Newly diagnosed coeliacs

[Helsharrison]

Hi, I was diagnosed with coeliacs in October last year. I’m really struggling with my blood sugars at the moment, I can be low over a day or so then high the next and whatever I do doesn’t change it. Has anyone else had this? Is this forever or just whilst my gut heals? Thanks in advance x

 

[kitedoc]

Hi @Helsharrison, Welcome to the forum!!
What a double whammy. Diabetes and then CD!!
We could help more if we knew what type of diabetes you are diagnosed with and what treatment you have been prescribed for it.
My daughter has CD diagnosed at age 2, but not diabetes, and her specialist said that it would take 12 months for the lining of her intestine to fully heal, even on a strict gluten-free diet!! She had to take loads of extra vitamins for a while, in the hope that some would be absorbed!! She was not keen on vitamin injections !!
Also I have read that some types of gluten-free flour in cooked foods tend to raise BSLs more than others.
But that the fat in things like butter, cheese etc helps to slow the absorption of the carbs in breads etc and moderate the BSL rise.
You will no doubt have arranged a separate toaster for such things and made sure YOUR marg/butter/cheese and other spreads are free of other's bread crumbs etc!!
Best wishes and hope to hear back soon !!

 

[DCUKMod]

@Helsharrison I can't tell from your profile if you are T1, T2 or T3c? It could be helpful, on an ongoing basis, to update that, as it can make a real difference to the replies you might sometimes receive.

I'm not coeliac (I passed the antiboides testing), but an gluten-free, on the direction of the Endo anyway.

I know @Robinredbreast has both T1 and Coeliac, so may have some wisdom for you.

How was your blood glucose control before the diagnosis?

 

[dancer]

@Helsharrison I was diagnosed coeliac after having Type 1 diabetes for 37 years. I've now been gluten free for 3 years. My blood sugars had seemed to do their own thing since my last pregnancy (my daughter is now 31) and I hoped going gluten free would help get me back to my sensible results from pre-pregnancy years. Unfortunately that didn't happen, in fact there were times when my highs and lows were even worse than usual. My diabetes dietician said that it can take up to 5 years for the gut to get back to normal.

I've learned through trial and error to be very careful when including GF foods in my diet as the carb values marked on the packs seem to be higher than they actually are. For example of a slice of bread is supposed to be 15g carbs, I call it 10g otherwise I go hypo. . . . But that's me, others could be different.

 

[Helsharrison]

@Helsharrison I was diagnosed coeliac after having Type 1 diabetes for 37 years. I've now been gluten free for 3 years. My blood sugars had seemed to do their own thing since my last pregnancy (my daughter is now 31) and I hoped going gluten free would help get me back to my sensible results from pre-pregnancy years. Unfortunately that didn't happen, in fact there were times when my highs and lows were even worse than usual. My diabetes dietician said that it can take up to 5 years for the gut to get back to normal.

I've learned through trial and error to be very careful when including GF foods in my diet as the carb values marked on the packs seem to be higher than they actually are. For example of a slice of bread is supposed to be 15g carbs, I call it 10g otherwise I go hypo. . . . But that's me, others could be different.

Thanks for your response. I found the exact same with a certain brand of bread. I try to steer away from a lot of shop brought stuff but since I can’t have weetabix anymore (and the GF one is awful!) I have started having toast for breakfast. It’s good to know that others are in the same boat. I’ve always had fairly stable blood sugars so to not have this is so frustrating!

 

[Helsharrison]

Hi @Helsharrison, Welcome to the forum!!
What a double whammy. Diabetes and then CD!!
We could help more if we knew what type of diabetes you are diagnosed with and what treatment you have been prescribed for it.
My daughter has CD diagnosed at age 2, but not diabetes, and her specialist said that it would take 12 months for the lining of her intestine to fully heal, even on a strict gluten-free diet!! She had to take loads of extra vitamins for a while, in the hope that some would be absorbed!! She was not keen on vitamin injections !!
Also I have read that some types of gluten-free flour in cooked foods tend to raise BSLs more than others.
But that the fat in things like butter, cheese etc helps to slow the absorption of the carbs in breads etc and moderate the BSL rise.
You will no doubt have arranged a separate toaster for such things and made sure YOUR marg/butter/cheese and other spreads are free of other's bread crumbs etc!!
Best wishes and hope to hear back soon !!

Thanks for your response, I really appreciate it. Apologies for not stating that I am type1 (have been for 37 years) yes it’s been a big learning curve with all the foods and I try to cook from fresh as the GF stuff can be so high in carbs, fat and sugar. I’ve had relatively good control but since going GF I’ve found my highs are higher and my lows are lower which can be so upsetting when you’re trying your best! Hope your daughter continues to thrive on a GF diet. Must have been a huge learning curve for you too!

 

[Helsharrison]

@Helsharrison I can't tell from your profile if you are T1, T2 or T3c? It could be helpful, on an ongoing basis, to update that, as it can make a real difference to the replies you might sometimes receive.

I'm not coeliac (I passed the antiboides testing), but an gluten-free, on the direction of the Endo anyway.

I know @Robinredbreast has both T1 and Coeliac, so may have some wisdom for you.

How was your blood glucose control before the diagnosis?

Hi, apologies for not stating that I was type1 and have been for 37 years. I’ve always had relatively good control so to then struggle to get any kind of control is so hard, especially when you’re trying your hardest to balance everything correctly. I’m guessing that my gut is healing and from what others have said this will be ongoing for a considerably long time! It’s just nice to know that I am not by myself. Thanks for your response. Much appreciated.

 

[kitedoc]

Hi @Helsharrison, Thank you for your reply. My little 2 year old is now 17 and thriving!
She has Down Syndrome and between that (CD is more common in Down Syndrome than the general population) and having a maternal aunt with CD, I guess the odds were against her. Never stopped her strength in giving fierce hugs though !!!
With your situation I wonder if it is worth asking your dietitian about the pros and cons of a low carb diet.
A number of us on site and elsewhere are doing well BSL control-wise on such a regime. And less carbs = less insulin = less severe ups and downs.
It may depend on how well you are absorbing minerals and vitamins too at the moment.
I assume at some point your doctor has checked those ??
Reading up a bit on Zoe Harcombe's column and writings may help too.
Best Wishes.

 

[DCUKMod]

@Helsharrison - I fully appreciate that as a T1 you have way more flexibility in terms of dietary choices than most T2s who need to manage their carb intake somewhat, in order to keep their bloods in shape. I know you carb count too, but with a different mechanism in mind.

As someone who was already eating in a lower carb way, when told to go GF, I looked at the Endo and stated it'd be a dawdle, as I didn't eat grain products anyway. Little did I know at that moment where the pesky gluten hides!

On a personal front, I avoid products marked as GF, unless they are naturally so, so no GF pasta, bread or the like for me. The exceptions I make are GF Worcester Sauce and Soy Sauce. It's just easier, in my view, to choose natural foods where I know it can't have been contaminated in any way. I've had a couple of nasty experiences when I have ordered from the GF menu when eating out.

How are you getting along with the eating side of things?

 

[Xal]

Hey - I have had Coeliac Disease for 20 years but very recently diagnosed with Type 1. I have found lots of highs and lows in my BG. As a newbie I have no idea if this is normal but I have noticed that GF cereal seems to send my BG spiking but GF bread not so much. I have found it all rather challenging so I share your pain! I am trying to cut at carbs to see if that helps with the high and lows roll coaster but it is difficult. I hope it gets better for you.

 

[aealexandrou]

Hey - I have had Coeliac Disease for 20 years but very recently diagnosed with Type 1. I have found lots of highs and lows in my BG. As a newbie I have no idea if this is normal but I have noticed that GF cereal seems to send my BG spiking but GF bread not so much. I have found it all rather challenging so I share your pain! I am trying to cut at carbs to see if that helps with the high and lows roll coaster but it is difficult. I hope it gets better for you.

GF cereals are likely to have added sugar and or fruit. The fructose in the cereal may be adversely affecting your liver which triggers signals to your pancreas to increase insulin. I am always surprised when a coeliac talks about eating bread and cereals. Wheat intolerance usually accompanies Gluton intolerance. Over a prolonged period of time when your gut and stomach becomes permeable from the grains, lectins (toxins) from the carbs escape into the body and cause havoc with your autoimmune system, which can attack the pacreas and cause T1D.

 

[Brunneria]

GF cereals are likely to have added sugar and or fruit. The fructose in the cereal may be adversely affecting your liver which triggers signals to your pancreas to increase insulin. I am always surprised when a coeliac talks about eating bread and cereals. Wheat intolerance usually accompanies Gluton intolerance. Over a prolonged period of time when your gut and stomach becomes permeable from the grains, lectins (toxins) from the carbs escape into the body and cause havoc with your autoimmune system, which can attack the pacreas and cause T1D.

Most GF breads and cereals have potato or maize or rice instead of grains.

 

[iwilltouchyourcat]

I’ve been coeliac for around 10 years and diabetic for 5. I do low carb so avoid the pasta and breads. I have edamame spaghetti and Dillon’s gf vegan keto bread. I only have to look at a gf cereal box and my bm skyrockets oh and to add another layer of things to check labels for , I’m also vegan