-how-it-works

http://www.nhs.uk/Conditions/Coeliac-disease/Pages/Complications.aspx

As for what to eat, where and how, I've really got nothing for you, though I can tell you that one of my friends is an ace gluten-free baker and both my gluten-free friends enjoy happy, healthy lives uncompromised by their diseases. So have hope - it'll be a lot to get your head around, but you and your family will get the hang of this in no time.

Good luck!

Edit: To add UK-NHS info link.

Thank you, really kind of you to reply.

 

[New2T1D]

Agree with utensil swaps totally. Its very hard to keep separate.. I too would recommend whole household going gluten free.
I'm not just gluten free but all flours, pastameat etc free. Flour and certain things like pasta do not travel well in my stomach.

Do I miss it? At home, no. Going to shops was hell but then I realised 1) I was leaner than majority with trollies stacked with cererals etc 2) 5 seconds after going up a useless aisle, I had forgotten, 3) I had extra money to spend on myself!! Organic veg and boots(lol!!) and a dog!!

Once coelic diagnosis, it is for life. My friend has it and I always make her a gorgeous gluten free biscuit based cheesecake and my kitchen hasnt had gluten or any flours in it so I am confident she will not be ill.

I concentrate on good organic veg, crustless quiche, and some fruits.

Your son is young and it is really parents, as in all cases that give children their initial learning with foods. To me, embracing the challenge with the whole family will make him feel less different when older. He will realise if you are eating different foods, even at a young age.

I'll never forget a friend of mine childs 1st words for food was chocolate...... I was totally gobsmacked.. they laughed but I had to hide my horror.... the child does actually eat everything but I admit I was horrified.

It is a challenge but it is do-able. Honest.

Make sure you are claiming PIP by the way or what ever benefit it is for children.. you need to give extra care to your child and you alshould claim for it.

Thanks so much for your kind response. We got turned down for PIP. Apparently it's very difficult for people with T1 to get it. As he turned 16, he's not automatically entitled. Had he been under 16, he would have automatically got it to age 18 - what's that about? Our nursing team even wrote supporting his case, as he hypo'd several times daily at the very start. We had a horrible experience too, with my son leaving close to tears, having been interviewed by someone who had NO understanding of diabetes, who asked him ridiculous questions and had no clue what the difference between a hyper and a hypo was. Just can't face going there again.

 

[New2T1D]

Agree with utensil swaps totally. Its very hard to keep separate.. I too would recommend whole household going gluten free.
I'm not just gluten free but all flours, pastameat etc free. Flour and certain things like pasta do not travel well in my stomach.

Do I miss it? At home, no. Going to shops was hell but then I realised 1) I was leaner than majority with trollies stacked with cererals etc 2) 5 seconds after going up a useless aisle, I had forgotten, 3) I had extra money to spend on myself!! Organic veg and boots(lol!!) and a dog!!

Once coelic diagnosis, it is for life. My friend has it and I always make her a gorgeous gluten free biscuit based cheesecake and my kitchen hasnt had gluten or any flours in it so I am confident she will not be ill.

I concentrate on good organic veg, crustless quiche, and some fruits.

Your son is young and it is really parents, as in all cases that give children their initial learning with foods. To me, embracing the challenge with the whole family will make him feel less different when older. He will realise if you are eating different foods, even at a young age.

I'll never forget a friend of mine childs 1st words for food was chocolate...... I was totally gobsmacked.. they laughed but I had to hide my horror.... the child does actually eat everything but I admit I was horrified.

It is a challenge but it is do-able. Honest.

Make sure you are claiming PIP by the way or what ever benefit it is for children.. you need to give extra care to your child and you alshould claim for it.

Thank you. My son has always been a fussy eater and didn't eat chocolate until he was 8 years old. His choice mainly. He actually didn't like it or sweet things. A year before his T1D diagnosis he craved sweet things all the time and couldn't get enough sugar. We didn't know what was going on! (We do now!) He ate about 7 foods only, until he was about age 7 too. He's allergic to nuts, kiwi fruit and hates even the smell of eggs (though not allergic) so food is going to be really challenging. Many of the gluten free flour substitutes are nut-based. I want to go gluten free too, but my husband loves his pasta for his cycling. He wont easily give that up. My sister is very casual about her condition and doesn't separate anything at home - though she is "gluten free" in what she eats. She says she falls off the wagon sometimes too. Maybe not the best role model. She's given my husband a false sense of security, unfortunately, as have I, because I told him her views and practices.

 

[donnellysdogs]

Thanks so much for your kind response. We got turned down for PIP. Apparently it's very difficult for people with T1 to get it. As he turned 16, he's not automatically entitled. Had he been under 16, he would have automatically got it to age 18 - what's that about? Our nursing team even wrote supporting his case, as he hypo'd several times daily at the very start. We had a horrible experience too, with my son leaving close to tears, having been interviewed by someone who had NO understanding of diabetes, who asked him ridiculous questions and had no clue what the difference between a hyper and a hypo was. Just can't face going there again.

I dont understand the 16/18 year old limits now. They make children stay on later in education and yet the parental need disappears? Hardly!!

Yes, the assessors are not always knowledgeable for the needs and some reports they give can be dire. Understand your not wanting to go thru again. Totally.

Jyst worth mentioning, needed to check as some parents not know about it at all. They think its means tested etc...

Its tough, but you can get through things.. me, I think now that struggles make oneself stronger in ways we wouldnt have been before... its just bloomin hard at times to realise it thought. Sending love...

 

[New2T1D]

Sorry, meant to address this - yes, you should isolate the utensils you use for your son from others used in the house.

Personally, in your situation I'd make the whole house a gluten-free zone. You might find other people in the family will benefit - especially since autoimmune conditions tend to have a genetic basis and other family members could also have silent issues - not all coeliacs even get gut symptoms. Neurological symptoms are even more common than gut based ones.

Thanks for this, really appreciated. I've tested myself twice using online kits. I might go and get it done at the docs actually. And husband too. Lots of autoimmune issues in both our families, but no diabetes, except our son. We'd probably feel better without gluten.

 

[New2T1D]

I dont understand the 16/18 year old limits now. They make children stay on later in education and yet the parental need disappears? Hardly!!

Yes, the assessors are not always knowledgeable for the needs and some reports they give can be dire. Understand your not wanting to go thru again. Totally.

Jyst worth mentioning, needed to check as some parents not know about it at all. They think its means tested etc...

Its tough, but you can get through things.. me, I think now that struggles make oneself stronger in ways we wouldnt have been before... its just bloomin hard at times to realise it thought. Sending love...

You're so kind. Thank you

 

[Engineer88]

So my son had his T1D diagnosis 9 months ago. Routine testing for other autoimmune conditions revealed elevated Coeliac antibodies. A second blood test 6 months later showed lower, but nonetheless elevated levels. A recent gut biopsy looked normal to the naked eye. No symptoms were present, so we were optimistic of a false positive on the blood tests. The 4 gut biopsies however showed the beginnings of microscopic gut damage. The good news: a very early diagnosis. the bad news: another diagnosis to deal with. This was 2 weeks ago.

So I'm posting here for some help please. What do we do? Is it cold turkey or a gradual thing, to remove gluten? We have tried all kinds of bread and it's all disgusting (and expensive). Any advice on where to find nice basics alternatives: bread, pasta, etc? And generally where to buy nice foods?

Do we need separate cooking utensils, breadboard and a new toaster?

What is the benefit of giving up gluten when there are no physical symptoms? My sister had symptoms all her life and only got diagnosed aged 45 and she gave up gluten then. After a few years her gut had recovered. Why can he not wait until he's older and do the same as she did? What are the consequences?

With diabetes, it was 100% obvious what the benefit of changing one's diet was, but this has me slightly unconvinced. Probably a mixture of denial and lack of knowledge.....Any information/ pointers welcome. Thanks.

Hey how are you? I saw @Indy51 's tag, thanks Indy.

I've been diabetic 27 years, coeliac for 14 eating gluten free completely for 8. I wanted to be honest because I didn't do gluten free until it impacted my daily life and diabetes by being unable to absorb carbs. I would strongly suggest you don't do this, the hypos and uneven levels were horrendous. Not to mention the threat being made that I would loose my drivers licence if I didn't go gluten free to fix the hypos.

What bread have you tried? The quality varies a lot. Having moved in with my partner this year we have turned the majority of our house gluten free that's two adults and two (fussy) kids.

 

[dancer]

I've been diagnosed coeliac for about 18 months. I gave myself a fortnight to eat my favourite gluten foods, and then went totally gluten free. I agree, the bread is disgusting. The best ones I've found are any Marks &Spencer GF loaves (the new sourdough bread is good).

I'm not a baker, so haven't tried baking my own GF bread, cakes or pastry. My local branch of Coeliac UK organises monthly meetings, including a baking demonstration. You might be lucky enough to have a similar local group.

I have had appointments with 3 different coeliac dieticians, who all seemed to have different ideas and, more or less, disagreed with each other. The last one I saw has a coeliac mother and told me that large companies put "may contain wheat" on the packaging, as a legal safeguard, and if there's no gluten in the ingredients, the product will be ok for me to eat. This meant I could go back to using the really handy fun size packs of Bassetts Jelly Babies for hypo treatments.

The Free From section of any supermarket is where you'll find GF pasta etc. I didn't notice a difference in taste but my husband says he noticed. ( Maybe I used more parmesan cheese than he did!)
Trial and error is how you find nice GF food. I found Asda GF sausages to be OK but found Sainsbury's to be too sweet/herby, but you might think differently.

It will be difficult for your son. Sometimes it's not easy to find gluten free lunch away from home but he will get used to it. One thing to remember is that when he does go totally GF, and has been for some time, he will react badly to gluten, if he eats something he shouldn't ( by mistake or otherwise).

 

[TheBigNewt]

My niece developed gluten-sensitive enteropathy when she was pretty young (about 7). She developed full blown malabsorbtion, diarrhea, muscle wasting, the whole bit. Funny thing is she's a twin and my sister kicked herself for not recognizing it before it was diagnosed by the GI doctor from the doorway in about 10 seconds lol. She's been fine ever since, normal lifestyle all the way. She just got married at age 27. She isn't diabetic though. I think she subs corn for wheat carbs mostly. What they get is disappearance of the microvilli in the early portions of the small intestine. Those little micro "fingers" increase the surface area of the organ tremendoulsly and without them absorbtion of foods goes bye bye, especially fats and you get steatorrhea (fats in stool). But once you quit gluten the whole thing goes back to normal. So if your son still has the microvilli on the intestinal biopsy it looks like he doesn't have the disease yet so maybe he doesn't have to go cold turkey. I don't know how specific that antibody is for developing the full blown enteropathy syndrome.

 

[SockFiddler]

Apparently you can make some pretty decent gf bread in a bread machine, which also allows you to add all sorts of interesting stuff. Since my T2 diagnosis I've had to stop stealing my friend's black olive, garlic and sun dried tomato bread... the only carb I miss now!

Sent from my SM-G930F using Diabetes.co.uk Forum mobile app

 

[DCUKMod]

@New2T1D - As someone without a Coeliac diagnosis, but on a medically instructed GF lifestyle, I'd ask you to consider that although your son may not have had identifiable symptoms, he may have low grade symptoms of his condition he isn't recognising, due to their low grade appearance.

My Coeliac profile was "normal"/"inconclusive", although this was an expected result, due to my low carb lifestyle. Although instructed by my Endo to go GF, I was sceptical, but accepted his strong recommendation to adopt the lifestyle on the basis that I shouldn't be seeing him, if I wasn't going to heed his guidance.

Several weeks in, I realised I must have tripped up, because by-Jimminy, I had symptoms (crushing fatigue, followed by bloating and acute tummy discomfort, followed by a significant period tethered close to the sanitary-ware. Sorry. TMI! My conclusion was that the GF lifestyle was suiting me.

These days I am very happy to commit to the GF lifestyle, because those "off" days of vague tummy issues/bloatedness and additional bathroom time are diminished, and I'm well.

I don't buy GF products. In fact my only 2 branded GF products are: Soy Sauce for stir fries, and Worcester Sauce, just because it's nice, and I saw it when considering a recipe recently. Otherwise, I just eat decent whole foods.

What are your son's views on this?

 

[Kristin251]

I too was advised BT endo to stay gf. Though Corn anything I sworse for my tummy , gluten shows up the next day as sad, tears and fatigue.

No gluten for me. Or many of its cross reactive derivatives. The body preserves them the same as gluten as th eprotein molecules are the same.

GoogLe cross reactive gluten foods. Amazing. I do react to many. Not as bad but still a reaction. Corn anything is horrible.

My daughter nor I are celiac but if she gets one crumb out of her friends toaster she's in severe pain. She's far more sensative than me but as stated above, gluten causes all kinds of issues that have nothing to do with the stomach.

 

[Indy51]

I too was advised BT endo to stay gf. Though Corn anything I sworse for my tummy , gluten shows up the next day as sad, tears and fatigue.

No gluten for me. Or many of its cross reactive derivatives. The body preserves them the same as gluten as th eprotein molecules are the same.

GoogLe cross reactive gluten foods. Amazing. I do react to many. Not as bad but still a reaction. Corn anything is horrible.

My daughter nor I are celiac but if she gets one crumb out of her friends toaster she's in severe pain. She's far more sensative than me but as stated above, gluten causes all kinds of issues that have nothing to do with the stomach.

I find the same thing with corn - cornflour gives me the worst bloating and discomfort, much worse than gluten exposure. Even "whole" corn kernels have this effect. When you start reading food labels, it's scary just how many products contain cornflour.

Gluten is more subtle - aching joints and mood issues - but unmistakable after an accidental exposure.

Like @DCUKMod, the only GF products I've ever purchased are Tamari organic GF soy sauce and buckwheat crackers. These days the only grains I consume - and then rarely - are rice and buckwheat.

 

[Kristin251]

I find the same thing with corn - cornflour gives me the worst bloating and discomfort, much worse than gluten exposure. Even "whole" corn kernels have this effect. When you start reading food labels, it's scary just how many products contain cornflour.

Gluten is more subtle - aching joints and mood issues - but unmistakable after an accidental exposure.

Like @DCUKMod, the only GF products I've ever purchased are Tamari organic GF soy sauce and buckwheat crackers. These days the only grains I consume - and then rarely - are rice and buckwheat.

That's so odd you say mood issues with gluten. My daughter told me her roommate always got it the next day, the sad moody thing, or I probably never would have made the connection. Cheese effects her the same way. I don't think it does me but I might be in denial. Maybe I'll make a deviled egg to go with my wine for a few days. I have been a little low energy lately. Cheese is a recent addition.
As far as corn, I haven't eaten real corn in eons but twice at a Mexican restaurant just eating the taco meat for salad I was doubles over in pain though gluten free. That's when I realized it was the corn STARCH they use to thicken it. I don't eat any gravies, sauces etc anywhere except home anymore. Though it was a few years ago I remember it like it was yesterday.
I just don't eat any grains. Don't digest them but some are worse than others. Rice never interested me. For a stir fry type dish I love grilling veg nad meat and using tamari ( gf soy sauce). No need for fillers. I'm not sure I e ever had buckwheat.

Gluten is evil. It effects so much more than the gut. That's really just a small part. In fact most people with celiac don't have stomach issues, more neurological or aches and pains, autoimmune diseases and have no idea it's from gluten. More people with intolerance to gluten have the gut issues.

The whole30 diet or autoimmune paleo diet is a great place to start though strict

It's amazing one crumb can set the immune system off for months before it clears. Evil!!

My daughter buckles over in pain from one crumb. Then she knows it will be days before she feels better. When we were out she was going to order fried potatoes off their gf menu and asked if they used a separate fryer. Nope. She could have been in loads of trouble. It or corn is in EVERYTHING

 

[Indy51]

@Kristin251 - I posted a link to what is referred to as Asymptomatic Coeliac Disease and the opioid effects of gluten. In case you missed it, you and your daughter might be interested:

https://jhpn.biomedcentral.com/articles/10.1186/s41043-015-0032-y