Does anyone have celiac disease and diabetes?


(Gina) #1

I was just wondering if anyone has both diabetes and celiac? and if you do how do you cope?


(Maria) #2

Gina,

My daughter has both she is 11 and was diagnose with T1D a year ago and with the celiac last september 2008. How did you cope with it is been hard for me, and I bet is been hard for her too.


(Gina) #3

I have not actually been diagnosed yet I am getting tested for it on my next blood test. What were the symptoms she had prior to celiac?


(stilledlife) #4

Symptoms

Luckily I am not celiac, but I am highly allergic to milk. I think that the symptoms are very much the same. A very high blood sugar, it can reach a continual 300+ or even higher depending on the severity. The part I found the scariest is that increased insulin injections will not bring it down. This is often accompanied by pain in the abdomen, irregular bowls, and all over shut down of the bodily systems. My friend with celiac went DKA before she was finally diagnosed.

I don't know if this is true for celiacs- but I'll also have itchy hives and eczema.

Diagnosis

It is a hard diagnosis because most doctors will think that it is you doing wrong and aim at your diabetes care before they or even you eventually realize what the culprit is. I have seen patients being treated very badly because of this blaming their habits, yelling at the patient, even going behind parent's backs test daughters for pregnancy or drug use. 

I had to be self diagnosed. I examined everything I ate, the blood sugar, and the effect of Benadryl after a high. Milk was bad. And after this discovery I have been left on my own to alter my diet without any help from my endo or dietitian, who for a long time even after I told her what was wrong tried to get me to eat yogurt because it is good for me.

Coping

My allergy to milk requires scrupulous investigation of ready made products, I also can't eat-out like used to. I've had to learn a large new vocabulary of milk words , new styles of cooking, and a whole new way of eating that does not flow well with my culture. I am more then positive that gluten will be much the same, if not a little harder to cut for your diet.

For those with celiac there are resources like http://www.glutenfree.com/  also even more items then ever available at your local grocery store!

Also, it is hard not to fall back on old eating habits. You may not feel bad right away, but your HA1c, stomach, skin, and blood sugar will let you know that you just don't feel right anymore.

Good luck, I hope you get some people with more direct experience to reply.


(system) #5

[quote user="Gina"]

I have not actually been diagnosed yet I am getting tested for it on my next blood test.

[/quote]

I'm in a similar boat, Gina.  My bloodwork tested positive but now I need to go for an endoscopy to verify.  My endocrinologist told me that autoimmune diseases often tend to cluster.  In fact, a recent scientific study discovered linkages between Type I and Celiac ( http://www.jdrf.org/index.cfm?fuseaction=home.viewPage&page_id=111213 ).  My endo also told me that people with Type I may show minimal symptoms or are asymptomatic when it comes to Celiac disease.  I'm not sure why this is.

Although I haven't been officially diagnosed, I have been looking into resources and it seems that most major cities have Celiac Support Groups.  The one in my town offers grocery store tours pointing out where all the gluten-free goodies are kept hidden.  They also offer a list of restaurants and markets that offer GF products.  It's going to be a learning process if I test positive but, after living with diabetes for 16 years, I feel like I can handle anything these doctors throw at me!

L.


(patienceaz) #6

Gina, My son is 6 and was dx with DM 2 years ago. His Celiac screen was mostly positive the 2nd year. Our Endo referred us to a Peds Gastroenterologist and she recomended having an intestinal biopsy. We then got a 2nd opinion at Boston Children's Hospital ( we live in PHX AZ and flew to Mass) as they are supposed to be the best re: Celiac. 

We spoke with the MD and decided to wait until this spring to re-test my Son with the Celiac panel labs before going ahead with the biopsy. I prefer the least invasive ,methods for him as possible. He has had no symptoms, no growth stunting, no abdominal pain or poop problems either. His celiac panel was as I mentioned mostly +, he was also getting over the chicken pox on the 1st lab test and pneumonia on the redraw which will mess with your immune system.


(d.mwright) #7

When you reffer to poop problems are you reffering to the runs?


(mamacolby) #8

Gina,

There is a woman in the local JDRF San Diego chapter that has a son with type one and celiac's.  If you want I could ask for her contact info and get it back to you.  She has a degree as a dietician and seemed really knowledgeable about celiac's.  She has made her entire household gluten free.  The thing about it too, is since they remove the gluten (usually a combo of natural fats and/or fiber) they have to add back in some sugar.  So the portions are much smaller, but if it makes you ill or too high to have gluten, then that is a much better alternative.  She was initially pretty devastated to learn that her son had another disease to deal with, but seems to be doing better now.

I sincerely hope that your test turns out negative.


(SabrynaaCaseyyx3) #9

Hey Gina. I have both, type one diabetes and celiac. i was diagnosed with type one in september of 2008 and diagnosed with celiac in may. it's realy hard to deal with it all, there checking my blood sugar, taking insulin counting carbs reading labels and now on top of that all i have to read tons of more labels checking ingredients call manufacturing companys shopping at special stores watching what i eat and still being a teenager. this one was hard task the first week, i couldn't take the food it was disgusting so i refused to eat. then all i would eat was salad. i finally got used to the food and now its a little easier but i still get upset every once in a while; like whwen i go to artys or barbeques and i see all the good food and i can't eat any of it. its getting alot easier though.


(ktbabyx33) #10

I have both diabetes and celiac!!!! lol. Im 15 years old and i got diagnosed with celiac disease a few months after i got diagnosed with diabetes. Its pretty easy to cope now, but oh who am i kidding.. celiac disease sucks. I mean, ive found a lot of foods i can eat and that i really enjoy buts its just really hard being a teenager that cant eat anything with wheat in it! like when im with my friends or i stay over their house they always ask me if i want something to eat and i have to point out to them all the things i cant eat! but ive got the hang of it now, im greatful i dont have more allergies. its pretty easy living with it once you know how.


(ktbabyx33) #11

I have both diabetes and celiac!!!! lol. Im 15 years old and i got diagnosed with celiac disease a few months after i got diagnosed with diabetes. Its pretty easy to cope now, but oh who am i kidding.. celiac disease sucks. I mean, ive found a lot of foods i can eat and that i really enjoy buts its just really hard being a teenager that cant eat anything with wheat in it! like when im with my friends or i stay over their house they always ask me if i want something to eat and i have to point out to them all the things i cant eat! but ive got the hang of it now, im greatful i dont have more allergies. its pretty easy living with it once you know how.


(puns_and_roses) #12

The gastroenterologist I went to said it was all in my head, but I get really bad symptoms for about 3 days after I eat gluten. So I've self-diagnosed it, but don't really want the biopsy to prove it. Anyway, the symptoms are stomach ache, irregular bowel movements, excess gas, and with prolonged gluten intake, fatigue.

I've been going without gluten as much as I can for about a year and a half and it can get a bit tough every once in a while. My friends know, so they're pretty good about not taking me to a pizza place for dinner and stuff like that.

And one thing about me, I have no idea if it works for any other girls, but the week before I menstrate, I can eat gluten for a few days. So when that cookie looks really good, I can eat it. But I don't go overboard on gluten. So try that and see if it works for you.


(Dillripple) #13

I feel I have it also. Im asking to be tested the next time I get blood work done. I have all the symtoms Carrie mentioned too. I wonder why it hits t1's alot. You would never think your pancreas could mess you up so bad.


(Monique H) #14

Book-larnin' Mama, here again.  Straight out of my d-care class:

1 in 20 T-1's also have celiac disease.  Among the general population the figure is 1 in 250.

Treatment: gluten-free diet. 

Signs and symptoms:  diarrhea, loss of appetite, weight loss, failure to grow, irritability (sometimes the only symptom in children), fatigue, depression, anemia, skin rash, unexplained low blood sugar.

If anyone needs some help with the gluten-free diet thing, please contact me.  My good friend has done just about every restrictive diet on the planet, including the "no gluten, no dairy, no everything" diet (I can't remember the real name right now) to help with her RA and her kids' sensory processing issues.  If anyone knows how to make a gluten-free diet work, this lady does, and she's a gem about sharing information :)

Mo

 


(Savs) #15

I'm not technically celiac - but I was told I was "borderline"

in other words, some glutens affect me more then others

As far as symptoms, I remember feeling really sick after breakfast (I usually only ate toast) and a pinpoint rash.


(kcg13) #16

I was diagnosed with diabetes 4 years ago and celiac 3 years ago. I didn't have any symptoms when I was diagnosed but am affected by it now. The diet is pretty hard, but I found it to be the worst when I thought about it in terms of "I can never eat gluten again" and when I would think about how I couldn't eat a lot of my favorite foods anymore. I find its a lot easier now to take things day by day and there are a lot of great gluten-free substitutes and recipies out there. I think its hardest to eat out since you don't know exactly whats in the food or how its prepared (or if there is anything that you can eat) but a lot of restaurants now have gluten free menus if you ask for one. I actually really enjoy playing around with old recipies and making them gluten free now!


(caljosmom) #17

Gina, I realize this is an old post, am wondering if you have celiac? My 4 year old was dx'd T1 in Dec 2007 and with celiac in Mar. of this year~ it sucks and I can't seem to keep her sugars anything close to normal. We had awesome control of her diabetes until January of this year, her A1C was 7's. Its now 10. We are having a really hard time with it all. Right before she was dx'd celiac, she was hospitalized 2 times due to throwing up. She had had a couple times of explosive diarreah and always ate. Each incident didn't raise flags but when we were trying to figure out what was happening to her, we started adding things together and had her tested. Her test came back positive, ridiculously highly likely, for celiac. By the time we got the test back, she had gone into DKA and was in picu. scary. They were still going to send her home on regular diet and do the biopsy a few weeks later, I fought the doctor and said I didn't understand why if they know whats making her sick, or are reasonably sure of whats wrong, why they wouldn't just do the biopsy and start her on gluten free in the mean time. They thought I was crazy but I kept thinking how can this be ok, its like saying I know it will make her deathly ill but I'll make my kid drink bleach anyway!!  Anyways, I got what I wanted, probably so they didn't have to listen to me anymore, and the biopsy came back positive for celiac sprue. It has been a nightmare since! I have alot of questions that not even doctors seem to be able to answer, but if there is anyone out there who is coping with both please message me! I am desperatly looking for people who are in our boat! We are currently waiting for a solid thyroid diagnosis. They know something isn't working right but aren't sure what... I am so tired of my baby's immune system fighting her!


(ecebarn) #18

My son was diagnosed with T1 Diabetes in July and now diagnosed with Celiac in mid September (a week ago).  He's done great dealing with the diabetes.  It hasn't bothered him a bit.  However, this new diagnosis has hit him hard.  The doctors have told me that my other son and I may very well have Celiac too and this made my son hopefully.  Sounds awful, but he just doesn't want to be the only one with all of these problems.  I haven't found anyone locally that has either of these diagnosises let alone both so I'm definitely thankful for this website!!


(system) #19

i have both.

i was dxd with t1 in 1989 and celiac in 2002. my doctors speculate i had celiac since the age of 2 (undiagnosed) and the unchecked autoimmune response from the celiac may have lead to the diabetes. there is further research going on, but there is speculation this could be the case for many diabetics.

i was horribly sick when i was finally dxd with celiac. my iron was 1% above the need for a blood transufsion and because of it my bone marrow stopped producing red blood cells. the RBCs i had were deformed and inefficient and dying off quicker than normal. i also was severely malnourished because of vitamin/mineral deficiencies and the inability to absorb nutrients. my senior year in high school i lost 30 lbs and my hair started to fall out. my muscle began to waste because of protein deficiency (PEM) which made me very weak. i couldn't digest milk (still have some troubles with it). i still have a few problems with protein deficiency. i also started to develop tumors in my stomach and small intestines (long-term effects of undiagnosed celiac).  i had 4 endoscopies and a blood test.

my case was obviously very severe and made me very sick. there are 5 stages of damage and i was at stage 4 (stage 5 is irreversible damage/stomach cancer). most of my damage has been reversed through following a gluten-free diet, however i still have a few digestive troubles. for the most part, i am pretty healthy now. i'll still have a tTG test every year, but i refuse to have any more endoscopies unless the blood test shows abnormal results. i've had over 20 surgeries (not all celiac related, though) and refuse to add more to my list.

symptoms are typically GI distress (can range from diarrhea to constipation, nausea, vomiting), vitamin deficiencies, and low iron levels. for some, there is also dermatitis herpetiforma (sp?) which is a red, itchy, bumpy rash on the elbows and knees (typically symmetrical across the body). it can be mistaked for psoriasis or eczema (sp?). celiac is often misdiagnosed as crohn's disease or irritable bowel because the symptoms are so similar. also, n/v/d is a common symptom of MANY ailments, so celiac is often overlooked or missed. it is one of the top 10 misdiagnosed diseases in the country. in europe, celiac is extremely common. many americans have european ancestrage (i think i made up a word), so they have the genetic predisposition for it (my family is italian--where celiac runs rampant). in the US, celiac is diagnosed about 1:4500 people, however it is estimated 1:133 people actually have it.

also, those who have been diagnosed with 1 autoimmune disorder (such as diabetes) are at a much higher risk to develop other autoimmune disorders (such as celiac).

can you tell i've written a paper about this? haha. i also lead the celiac support group in my college town where i currently work. it feels good to reach out to others. at first, celiac seems overwhelming, but there are lots and lots of gluten-free substitutes available. of course, nothing is as good as a nice wheaty meal, but celiacs eat very well. :o)


(caljosmom) #20

Celiac hit us very hard too! CJ's diabetes was under control until last November, when the celiac symptoms reared their ugly head! :) Now we can't seem to pull it together! CJ is only 4 and it stinks to not get oreos when everyone else has them~ I realize they've come a long ways in recent times but it still just isn't the same! I was also told the rest of our family should be checked, however, none of us have symptoms of celiac and no one else in our family has diabetes. CJ has done very well with everything because she remembers how sick she was when we finally got a dx. so she is very careful about food. (She ended up in the PICU at dx in DKA...I still had to fight to get her the biopsy for confirmation. They were going to send her home on normal diet until they could squeeze her in to surgery. I told them that I refuse to take her home until she had the biopsy because to me it was like saying that I know bleach makes you sick but go ahead and drink it anyways! It didn't make sense to me! They also need more info, like when you get dx'd with T1 and they have classes and books and everything you need to take care of it and don't let you leave until they know you know how to take care of it!   They have almost no info on celiac readily available and the websites are not easy to navigate. I was lucky that I knew a FNP that has celiac and i made a appt to talk to her~ she was my saving grace! After living gluten-free, which our whole family does at this point in our home because we are afraid of cross contamination and she's 4 and that is just not fair for her, since March, we are still learning.