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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Ongoing Symptoms - Always Thirsty & Hypoglycemic Symptoms?
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12 posts in this topic

So I should start with the fact that I haven't been diagnosed (yet) with celiac. My biopsies from last year are being looked at by another, more knowledgeable GI doctor and he hasn't gotten back to me yet. From the endoscopy report, he said it's most likely celiac. Anyway, despite not having an official diagnosis, I went gluten-free last year and pretty much all of my symptoms have subsided.

Here's where my question comes in. Before I was gluten-free, I lost my appetite. My stomach was in pain/gassy/bloated all of the time that I just didn't really eat that much, and plus I wasn't all that hungry so it wasn't a big deal. I didn't lose LOTS of weight, probably only 10-ish pounds over a period of 5-6 months. Currently I'm 140lbs, but I got down to about 132lbs and I'm 5'5''. I was never emaciated but my body has an athletic build so 132 was pretty skinny for my body. Right before going gluten-free, I started to become ravenously hungry and was ALWAYS thirsty. Thirsty to the point where going 30 minutes without drinking water was hard. I think this was probably due to the malnutrition and my body not absorbing anything (??)

At first when I went gluten-free, my hunger leveled off and my thirst decreased (a little). Also, I had missed my period for about 5 months pre gluten-free and went to my PCP, who said that I may have PCOS and mentioned something about insulin resistance?? (I should say that before going gluten-free, I was in grad school and crazy busy so often had cereal for breakfast, snacks, and dinner. I ate a lot of fruit and veggies, but also went through boxes and boxes of cereal. It was seriously as if my body was addicted to cereal....which makes me think I possibly made my body become insulin resistant??) Since going gluten-free, my periods have returned and are mostly normal (just a little light) and my GYN never said anything about PCOS at my exam a few months ago, even though I mentioned my PCP said something about it.

So anyway, over the past few months, I've noticed that I have been experiencing almost hypoglycemic symptoms when I don't eat. I am getting hungry more often and if I go a couple hours without eating, I sometimes get shaky, very hungry, weak feeling. I'm always thirsty and I go to the bathroom a lot, which I know are some diabetes symptoms. Isn't diabetes and hypoglycemia on opposite ends of the scale? I don't think I have diabetes, but the always being thirsty thing makes me nervous. Plus, I have a DQ8, which I was reading about the correlation with diabetes. Like I said before, I'm not overweight, I'm a pretty normal weight for my height and I'm 26 years old, so I'd think that I might be a little old to just be developing type 1? Also I'm not losing weight, which I know is a key symptoms of diabetes. Do you think I caused these symptoms because I was eating so many carbs? Now my diet is much more balanced and I do eat protein with most every meal.

Any ideas/comments would be greatly appreciated! Thanks for your help!! And if you have any more questions, I'd be happy to answer them, as I know there are things I left out....

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Diabetes can occurr at any age. Don't let anyone tell you that you are too old or too young. I was litterally laughed at when I was your age for suggesting to my Doc. that I might have blood sugar problems. He told me I was too young. You also don't have to be overweight. I am quite thin and so was dismissed because of that as well. People don't always fit into the convenient well-known boxes. We could go back and forth with your symptoms and possible causes just like you are doing yourself and I did with myself in the past. You have a concern, symptoms and several risk factors so it wouldn't hurt anything to get tested. A glucose tolerance test will give you more information than just a single fasting blood sugar reading and the more information, the better for assessing and treating a problem if it is found. And early detection is KEY and makes a HUGE difference. It's only a half day out of your life and will spare you countless days of worry which are far worse-been there, done that! There are various types of blood sugar problems. A person can experience both highs and lows. Here is a resource for you to learn more. http://bloodsugar101.com/

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In addition to the great advice you have gotten I would also ask the doctor for an A1C while I was at it. It will give you an average of you BS over the last 3 months. Also how much protein do you eat. Whenever you eat a carb you should have a protein whether it is a slice of cheese, an egg, beans, a nut butter or even a handful of safe gluten free nuts. You have mentioned eating a lot of carbs and that will spike and then drop your blood sugar suddenly even if not diabetic if you are not getting enough protein.

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Thanks for your responses! I forgot to add that I am between jobs and don't have insurance at the moment...hopefully by mid June I'll have insurance again. Also, I feel like a hypochondriac sometimes...my old PCP who thought I might have PCOS doesn't even believe that I should be eating gluten free. Even with all of my symptom improvements (including the mysterious return of my period after going gluten-free!) Hmph. Through the last few years, I've learned that you really just have to listen to your body though, b/c you are the expert of your body, not the doctors. So I guess I was just posting to see if what I am describing could possibly be something and not just "nothing" or insignificant.

As for my diet, I've decreased my cereal consumption by a lot! Although, I have been eating more rice chex and gorilla munch lately. I usually eat plain greek yogurt and blackberries for breakfast, banana for snack, lunch is some sort of salad with protein (beans, eggs, tuna, etc) and fruit. After work is my worst eating time and I tend to eat little snacky type things instead of real dinner most nights. I usually eat most of my carbs during this time. I do try to eat protein though too.

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The Dr. told me he wasn't too concerned about reactive hypoglycemia, but he said if I had low blood sugar because I hadn't eaten that was a big concern. Hope you get insurance soon and get this checked out!

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I don't even know how I found this post but I wanted to make a little suggestion. When you do get your insurance - have the doc order a 5 hour fasting blood sugar test (thats what it was called years ago when I had it done). I had this problem as you do - same symptoms really. Hungriness, thirstyness, crankiness, shakiness, anxiety issues, weird feeling in throat at times when I waited too long to eat.

Anyhow - First you fast for 12 hours. Then you drink what I think is a glucose or sucrose (sugary) drink that they have for you. They will take your blood in one arm the first hour then the other arm the second hour and switch back and forth for 5 hours. In my doctors practice I waited out in the waiting room this whole time so you would want to bring things to do. They will take your sugar measurements each hour to see how your levels look and diagnose hypoglycemia if your sugar gets too low. For me they stopped it at hour 4 because of how emotional and shakey I was getting. I was almost crying and just felt very nervous/shakey. I think my level was only like late 40's but this is still low.

Even with a diagnosis of low blood sugar they will most likely just tell you to see a dietician to manage it. The dietician will guide you to eating small meals every 2-3 hours and having protein at each sitting to balance/level out the sugar. My family knows now if I get cranky...it's time to feed me. And if I had an all carb meal I will be very foggy and out there. I must have the protein to balance things out. I do not test my blood - I just go by how I am feeling. May not be the best practice - but you an tell when low sugar is getting bad. The hunger is the first sign then the mental and physical will start.

Good luck and hope you feel better soon!!

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I don't know if the thirst and hunger/weakness is related, but I do know that I was always hungry at first, no matter how much I ate. It gradually got back to normal after I started taking supplements - both vitamins and minerals. It did take awhile - about a year, but it did get back to what seems to be fairly normal.

As for the thirst, I was terribly thirsty for a while too, and eventually figured out it was an electrolyte imbalance. Taking potassium has really resolved it. Completely.

The suggestions regarding blood sugar swings/diabetes are probably good advice too. But many on this board have reported total resolution of diabetes symptoms after being gluten-free for awhile.

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That's exactly what I had thought/hoped would happen - after going gluten-free, my hunger and thirst would go away or decrease at least....and they have a bit. Or I should say, at least my hunger did subside for awhile but just recently I never feel like I'm full. And I used to be able to go at least 4, 5, 6 hours without eating, but now it's like if I go 2 or 3, I start to get so hungry and weak/shaky. As for the thirst, it's better than before I was gluten-free, but it still seems like I'm filling my bottle of water a million times at work and don't stop drinking until I go to bed. When I wake up, I'm often thirsty right away.

I am taking a multi vitamin because my iron levels were borderline anemic a few months ago when I had them checked. I believe all of my other vitamin levels were within normal ranges...but I had them checked about 4 months before my symptoms got so incredibly bad. I did not have them checked right before I went gluten-free. Not sure if the levels could've changed in 4 months.

Do you think I need to be taking something else? Like to balance my electrolytes? How would I know if I have an imbalance? I did notice that the other day, I became really hungry/shaky, but I was on my way to the gym (I had seriously eaten 1.5 hours ago) so I stopped and bought a gatorade. My symptoms did go away. Not sure if that's the electrolytes or the sugar? I want to get this straightened out b/c I've been overeating b/c of this and I'm starting to not feel too great about that scale!

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Better to get tested and find out that it's not that then to go undiagnosed for a long time. I'm not out to push people into thinking they might have a scary disease but diabetes/blood sugar issues go undiagnosed far too long and that's not just in my experience but is all too common. I'd like to encourage people to at least have a conversation with their doctor. But also, listen to their instincts, stand up for themselves and demand testing if necessary. It's so much more manageable the earlier it's caught. Some do get reversal of symptoms/diagnosis but for others like myself, the gluten-free diet doesn't help. My symptoms at the time I went in for testing were not severe, but based on past history I wanted to be sure and rule it out. I like you had risk factors, symptoms and concerns. It seems I ended up catching it very late. I believe I may have a slow onset autoimmune type 1. The process is very similar to celiac disease with the immune system producing cells that attack and destroy the insulin producing cells of the pancreas which can sometimes recover but cannot regrow once destroyed. As we all know autoimmune diseases like to travel in packs. I'm not suggesting that this is what you have. There are so many blood sugar issues. Diabetes/blood sugar issues are quite varied and very individual. Ravenwood's suggestion to get a HbA1c in addition to GTT is a good one. I share this information not just to help you but for anyone else who may read it. It's not something we want to think about but it is so much better to know one way or the other so that you can move forward and manage whatever shows up if necessary and prevent further damage and complications. Knowledge is power! With celiac disease we get used to figuring things out ourselves but there are alot of good tests out there that we can use to get the information we need. As others have shared, there are a variety of problems and ways to adress them but IMHO, testing is needed to definitively determine what a given individual's particular issues are.

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Unless it just seriously freaks you out, why not get a meter? You do not have to have a doc's permission or insurance or anything to get a glucose meter and do some testing on your own.

Using the info at bloodsugar101.com you can use the test strips efficiently and economically and this doesn't have to be a long term project necessarily. If lower carb eating helps, there are lots of good recipes (nearly all of which are gluten-free) at the Bernstein Diabetes Forum - non diabetics who eat low carb are welcome.

I'd want to know what that Gatorade was doing to my BG, that's for sure....

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I'd get tested asap

My son was diagnosed with Type 1 diabetes 2 years ago at the age of 31. He had ketoacidosis which is a very serious (and fatal) consequence of uncontrolled diabetes.

I don't want to scare you but honestly it needs investigating. His symptoms were 10 kilo weight loss, running to the bathroom and unquenchable thirst. He was a hair's breadth away from being in a diabetic coma

He is married so I didn't know what was going on and it was only "by accident" he was diagosed he was at a friend's house talking about how he didn't know what was wrong, the friend was a Type 1 diabetic so he whipped out his glucometer. Ben's BSL was 30 ( (3.8-5.5). He spent 4 days in hospital being stabilised

Better safe than sorry so please don't wait

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There are little "disposable" blood sugar kits you can buy at Wal-Mart (probably other pharmacies) for about $25 or less, much less expensive than a nicer permanent meter with memory. They have a limited number of test strips, but they do the trick if you just want to test your blood sugar for about a week.

You should test first thing in the morning, before and after eating, and any time you're feeling hypo.

The first year I was gluten free, I did have quite a few incidents of hypoglycemia. I'm not sure whether it's because my body was adjusting, or whether it was because I was experimenting with new types of foods and sometimes ate unbalanced meals.

You might look into a condition called reactive hypoglycemia if your symptoms come on as a delayed "crash" following sweets or high glycemic index foods (many gluten-free cookies and foods like rice pasta have a high GI).

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      I had a similar problem, I was glutened after a meal out at the beginning of April and am still experiencing problems, obviously not as bad now, but bad enough.  I have also become intolerant to  xanthan gum since, which cuts down the foods I can eat even more. I'm already intolerant to dairy, soya, and a whole lot of other stuff.  Cyclinglady is right about the auto-immune disorders, and I've noticed I have similar problems to her.  I too, eat easy to digest foods until the glutening symptoms pass. The sinus infection might also be a reaction to the glutening, it effects people in different ways.
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