Help With Some Symptoms

[aeryn]

I've had my blood test for celiac (negative) and am waiting for the biopsy, but was talking to a friend who has a lot of diabetics in his family and he said my symptoms sound a lot like diabetes. I know that diabetes is one of the "complications," I guess you can call it, of Celiac, but what if it's not Celiac at all and just diabetes? Frankly of the two, diabetes scares me more (terrified of needles.)

The symptoms that we were discussing pertain to my eating habits - I can't eat much anymore because at a certain point I feel like I will be sick if I eat anymore, but this is especially true of sugar. I'm not talking about candy or sweets, just natural sugars in food. For example I was at a housewarming party where I ate fresh veggies (carrots, celery and green peppers), these puffed stick things made from veggies, a samosa, and then steak cooked on the grill with just salt and pepper. This was eaten over the course of several hours, but by the time I had eaten the steak (which was last) I felt at the max for the amount of sugar I should eat, that if I ate anymore sugar I'd be sick. This happens sometimes, but not all of the time. Usually drinking a bunch of water helps.

Right now I can barely drink anything at all, and as a result am a bit dehydrated, but trying to drink water just makes me feel ill. Eating does too. The amount of food that I can eat at one sitting has drastically reduced. I barely managed 2 slices of pizza tonight (they weren't large slices either.) In the past I could eat an entire pizza by myself (depending on the cheese that is, given my lactose intolerance.) My dr had told me to take an acid reducer once a day for 30 days, but I had to stop after less than 2 weeks because although it stopped the stabbing stomach pains after eating, it left me with having 24/7 the "I'm going to be sick" feeling that I normally get after eating. I just couldn't deal with feeling ill all the time. I stopped taking it yesterday and the stomach pains are back, but I'd rather have those than that feeling.

Does anyone else get that feeling while eating and know you have to stop? Not sure if I'm describing it well enough. I had mentioned it to my dr because I had been concerned about diabetes but she seemed to think that I might just be sensitive to sugar changes, since I actually do keep an eye on my sugar intake and try to limit it normally. I know the only way to know about diabetes is to be tested, and I actually have a glucometer at home I could use, I'm just terrified of the results.

[psawyer]

I have type 1 (autoimmune) diabetes, and have been insulin dependent for a quarter century. I was never comfortable with needles prior to my diagnosis, and I still don't want to look when the phlebotomist takes samples for lab work. But the needles I control and administer myself are a non-issue for me.

Undiagnosed (and thus untreated) diabetes is very dangerous to your health--perhaps much more so than undiagnosed celiac disease.

[aeryn]

I have type 1 (autoimmune) diabetes, and have been insulin dependent for a quarter century. I was never comfortable with needles prior to my diagnosis, and I still don't want to look when the phlebotomist takes samples for lab work. But the needles I control and administer myself are a non-issue for me.

Undiagnosed (and thus untreated) diabetes is very dangerous to your health--perhaps much more so than undiagnosed celiac disease.

As someone with diabetes, does it sound like that is something I should reiterate to my dr and have checked out? I don't have any of the "classic" symptoms of diabetes...I'm not thirsty all the time (rarely am actually), I don't have increased urination, no weight loss or gain, no blurred vision or dry mouth (unless I accidently sleep with my mouth open, but then who doesn't get dry mouth?). I do have fatigue but is that along with the occasional feeling of too much sugar enough to be diabetic?

[Katie B]

I have to do the glucose fasting test soon to find out if I have diabetes. I think you should get whatever tests you need so that you can get to the bottom of everything and find out (glucose fasting challenge should cover it I think). I always think it's better to know what you're dealing with so you can do something about it - and lessen your anxiety about what it could be. At least if it isn't diabetes then you and your doctor can focus your attention elsewhere.

[ravenwoodglass]

If you have had any blood testing recently that was full testing, CBC etc and you were told to not eat after midnight then your doctor likely checked you blood sugar levels. That is usually done routinely when we have a physical. Keep in mind that when we are sick our blood sugars go up a bit also and that is normal. Mine does whenever I am glutened and I was falsely told I was diabetic when I had blood work done after a glutening. My doctor then ordered an A1C test, which measures blood sugar over a three month period and that was in normal ranges. If you do think you may have blood sugar issues do call your doctor and ask to be tested for it or see if the tests have already been done. I had the tests over and over again since childhood because I also felt ill most often after eating sweets. As a kid I would eat the candles off our birthday cake but not the cake, something my twin always teased about. Doctors would listen when I said food make me sick but unfortunately never thought of testing for celiac.

[aeryn]

If you have had any blood testing recently that was full testing, CBC etc and you were told to not eat after midnight then your doctor likely checked you blood sugar levels. That is usually done routinely when we have a physical. Keep in mind that when we are sick our blood sugars go up a bit also and that is normal. Mine does whenever I am glutened and I was falsely told I was diabetic when I had blood work done after a glutening. My doctor then ordered an A1C test, which measures blood sugar over a three month period and that was in normal ranges. If you do think you may have blood sugar issues do call your doctor and ask to be tested for it or see if the tests have already been done. I had the tests over and over again since childhood because I also felt ill most often after eating sweets. As a kid I would eat the candles off our birthday cake but not the cake, something my twin always teased about. Doctors would listen when I said food make me sick but unfortunately never thought of testing for celiac.

I haven't had a cbc, I was really surprised that the dr didn't do one when I had the test for celiac. Sugar in something like candy doesn't bother me - I can eat a candy bar and not feel sick. It just seems to be regular foods that make me feel like I've had too much sugar. But again, that doesn't happen often.

[Marz]

I never had a problem with sugar specifically, but for several weeks in the last few years I did have weird issues with eating. I would start eating and 2 minutes into the meal would feel "super full" even if I hadn't eaten much. It was kind of like bloating, with nausea, and I'd usually either stop eating or just eat lightly. It was never to the point that I threw up, but it definately decreased the amounts I ate.

The first time this happened, it turned out I had mild "impaction" in my intestines. At least that's what the doctor at the time told me. I was also suffering from constipation and stomach pain at the time, and X-rays were done to confirm. Fortunately that time the doctor was able to help me, and I felt much better after my "treatment".

The second time it happened a year or two later, the doctor pronounced IBS and that's when I tried going gluten free. My stomach issues cleared up almost instantly.

I'm now very surprised at how much I can eat in one sitting. I still have issues eating a lot of "carby" foods though, a whole pizza (with corn base) will still make me feel a bit ill.

So I'd advise get your sugar levels tested properly, get a professional opinion, hopefully you have a decent doctor that will do the right tests and investigate the root cause instead of just treating symptoms. It's far better to know what's wrong with you than to keep wondering and possibly be wrong

Once all tests are done, try a gluten free diet and see how you feel! You may be very surprised at how much better you feel Good luck with the testing

[RiceGuy]

Are you strictly gluten-free yet? Some of the foods you've mentioned can easily contain gluten, or can be contaminated with gluten. Even if the steak had nothing intentionally put on it, there may have been some contamination on the grill. Even regular soy sauce contains gluten. Also, some of what you describe sounds to me like you may have low stomach acid. Have you tried a digestive aid, like enzymes, HCL, and/or Apple Cider Vinegar?

I'm not a doctor, but since candy doesn't seem to bother you, it sure doesn't sound like diabetes to me.

[aeryn]

Are you strictly gluten-free yet? Some of the foods you've mentioned can easily contain gluten, or can be contaminated with gluten. Even if the steak had nothing intentionally put on it, there may have been some contamination on the grill. Even regular soy sauce contains gluten. Also, some of what you describe sounds to me like you may have low stomach acid. Have you tried a digestive aid, like enzymes, HCL, and/or Apple Cider Vinegar?

I'm not a doctor, but since candy doesn't seem to bother you, it sure doesn't sound like diabetes to me.

No, I have not gone gluten free yet because I'm still getting tests done. I haven't tried any digestive aids either. Really I didn't think there was a problem until I started getting the stomach pains. I've had gas and bloating for as long as I can remember. I've always had a stopping point with eating, where if I ate any more I felt like I would be sick (though I never have, because I stop.) It's just that the stopping point has come sooner and sooner, to the point that I'm not able to eat much anymore. The stomach pains, eating less, and significant hair loss are all recent - within the last couple of months.

[RiceGuy]

No, I have not gone gluten free yet because I'm still getting tests done. I haven't tried any digestive aids either. Really I didn't think there was a problem until I started getting the stomach pains. I've had gas and bloating for as long as I can remember. I've always had a stopping point with eating, where if I ate any more I felt like I would be sick (though I never have, because I stop.) It's just that the stopping point has come sooner and sooner, to the point that I'm not able to eat much anymore. The stomach pains, eating less, and significant hair loss are all recent - within the last couple of months.

Sudden changes or increases in symptoms are quite a typical experience for many of us. Including hair loss.

I think you have two choices at this point:

1) Put up with the discomfort and pains until you've gotten all the tests which seem appropriate. Continue eating gluten even though it may be damaging your insides, to increase the likelihood of accurate test results. But understand that many people get false negative results, even though they respond very well to a gluten-free diet.

2) Go gluten-free and see if you feel better, which is what you should do regardless of tests results anyway. But know that once you do go gluten-free, it pretty much voids accurate testing, especially after about two weeks, as it is unlikely the antibodies would still be produced in significant quantities. Many find that they cannot go back to eating gluten without a very pronounced increase in symptoms, which is often just as if not more convincing than "official" tests, and gives the person the affirmation they really wanted in order to remain gluten-free.

It is really up to you. You don't need a doctor to tell you to make dietary changes. Some feel they want/need an "official" diagnosis to affirm that gluten really harms them. To impel them to stay strictly gluten-free and not give in to temptation. Others just want to get well, and don't care what any test results say. After all, the gluten-free diet is the best and most accurate test there is, except perhaps for those whom are asymptomatic.

There is no wrong or right choice, except to disregard symptoms. Personally, I think you could try a few days gluten-free and see if it makes a difference, since the antibodies aren't expected to diminish that quickly. Though keep in mind that many need to be gluten-free for weeks or months to see results. However, if you do start to feel better, you may not want to eat gluten ever again, even if you intended to get more tests. The choice is yours.

[aeryn]

Sudden changes or increases in symptoms are quite a typical experience for many of us. Including hair loss.

I think you have two choices at this point:

1) Put up with the discomfort and pains until you've gotten all the tests which seem appropriate. Continue eating gluten even though it may be damaging your insides, to increase the likelihood of accurate test results. But understand that many people get false negative results, even though they respond very well to a gluten-free diet.

2) Go gluten-free and see if you feel better, which is what you should do regardless of tests results anyway. But know that once you do go gluten-free, it pretty much voids accurate testing, especially after about two weeks, as it is unlikely the antibodies would still be produced in significant quantities. Many find that they cannot go back to eating gluten without a very pronounced increase in symptoms, which is often just as if not more convincing than "official" tests, and gives the person the affirmation they really wanted in order to remain gluten-free.

I'm going to stick it out for the tests because I know myself, I will absolutely "slip up" unless I know I absolutely can't, plus if I am positive for it my family members should be aware and get tested too. I have decided to cut out dairy for awhile though, just in case it's a change in my reaction to lactose instead of something with gluten.