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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Sweet Smelling Urine
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28 posts in this topic

Hi all,

I've been having somewhat foul, but mostly sweet smelling urine lately....but mostly in the a.m. I did a google search and found out that it is related (or could be) to diabetes. I have gastroparesis, and polycystic ovarian disease....both of which have been linked to diabetes. I have been told in the past that I probably don't have it...but the sweet smelling urine kinda has me worried. And I basically have been reduced to eatine meat, cheese, Medallion white corn chips, soy milk, and chocolate. That is ALL that is agreeing with my stupid stomach. :angry:

Do you think I ought to be seen for this? I don't know if the sweet smell has to be frequent to be a problem, or since it's only the first part of the day it's not really a problem. "Funny" that I'm usually sickest in the a.m. though......and ever since I got the gp and celiac, I guzzle water like crazy. Me thinks something's funky.....

All opinions welcome. B)

~Brenda

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Hey,

I also have PCOS....and I pee alot when I eat gluten. I have not been diagnosed with diabetes, but the thought has crossed my mind that I may eventually get it. It is really interesting to read about clusters of diseases that co-occur with celiac, but even more interesting to hear people actually demonstrate this. Makes it all seem even more real than it already is.

:)

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Please go get checked for diabetes. My daughter has both type 1 and Celiac (we only found out about celiac through testing because of diabetes). I didn't realize my daughter was diabetic until we ended up in the ER. I am not trying to scare you, but please go get checked.

Laura

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Excessive thirst is also a major symptom of diabetes. Combined with sweet smelling urine, it is very likely that, like me, you have diabetes. Type 1 diabetes and celiac disease are both genetically influenced autoimmune diseases which often occur together. Please, get yourself tested, Brenda. It is a simple test to see if there is glucose in your urine, or excessive glucose in your blood.

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Excessive thirst is also a major symptom of diabetes. Combined with sweet smelling urine, it is very likely that, like me, you have diabetes. Type 1 diabetes and celiac disease are both genetically influenced autoimmune diseases which often occur together. Please, get yourself tested, Brenda. It is a simple test to see if there is glucose in your urine, or excessive glucose in your blood.

<{POST_SNAPBACK}>

Yeah....and I have mentioned the dry mouth feeling/guzzling water thing to a lot of docs and none of them even blinked. UGH!!! Well...I have a doctor in my old home town that I KNOW will test me. And I am going over there (it's six hours away) in October. So I will have him test me then....unless you guys think it's more urgent than that. Otherwise, I could call and have a phone consult and get tested asap. ??

Are they going to make me drink that syrupy stuff?? Is it even gluten free?? Or will they just test my blood and/or urine?? I really don't want to fast and drink that stuff....but I would if I had to. Just wondering if I can chicken out a little. :)

Thanks for your help!!! I feel better about asking for the test now. Oh...and btw, my grandmother has diabetes, she lost an ovary due to cysts, and her mother had diabetes. So...it definitely runs in my family. Oh, and my brother was diagnosed as "borderline"....whatever that means. :rolleyes:

~Brenda

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Thanks for your help!!! I feel better about asking for the test now. Oh...and btw, my grandmother has diabetes, she lost an ovary due to cysts, and her mother had diabetes. So...it definitely runs in my family. Oh, and my brother was diagnosed as "borderline"....whatever that means.  :rolleyes:

~Brenda

<{POST_SNAPBACK}>

Uhhh...by "lost" an ovary, I mean that it was taken out surgically. HAHA!! That is what she says...."I lost an ovary"....so I was just relaying that. :lol:

~Brenda

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Another thing you can consider, if you are a do it yourself type, is buy your own blood test kit and check yourself out. I bought one because I was having a bunch of hypoglycemia symptoms but was chicken about doing that glucose test, too. Sounds awful. Anyway, what I did was buy a Walgreen's store brand one - it was about $15, and some test strips and then spent two days where I was testing myself regularly throughout the day (like ever 15-30 mins) and kept a food journal at the same time. I ate normally. I could see my blood sugar climb and then after a while fall and see what foods made it go higher and what didn't affect it much. This became a really helpful tool for me when I was having a really hard time.

These days I don't use it very much, though I did buy a nicer model (one that takes less blood) and I still use it when I'm feeling out of sorts and can't figure out what's going on. It's good practice, too. Nothing like quantitative evidence to back up what you're feeling. I confirmed my belief that I am hypoglycemic (and was able to prove it to my doctor - they don't usually put much stock in hypoglycemic without diabetes) and do something about it.

For example, I saw how far down my blood sugar would fall after drinking alcohol, and now I no longer drink. It's not worth making yourself sick when you don't have to. Every so often I check now because I eat some more refined carbs than I used to but I never go above the normal range, and still tend to go too low at times.

It was more than worth the $$ for me to go out and do this.

Stephanie

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Oh my goodness, Stephanie!!! I had no idea you could go out and buy that!! Are they really accurate? Has anyone else done this?? :huh:

No need for me to keep a journal. I eat the same things every day! :angry: So they give you enough materials to test that much? Every 15 - 30 minutes is a lot. I am definitely a do it yourself person, especially since money is LOW right now. What brands did you get? And which one did you like better??

Thanks Stephanie. I really appreciate it! :D

~Brenda

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Hi all,

Do you think I ought to be seen for this? I don't know if the sweet smell has to be frequent to be a problem, or since it's only the first part of the day it's not really a problem. "Funny" that I'm usually sickest in the a.m. though......and ever since I got the gp and celiac, I guzzle water like crazy. Me thinks something's funky.....

All opinions welcome.  B)

~Brenda

<{POST_SNAPBACK}>

Have you added any new vitamins or herbal supplements? This can cause a change in urine odor - usually just once a day. Claire

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Have you added any new vitamins or herbal supplements? This can cause a change in urine odor - usually just once a day.    Claire

<{POST_SNAPBACK}>

Nope....nothing new at all. :o

~Brenda

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Brenda, the glucose tolerance test is just one way to diagnose diabetes. The oral glucose is gluten free, but loaded with glucose.

Another accepted method of determining diabetes is to measure fasting blood sugar (i.e. first thing in the morning before any food or beverage) being above a threshold level more than once. I am in Canada where we use metric units, and fasting sugar above 7.0 mmol on more that one occasion is now considered diagnostic (it used to be 7.5). The US uses a different scale and I am not sure of the conversion, but I think the number is around 100 whatevers.

Blood glucose meters can be purchased at most pharmacies, and the test strips (which are specific to the meter used) are widely available. In Canada, they cost about 90 Canadian Dollars for 100 strips (all brands are similar in cost), and my health insurance pays 90% of the cost. They are pretty accurate--they have to be since people like me use the reading to determine the required insulin dose at mealtime.

If you have type 1 diabetes and it is not treated, an emergency room visit due to diabetic coma (diabetic ketoacidosis) is in the cards. Don't wait until October. Don't wait until next week. I hope I am wrong about this, but if it is type 1 diabeties there is no time to waste.

I do hope this gets worked out for you soon. From one who has been there, the diabetic diet is a breeze compared the keeping gluten free.

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If you want to do it yourself without the cost of the meter and strips, because they can be expensive if bought without insurance. Try the Keto strips, if you are on a low carb diet this is not the way to go. And if you have a lot of ketones make an appt as soon as possible with the doctor, go to one of those walk in clinics if you have to. I am pretty sure they are readily available at most pharamacies, because of the Atkins craze. The only potential problem I can see with this is that there might be another reason the ketones are there. ( I am not a medical professional so I don't even claim to know much about ketones except that if you have diabetes you don't want them in your urine) Please don't wait too long to get tested. And tell your doctor you want to be tested, don't ask insist. The American diabetes association has a website and it lists the symptoms (you have at least two from what you have written) Take that with you if you think that will help convince your doctor. Also remind him/her that celiac and type 1 are interconnected.

My daughters doctor did the keto strip test, before sending us to the ER when my daughter was diagnosed. I have never seen a nurses eyes get that big. Within 10 minutes the dr had me on my way to the childrens hospital er, would have been sooner but I had to call my husband and the dr called the childrens hospital.

Sorry to go on and on, but if you even have a little inkling of maybe you might have diabetes go get it checked out, better safe than sorry.

Laura

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Hola -

I got my first one at Walgreens for $15 and the test strips were 100 for $40. You also have to buy lancets but they are not that pricey, something like $5 for 100. You don't have to test as often as I did - that is helpful in hypoglycemia but not as crucial in diabetes as blood sugar tends to go up rather than rapidly fall, as in hypoglycemia.

It was just a Walgreens brand one - many pharmacies have their own "house" brand. I ended up investing a little more and getting Freestyle at some point. There was a deal on that one, buy 100 test strips and the meter was free. There are often deals on these things, so keep your eyes open. People like the Freestyle and the One Touch the most, according to reviews.

I initially was going to go through insurance for this but it was a major hassle so I just spent my own money (also I have a cafeteria plan at work so I could get reimbursed for this expense).

I used to be on a couple of Yahoo Groups Hypoglycemia forums and that's when I learned about doing this myself. I had previously thought a doctor had to prescribe a meter to you. The strips are often kept behind a pharmacy counter but all you have to do is ask for them.

The benefit of the Freestyle or One Touch is it takes less blood so a smaller prick on your skin, and also they tend to be usable other places than just your fingers (like your wrist or arm or leg, etc). I found that when using the first one it was best if I used the side of my finger as then it wouldn't hurt when I typed.

I found it to be a great benefit to my health and knowledge about myself so I heartily recommend. You can even try contacting the companies themselves and see if there's a way you can get one directly through them - sometimes they give some away.

Take care

Stephanie

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Ok,

Here's what I'm gonna do....

I had told Peter in an email that I was just going to call the doc, because I didn't have the $$ to go out and get the meter, etc. But....then I remembered that my insurance doesn't even pay for that doc anymore (I will still go to him on occasion, but that would be more $$ than just getting the strips). So....I'm going to go to Walgreen's tonight and see what they have. That's the only store that I have close....otherwise, it's a long drive for me. I'll let you know what I find! :)

But I have a few more questions:

1). I'm not sure what the diff is beteween type 1 and type 2. I was thinking I would be type 2, if anything...but a lot of you had brought up type 1. ? :huh:

2.) I'm wondering if I'm paranoid about the urine smell. I mean, it seems like it smells sweet, but it's not like i can compare it to everyone elses urine smell. :lol: Ya' know? So how do I know if I'm being too high strung on that??

3.) Should I test my urine first thing in the a.m.? What's the best time?

4.) I experimented with some muffins last night that were made with soy flour. They tasted great, but the rest of the night, I felt SO full and bloated and thirsty. And during the night, I got up twice to urninate (which I n ever do), and my hands were really swollen, and was thirsty all night. Does that sound related to diabetes, or is that just me eating something that didn't agree with me?

Again, I really appreciate everyone's help. You all have been just GREAT! :D

~Brenda, who is off to Walgreen's!!

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Ok, I'm back from Walgreens. Guess what???? I got a Free Style model for only ten bucks!!! They were having a MAJOR sale!!! Yeah for me!!! :D They had another model for free, if you bought the strips....eek! I had no idea how expensive strips are!! So for now, I just have the strips that come with the unit itself. I tested twice now (first one didn't work because I did it on my arm and not much blood came out. :angry: But the second one was fine, and the reading was 106. I had just eaten a snack a little beforehand. So, that is fine, from what I understand. ? Of course, evenings are when I feel best....but I'll test again in the a.m., before any drink or food.

Wish me luck. :)

~Brenda, who is bleeding like a stuck pig. :o

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If I understand the US scale, 106 is a good reading. How soon after eating did you test? The timings we worry about are just before eating and two hours after eating. It takes at least half an hour to see the effect of most foods.

Type 1 diabetes (which I have) is an autoimmune disease like celiac disease. A reaction is triggered in the immune system which attacks the islet cells in the pancreas. Unlike celiac, the islet cells do not regenerate: the loss is permanent. In celiac disease, the villi do usually grow back, although it may take a considerable amount of time (weeks or even months).

Type 2 diabetes happens when the pancreas still produces insulin, but the body resists it and needs help. Type 2 is usually, but not exclusively, found in adults whose body mass index is high, and whose life style is sedentary (OK, forget politically correct, overweight people who don't exercise enough).

Very recently, doctors are observing some cases of diabetes where the pancreas is out of action (type 1) and due to weight and lifestyle factors the body is resistant to insulin (type 2). "Double Diabetes" is a scary thought, considering that the gluten-free diet tends to be higher in fat and carbs than a "normal" diet at the best of times.

But keep this in mind: high blood sugar is bad, but for a celiac, gluten is MUCH WORSE. If you have to choose, the celiac rule (gluten-free) must take priority over any other dietary rule, including the diabetiic diet.

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LOL, Peter! I don't like wading through all the poltically correct jargon either. :) No offense to those of you that do. <_<

Anyway, I think it was only about 20 minutes after I ate...and I didn't eat all that much. But I never do, nor can I with the gastroparesis. It seems like I eat all the time, all throughout the day. I don't really have much of a set schedule, although that has gotten a little better lately.

I will test it tomorrow before eating, and two hours after. Thanks for that info. Guess I should have checked that out before so eagerly poking myself. :lol:

OK. Type 2 is what I think I would have. I have the polycystic ovarian syndrome, and insulin resistance very often goes along with that. But who knows....I could be wrong. Type 2 is what my grandmother has also.

I'm not really all that sedentary. I have my days where I will sit a lot (I homeschool my kids), but I do take about a half mile walk every night, and I do housework too. My BMI is fine. I'm 5'3" and about 117, give or take a few pounds, depending on what time of the month it is. (Sorry if that's TMI). But I've always thought I was thin because of not being able to eat very much at a time. Not because I don't have blood sugar problems.

Thanks for the info, once again!! Can't wait until tomorrow when I get to poke myself again!!! :unsure:

~Brenda, who has now stopped bleeding but has a very sore finger (insert violin music here) :blink:

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Brenda -

You scored on the Freestyle! In the US the normal range is about 75 - 115. I was always getting results in the 70's and 60's though and thought my meter was broken so I tested my husband and he came back at 140. Then the next time, after he'd had beer and some pasta I tested him and he was 180! I got freaked - that's not horrible but it's on the high side. He usually (used to, at least) drinks about 3-4 beers a night. (BTW since then when I've randomly tested him he's been no higher than 130. I think it was a fluke!)

Look online for test strips. I ordered from this place last time, they had the best price:

http://hocks.com/Merchant2/merchant.mvc?Sc...roduct_Count=17

Probably a good strategy for now is to test first thing in the morning (fasting) and then before a meal and then 30 mins to an hour after meals. It gets easier and yeah, I've been to the point where I wonder if I'm ever going to stop bleeding.

Hopefully it will turn out you are fine and your other symptoms are just curious wonders in your life... :)

Stephanie

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Hi, my mom was diagnosed with gestational diabetes that stuck around - they thought it was type 2. They never tested her Insulin LEVEL! I reality, every time her body had a stress, i.e., getting pregnant or sick, her immune system attacked her pancreas and her blood sugar would shoot up even more, eventually to where she couldn't regulate with diet.

So what she actually has is type 1 - autoimmune. She is not insulin resistant. If you are checked for insulin resistance, be sure your insulin levels are also checked. Your glucose leves sound good though. Have you had your kidneys checked? Other autoimmune problems can go for your kidneys.

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Thanks for the link, Stephanie. I'll be sure to check it out, because I'm already almost out of strips. I only had ten, and messed up a few times. :-(

This morning, my fasting blood sugar was 82. Not bad, eh? But then, I ate breakfast, and I usually feel junky about an hour after I eat breakfast, so....I tested it, and it was only an 89. I thought I would be higher than that...aren't you suppose to go higher than six points? Then...I tested two hours after eating breakfast, and it was clear down to 69. So I am really confused. Shouldn't I be higher than that? With my symptoms, I can feel either like my blood sugar is too high, or too low. This morning, I felt like it was really low, and I was shaky, anxious, etc. This is nothing new....happens a lot. For lunch, I tested right before I ate, and was an 88. Again, didn't look too bad. Then I tested two hours later, and I was an 86. So again, I'm not going up much. But at least I didn't lose twenty points either....and I did, by that time, feel a little more stable - not shaky, etc.

So are those numbers good, or bad?

~Brenda

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Brenda, with those levels, you don't sound like you have diabetes. 82 fasting is well within the normal range. 69 is a bit low for two hours after eating, buit not alarming. None of your readings are high enough to indicate diabetes to me. But, I am not a doctor, just somebody with two decades of experience with my own type 1 diabetes.

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Brenda, with those levels, you don't sound like you have diabetes. 82 fasting is well within the normal range. 69 is a bit low for two hours after eating, buit not alarming. None of your readings are high enough to indicate diabetes to me. But, I am not a doctor, just somebody with two decades of experience with my own type 1 diabetes.

<{POST_SNAPBACK}>

No...I know they're not too high. I definitely felt a low all day. I never did get in the 90's today with my readings. That's what I thought was odd. The reading that was two hours after I ate (the 69) should have been a lot higher, shouldn't it? I found it odd that I dropped so much lower when it should have been higher.

Keep in mind, that since I felt low all day, the reading pretty much indicated that. I am interested to test it on the days where I feel it's too high. Those are the days where I don't feel like eating a thing. Today, since it was low, I ate a lot more than usual. But diabetics don't usually flip-flop like that, do they? They run high all the time??

Sorry I'm so confused and asking so many questions. You guys and gals are jewels for being so patient with me. :)

~Brenda

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Sugar levels in diabetics who are taking oral medication or who inject insulin are subject to flip flops Especially for those of use taking insulin (which covers all type 1 and a significant number of type 2 diabetics), there is an equation with four variables to consider:

1. What is my current sugar level?

2. What am I eating (in terms of carbohydrate primarily)?

3. How much fuel do I need (how much exercise in the next few hours)?

4. How many units of insulin am I taking?

Generally, we know #1 for sure from our meter, we should know #2 pretty accurately, #3 is a guess, and so if we miscalculate #4, we can end up too high or too low. More exercise, not enough food, too much insulin (or, for me at least, gluten ingestion) can lead to sudden low blood sugar. Diabetics who are controlled by diet only do not have this worry.

Hope this helps. Brenda, since you are not taking any medication to lower blood sugar, the low readings you see should be a clear sign that you do NOT have diabetes.

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Brenda, since you are not taking any medication to lower blood sugar, the low readings you see should be a clear sign that you do NOT have diabetes.

<{POST_SNAPBACK}>

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Brenda - your readings sound similar to mine. While 69 on it's own isn't particularly low, if it was 90 15 mins before or something (I'm hypothesizing) then you would feel the effects. A lot of the time when people have hypoglycemic episodes, they don't see that in their blood sugar results, because they test when they feel bad (which is usually when your adrenal system kicks in and gets your blood sugar back up to reasonable levels, which also makes you feel kind of crummy) or because the change in blood sugar levels was rapid, but the new lower number isn't as low as what is considered too low. Generally, at least for my well being, when I see myself falling in the 60's I start paying a lot of attention to my diet. Formerly, one of my favorite things to bring my blood sugar up to normal range when it wasn't doing that on it's own, I would eat a sandwich with sprouted grain bread. That seemed to hold me in the right range for 2-3 hours, like nothing else would. Of course I can't eat that now. What I try to do is eat a complex carb with a fat, like brown rice toast with peanut butter. Peanut butter is my saving grace. Also, a glass of milk (I drink goat milk) is good, has a good combo of fat, sugar and protein. But if you can't have dairy, something else would have to be used.

It does sound like you might have some blood sugar issues. It might be worth your while to order some more strips to just see how you do over a longer period of time, in case you fluctuate. Keep a journal of how you feel, what you eat, and what your blood sugars are. This stuff can be pretty convincing to doctors who might be skeptical of claims of blood sugar issues.

Take care

Stephanie

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