Newly diagnosed. Asymptomatic and need motivation for A GFD

[Asm]

Hello all. 
 

Hello everyone.

I’ve been a type 1 diabetic since 2009. I also have Hashimoto’s thyroiditis which automatically makes me high risk for celiac. I recently underwent a celiac serology screen that came back positive. This led to an EGD with biopsy which confirmed a diagnosis with celiac. I do not have any any intestinal issues which is why I was so surprised by the result. Although I do suffer from chronic iron deficiency anemia. 
 

I’m glad someone from a  discerned forum referred me here because it’s been so helpful to look through.

This is a bit shocking as I had no symptoms to speak of. I will be meeting with a specialized dietitian soon but I’d like to get a head start on things.

Of course I am advised to follow a gluten free diet. To be honest I am not eager to start a gluten free diet since I don’t have any symptoms to seek relief for. I don’t know where to begin. I’m also worried that once I’m gluten free I’ll really start to experience its effects if I’m “glutenized”. Don’t even get me started on cross contact sounds unavoidable and I can’t imagine how one can avoid it.

This seems like a complete overhaul of my diet and that surely can’t be good for my glucose control. From what I’ve read so far most readymade gluten free products have a high glycemic index.

Any tips/ past experiences appreciated. Especially regarding glucose control with a gluten free diet.

[RMJ]

When I was diagnosed I didn’t think I had any symptoms.  Turns out I did, and I feel better gluten free.

[trents]

Welcome to the forum, Asm!

1. Many of us are like you. We were diagnosed for reasons not having to do with the classic GI distress normally associated with celiac disease. We call them "silent" celiacs. But despite no GI distress, damage to body systems still accrues. One of them you are already aware of and that is iron deficiency anemia. But there is also osteoporosis/osteopenia and tooth enamel loss from malabsorption of calcium and other minerals and vitamins. Celiac disease damages the villi that line the small bowel which impairs absorption. Many of the collateral health issues associated with celiac disease are caused by malabsorption of vitamins and minerals. It can take years for them to show up but by then serious and sometimes irreversible damage has been done.

2. While it is true that processed gluten free food products are typically high glycemic index foods, so is the wheat flour that celiacs should be eliminating from their diets.

3. It is not necessary to substitute a lot of processed gluten-free foods for gluten containing ones in order to eat well. Many main line foods are naturally gluten-free. Mostly, you would be giving up snacks and confections which is something we would all do well to do. Just focus on fresh produce, fruits and meat and focus on cooking your own stuff rather than buying premade, processed stuff.

4. Don't obsess over CC (cross contamination). Take common sense measures to avoid it. Trace exposures to gluten may not be an issue for you. There are super sensitive celiacs who must give great attention to CC but you may not be one of them. Having said that, since you are a "silent" celiac, it would be important for you to get retested for celiac antibodies once or twice a year to see if you are succeeding in your gluten free lifestyle.

[CatIslay]

  On 4/20/2023 at 11:41 PM, Asm said:

Hello all. 
 

Hello everyone.

I’ve been a type 1 diabetic since 2009. I also have Hashimoto’s thyroiditis which automatically makes me high risk for celiac. I recently underwent a celiac serology screen that came back positive. This led to an EGD with biopsy which confirmed a diagnosis with celiac. I do not have any any intestinal issues which is why I was so surprised by the result. Although I do suffer from chronic iron deficiency anemia. 
 

I’m glad someone from a  discerned forum referred me here because it’s been so helpful to look through.

This is a bit shocking as I had no symptoms to speak of. I will be meeting with a specialized dietitian soon but I’d like to get a head start on things.

Of course I am advised to follow a gluten free diet. To be honest I am not eager to start a gluten free diet since I don’t have any symptoms to seek relief for. I don’t know where to begin. I’m also worried that once I’m gluten free I’ll really start to experience its effects if I’m “glutenized”. Don’t even get me started on cross contact sounds unavoidable and I can’t imagine how one can avoid it.

This seems like a complete overhaul of my diet and that surely can’t be good for my glucose control. From what I’ve read so far most readymade gluten free products have a high glycemic index.

Any tips/ past experiences appreciated. Especially regarding glucose control with a gluten free diet.

Expand Quote  

Heyy how I feel for you - type 1 for 32 years, hashimoto's for 12 - just going along minding my own business , got tests for a dermatologist and he said "oh so you have celiac too" what??????!!! Zero intestinal problems ever.  I felt real shock (self pityingly - why this too? I've been a "good" diabetic, followed the rules, used up all that mental space calculating X, y and z and no this, when I have no symptoms!) I'm a sensible person in my 50s and I cried - I live in Italy for goodness sake! Pizza, pasta, bread.... and eating together with family and friends is so central to the whole culture. But like you I had longstanding anemia - dismissed due to "being a woman", long-standing fatigue - "that's life", tendency to low mood -"that's life", shoulder and ankle pain and limited movement in both - "ageing process" . Believe me nobody wanted to give up gluten less than me,( I had no problems like vomiting, pain, diarrhea or constipation -) but all of the above that I mentioned have gone since I went gluten-free - it took a while but I can move more freely now than in years - maybe you have 'hidden' stuff like that? Or also hidden start of osteoporosis - I had vitamin D deficiency which is not routinely tested for - I had to have supplements to correct that.  In Italy we have a system where we get around $100 a month to buy gluten-free food from the pharmacy and I will say some of it is ruinous for blood sugar, but actually only the kind of ultra processed stuff that we shouldn't be eating anyway - You can do this, I went into it very unhappily but then tried to get a new take on it that this was a way to eat fewer carbs in general and to eat fewer processed foods.  And I feel way better in ways I didn't expect.  Post starting the gluten-free I did get glutened after eating fries cooked in a non exclusive fryer and I'm not going to lie - I was as sick as a dog and felt utterly miserable (before that the last time I was sick was literally morning sickness in pregnancy 20 years previously - just to underline that I was a stranger to gastro symptoms) if I had been curious to know what would happen if I sneaked a bit of gluten in - I got my answer loud and clear (and it wasn't like I'll just have this sweet thing I can inject for it or know I'll have high blood sugar for a couple of hours - from one type 1 to another...) That experience helped if anything to keep me on the straight and narrow and I would say all your experience with type 1 will be a help to you - think positive! It's unfair but in the end life is unfair and we are lucky enough to live in a time and place where we can live with these conditions.  Take care - sorry for the loong message - I'm with you! 

[Scott Adams]

Iron deficiency may be just the tip of the iceberg as far a nutrient deficiencies go. Since you had flattened villi you may have additional nutrient deficiencies, so you may want to get your level checked, and the article below has more info about this.

A motivating factor to stay gluten-free would be the many issues that malabsorption can cause over time, and iron deficiency is just one that can cause a number of issues if not treated. Some celiacs end up with bone density issues and osteoporosis, which is very serious. If you were to continue eating gluten you may also be more prone to get other autoimmune disorders, and you already have two, so this is another factor.

 

 

[Asm]

Thanks all for your help❤️.