dm & cd

[snydermom]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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! :rolleyes: 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! :whistling

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]

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]

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]

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

[HeatherP]

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

[snydermom]

Heather -

She sounds good ... keep at it and don't let them give you the run-around. If you had a positive test you should know WHY - flu shot or not.

If pooping in a baggie is what it takes ... go for it!!! :cool:

Too many things are atributed to "oh, you have dm so that's it". Gag! I still think you should have an gastroscopy ( the upper one) but that's me. It's just too easy of a test to NOT to after even one positive.

I hope you and your hubby are enjoying that wine now!

More good luck and I'll keep watching. Beth.

[Andrea]

Yeah, i think she is handling it pretty well. I still think you should find out what tests were done and what the results were. And make sure when the tests are repeated that you have these tests done (at a minimum):

Anti gliadin IgA (very specific for CD, but not a 100% sensitive test)
Anti gliadin IgG (very sensitive, but not very specific for CD)
tissue transglutaminase (TtG) (indicates intestinal damage)
Total serum IgA (to make sure that you don't have a deficiency wich could lead to a false positive in the anti-gliadin IgA test)

Andrea

[HeatherP]

Hi Beth, hi Andrea!

Ok, this is what my lab slip says (word for word):

antigliadin Ab IgA IgG
stool fat

Hope you and your families are well and happy!
HeatherP

[snydermom]

Heather - I'm assuming these are the tests ordered & not the "results"! Andrea will surely be back soon to let you know! Keep at it and don't take no for an answer! Beth.

[HeatherP]

Hi, Beth, and thank you - yes those are the test orders. I'm very interested in Andrea's reply, although I think the dr isn't doing all of the tests - she's suspicous of a false positive. I hope she's right!

Take care, and thanks for your support-
HeatherP

P.S. I think the only test the endo did was the IgA or IgG, not both or anything else. Hey Andrea - how's the weather in Paris?

[Andrea]

Hi Heather,

The weather in Paris stinks. It is November - we don't get to see the sun in november here. But can't complain too much we had a LOT of sun from february to october.

The test that HAS to be added to that list is the Ttg. Otherwise you are not really testing for celiac disease. There are very few false positives out there, false negatives are more likely. I will send you a link later in the day for info you can give to your doctor. A total serum IgA is a good idea too to make sure you aren't deficient (since lots of people with CD are, and it would make the AG IgA a false negative).

Andrea

[HeatherP]

Hi Andrea!

Sorry to hear the weather sucks.

Thank you for the advice - I will call my dr tomorrow to see if she'll add the tests you mentioned. Since I can't go in there and twist her arm behind her back physically, I can't promise anything, but I feel comfortable asking her about it. I will look for the link you mentioned when you post it. Thank you once again for your input and support. I hope tomorrow is a better (weather) day than today!

Take Care,
HeatherP
>^.^<

[Andrea]

Hi Heather,

Here are links to two of the more up-to-date articles on celiac disease these days:

current approaches to diagnosis and treatment of celiac disease (http://www.celiaccenter.org/Articles/celiacgastro.pdf)

recent developments in the pathogenesis, diagnosis and treatment of celiac disease (http://miranda.ashley-pub.com/vl=2412782/cl=32/fm=docpdf/nw=1/rpsv/cw/apl/13543776/v12n1/s4/p45)

The tests that your doctor ordered are 2 of the 3 that we knew about five or six years ago. Since then, the tTG has been developped and is much more specific for celiac and also a more sensitive test than either of the other two (which means less likely to have false positives or false negatives).

I really hope that you don't have CD, but if you do, you are far better off knowing it now and treating it now because undiagnosed and untreated CD can cause lots of problems down the line that just aren't worth it.

Andrea

[HeatherP]

Hi Andrea, Hi Beth.

Well, the news ain't good. The tests all came back positive for celiac. The referral to the gastro doc and the dietician are in the works - I should have them by Friday. I also get to change gp's (long story) and I'm thinking I'll probably change endo's as well. I don't mind being tested for stuff, but tell me what you're testing for, for Christ's sake!

So for now I'm going to continue to enjoy my wine, and savor my grains and all their by-products!

Hope you're both well and happy,
HeatherP

[Andrea]

Hi Heather,

Sorry to hear it is positive. If it is any consolation, you know that Beth has just been through the newness of a celiac diagnosis and transition to a gluten free diet and i have been living gf for over 5 years. If you have questions, you know where to come. And i can add that in all honesty, i don't find living gluten free that bad.

At home i simply don't have gluten in the house (except for when my boyfriend buys cookies or a loaf of bread), so barely have to worry about cross contamination and there is almost nothing i "can't eat". Going out becomes a bit of a song and dance, and it is strongly recommended that you don't go to restaurants in the first few months of diagnosis so that you maximize healing before you take on that adventure. Unfortunately, eating out is always risky. Then comes the eating at friends or relatives houses. That can be easy or difficult depending on how your friends and relatives react to your new diagnosis.

I have had good luck and most of my friends have been very willing to learn how they need to adapt their cooking to make sure it is safe for me. I have had a bit more trouble with family, but not too bad. We were at my aunt and uncle's for dinner one night and as we were halfway through the meal my uncle announced that the reason the roast was so tender was that it was marinated in BEER! My mum and i stopped eating. But too late. The damage was done and we both got sick. The lesson is that we ALWAYS have to ask questions about how food is prepared and what ingredients are used.

Anyway, i hope you are feeling ok and that you are able to make the transition well. Don't be surprised if the dietitian doesn't know much about a gf diet. If you take some things in to her that you have printed off the internet, you will probably teach her a thing or two about CD.

Good luck.

Andrea

[snydermom]

Heather - Well, rats! I really had my fingers crossed! This house is only a 6 wk old baby with this so you'll have lots of sympathy.

Repeat after Andrea & me ... it is WHAT I eat, it is WHAT I eat, it is WHAT I eat! Think pure basics - meat, veggies, fruit, potato, rice, dairy, eggs, spice. (Ha! Hopefully you have no other food allergies.)

I agree with Andrea regarding MOST dietitians. Ed's told him to "watch" and "limit" his gluten. NOT!!! Then I found a great sprue dietitian & we were on our way.

There is a great CD forum at www.delphiforums.com Choose Health & Wellness on the left & you will find the Celiac site easily. Don't pay attention to all of the advanced features you can get if you pay for them. The free sign-up is all you need. I think there are people in your area on this forum so you should be able to get some help with docs, specialists, stores, restaurants, etc. I don't know if you cook much from scratch, but this site has a section very heavy into recipes.

You're going to deal with reams of product lists in the beginning and a trip to the grocery store will make you nutso paging thro looking for specific brands and labels! But even after just 6 weeks, my pea-brain is beginning to remember safe brands and specifics.

my eMail is snydermom@netzero.net

And to anyone else out here - especially T1 - with odd stomach/gastro problems .... PLEASE ask your doctors about Celiac Sprue and DON'T TAKE NO for an answer regarding testing!

AND REMEMBER - 99% of wine is gluten -free and Sutter Home & Gallo are definately on the OK list! :D

[HeatherP]

Thank you both for your replies and support, and encouragement. Right now I'm just thinking about all the stuff I can't have - not just breads and the like, but I know that gluten and other products are used as thickening agents and such, and very common ingredients. What a drag. I've had some time to accept it, and the meeting w/ the dr was expected, but still no fun. My husband and I enjoy Mexican food every Saturday nite. That's pretty much guaranteed out of the question in the future. It's just that as a diabetic there are already so many restrictions in my life, and now I've got more piled on top of that. I don't feel like I can ever go anywhere for a meal ever again, 'cause it's not just the foods, but what they're prepared with. I don't want to stick anybody having to go thru the trouble of cooking for me.

Anyway, thanks again, I'm sure I'll be looking at the info you posted, but I'm just trying to take it one step/day at a time for now.

Take Care,
HeatherP

[snydermom]

<<My husband and I enjoy Mexican food every Saturday nite.>>

Once you get used to things & into it, you'll be surprised at what you CAN have. Tons of corn tortillas are a-ok & you'll soon be making BETTER Mexican than now!

And, Heather - going out won't stop! After you get the hang of things you'll find where you can & can't eat OR you'll bring it along or eat first and then go & enjoy the company along with your wine.

I'm sure it's going to take awhile for your appts - don't PIG completely on gluten, but since you don't have a lot of problems now ... enjoy your holidays as usual and don't worry about it! Set Jan 2, 2004 as your Start Day. ;-)

Let us know your appt dates and we'll know when to watch for you! Beth.

[HeatherP]

Thanks, Beth.

I hope your Holiday Season is a happy one for you and your family!

HeatherP

[Andrea]

Hi Heather,

Your sentence about the mexican food caught my eye, and i laughed when that was the first thing Beth commented on too. Mexican food is about the easiest thing to eat when you are gluten free. There is so much in mexican cooking that is based on rice, corn and beans. No gluten there! You just have to stay away from the flour tortillas.

I also agree with Beth that if you don't have any symtoms of the CD, you may want to take the next 3 weeks to do all the research you can, while enjoying your holiday season without the stress of a brand new gluten free diet. By this time next year you will be an expert and will be able to do the holidays gluten free no problem. If you have no symptoms, 3 weeks won't make a difference in the grand scheme of things.

My mum also has CD. Last year, her next door neighbour was diagnosed about 2 days before christmas. Even though she wasn't feeling that well, she decided to start her gf life in the new year because the christmas meal was already planned, stuffed turkey and christmas cookies and all!

The forum on Delphi that Beth suggested is a good one. I have been a member since i was diagnosed almost 5 and a half years ago. They have relatively updated lists of foods that are gf. I am not in the US so they don't really apply to me, but if you are in the US they can be especially helpful when you are just starting out and want to cry when you are doing your grocery shopping because you don't know what brands are safe. They also have a ton of great recipes and great cooking tips.

Originally posted by HeatherP
Right now I'm just thinking about all the stuff I can't have

That doesn't exist in my vocabulary. There are very few foods that i "can't" eat. I eat bread and soups and cookies and pasta and pizza and chips and mexican food and casseroles and chocolate and grains like rice, quinoa, corn, kasha... Much of the baked goods i make myself, but you can buy gf baked goods from lots of different companies these days. I make it myself because I enjoy baking and experimenting in the kitchen, but also because what i make is better and cheaper than what i can buy.

May the gf force be with you! You will get there - don't worry!

Andrea

[HeatherP]

Hi Andrea, Hi Beth!

I hope your holidays were happy.

I thought I'd update you and ask your input.

I've been to the gastro doc, and he sent me for more blood tests:

tissue transglutaminase
anti-endomysiol ab
anti-intrinsic factor ab
anti-parietal cell ab
anti-thyroglobulin ab

Plus, he wanted me to do a Schilling Test, which determines where the absorption of b12 deficiency is taking place, my stomach or small intestine. (have had this for around 4 years)

I cannot find any place to do one - apparently the materials for the test aren't available in my area. My endo said that Stanford does them, but I called today and was told they don't.

I have another appt w/ the gastro doc this afternoon, I'm hoping to get the test results, and I'm assuming he'll want to talk about doing a biopsy (assuming they're positive). Even if I could find a place to do the Schilling Test, it would just delay the biopsy more, and I just want to get on with it, and get off the gluten as soon as possible. I know that any invasive procedure has risks, and they'll probably give me steriods to avoid a low during the procedure, but I don't want to keep going on this way.

Have either of you (or actually Ed) had the schilling test? Is it really necessary? (which may be mute if I can't find a place to do it) Am I wrong in wanting to get on w/ it?

Thanks,
HeatherP

[snydermom]

Heather - Jeeze ... don't DO that to me! Since your appt is later the same day than your message, I'll be hanging on this thing waiting for your results! :rolleyes: And SF is 4 frickin' hours earlier than Pittsburgh!

I have no clue what a Shilling test is. Ed's B12 is within the normal range ... haha ... all of his vitamin & nutrient levels are ok so I can't figure out why he can't gain weight. But it seems kind of stupid for your doctor to tell you to have a test when THEY don't even know where you can have it done! And I sure would have thought the SF area would have everything available there is!?!?

If you've been eating gluten all of this time and he DOESN'T tell you to have a biopsy ... INSIST on one! With your 1st bloodwork coming back so positive, you want all the results you can get to use for comparison in the future. Once you go total 100% gf, your villi will heal (and future bloodwork will show negative) and then NOBODY will believe you .... a-g-a-i-n!!!

This diet (eating style, as I prefer to call it) really isn't so bad. I found it 1000 times easier to just go gf at home myself rather than keep separate foods & split the darn kitchen up. Bread is the biggest challenge - the gf ones pretty much HAVE to be toasted and taste different.

You will probably go nutso at first trying to figure out the brands, ingredients, names etc etc. Try to remember ... everybody ELSE did, too! And we've got it a whole lot easier now that all of these good people have done the research and leg work for us!

And regarding the carb ratio, I've found we have to pay more attention to Ed's bg #'s but the two diets aren't really that incompatible. If I'd cooked so healthy years ago, we wouldn't be at this point now!

I'll be watching for you later! Beth.

[lgvincent]

Yes, it looks like an area with the population the size of San Francisco would have every type of medical procedure available.

[HeatherP]

Hi Beth - sorry to make you sit on the edge of your seat!

The blood test results came back mixed. The ttg, which is the most sensitive, came back negative, but since my IgA & IgG are positive, it doesn't jive. SO, the gastro doc wants to do a barrium xray since I can't get a schilling test. His office will call me to schedule a date - oh boy, I just can't wait! He's reluctant to do a biopsy if it's not necessary. The xray will help him to see what's going on in my digestive system. He seems to be concerned w/ checking all the possibilities, and while drinking barrium doesn't seem like a lot of fun, it beats the **** out of an enema!!!!!!!!

Beth - a schilling test is complicated, but basically it indicates where the b12 defficiency is originating: if my stomach isn't making a certain chemical to make my body absorb it, or if my intestine is malfunctioning (which would indicate sprue) and not absorbing it.

According to the gastro doc, I shouldn't even take my Lantus that morning, which I don't think is a good idea. I will be consulting my g.p. and endo for their opinion.

Beth, as far as Ed's weight goes - I don't know what to tell you. I'm carrying around about 30lbs more that I need, if I could send them I would! I'd suggest more carbs, but if he's gluten free, then no pasta and breads. Ugh!

Thank you all for your support,
HeatherP

[snydermom]

Heather -

If sucking Ed's toes would help, I'd do it! But it won't and everybody reacts differently to different problems. Thanks for your concern on that front! We just plug away one day at a time.

I do NOT understand your doctor's reluctance to do an endoscopy. NO OTHER TEST will show your intestinal villi - especially while you are still glutened. And they can use the term "invasive" all they want ... no prep, light anesthesia, out patient, no after effects. Any other kind of "x-ray" will not show your villi. (Jeeze - they do an edoscopy if they are looking for acid relux, hialata hernia, gastro problems, etc ... what's the big deal.)

The tests he wants for your B12 are understandable and barium is not so bad as it sounds ... surely better than some other test preps! ;) All barium prep contains is drinking a bunch of chalk tasting crapola (Ed likens it to a couple of bottles of Myalox). It will come out the other end the next day and you'll be none the worse. But I don't understand why he thinks that's any kind of a celiac measure.

I can not figure it out but will get off my soap box now.

Regarding your Lantus ... Take it with you and alert the staff. They will watch your bg and give it to you if necessary. Most don't know celiac from a hole in the ground but they DO know diabetes.

Good luck! Beth.

[Andrea]

Heather,

I understand how frustrating it can be when tests are inconclusive. I am glad i skipped the blood tests altogether and went straight to the biopsy. About whether or not to do the biopsy... The blood tests can show a likelyhood of celiac disease, but only the biopsy can eliminate is as a possibility. It isn't such a bad test to do either. They usually give a shot of Versed and you don't remember a thing.

I have never had a Schilling test either. I don't even think they even tested my B12 levels when i was diagnosed, let alone its actual absorption. It doesn't sound like a bad idea, but it still seems simpler to go straight to the biopsy rather than doing 10 more tests to see that in the end you need to a biopsy anyway!

Another test you should have done is bone density. It is easy, fast, completely pain free and can suggest you have been malabsorbing your minerals if it shows a decrease in bone density - which is particularly significant when you are at an age where you shouldnt' have any bone loss.

Yet another significant test could be your hemoglobin levels (not hemoglobin A1c, just the amount of hemoglobin in your blood). If it is low, you are either losing blood or not absorbing iron. If you are not bleeding unusually, then the problem is in the absorption.

On the topic of Lantus. I agree with you. I think the gastro doc is wildly over-precautious. Of course you should take your Lantus that day. Even if you are not eating, we all need a certain amount of insulin to live. Talk to your endo though about how much to decrease the dose by. Everyone is different and it will depend on how much you take and what your blood glucose levels are normally, but i would think that a decrease of 25% of the Lantus would be plenty conservative. You want to avoid going low, but you don't want it to take 3 days to get your blood sugar back down after not taking your lantus for 24 hours!

but if he's gluten free, then no pasta and breads. Ugh!

What do you mean? I eat pasta a few times a month and i have bread for breakfast just about every morning. I even had a couple of beers this weekend. All gluten free, of course. There is almost nothing that can't be made gluten free. I know, i am really stubburn. But I refuse to give up stuff. I didn't change my eating habits when i was diagnosed with diabetes either. I just started counting my food so that i can calculate my insulin doses.

I hope your GI starts listening to you. It is your health. It seems strange that he is the one to make all the decisions about it!

Good luck,
Andrea

[HeatherP]

Hi Andrea! Hope you're well. As far as no pasta & bread on gluten free, I just meant that it may not be that tasty (I'm a picky eater myself) and maybe Ed isn't all that crazy about it.

As far as the xray goes, since the blood test results are mixed (stool fat came back as neg) he's not sure it's celiac-sprue. I guess watching the barium go thru my system will help them see if there is another problem going on. Or indicate more testing is necessary. He says if there's nothing on the xray, then to test periodically to see if anything changes. I don't know. I'm tired. This guy has a reputation for being a good doctor. I guess I'll just go w/ the flo for now.

Thanks to you both,
HeatherP

[Andrea]

Just for a positive spin on things...

I can make any gluten free food taste as good or better than its wheat counterpart. When i make bread at home, my boyfriend (who is french and grew up on the increadible baguettes that they make here) is the first one to ask for a slice. He loves it. I make cookies and cakes all the time to share with friends and most people come back for seconds.

Gluten free food is not the same as gluten-full food. It is made with different ingredients so cannot taste identical. But that doesn't mean it can't also taste great.

A common complaint of people with CD is that people who find out about our dietary restrictions often react very strongly with exclamations like:
"Oh my god, i would die if i couldn't eat bread"
or
"Oh, you poor thing, you can't eat ANYTHING!!"

My reactions to statements like that are that i WOULD die if i ate bread made from wheat, and that actually, i eat very well - do i look like i'm starving to death? [I can't show a picture here, but i promise that i don't look like i am starving to death!]

I still question your doctor's attitude towards this. It seems strange to me that your blood tests have shown that there is a possibility that you have cd, and then the doctor decides not to do the only test that would confirm or exclude the diagnosis. There are lots of "good doctors" that know little about the new advances in celiac disease research over the past 5 years and still think that it is a rare disease that only affects children and people are as skinny as Beth's Ed.

Good luck with all these tests. I know how tiring it can be to search for a diagnosis.

Andrea