Do you live with both diabetes and celiac?

I live with both celiac and diabetes. They LOVE each other. Ugh. Celiac was something I’ve lived with since birth but diabetes didn’t appear until 19 years later.

I saw this community graph from myGlu this morning and was just wondering about our own community and celiac… Do you live with both? How do you manage to keep both in check? For me… If either one gets out of line, a vicious cycle ensues…:stuck_out_tongue_winking_eye:

Ever wonder what your providers are testing for when they are doing blood tests? Testing for celiac disease is popular for those with T1D, since symptoms often go unnoticed and those diagnosed with T1D may be at a higher risk.

What is Celiac Disease?

Celiac disease (CD) is an autoimmune disorder that causes damage to the villi of the small intestine. The villi of the small intestine are hair-like structures that are used to absorb nutrients as they travel through the digestive system. CD is generally discovered through symptoms of malabsorption including diarrhea, abdominal pain, iron deficiency, fatigue, and weight loss—although many people who have CD do not display symptoms. The cause of CD can be influenced by both genetic and environmental factors, similar to type 1 diabetes (T1D). The main treatment for CD is avoiding intake of gluten, a type of protein found in bread (described further below).

The prevalence of CD is between 1% and 2% of the total population of North America, South America, the Middle East, North Africa, and Asia. The disease incidence is between 10% and 15% for people with first-degree relatives who have it or for people with another autoimmune diseases (Yap, 2015). Recent studies have shown an increase in prevalence in certain parts of the world, particularly North America and Europe. Although diagnosed cases are increasing, there are estimates of extremely high numbers of undiagnosed cases as well.

The prevalence of people with a dual diagnosis of T1D and CD has been reported to be up to 20% depending on the location of the study. A recent Question of the Day answered by 524 people on Glu suggests that the co-prevalence of T1D and CD in our community is about 11 percent.

What is Gluten?

Gluten is a molecule that can be found in several grains such as barley, rye, and wheat. Gluten itself is made up of a mixture of proteins—more specifically glutenins and gliadins. Both of these proteins protect gluten in the gastrointestinal tract making it hard to digest. Within food, gluten affects the elasticity of dough and the chewiness of baked products. Baked products without gluten tend to be more breakable, crumbly or dry.

Gluten was introduced over ten thousand years ago, and gluten consumption is thought to have increased in the past half-century. This increase in gluten intake along with the introduction of a western diet in multiple countries is believed by many to be responsible for the rise of CD, although this relationship is still being investigated. The link between gluten and CD was established in the 1950s.

The treatment of CD is the elimination of gluten using a gluten-free diet. Those who follow a gluten-free diet must strictly eliminate gluten since even a small amount can prove harmful—in order for a food to be considered gluten-free there has to be less than 20 parts per million of gluten in the product (Lee, 2014).

What happens when someone with CD eats gluten?

CD is an autoimmune disorder; that is, the immune system attacks its own tissues. When someone with CD ingests gluten, the food is broken down as it moves through the digestive system. As it reaches the small intestine, the gluten molecules pass through the villi (the hair-like structures that absorb nutrients) as a part of digestion. In this stage the immune system recognizes the gluten molecules as potential pathogens and attacks them in the walls of the intestine. This is known as immune system reactivity.

The resulting damage to the villi of the small intestine due to the ingestion of gluten is not permanent. Since the small intestine is an organ, it is able to make new cells to replace the damaged cells once someone starts a gluten-free diet. It can take up to a month for a person with CD’s intestines to heal with a gluten-free diet.

Type 1 Diabetes and Celiac Disease

Even in people without CD, eating gluten can result in some immune system reactivity; interestingly, those with T1D show a greater immune response to gluten, even if they do not have CD (Auricchio, 2004; Troncone, 2003). Some researchers even theorize that eating gluten over time may be part of what ‘triggers’ the immune system to attack the pancreas, resulting in T1D; however, this relationship is not yet understood.

There is growing evidence to support the idea that patients with CD who follow a strict gluten-free diet may be protected against further diabetes-related complications. Studies have also found that T1D patients with CD have lower levels of retinopathy and cholesterol.

The association between celiac and T1D was established about 50 years ago. The dual diagnosis can be credited to overlapping genes (Bottini, 2004). Generally, people are diagnosed with T1D before they are diagnosed with CD; however, some people have been diagnosed with CD before T1D. It is difficult to screen for CD at diagnosis of T1D, as over ten percent of people eventually diagnosed with CD tested negative at the time of diagnosis of T1D, so rescreening later on is common.

Screening for Celiac Disease

The gold standard for diagnosing CD is an intestinal biopsy. However, because this kind of testing is considered to be invasive, people will typically get screened first by blood testing. The test detects antibodies that are produced by someone who has an immune response to gluten in food. Although the blood testing is generally accurate, intestinal biopsy makes the definitive diagnosis. Someone who does not eat gluten will not test positive since ingestion of gluten is necessary to cause the immune response and abnormal biopsy.

A recent question of the day showed that the majority of Glu users have not been screened for CD. Of those who were screened, the majority of them had the screening initiated by their diabetes care team.

Living with Type 1 and Celiac Disease

For some people, the gluten-free diet is not just a fad or lifestyle choice, it is a necessity. Managing diabetes and food intake is already hard enough, but having to eat gluten-free with type 1 diabetes can be extremely challenging. When deciding to eat out, someone with both T1D and CD may not have many options as some restaurants do not offer gluten-free foods or can cross-contaminate easily.

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I live with both, but I am a TD2 and not a TD1. There is no correlation between TD2 and CD. I manage on a LCHF gluten free diet for now.

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Interesting… I wonder what (ugh!) symptoms prompted your being tested for CD? I don’t believe I have any gluten-sensitivity, but just reading the above makes me wonder if some of my mother’s recent issues are associated with gluten.

My dad is her sole-caregiver, by choice – the thought of trying to get him to think of gluten free ANYTHING is more than just a bit daunting!

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Yes, I deal with both T1D and CD. Of the two, I would take diabetes any day of the week. At least I have some options there. All I can do with CD is be sick for a few days.

Thanks for posting this information. I haven’t researched a lot about CD because all I really need to know to take care of it is, stay away. There were several things in this post that I never knew.

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That’s what makes me feel the best as well! Which came first for you chicken or the egg?

I would love to know more about your cycling!! I just got into it over the past several months! I LOVE it!

Cheers!
Cynthia

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I just went in for a routine colonoscopy. During my GI consult, he suggested a celiac blood panel (laer an endoscopy). I have had Hashimoto’s Thyroiditis (20 years) and I was always anemic. No intestinal issues at all. My Thalasseemia and perimenopause were masking another disorder: iron-deficiency anemia resulting from celiac disease. Two months later, I fractured my back doing nothing (discovered Osteoporosis due to celiac disease).

Randy is right. TD1 is easier in some ways than CD. CD is a very socially isolating disease. It is NOT easy to eat out. I went a year before eating out at a restaurant after my last glutening (source unknown). (Europe was worth the risk and all the preparatory research). A glutening for me (based on antibody lab testing) can last four to six months). Not to mention adding new health issues and new celiac symptoms (intestinal issues now) due to a celiac flare-up. The good news, unlike TD1, the trigger for a flare-up is gluten. Avoidance is the only “cure”.

My TD2 (and I am a thin, athletic person) can probably be blamed on my age, genes, and SAD diet for most of my life.

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No celiac, though I’ve been screened three times (once when I was nine, once when I was about 25, and once last year) as I’ve had stomach issues on and off. Likely my stomach issues are just related to food allergies or sensitivities, because the tests have always come back negative (although this last time I was avoiding wheat, so it could have been a false negative). I do avoid wheat for another immune condition called eosinophilic esophagitis, which causes inflammation in the esophagus due to an allergic response when exposed to wheat and other food allergens.

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I have cycled for 20 years. I am a roadie for sure. The only time I have been injured is mountain biking. Besides, I don’t have to clean my bike as often! I bike around town running errands on a junker. It is fun and I take safe routes.

First? Hashi’s but seriously, I probably had CD for decades now that I look back. It is amazing how the body can compensate. I rode despite always being slightly anemic and later seriously anemic. TD2 has been recent (2-1/2 years). Again, I think TD2 was an age thing. I was hoping it was a result of having CD, but it has not gone away yet! I am thankful that I do not have TD1, but it is a possibility as TD1 and CD share genes. Plus, once you have one AI disorder, more typically follow.

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I live with both. Diagnosed T1 in 1961 & CD finally confirmed in 1970. I’d probably been CD for a few years before confirmation as I’d been taking Iron pills for a couple of years (1 effect of CD is malabsorbtion of vitamins & minerals). Once I adopted a gluten free diet I think my T1 became less brittle. It’s a lot easier to eat GF nowadays, in the 70s it was bake your own bread or eat dry rice cakes, known to my friends as "Annabella’s polystyrene). The drawback is that GF products have more carbs & it tends to be more refined & fast acting.

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@Randy5 I am so glad you thought the post was helpful! I did too! I never thought of it that way… Why I hadn’t researched much on celiac… Because yes!!! The answer really is stay away or be sick for a few days!! Or longer!!
And @Cyclinglady
I too would choose diabetes over celiac! I also have severe gastroparesis which is the worst nightmare of the triad.

I feel best on a low carb diet that eliminates all grains including those that are gluten free. It doesn’t seem to be just gluten that bothers me but any grain or startch, and dairy, soy, nuts, yadda yadda! My food sensitivity panel flags every food on there (over 500) except white rice and tuna. Lol!

I even did a complete liquid diet to try and “heal the gut” as my doctor says…it certainly helped but got soooo boring after 6 months!! Yuck! Ugh. Bleh.

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Just curious. Did they just do a CD screening (TTG IGA and an IGA deficiency – control test in this case) or a full panel? I ONLY test positive to the DGP IGA even in follow-up testing. Weird, but true. Luckily, my GI ordered the full celiac blood panel initially.

EOE is tough. Have you investigated Mast Cell Activation Disorder?

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@Jen this is so interesting! I had not heard of this condition…

I do not think my issues are strictly gluten as I mentioned in a comment here. It’s grains… I don’t know what else would cause what happens to my belly!

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As far as I know, only the TTG antibody was tested and was negative. I also had a biopsy at the same time as I was tested for EOE, but since my gastroenterologist was mostly looking for EOE at the time, he only took one biopsy, which I gather could have missed celiac.

I have heard of it, and have at times wondered about it just because my allergies are so complicated. My allergies have seemed to improve a lot over the past two years, though, in that I’m much less randomly reactive to things (though it still happens). From what I’ve heard, anyone in Canada wanting to pursue a diagnosis of a mast cell disorder pretty much has to go to the US to do so, so it won’t be something that I’ll pursue unless my allergies get a lot worse again.

It’s a fairly new and fairly rare condition. Probably similar to what celiac was like a couple of decades ago when no one knew what it was. :slight_smile:

Man, you are like me. What kind of panel did you have done? My allergist tests for IgE antibodies to foods I’ve reacted to and they practically all come back positive. I’d be scared to do 500 foods, though, because I’d probably be told to avoid all of them…

Wow, so do not eliminate CD as a possibility. Leading CD researchers (and the British and Anerican GI groups) recommend four to six biopsies. That is because damage can be patchy not to mention that the size of the small Intestine when stretched out is like the size of a tennis court.

Since you practically have exhausted celiac testing (at least in Canada) I would really trial a GF diet. Not sure how careful you are now, but avoiding cross contamination and avoiding barley and rye as well as wheat.

I am not a doctor, but it could be worth a try. At the very least, do some research and talk to your doctor. It helps to have them on board. My PCP is impressed with my LCHF diet (I presented my progress chart) but I do not think he is ready to encourage all his diabetic patients to try it. Nah…that chicken with brown rice and dry broccoli is still hanging in his office!

By the way, most of my allergies and food intolerances have diminished due to my GF diet, most likely due to antibody reductions. Even my thyroid is no longer enlarged and my nodules are gone!

Are you getting annual follow-up celiac testing? [quote=“cynthia_rogers, post:10, topic:55706, full:true”]
@Randy5 I am so glad you thought the post was helpful! I did too! I never thought of it that way… Why I hadn’t researched much on celiac… Because yes!!! The answer really is stay away or be sick for a few days!! Or longer!!
And @Cyclinglady
I too would choose diabetes over celiac! I also have severe gastroparesis which is the worst nightmare of the triad.

I feel best on a low carb diet that eliminates all grains including those that are gluten free. It doesn’t seem to be just gluten that bothers me but any grain or startch, and dairy, soy, nuts, yadda yadda! My food sensitivity panel flags every food on there (over 500) except white rice and tuna. Lol!

I even did a complete liquid diet to try and “heal the gut” as my doctor says…it certainly helped but got soooo boring after 6 months!! Yuck! Ugh. Bleh.
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For those of you with diagnosed CD
Especially those who have long glutening periods

Does acidophilus help?
A little, a lot or not at all?
I’m just wondering?

While not “thin and athletic,” I was at normal weight and active when Dx’d with T2D. Because of my reactions to medications, I’ve been on insulin almost from the start - and that seems to have been the right choice, anyway with my very low insulin production. I don’t know if I can use age as the cause in my case - i was Dx’d on my 50th birthday - older, but not aged… Who knows.

My mother’s T2D was diagnosed at around 65 - my father blames it on Lipitor, though she’d been overweight most of her life. I do need to get her in for a colonoscopy though that may be hard with her other issues… She has almost always been on the anemic side, but lately, it had gotten rather severe. Between that and some of the other types of issues similar to those you mentioned, I really wonder if there’s a gluten or CD connection.

I’ve been on a wheat-free (so largely gluten-free) diet for the past two years. I’m pretty strict with it. I have other much more severe food allergies, so I’m well versed in avoiding cross-contamination. I declare it when ordering foods at restaurants and don’t have any wheat in my apartment, buy the oats that say wheat-free and so on, so I think cross-contamination is probably minimal.

I do wonder whether avoiding foods causes my IgE antibodies to those foods to drop, since they have gone down significantly over the past two years of avoiding those foods (although they are still positive), and I think this does happen with celiac antibodies. Although, the antibodies for my severe food allergy (that I’ve had since I was a child) have stayed extremely high despite decades of avoidance. It also didn’t prevent my body from attacking my thyroid and developing Graves’ disease (which so far shows no signs of remission nine months in). I’ve never had any testing for food sensitivities other than IgE antibodies for allergies, although I’ve wondered about it now and then. I also have a lot of other allergy issues going on (asthma, eczema, severe environmental/seasonal allergies) that haven’t improved much. Ah, I am sure this immune/autoimmune/allergy stuff is all connected at some level…

Fascinating conversation. Fortunately, my daughter has T1D but not celiac (yet, knock wood!) Every year when it’s yearly labs time, I mentally prepare myself for this possibility (along with Hashimoto’s, Graves, and a handful of other autoimmune diseases ).

What I am wondering about is whether the majority of folks who end up with diagnoses of both celiac and Type 1 were diagnosed with Type 1 first or celiac first. Important to remember that neither one causes the other; there is simply an increased incidence of autoimmune diseases in folks with one autoimmune disease.

Let’s say, for the sake of this discussion, that the majority of folks were diagnosed with Type 1 first. This doesn’t necessarily mean that Type 1, statistically speaking, precedes celiac (if you are “unlucky” and are genetically programmed to get both). It may simply mean that because celiac can remain asymptomatic longer than Type 1 can, that Type 1 is diagnosed first (if the celiac antibody test is not “automatically” performed upon diagnosis of Type 1.) Also, a positive celiac antibody test (at least in kids, perhaps also in adults) is usually confirmed with an endoscopic biopsy which is not always able to be scheduled in close proximity to when Type 1 was diagnosed, which in turn may lead to a misperception that Type 1 was present before celiac disease.

Anyway, for those of you on this Forum with both (and my heart goes out to you!) which diagnosis came first?