dm & cd

snydermom · #1 (**permalink**) 11-10-2003, 12:36 AM

Does anyone else (other than Andrea - but jump in cuz I need help) have Celiac sprue besides this house?

I find the two diets really hard to reconcile when I'm trying to get weight ON to Ed.

HeatherP · #2 (**permalink**) 11-11-2003, 05:31 PM

Hi, Beth. I found out today that I have the anti-bodies floating around my bloodstream, but I don't have any symptoms. From the info I got, it doesn't sound like much of a party.

snydermom · #3 (**permalink**) 11-12-2003, 12:10 AM

Heather - I've never heard of what you're saying. Is that like being "a little bit pregnant"?

I strongly suggest you get it checked out really well. It's nothing to mess around with and the diet restrictions makes the dm one look like a walk in the park.

Good luck! Beth.

Andrea · #4 (**permalink**) 11-12-2003, 06:26 AM

Hi Beth and Heather,

It is really really common that people with type 1 diabetes who also have celiac disease have NO symtoms of the CD. About 10% of people with type 1 have CD as well, but most have no symptoms and a large majority have no idea that they have it. I think that antibody screening (at a minimum) should be done every few years for anyone with type 1. Undiagnosed CD (whether symptomatic or not) puts you at a huge risk for anemia, osteoperosis and other autoimmune diseases, not to mention some cancers and intestinal lymphomas.

Heather, since the antibody test came back positive, are you going to have a biopsy to confirm the CD?

Starting a completely gluten free diet is a huge undertaking at first because there is so much to learn. There is gluten hidden in a lot of places that you just wouldn't expect! However, combining a gf diet with diabetes management shouldn't be that difficult, especially if you count your carbs and are on some kind of basal/bolus regime (via shots or a pump).

When i was first diagnosed with CD, i found that the CD dictated WHAT i ate (no gluten), where as the diabetes dictated more HOW MUCH and WHEN i ate. Then i went on a pump a couple of years later and the 'how much' and 'when' are no longer an issue. As long as i count my carbs right (knowing that some gluten free foods are denser in carbs than their gluten filled counterparts), and calculate my basal insulin doses accordingly, i don't find that the two diseases influence each other that much. You have to make sure that you have gluten free food around in case of hypoglycemia, but most of the food we use the most for this purpose is gluten free anyway: juice, regular soda, glucose tablets, life savers....

Beth for the weight issue, just make sure Ed is eating lots and that it is gluten free. Don't be afraid to increase insulin doses to make up for extra carbs. Make sure you stay in touch with the endocrinologist or the diabetes education centre with regards to his glucose readings and insulin doses. Don't worry if his control isn't perfect for a little while. It will get better after his absorption stabilizes. As his gut heals, he will absorb much more in the way of nutrients and he will gain a lot more easily. I gained 30 lbs in the 8 months after i was diagnosed with CD just because i started to absorb the food i was eating. (I also more than doubled my insulin intake in that period because of the food i was absorbing).

Andrea

HeatherP · #5 (**permalink**) 11-12-2003, 09:19 AM

Wow, that's a lot of information. Thank you Andrea & Beth!

My endo (actually one of his assistants) said that since I wasn't having any problems, then I didn't need to worry about it and not to make any changes. But it is good to have the test/info in case I do start having problems later on. Frankly, that sounds good to me. Are you saying that I should make changes now? And do more tests? Jeez, my husband is going to freak out.

Andrea · #6 (**permalink**) 11-12-2003, 10:08 AM

Hi Heather,

What blood tests have they done and what were the results? I cannot believe that your endo's office is giving out that kind of info. If you do indeed have celiac disease, then it is important to start a gluten free diet as soon as possible because you are truely at risk for malabsorption problems as well as other autoimmune diseases.

The gold standard for diagnosis of CD is an intestinal biopsy. This is easier than it sounds. They sedate you and stick a tube down your throat into your upper intestine and take several biopsies of the lining. Usually people don't remember a thing due to the sedation (Versed is most commonly used) and the whole procedure only takes about 15 minutes.

If you need some information for your endo or husband, i would be glad to give you some links.

Andrea

HeatherP · #7 (**permalink**) 11-12-2003, 07:00 PM

Hi Andrea, hi Beth. Well, I guess I'm in shock. After reading your post, Andrea, I did some research and it kind of freaked me out. I made an appt to see my g.p. Friday afternoon to discuss the blood test, and I'm going to ask for a referral to the gastro-enterologist for a biopsy. What a mess. I didn't even know that the last blood test I did was for anything other than an A1C and a thyroid check. I can't believe I was told not to worry about it. Our cat died last year from lymphoma as a result of inflammatory bowel disease, and I don't want to die that way. She suffered so much. I'm really glad for the information you posted, Andrea, and when I'm feeling up to it, I'm sure I'll be interested in some more info. For now, though, I need some time, and tonight I'm going to drown my sorrows in a bottle of wine..... (I read on one of the celiac websites that wine has no gluten - thank God!!!)

snydermom · #8 (**permalink**) 11-12-2003, 08:31 PM

Heather - Along with Andrea, I say GET THEE TO A DOC THAT KNOWS HIS/HER HEAD FROM A HOLE IN THE GROUND!!!!!

No symptoms ... snort! Antibodies ... snort! The pcp didn't order Ed tested. The endo didn't order Ed tested. The gastro didn't order Ed tested. I ASKED for this test and none of the above ordered Ed tested. It wasn't until I got him in the hospital that this was "standard" and they tested.

Heather - it is an easy test. There is NO prep other than no food/drink after midnite and we've all been thro that. The sedation is a breeze and it's over in 15 mins as Andrea said. In an outpatient scenario you're talking a couple of hours.

Andrea - I am not in the least surprised Heather isn't getting the right answers. God knows we didn't either! The ignorance in the med field continues to amaze me. When Ed was in the hospital they gave him french toast for breakfast. The pcp came in 1-1/2 hr later and said "you have sprue ... don't eat gluten" - end of conversation. Two hours later the hospital brought him macaroni & cheese for lunch. Go figure?

Back to Heather - You may or may not have Celiac. Hopefully you don't. But don't wait for an overdue diagnosis. When Andrea & I seem to disagree on the diet it's because of different aspects. A CD diet is difficult because of what you can't eat and what you have to watch for in processed foods and preparation. But in relationship to a diabetes diet it is not so hard.

Good luck to us all!

p.s. to Heather. Yeah, 95% of wine is gluten free so ENJOY!!!

Andrea · #9 (**permalink**) 11-12-2003, 11:01 PM

Yeah, unfortunately i am not surprised either. I spent 7 years in and out of the hospital with various degrees of pain and other instestinal symptoms and they just kept telling me it was in my head. I had one gastroenterologist and one GP tell me that i couldn't possibly have CD since i didn't have the symptoms for it. But when i looked at risk factor and symptom lists, it was essentially a check list for me. I had just about all the classic ones. Unfortunately, doctors are way undereducated about CD, which is why only 3% of people living with it are actually diagnosed. Current estimates in north america is that one in 133 people have CD, but 97% of them are undiagnosed!

Heather, just one note - it is really important that you keep eating gluten until you have all tests done. If you do have cd and you stop eating gluten, your intestinal lining can heal fast and you don't want a biopsy to be falsely negative.

Andrea

HeatherP · #10 (**permalink**) 11-13-2003, 09:08 AM

Thanks to both of you! I had a good long cry last nite on my husband's shoulder and I'm feeling a bit better. Kind of odd that I have to continue to damage my intestines for a while in order to diagnose a disease that requires that I treat them gently. Kind of like, the better b/s control you have, the more weight you gain.

I'm going to try to get thru the day without thinking about it so I can get some things done, and we'll see what happens Friday. I printed out some of your responses as well as some stuff from the Celiac websites, so that I have something to back up my requests for further testing in case the dr. doesn't think it's necessary.

Thank you both, and have a good day,
HeatherP

snydermom · #11 (**permalink**) 11-13-2003, 10:15 AM

Good luck, Heather!

What's so stupid about this whole thread is that the upper endoscopy should be given to most people anyway to rule out (or in) a lot of things. Why the medico's have such a problem with the patient asking for a test is beyond me!

Jeeze - look at some of Jon's posts regarding his son and what his doc's won't do!!!

And I personally find going to the doc is kind of like getting sent to the principal's office in grade school! All sweaty and tongue-tied even when I knew I hadn't done it!

Hopefully all will be fine and you won't have CD - Celiac - or just plain sprue (pronounced sprew) as I prefer to call it. But remember one thing ... sprue is treated totally by your food ingredients and is FIXABLE!!! It's confusing in the beginning but NOT restrictive once you get the hang of it. You simply have to find the right products that have the right ingredients. And wine is one of the RIGHT ingredients!!!!

Keep us posted! Beth.

lgvincent · #12 (**permalink**) 11-13-2003, 10:40 AM

I just went to the site celiac.com and it indicated that 5 to 10 percent of the people who have celiac disease also have diabetes and the diabetes tends to occur first.

HeatherP · #13 (**permalink**) 11-14-2003, 08:32 AM

Hi, all. Thanks Beth, Andrea, and LG for your support. I'm going to see my G.P. today, and my husband's coming with me. This dr is kind of new, although I think I've seen her before in the urgent care clinic, and she seemed nice, so hopefully things will go smoothly and I can get the ball rolling. I guess I'll let you know.

Thanks again!
HeatherP

lgvincent · #14 (**permalink**) 11-14-2003, 09:24 AM

The more I learn about this disease, and diabetes, the less I like them.

HeatherP · #15 (**permalink**) 11-14-2003, 03:57 PM

Hi Andrea, Beth, and LG. Hope you're all well. I just got back from my g.p.'s office, and I feel better about things. First, she's going to call my endo and find out why he even ordered the test in the first place. Second, she gave me another lab slip to have more blood drawn in 2 weeks - she wants me to wait because I had a flu shot just before the original blood test, and that may have been a contributing factor. She was very nice, and empathetic, and I feel comfortable with the way she's handling this. Basically, we're just double-cking to make sure it wasn't a false positive. I also get to do a stool test. Oh Goody! Anyway, if the next one comes back negative, then we'll re-test 2 months later, and if it's positive, then she'll send me to the gastro dr right away. I think she's handling this in a reasonable manner - how about you guys?

Thanks for your help and input,
HeatherP