Diagnosed with Type 1 AND NOW ALSO Coeliac Disease!

[Kristin251]

@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

Very interesting. I'll pass it on to her. Thank you

My brother in law was put on a gf diet due to malabsorption of vit D, B vitamins as well as others.
though he apparently thinks he's excused from his Friday night pizza and garlic bread extravaganza because it only one night. !!! Silly boy. I didn't even know where to begin so I shut my mouth.

At least while he was telling us about this he was eating guacamole with chips. Me being me checked the chip pkg and ingredients started with corn flour then wheat flour!!! I poured myself a wine. Where does one begin???

 

[Indy51]

Ah yes, the extruded flour paste, artificially coloured and flavoured pretend food products

 

[SockFiddler]

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!!

Since the SEND reforms (Children and Families Act etc), efforts have been made to align service cut-off ages between different statutory services, partly to streamline referrals, locality teams and info-sharing "across the boundaries" (primarily local authority to NHS and back again) but also to make preparing for adulthood plans easier to make and more effective.

For the NHS, since the reforms, a child remains with NHS services until they are (and this will sound pedantic) 18 years and 364 days old (the day before their 19th birthday) unless they have a "learning difficulty" (an ambiguous term which means different things to adult and children's NHS services), at which point the can choose to remain with their paeds teams until the age of 25.

Do bear in mind, though, that these changes only apply to children under the SEND umbrella (Special Educational Needs and Disabilities, as well as life-limiting conditions - of which it can be argued that children with T1 diabetes fall). I don't know the cut-off age for non-SEND children will be.

Sorry for the late (and potentially now irrelevant) reply, DD

Edit: Oh, also, there's issues now with the Mental Capacity Act, but that's far too big of a can of worms to open here. But, yes, it potentially means that parental involvement can end at 16 - regardless of parental feelings about that. It's horrifically confusing.

 

[Lord Midas]

Just to add, I've just finished Keto Clarity by Jimmy Moore and Dr Eric Westman. One of the topics is about how being in Ketosis can reverse or aid various metabolic syndrome diseases. One chapter talked about this and various studies (I googled "low carb coeliac") have shown that a low carb high-fat diet has done wonders for people with coeliac (and diabetes and obesity, etc). Plus, low carb would mean no bread/gluten too.

Worth investigating.

 

[Lar oli mu]

cornflour gives me the worst bloating and discomfort, much worse than gluten exposure. Even "whole" corn kernels have this effect.

If you look at this chart, you will find corn cross-reacting with GAD 65, an enzyme that works in the thyroid, the memory center of your brain and in the pancreas. Most diabetics have antibodies against this enzyme and it cross reacts with I think 9 foods that are commonly eaten by diabetics who don’t have a clue that eating this is like putting gasoline on the fire of their autoimmune reaction. Worse than that:Zink transporter 8 is a molecule, that transports zink molecules into the insulin producing cells of the pancreas. Since insulin molecules are protein chains held together by zinc atoms, if your zink transporters are destroyed, your body can’t make insulin.It crossreacts with almost thirty foods. What do you think about this?

This chart is from
“Detection of islet cell immune reactivity with low glycemic index foods – Is this a concern for type 1 diabetes?”
Datis Kharrazian,1, 2, 3 Martha Herbert1, 2 Aristo Vojdani,3, 4
1 Harvard Medical School, Boston, Massachusetts, United States of America
2 TRANSCEND Research, Department of Neurology, Massachusetts General Hospital,
Charlestown, Massachusetts, 02129, United States of America
3 Loma Linda University School of Medicine, Department of Preventive Medicine, Loma
Linda, California, United States of America
4 Immunosciences Laboratory, Inc., Los Angeles, California, United States of America

 

[Fairygodmother]

View attachment 27461
If you look at this chart, you will find corn cross-reacting with GAD 65, and enzyme that works in the thyroid, the memory center of your brain and in the pancreas. Most diabetics have antibodies against this enzyme and it cross reacts with I think 9 foods that are commonly eaten by diabetics who don’t have a clue that eating this is like putting gasoline on the fire of their autoimmune reaction. Worse than that:Zink transporter 8 is a molecule, that transports zink molecules into the insulin producing cells of the pancreas. Since insulin molecules are protein chains held together by zinc atoms, if your zink transporters are destroyed, your body can’t make insulin.It crossreacts with almost thirty foods. What do you think about this?

This chart is from
“Detection of islet cell immune reactivity with low glycemic index foods – Is this a concern for type 1 diabetes?”
Datis Kharrazian,1, 2, 3 Martha Herbert1, 2 Aristo Vojdani,3, 4
1 Harvard Medical School, Boston, Massachusetts, United States of America
2 TRANSCEND Research, Department of Neurology, Massachusetts General Hospital,
Charlestown, Massachusetts, 02129, United States of America
3 Loma Linda University School of Medicine, Department of Preventive Medicine, Loma
Linda, California, United States of America
4 Immunosciences Laboratory, Inc., Los Angeles, California, United States of America

I googled the original and am wondering whether I need to change diet or just lucky enough to be one of the 90% who, allegedly, don’t also have an autoimmune coeliac condition.
It raises all kinds of questions.
My son-in-law’s coeliac and so far seems to have no real problem if he eats gluten-free, but I really don’t know what state his villi are in.
He’s got used to the different taste of gluten-free carbs now although he didn’t like them when first diagnosed.
The first basal I was put on, 48 years ago, was PZI, Protamine Zinc Insulin; it had a wretched profile which demanded that carb was eaten at predesignated times but might having a zinc suspension also have helped the insulin’s effectiveness?

 

[Lar oli mu]

wondering whether I need to change diet

You just need to find out against which target sites you have antibodies. We are just lucky, that the autoimmune guys at Harvard picked pancreas target sites first, because they know that diabetes is just exploding worldwide. So find a lab that will check for antibodies against GAD65/67, IR-A, IA2 and ZincTransporter8, in Germany that would be 150 Euros, and then move on from there.
Up top these are all the foods that they tested. So I went through all of them and checked which ones are good for me and which ones to avoid. I only did this a week ago, ending the time where I got so frustrated about all the things that I cannot eat anymore (like zucchini or popcorn). Now I’m thriving on mangos and oranges and I make fresh juices every day. How about that?!

 

[Indy51]

So find a lab

Pretty sure that Cyrex Labs has opened in the UK as well as the USA. They have the same assays that were used in the study. Pretty sure @DavidGrahamJones has used their services.

 

[gemma_T1]

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.

Hi,

I’m so sorry that your son has both these horrible auto-immune conditions. I really feel for him and for you too. I am both type 1 (diagnosed at 18) and Coeliac (found out by chance much, much later)... my son was diagnosed as Coeliac aged six, so I can see your situation from both a patient and a mother’s point of view.

Unfortunately your son must go cold turkey. There is no other way to stay healthy and avoid other health complications later on.
You must, if you cannot make your home totally gluten free, have separate utensils for your son and a separate toaster, there is danger lurking in cross contamination.

I am very strict with my diet and with eating out and hardly ever do it unless I know the place is guaranteed and I can see how they work and also that they actually know what I am talking about when I say the magic words gluten free/ Coeliac ..

My son follows a totally gluten free lifestyle too and has only eaten gluten once in six years since diagnosis and this was by accident last summer and he was very, very sick.

At first it is really hard as you still remember vividly the taste of the real foods that you are replacing with the gluten free stuff. However you will by trial and error find things you like more or bear more than others.

Tesco, Sainsbury and the Co-op do lovely triple chocolate cookies, my son loves them, although he is not diabetic. Diabetes makes being Coeliac much more complicated for many reasons. The main reason being that the products are full of sugars and usually made with corn or rice products, which make then extremely high GI foods. So being Coeliac is actually much harder for us diabetics .. but I suppose you could give him the biscuits when his blood sugar is low.

Also Sainsburys gluten free bread is fine for toast as is Warburtons. There are also wraps made by BFree which are wheat and gluten free.

Nairn’s make gluten free porridge and muesli guaranteed. Available from Sainsbury and Tesco.

N.B. Not all oats are guaranteed gluten free

Findus or Birds Eye make gluten free fish fingers if he likes that sort of thing.

Also be aware that things like sausages have wheat in them ... you will need to read the labels ever so carefully as it’s a minefield. Things you would never associate with gluten have it... it’s everywhere..

We are lucky in that we live 3O mins away from a gluten free bakery. But if you check online you may be able to find a gluten free bakery near you.

I don’t know where you live, but if your son likes to eat fish and chips there are some fish and chip shops that do gluten free once a week.

If you come from the North East you are lucky, as Tynemouth has an award winning fish and chip shop called Longsands, who do an excellent gluten free fish and chips, my son dreams of this place

It’s going to be hard for him to deal with having both these conditions at such a young age .. just when you want to do your own thing and also be like everyone else your first experiences of independence, so I hope the hospital will give him and you lots of support.

Barilla is my son’s favourite pasta.

It is really important that he follows the diet strictly and that everyone around him, school, friends and family know about his conditions so that if he feels tempted they can talk him out of it ...

Your son has diabetes and not following the gluten free diet will make his diabetes much harder to control believe me it brings huge swings in glucose levels.

Just one further thing he will come to rebel it’s normal I know I also have to take that into consideration when my son gets older .. in fact I just found out 2 weeks ago that my cousin’s son who has also been diagnosed with Coeliac is not following the diet at all and at 18 is drinking beer which is obviously strictly off limits unless it is gluten free. He is ill all the time but he won’t listen to anyone, he just wants to be like everyone else.

What I guess I’m trying to say is that the psychological impact of both of these conditions is so huge and must be addressed and I’m really hoping that you have a good team to help you both in this because you will also be finding this really tough, I remember my mum burst into tears and never stopped worrying about me.

I send you both my love and best wishes.

If you ever need anything and think I could help I will be very happy to answer as best I can.

Also there are some lovely recipes online which you can try at home and there are also gluten free food magazines too. I wouldn’t buy the Coeliac approved cookery books, I have two and I have never made anything from them.

Coeliac diagnosis means we mums have no choice but to get creative in the kitchen!!

Good luck

Gemma

 

[gemma_T1]

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.

Sorry I just read your post was from a year ago so you’ll already have learnt the ropes by now. I hope it’s going well
Gemma

 

[DavidGrahamJones]

Pretty sure @DavidGrahamJones has used their services.

Genova Diagnostics - https://www.gdx.net/uk/

 

[Fairygodmother]

Thanks for the info @DavidGrahamJones, very useful.