Gluten intolerance, glucose intolerance and kidney stones/osteopenia: Is there a connection?

[kenneth88]

Hi everyone,

After years of struggling - and I mean struggling - I think I finally know what is wrong with me. I've been thinking about it for a while and have been leaving gluten out of my diet. Until last Sunday I ate some crisps along with bread and chocolate. Monday I was in Hell again, my panic attacks got really severe (I was diagnosed with panic disorder a couple of years ago). So I figured I'm allergic to gluten. 

I have been diagnosed with glucose intolerance in the past, along with kidney stones (in abnormal amounts). My question is: Is it possible for gluten intolerance to manifest itself at 21 years of age during a stressful period? Is it possible for gluten intolerance to feed anxiety and panic attacks? Could it be linked to osteopenia (also got it; along with hormone and elektrolyte imbalances)?

I'm positive my "anxiety disorder" is linked to food because I notice a strange reaction to gluten after having been gluten free for a longer while. Especially white bread seems to be affecting me. 

So I guess I'm allergic to wheat and sugar. What on earth do I eat? 

All the while I have been having these reactions... If I'm really allergic, no wonder I have been sick for years. I actually do better when I only eat non-refined foods and I guess it's a diet I will have to stick with for the rest of my life in order to really heal this thing. 

I also have very strong reactions to sugar (drops in blood sugar/extreme fatigue) and cafeine. Is all of this considered "normal" when you're allergic to gluten? 

If often get dizzy or nauseous and my stool tends to differ in shape and hardness. 

Thanks!

Best regards,

Ken

[Gemini]

Hi ken,

In answer to your questions, yes, yes and yes!

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The above is an article that explains the pathway in which kidney stones can happen with Celiac Disease.  It also most certainly can cause osteopenia/osteoporosis, due to a lack of nutrient absorption and the inflammation that happens with un-diagnosed Celiac.  Many people, myself included, end up with one or both from long un-diagnosed Celiac. 

As for panic attacks, yup to that too.  I have been diagnosed and gluten free for 11 years and never had a problem with anxiety in my life. That was not one of my pre-diagnosis symptoms.  Yet, now......on the rare occasion when I am glutened, major anxiety unleashes for about 3-4 days and then it goes away as quickly as it began. There are many people here with anxiety issues which got better after being on the gluten-free diet for awhile.

The blood sugar issue?  I had unstable blood sugar, at times, in the years before I went gluten free. Passed out twice from sugar reactions and I am not diabetic.  This all resolved after diagnosis and the gluten-free diet.  Gluten messes everything up! 

When you say you have been diagnosed with gluten intolerance in the past, were you tested for Celiac Disease? That is very important and if not, you really should try for a formal diagnosis. You have many hallmark symptoms of Celiac.  You are probably not allergic to sugar, just not healed enough so you have on going symptoms. I don't know of any people who have a true allergy to sugar.  I never had a problem with caffeine, even when I was really sick so that could be a problem with you or just the fact that your body is not well so caffeine (stimulant) is going to bother you. Both sugar and caffeine can cause dizziness if you're not well.

Lastly, yes to having it develop at the age of 21 from stress. Stress is a trigger for Celiac and many other diseases. You either need a formal diagnosis if you don't already have one, or be able to stick to a STRICT gluten-free diet in order to heal and see if all these symptoms go away. But keep an eye on that osteopenia because when men get it, it often is worse in men than women. That is what I read when reading up on the problem for my benefit.  Hope this helps!

 

 

[kenneth88]

On 11-7-2016 at 10:27 PM, Gemini said:

When you say you have been diagnosed with gluten intolerance in the past, were you tested for Celiac Disease?

Hi,

Thanks for the great info, Gemini! 

To answer your question: I have been diagnosed with glucose ((refined) sugar) intolerance but they never tested me for Celiac. I went to an endocrinologist and she never even bothered. She thought I had another rare disorder looking at my symptoms, but turned out, of course, I didn't have it. She eventually said there's nothing wrong with me and that I have to go see a shrink. 

What I do believe I have, is Celiac disease! I get these strange symptoms when I quit gluten. But as I say, I have never been tested and to be honest, I don't know if I ever will go for a test. I don't like the thought of having an endoscopy done. 

Also, if they see that I have it, what are they going to do about it? Nothing. There's no cure for gluten intolerance, so I might as well stick to the diet and see what happens... 

If there was medication I'd definitely go see a doctor for it, but if there's nothing they can do about it, I'm not going to fill their pockets and prolong the suffering as you need to be eating gluten for 3 months in order for the test to be accurate. I'd like to end the symptoms and restore my gut as soon as possible, not cause more damage. I've heard it can take up to two years before the gut is healed from the damage caused by gluten. If it's Celiac I'm ending this thing right now. Because if it is, I have put too much oil on the fire already. Who knows, maybe I'm just gluten sensitive and don't have Celiac... 

I have seen a lot of doctors and they all said that I just needed to relax and pop some pills. A lot of them just care about their wallets. 

To be honest, I don't even want to know if it's real Celiac or not, because if it's not and if it's gluten sensitivity, I'll probably start eating gluten again anyway. I think it's best to just assume it's Celiac and quit gluten forever. Two weeks in, people already say I've lost weight. Good riddance..... 

Supplements seem to be causing infections in me. Would that be something to expect in case of Celiac? 

Thanks again.

Best regards,
Ken

 

 

[Gemini]

I can totally relate to your feelings about doctors because they did the same thing to me for a long while. I stopped going to them out of frustration when I started hearing them say to go to a shrink.  They think we all are nuts or hypochondriacs. NOT!  I would say a couple of things here to think about.......

I was diagnosed through blood work only. I presented with classic Celiac so was already underweight and losing more.  I became ill to the point where I would have died had I not discovered there was a blood test for Celiac and read up on what it actually was. No doctor since diagnosis has ever doubted I have it once they look at my blood work. The reason I say all this is because for some, diagnosis is easier to figure out and they don't necessarily need an endoscopy. I figured if my gut was still in anguish after following the gluten-free diet for awhile, then I would go and have one to see if anything else was going on but that never happened.  I recovered slowly but really well.

You mentioned medication.  What if they came out with a pill or some treatment for celiac?  You would not be able to get it if you don't have a diagnosis. I am kind of funny about that because even with a treatment, I am not sure if I would ever eat gluten again anyway.  I can't imagine eating something I am genetically programmed to not digest.  I could receive treatment because I have a diagnosis but you would not be able to do the same. How would that make you feel?

If none of this matters to you, that is perfectly fine. But you have to make sure you are strict about the diet and consider yourself Celiac or all your initial work will have been for nothing. When doubt creeps in, sometimes people cave and cheat and then they beat themselves up because they feel so bad.  That's a bad pattern to fall into.

Why do you think that supplements are causing infections?  Bacteria usually cause infections. Sometimes, people with Celiac can have a lot of infections when they are run down and vitamin deficient....that makes you susceptible to bacteria and other nasty stuff. If your gut isn't working right, then your immune system isn't working right.  80% of your immune system is based in the gut bacteria. So, once you start to heal and feel better, that should go away, over time. You just might be run down and stressed out so you get sick more often.

So, you were diagnosed with a sugar intolerance or did they do diabetes testing on you?  How do they test for an actual refined sugar intolerance?

Thing about all of this and then if you want to stay gluten free, do so seriously, including cross contamination.  That is enough to keep a person symptomatic and sick.  There is a learning curve to doing this right so be patient!

[kenneth88]

Hi, thanks, you have a point... 

I'll consider it, but for now I'd just like to try the diet and see what it does. 

About the glucose test, it's kind of a diabetes test really. They give you a drink and look at your blood to see how it reacts. In my case my insulin has problems rounding it all up. Which means I could eventually get diabetes type II if I don't pay attention to what I eat and drink. But it's not like I eat a lot of sugar. It's not refined sugar specifically, but hey, we all know that's the nasty stuff... No one ever gets diabetes from eating an apple, right? 

I have always gained weight rather easily, which makes sense, if carbs really are stored as fat in people with this condition. 

So, would having problems losing weight be an indicator of Celiac? Or would it mean that I'm just gluten intolerant, or doesn't it mean much at all? I have most of the symptoms but I tend to gain weight on gluten not lose weight. 

Thanks for all your advice, I appreciate your time! I'll be really careful as to what I eat. 

Other findings: my cortisol output was kind of high (stress), high white blood cell count (immune response), high liver enzyme count ("fatty liver"), very low testosteron count (infertility?), all of which they were quick enough to attribute to depression. 

Best regards,

Ken

[Gemini]

OK, it sounds like you are somewhat insulin resistant. That can happen but it could be tied to Celiac and it may go away if you eat well and keep your weight under control. Your body gets all messed up from gluten intolerance.
 Like I stated, I had blood sugar swings that made me pass out.  That has all resolved on the gluten-free diet. My blood sugar now is steady and really good. You are right though.......I doubt anyone ever developed diabetes from eating apples!

There are Celiac's who are skinny and there are those who are heavy. Obese people can have Celiac disease......it does not discriminate. It all depends on how you present with it and how your body responds to malnutrition. You can be heavy and be malnourished. Having trouble losing weight can be from so many things. Your thyroid could be off or it could be just from eating too many calories and not burning enough off. Celiac can keep weight on from water retention or the fact that nothing works well when you have un-diagnosed Celiac. You may want to try weight training because I do that for my bones and let me tell you......it is great for turning fat into muscle. You may not lose a lot of weight but your body will become toned, which makes you burn more calories. Your energy levels increase and you sleep much better.

The notion that all your symptoms are caused by depression is the classic example of doctors not wanting to look further.  High liver enzyme count, for example, is classic with Celiac disease. Mine were elevated and now they are not. Many people note that problem before diagnosis. High white cell count indicates infection/inflammation and cortisol will be elevated with stress.  Lots of guys have low T, as they call it now. Maybe the weight training would help with that? Testosterone supplementation has to be done correctly because some of the meds are known to cause heart attacks/stroke. The only ones I would ever recommend are the bio-identical hormone replacement type.  Most mainstream docs do not use them...they use Big Pharma which tend to give too high a dosage and then you have problems. But you really only need to supplement if you have many symptoms of low T and its really affecting your health. Hormones are powerful and should be used sparingly.

Good luck with the diet but be patient with results.  You could always be tested later but its going to be painful if you really have a problem with it and have to re-introduce it.  Can you do genetic testing to see if you at least carry one of the main genes for Celiac?  It won't tell you whether you have it, just that it will let you know you have the genes to acquire it.  Diet won't affect gene testing.  Just a thought.......

[kenneth88]

Thank you! 

I'm really hopeful reading this. 
Just today I've started to get some sort of "stabbing" headaches, especially after eating, along with flu-like symptoms... Pain in my stomach, nausea as well. I'm guessing that this is my body detoxing and that I really am gluten-intolerant. I never would have thought this stuff would be so toxic! 

Thanks again for all the information! I could indeed get my genes tested at some point. That really is a good idea. I'll see how the diet works out and will let you know. 

Well, I'm kind of awestruck by all this... The food that is supposed to keep us well is making us sick. 

Could you please tell me when was the first time you started to feel like yourself again? 

Thank you, Gemini. 

Best regards,
Ken

 

 

[Gemini]

As far as feeling better once I went gluten free, it was immediate for me.  I was in kind of a crisis at the time of diagnosis because I was losing weight daily and was down to 92-94 pounds. I could not eat anything without getting really sick so it was do or die. Yet, miraculously enough, after only 3 days of eating plain, gluten free food, the diarrhea and vomiting stopped all by itself without taking any meds. The nausea started to lessen and that was one of my bad symptoms. 

However, it took another 3 years before all of my Celiac symptoms disappeared completely. The last to go, and this is common, were the neurological ones. I was 46 years old when diagnosed so it wasn't going to be a quick recovery but I have to honestly say, that by the 6 month mark gluten free, I felt better than I had most of my adult life. The fatigue was going away fast and I was able to take a trip out west and go hiking in Colorado. Up until the 6 month mark, I did feel pretty good but was still underweight and a bit shaky from being so thin but every day it got a tiny bit better. Recovery really is so individual with everyone.

Make sure you are not getting cc'd by cookware or utensils or toasters.  Don't eat anything unless you are pretty convinced it is gluten free.  It is normal to have good days and bad days so don't worry about that.  But I am glad you have hope because that is important!    It is like being slapped in the face when you discover that its the wheat that is making you so ill. I had trouble myself believing it could do so much collateral damage but it can and does. Live and learn!

[kenneth88]

Thank you... 

3 years seems like a long time, but hey, as long as the symptoms go away there's a lot to look forward to. 

If only I could have discovered earlier that I am gluten intolerant, I probably would have healed by now... But my body is still young and I hope that if I drink and eat the right things and exercise a bit that I will speed up the recovery. But better to find out later than to never find out, is what I am thinking... One needs to stay positive. 

Thanks again for all the information, it's everything that I needed to know. From where I am now it only gets better, is what I am thinking. No more gluten for me... 

What people say, and what you say, about them feeling better, and you feeling better than they and you ever have, is what is really giving me hope. If you've gone through hell you deserve to be happy. We all do. 

Best regards,
Ken

[kenneth88]

Hi,

I'm currently losing weight really fast. I mean really fast. Would that be something to expect after going gluten-free? 

I really like the pounds coming off but is it normal and healthy to lose weight that quickly? I'm talking 3-5 pounds a week easy. 

Thanks,
Ken

[GFinDC]

Sorry for the slow response Ken.  I don't think losing weight that fast is normal after going gluten-free.  But it is not an easy diet transition for many people, so there are no hard rules.  Generally I believe people tend to gain some weight after going gluten-free.

[kenneth88]

Thanks, well, apart from gluten I cut out all of the sugar too, so virtually no carbs... I'm glad to have lost the weight.