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Hypoglycemia And Gluten Sensitivity


lea01

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lea01 Rookie

Hello all,

 

I am really emotional today...to the point of tears. I may be overreacting, but it just feels like so much is happening so fast.

To give a little backstory, about 5 months ago, I suffered a seizure and lost consciousness. While in the ambulance, I remember the paramedic taking my blood glucose (BG) level and saying it was low. I had to eat this gel-like sugar substance to get it back up. It was a very short ride to the hospital. By the time we got there, my BG was 103. I didn't think anything about it.

 

A lot of things went on...

 

As far as a I know, the seizure was not related to gluten sensitivity. But due to some other health issues and the fact that my sister has celiac disease, I decided to see a gastroenterologist to get tested myself. At the time, I had been gluten-free for a week. Of course I had to go back on gluten in order for the Upper GI to pick up villi damage if there was some. After being back on gluten for a few days, I was extremely sick so I cancelled the Upper GI and decided on an alternative testing method. I know there's controversy surrounding the stool test, but decided that was the route for me. It came back that I had a double gene of gluten sensitivity, and sensitivities to casein, egg, and soy. I've cut out all of these things and have been gluten free for about a month and a half now.

 

Fast forward...

 

I went for my annual check-up and the blood work showed my potassium was low. The doctor wanted to test again. After some time, I went back and the potassium was back to normal. She did note that my BG level was low (according to their lab).

 

This reminded me of the low BG several months ago, so I started thinking maybe there is something to it and not just a fluke.

 

I've heard of a possible connection between celiac disease/GS and hypoglycemia and / or Type 1 Diabetes. Not saying that's what it is, but...

 

I have been seeing so many doctors in the past few months and I'm fine doing that if I have to, but I'm at the point now where I don't know if I'm trying to connect things where there is no connection...if this is something I need to worry about, or what to do. 

 

I understand there are so many factors that could come into play, but I just need to hear something from someone who is not as emotionally charged as I. :(

 

Thank you.


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cyclinglady Grand Master

I am sorry that you are sick!

Too late to get celiac disease (unless you do the challenge) but you can get tested for Type 1 diabetes. A GAD antibodies test can help confirm a diagnosis. Google the exact tests required. If you want to keep track of your blood sugar for a while, buy a cheap meter and strips from Walmart and test yourself -- especially after meals. The website Blood Sugar 101 can show you how to do it.

lea01 Rookie

I am sorry that you are sick!

Too late to get celiac disease (unless you do the challenge) but you can get tested for Type 1 diabetes. A GAD antibodies test can help confirm a diagnosis. Google the exact tests required. If you want to keep track of your blood sugar for a while, buy a cheap meter and strips from Walmart and test yourself -- especially after meals. The website Blood Sugar 101 can show you how to do it.

Thank you, cyclinglady. I will do that.

nvsmom Community Regular

I've had (mild and undiagnosed) reactive hypoglycemia for many years.  It became more noticeable when I started slipping into prediabetes.  My morning fasting blood glucose was a bit high (a 5.8 or 105ish), then I would eat something and it would go higher then start plummetting.  It would fall below my starting glucose levels within the hour and keep falling until I ate again.  

 

I did a 2-hour glucose tolerance test once, and I remember my FBG was a (disturbing) 6.0, I had the glucose drink and it shot up to a 9 (160), and then had fallen to about a 4.4 (80).  They made me eat before I left because it showed no signs of stopping.

 

Part of it is that I don't handle carbs very well.  I don't know why. I can't eat many, and if I do it can't be in a refined form (sugar or flour).  If i keep my carbs down, this never happens anymore.

 

I agree that buying a meter will let you know for sure.  It's pretty interesting to see what the body does with certain foods... after you get over the intimidation factor of using a BG monitor.

 

Best wishes.

lea01 Rookie

I've had (mild and undiagnosed) reactive hypoglycemia for many years.  It became more noticeable when I started slipping into prediabetes.  My morning fasting blood glucose was a bit high (a 5.8 or 105ish), then I would eat something and it would go higher then start plummetting.  It would fall below my starting glucose levels within the hour and keep falling until I ate again.  

 

I did a 2-hour glucose tolerance test once, and I remember my FBG was a (disturbing) 6.0, I had the glucose drink and it shot up to a 9 (160), and then had fallen to about a 4.4 (80).  They made me eat before I left because it showed no signs of stopping.

 

Part of it is that I don't handle carbs very well.  I don't know why. I can't eat many, and if I do it can't be in a refined form (sugar or flour).  If i keep my carbs down, this never happens anymore.

 

I agree that buying a meter will let you know for sure.  It's pretty interesting to see what the body does with certain foods... after you get over the intimidation factor of using a BG monitor.

 

Best wishes.

Thank you for sharing, nvsmom. I immediately went out and bought the monitor. Funny...I gave birth to two babies with no fear, but when it was time to prick my finger for the test, I was sweating bullets. :)  My reading was 103...this was about two hours after eating my oatmeal and raisins, and an hour after eating a fruit strip (kind of like a fruit roll-up, but the only ingredient is fruit). I will take it again today after dinner to see what happens.

 

I am certainly amazed at what the human body does and how little control we truly have. I feel like I'm learning myself all over again.

cyclinglady Grand Master

103 is a normal reading, especially after eating just carbs! That is good news. Be sure to test when you are feeling bad. You might catch the low numbers. Remember to test at one and two hours and start counting after the first bite of food. Keep a record.

Hey, are those oats certified gluten free?

lea01 Rookie

103 is a normal reading, especially after eating just carbs! That is good news. Be sure to test when you are feeling bad. You might catch the low numbers. Remember to test at one and two hours and start counting after the first bite of food. Keep a record.

Hey, are those oats certified gluten free?

I definitely will!

 

Yes, the oats are certified gluten free. I'm so glad they exist because I've been eating oatmeal pretty much everyday for the last 15 years, and I would have been really sad to give that up.

 

Thank you so much for your input, I feel like I'm back on track now. :)


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nvsmom Community Regular

I agree. 103 is pretty good after eating carbs.  Try a whole bunch of readings over the next few days and see how you do, especially 1 and 2 hours after eating as Cyclinglady said.  First thing in the morning is a good thing to check too.  Write it all down and you'll see the patterns.

 

:)

lea01 Rookie

So, I decided to check in with my doctor because my husband and I were talking and he reminded me the first time I was told my BG was low, it was in the 60s. It was higher this more recent time, but still considered low. My doctor consulted with an endocrinologist she works with a lot and they came to the conclusion it is likely "plain" hypoglycemia or reactive hypoglycemia. @Nvsmom, I remembered you saying you deal with reactive hypoglycemia, so when the doctor mentioned it, my ears perked up.

 

She ended up doing four tests:

 

C-peptide

Proinsulin-A

Insulin-Total

Comprehensive Metabolic Panel w/eGFR

 

She mentioned if it is "plain" hypoglycemia, she will refer me to the endocrinologist for further review, but if it's reactive, we'll talk about diet change - more protein, etc.

 

@nvsmom: With cutting down on carbs, did you notice any dramatic weight loss? I ask because I tend to lose weight pretty quickly. Before I knew about my gluten sensitivity, I decided to stop eating fast food and ice cream, and just stick with chicken, fish, fruits, and vegetables. I lost 10 lbs. in 2 months. I lost another 5 the next month. I'm not trying to lose weight. I'm 5'10" and weigh about 132. So, I added some "not-so-healthy" carbs and gained back 2 lbs. 

Sammykins Newbie

I have reactive hypoglycemia, which was discovered when I too lost consciousness and had massive convulsions due to low blood glucose -- despite having a good meal three hours beforehand.

You'll need to increase your intake of healthy fats, not just cut carbs and increase your protein, in order to get an adequate amount of calories. It was eating insufficient calories that made you lose weight.

I've found it's less about low carb for me than it is about making sure there are adequate fats and protein with each meal and snack, eating about every 3 hours (during waking hours, not overnight, though if I don't eat right I can get lows around 2-3am which require fixing), and making sure that the carbs I eat aren't high GI. I also need to be careful around exercise, making sure I have something on board before I start and something to eat immediately after, but not the typical sports diet of high GI carbs as that would cause a crash. Be wary of gluten free substitute foods as they are often highly refined and low in fibre.

My endocrinologist wanted me to try an equal split of carbs, protein and fats. Apparently that's the standard treatment, but when I went down to 30% carbs I had worse blood glucose control and zero energy. I'm better at about 40%. You may have to play around with your diet to see what gets you the best outcome.

Remember that a low caused by reactive hypoglycemia is not treated the same way as with regular hypoglycemia. If you were to just pump yourself with simple carbs you'd go hyperglycemic then crash harder. I've found that a small amount of complex carbs combined with peanut butter works well for me, but everyone is different.

All the best.

lea01 Rookie

I have reactive hypoglycemia, which was discovered when I too lost consciousness and had massive convulsions due to low blood glucose -- despite having a good meal three hours beforehand.

You'll need to increase your intake of healthy fats, not just cut carbs and increase your protein, in order to get an adequate amount of calories. It was eating insufficient calories that made you lose weight.

I've found it's less about low carb for me than it is about making sure there are adequate fats and protein with each meal and snack, eating about every 3 hours (during waking hours, not overnight, though if I don't eat right I can get lows around 2-3am which require fixing), and making sure that the carbs I eat aren't high GI. I also need to be careful around exercise, making sure I have something on board before I start and something to eat immediately after, but not the typical sports diet of high GI carbs as that would cause a crash. Be wary of gluten free substitute foods as they are often highly refined and low in fibre.

My endocrinologist wanted me to try an equal split of carbs, protein and fats. Apparently that's the standard treatment, but when I went down to 30% carbs I had worse blood glucose control and zero energy. I'm better at about 40%. You may have to play around with your diet to see what gets you the best outcome.

Remember that a low caused by reactive hypoglycemia is not treated the same way as with regular hypoglycemia. If you were to just pump yourself with simple carbs you'd go hyperglycemic then crash harder. I've found that a small amount of complex carbs combined with peanut butter works well for me, but everyone is different.

All the best.

Thanks, Sammykins. You gave me a lot to think about. My first thought is if I lost consciousness due to reactive hypoglycemia rather than an epileptic seizure like my neurologist said, then I may not need to be on the anti-seizure medicine I'm on. Secondly, if it is reactive, between my gluten, casein, egg, and soy sensitivities AND changing my diet to treat the low blood sugar, I may need to consult with a dietitian. I wouldn't know where to start. I think finding the balance of eating foods that give my body the vitamins and minerals it needs, and maintaining a healthy weight are going to be a challenge for me.

 

For 15 years, I was eating junk food 3 - 5 times a week and ice cream everyday (really...everyday...5 scoops), and in that time, I only gained 15 lbs. plus the blood work from my annual appts. always came back with everything in a healthy range. It's all very strange to me.

 

I should hear back from the doctor soon. As soon as I do, I will definitely post an update.

 

Thanks to everyone for your help!

nvsmom Community Regular

@Nvsmom, I remembered you saying you deal with reactive hypoglycemia, so when the doctor mentioned it, my ears perked up.

 

Mine is pretty mild, and technically I don't have reactive hypoglycemia because I haven't had it confirmed by a doctor.  LOL  :rolleyes:

 

@nvsmom: With cutting down on carbs, did you notice any dramatic weight loss? I ask because I tend to lose weight pretty quickly. Before I knew about my gluten sensitivity, I decided to stop eating fast food and ice cream, and just stick with chicken, fish, fruits, and vegetables. I lost 10 lbs. in 2 months. I lost another 5 the next month. I'm not trying to lose weight. I'm 5'10" and weigh about 132. So, I added some "not-so-healthy" carbs and gained back 2 lbs. 

 

I've had a pretty big weight loss since going low carb (about 25lbs in 10 weeks) but I am eating at a caloric deficit and want to lose weight.

 

One thing to keep in mind with a very low carb diet is that carbs enable you to hold onto water and salt.  When one eats low carb (or very low carb like me so they are in ketosis) you will lose a few pounds of water weight very quickly, and you may get low on sodium (which makes you feel headachy and fatigued so most people need to double their sodium intake (up to 3000-5000 mg/day); increased potassium and magnesium helps with this too.  I'm guessing that at least 5 lbs of my loss is from water, maybe as much as 8lbs or so.  Just guessing though.

 

Some of that loss may have been water, as for the rest - it sounds like you need to add in more calories.  Some people lose weight easier on a low carb diet. It sounds like that is you so you probably need to up your calories by a few hundred kcals.

 

When people go low carb, you need to replace the carbs and most of us do it with fat. Add cream to coffee, eat nuts and avocado, olives, cheese, fatty meats, a bit more full fat dressing than you would normally use on a salad.  Did you up your fats and (possibly) protein when you cut out those carbs?  It is safe for most people to do so.  I eat about 5% carbs, 25% protein and 70% fat now.  That looks crazy but I've never felt better.  LOL ;)

 

Good luck with the update from the doc!

  • 2 weeks later...
lea01 Rookie

Mine is pretty mild, and technically I don't have reactive hypoglycemia because I haven't had it confirmed by a doctor.  LOL  :rolleyes:

 

 

I've had a pretty big weight loss since going low carb (about 25lbs in 10 weeks) but I am eating at a caloric deficit and want to lose weight.

 

One thing to keep in mind with a very low carb diet is that carbs enable you to hold onto water and salt.  When one eats low carb (or very low carb like me so they are in ketosis) you will lose a few pounds of water weight very quickly, and you may get low on sodium (which makes you feel headachy and fatigued so most people need to double their sodium intake (up to 3000-5000 mg/day); increased potassium and magnesium helps with this too.  I'm guessing that at least 5 lbs of my loss is from water, maybe as much as 8lbs or so.  Just guessing though.

 

Some of that loss may have been water, as for the rest - it sounds like you need to add in more calories.  Some people lose weight easier on a low carb diet. It sounds like that is you so you probably need to up your calories by a few hundred kcals.

 

When people go low carb, you need to replace the carbs and most of us do it with fat. Add cream to coffee, eat nuts and avocado, olives, cheese, fatty meats, a bit more full fat dressing than you would normally use on a salad.  Did you up your fats and (possibly) protein when you cut out those carbs?  It is safe for most people to do so.  I eat about 5% carbs, 25% protein and 70% fat now.  That looks crazy but I've never felt better.  LOL ;)

 

Good luck with the update from the doc!

All of my labs came back within normal range...which is a big load off. The endocrinologist confirmed it is reactive hypoglycemia. Doctor said I have to increase my protein and fat intake. I will likely consult with a RD to figure out the best way to do that since I have so many dietary restrictions.

nvsmom Community Regular

I really like Dr Bernstein's Diabetes Solution book.  He advocates a LCHF ketogenic diet.  Atkins is also similar.  Lots of food ideas from both.  They are at the extreme end though, so you may be more moderate.  :)

 

Good luck!  I hope you have success with the dietary changes too.

lea01 Rookie

I really like Dr Bernstein's Diabetes Solution book.  He advocates a LCHF ketogenic diet.  Atkins is also similar.  Lots of food ideas from both.  They are at the extreme end though, so you may be more moderate.   :)

 

Good luck!  I hope you have success with the dietary changes too.

Thanks so much! You've been very helpful!!

nvsmom Community Regular

Let us know how it goes.  :)

lea01 Rookie

Let us know how it goes.   :)

I certainly will. This morning, I added peanuts to my usual oatmeal and raisins...kind of a weird combination, but I can't remember the last time I had any protein with breakfast. Baby steps... :)

ravenwoodglass Mentor

Have you tried stopping the oatmeal? Some of us will react to it. For me it doesn't cause quite the same symptoms that wheat does but it does make me feel tired and just off with some looser movements but not the severe D and cramping. If you really feel a need for a hot cereal maybe try Cream of Buckwheat or something else along those lines.

nvsmom Community Regular

Have you tried stopping the oatmeal? Some of us will react to it. For me it doesn't cause quite the same symptoms that wheat does but it does make me feel tired and just off with some looser movements but not the severe D and cramping. If you really feel a need for a hot cereal maybe try Cream of Buckwheat or something else along those lines.

Good catch! So true...

lea01 Rookie

Have you tried stopping the oatmeal? Some of us will react to it. For me it doesn't cause quite the same symptoms that wheat does but it does make me feel tired and just off with some looser movements but not the severe D and cramping. If you really feel a need for a hot cereal maybe try Cream of Buckwheat or something else along those lines.

Hmmm...honestly, the thought never crossed my mind, but I see where it makes sense. Thanks for pointing that out. I will certainly give the Cream of Buckwheat a try. Hot cereal is really the only thing I prefer for breakfast. Do you have any firsthand knowledge about creating any GI or other problems by having the Buckwheat every day?

  • 2 weeks later...
lea01 Rookie

@ravenwoodglass: Thanks for suggesting the Creamy Buckwheat! The texture is a bit different from oatmeal, but definitely not in a bad way. In fact, it kind of reminds me of mashed potatoes, which I haven't eaten in a while since potatoes cause such a stir with my blood sugar. Now I can have the buckwheat for breakfast or with dinner if I feel like getting a mashed potato fix.

  • 3 weeks later...
lea01 Rookie

Hi everyone,

Just want to share an "Aha" moment. So after being diagnosed with reactive hypoglycemia in addition to the other stuff, I decided to try some new breakfast ideas (had to give up my 15-year run of oatmeal) since incidents of low blood sugar (BS) seem to be at its worst in the morning for me. I had half a gluten-free pita and two slices of uncured bacon, with 1/4 cup OJ. OMG...2 hours later my BS was in the 80s, which was great considering the 60s and 70s I was getting with the oatmeal. Tried the same thing the next day, 80s again. The following day I had half a pita with peanut butter and a small orange...it was 86 2 hours later! I noticed I also didn't have the unsettled stomach, headache, and sleepiness I typically got with the oatmeal.

As I go throughout the day, I still try to keep in mind the rule about having protein and fat with my carbs to avoid issues, but a few times I didn't, just to see if anything would happen and I've been fine.

Also, I thought I'd never be able to eat potatoes again. I usually buy Russet potatoes, which cause some issues. The dietitian recommended I try red potatoes. I did and felt fine. My BS didn't drop!

I'm still taking everything one day at a time, but it feels so great to hear my body tell me I did something right.

Thanks for letting me share!

nvsmom Community Regular

:)  Low carb meals are a great help when dealing with this.  Glad you found a solution.

lea01 Rookie

Thank you!

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Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
    • lmemsm
      Seems like when I find a gluten free product I like, the producer stops manufacturing it and then I have trouble finding a new gluten free source for it.  What's worse, I've been contacting companies to ask if their products are gluten free and they don't even bother to respond.  So, it's making it very hard to find safe replacements.  I was buying teff flour at nuts.com and they no longer carry it.  I noticed Naturevibe has teff and soy flour.  However, I can't get a response as to whether their flours are safe for someone with celiac.  Can't get a response from Aldi if their peas are safe for someone with celiac either.  I know Bob's Red Mill has teff flour but was hoping to get a large quantity.  I've been using up the 20 ounce Bob's Red Mill teff flour too quickly.  Does anyone know of a good source for teff or soy flour?  Any recommendations where to get gluten free beans, peas or lentils?  I found some packages of gluten free beans at Sprouts but not much variety.  I've also been looking for lentil elbow macaroni and it seems like no one is making that now that Tolerant was bought out.  Any suggestions for safe sources for these types of ingredients.  Thanks.
    • chrish42
      All I can say is this site is great!
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