View Full Version : Celiac disease and chronic fatigue


syrella
05-17-12, 05:04 PM
Has anyone here been diagnosed with celiac disease? I am thinking of getting myself tested. I have had IBS symptoms and fatigue since I was little, with no discernible cause. I always just assumed it was normal, just like my ADHD symptoms.

I recently read an article that suggested that celiac disease can cause more than just stomach problems. I've heard it implicated in chronic fatigue and fibromyalgia both. According to a research article I read, Italian children diagnosed with ADHD were significantly more likely to have celiac disease in comparison with the general public. It suggested that kids with ADHD should get tested, even if they don't report any obvious GI symptoms.

FYI:


"Celiac disease is a condition that damages the lining of the small intestine and prevents it from absorbing parts of food that are important for staying healthy. The damage is due to a reaction to eating gluten, which is found in wheat, barley, rye, and possibly oats."

Read more here:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001280/

syrella
05-17-12, 06:08 PM
http://www.ncbi.nlm.nih.gov/m/pubmed/21977364/
Here's a link to that research article I read, for the record. Though any one study needs to be taken with a grain of salt, it does point to some correlation between the two.

Drewbacca
05-18-12, 03:01 AM
Celiac's can be a difficult diagnosis. There is a simple blood test, but the results are really unreliable from what I've heard. An endoscopic procedure and biopsy is really the only way to know for certain, and even then, the damage may not be significant enough for a diagnosis. One thing is certain, if you prematurely remove gluten from your diet, a biopsy is less likely to find anything since you will begin to heal when you remove it from your diet (if celiac's is present).

I've yet to have an endoscopy performed... they only checked the other end.
I'm pushing to have one now. I did, however, go wheat/gluten free for over a year with no notable benefit in my case. I'm going to try an allergy shot next; it's worth a shot, right?

But yes, fatigue (check), IBS (check), ADHD (check)... you can add GERD, high blood pressure, nausea, congestion, poor balance, and weak immune system to my list. *sigh*

syrella
05-18-12, 08:00 AM
Celiac's can be a difficult diagnosis. There is a simple blood test, but the results are really unreliable from what I've heard. An endoscopic procedure and biopsy is really the only way to know for certain, and even then, the damage may not be significant enough for a diagnosis. One thing is certain, if you prematurely remove gluten from your diet, a biopsy is less likely to find anything since you will begin to heal when you remove it from your diet (if celiac's is present).

I've yet to have an endoscopy performed... they only checked the other end.
I'm pushing to have one now. I did, however, go wheat/gluten free for over a year with no notable benefit in my case. I'm going to try an allergy shot next; it's worth a shot, right?

But yes, fatigue (check), IBS (check), ADHD (check)... you can add GERD, high blood pressure, nausea, congestion, poor balance, and weak immune system to my list. *sigh*
Oh dear, it sounds like we have the same thing minus high blood pressure and nausea. Health issues are no fun. I'm beginning to think it's all related, too, especially as my dad has dealt with gut issues his whole life and also has ADHD (untreated).

Yes, I did notice that about the blood test. Isn't it frustrating that, if you do have it, you may not be able to get a diagnosis if you start a treatment plan proactively? Oh well!

And then it might not be (only) celiac disease. It could be elaborate food allergies or some other kind of autoimmune something or other. Oh well, just keep at it I guess. I am gonna go see a doctor and hope they'll be able to figure out what's wrong, whether it's celiac or something else.

Drewbacca
05-18-12, 03:50 PM
I've been trying to narrow down which symptoms are connected to each other by plotting a family history of medical conditions but I haven't made much head way.
My brother has the IBS issues plus a lot of headaches. I don't think that he has ADHD but if he does, it is much milder than mine as he managed to get through a very difficult school... and he's clean, and organized... on time... ha, ok, definitely not ADHD. He has had depression problems in the past and he is a ball of anxiety.

I have an uncle and cousin on my mom's side with ADHD but no medical problems. There are no allergy issues on that side of the family to my knowledge.
There might be some sort of auditory problem, but only my mom my brother and one of my nieces have that... I'm the only one in that group with inattention.

On my dad's side, allergies are a problem. There may also be a thyroid issue as two of my cousins (one now passed) are morbidly obese. But, no signs at all of ADHD.

I'm confident that the underlying problem for my particular flavor of ADHD is at least in part an auto-immune issue. I'm highly sensitive to dairy/casein but was unable to establish if anything else was contributing. I may have an auditory processing disorder on top of that. To round it all off, I grew up with 0 structure which certainly hasn't helped. I can't emphasize enough how little structure was in my life... no regular bed time, no family meals, no curfew... I might as well have been raised by wolves in some respects.

jiffyPOP
05-19-12, 02:41 AM
Has anyone here been diagnosed with celiac disease? I am thinking of getting myself tested. I have had IBS symptoms and fatigue since I was little, with no discernible cause. I always just assumed it was normal, just like my ADHD symptoms.


thanks for starting this thread. I also have similar IBS, GERD, fatigue. I have never been test for celiac. However, I have been building up courage to star down the patch on a gluten free diet. I only recently started to cut bread / bagels/ out of my diet. I'm cokin for myself every night, eating much fresh veggies and meat, and trying to cut as much gluten out as i can. It is difficult!

good luck with your tests. Keep us posted

oneup
05-19-12, 03:16 AM
I had the blood tests for this but they were negative...but I had been on a gluten free diet for 1yr. So I wonder how accurate they are. My doc ordered 4 different labs that were specific for celiac and said it didn't matter...I tried to argue with her to let me eat some wheat for a while, maybe 2 weeks, so the test would be more accurate but she said it didn't matter. I wonder though, I think she didn't believe me? Gluten free is a pain in the *** though. Its hard to say how much it helped me, since I hadn't realized I'm also sensitive/allergic to soy and dairy.

Drewbacca
05-19-12, 12:34 PM
It's very difficult to eliminate gluten, it's in everything... even most types of soy sauce. Good luck jiffyPOP.

CheekyMonkey
05-19-12, 04:40 PM
I'm celiac. Celiac has a wide range of symptoms that are different in everyone. Before getting diagnosed I had always had digestive problems, headaches/migraines, fatigue, and had put on a lot of weight. I got very sick before getting diagnosed. I've been gluten free for 3 years now and have also gone dairy free at the strong suggestion of my GI doctor. This has made a significant difference as well.

Get the blood test, which is not 100% but telling. If it is positive you'll get the biopsy which will be more definitive, but still not 100% but works for most people. There is also a genetic test that can tell you that you definitely NOT celiac, but not if you are.

Blood tests are only accurate if you are still eating gluten, so don't go gluten free until your doctor okays it.

Gluten free is hard at first, but gets easier the longer you are on it and find many things you CAN eat. It is much easier now than it used to be. There are tons of gluten free products and restaurants with gluten free menus.

jiffyPOP
05-20-12, 12:58 AM
It's very difficult to eliminate gluten, it's in everything... even most types of soy sauce. Good luck jiffyPOP.

thanks for pointing this out. My favorite chicken marinade contains soy sauce!

Drewbacca
05-21-12, 12:35 AM
thanks for pointing this out. My favorite chicken marinade contains soy sauce!

Tamari Soy Sauce is the safe one. You have to read the labels carefully. Soba/buck-wheat noodles are sometimes pure and sometimes mixed with wheat. Pure buck-wheat is ok. Oats are ok, but most oats are contaminated and you have to find gluten-free specific oats.
Gluten is in everything because your basic all purpose flour is often used to prevent food from sticking while being processed by machinery. Since the all purpose flour isn't actually in the end product, it won't be on the label. However, it is enough to make a celiac sick.

Food can be cross contaminated while cooking. Pans need to be specifically gluten free. Burger King french fries get contaminated by the onion ring breading. There are tons of examples. Say good bye to most beer.
There are a few good suggestions here: http://www.celiacsolution.com/hidden-gluten.html

jiffyPOP
05-21-12, 11:55 PM
Tamari Soy Sauce is the safe one. ...

Say good bye to most beer.
There are a few good suggestions here: http://www.celiacsolution.com/hidden-gluten.html

cool, thanks for these hints. I'll pick up the Tamari. I noticed my other Stubbs chicken marinade says Gluten free on the back. cool, I love that particular marinade. :D

My buddy gave me a case of Redbridge gluten free beer. And surprisingly, I actually tolerate it! Not that bad. I am a beer snob. :rolleyes:

top 10 and botton 10 gluten free beer review.
http://www.pastemagazine.com/blogs/lists/2012/03/the-best-and-worst-gluten-free-beers.html

CheekyMonkey
05-22-12, 12:07 AM
cool, thanks for these hints. I'll pick up the Tamari. I noticed my other Stubbs chicken marinade says Gluten free on the back. cool, I love that particular marinade. :D

My buddy gave me a case of Redbridge gluten free beer. And surprisingly, I actually tolerate it! Not that bad. I am a beer snob. :rolleyes:



There's some better gluten free beer than redbridge!!!

Try Damm Daura, Green's, Bard's, New Grist, New Planet


Other tricky things that may have gluten:

Envelopes you lick
Gravy and sauces
Soups
Chicken or Beef stock
Oatmeal (unless certified GF free)
Twizzlers, licorice
Some Canned baked beans
Some cold cut meats
Sausage

jiffyPOP
05-22-12, 01:16 AM
There's some better gluten free beer than redbridge!!!

Try Damm Daura, Green's, Bard's, New Grist, New Planet


they are only better if they are free :D:D

But seriously, I can't wait to try these. I'm entering a new beer world! It must be what it is like to discover Lost Planet or something :)

syrella
05-22-12, 01:01 PM
Thanks everyone! I started the thread and have checked back to see what was written, but didn't have quite the oomph to reply.

A lot of this is really good information. It's amazing how many things have gluten in them too! I haven't started the gluten free diet yet because it would be better to wait until an official diagnosis. It sounds like it'll be tricky if I ever do have to go gluten free. It seems like its almost everywhere in the foods we eat.

Luckily I don't drink beer so I don't need to worry about the aspect ;)

syrella
05-22-12, 01:17 PM
I've been trying to narrow down which symptoms are connected to each other by plotting a family history of medical conditions but I haven't made much head way.
My brother has the IBS issues plus a lot of headaches. I don't think that he has ADHD but if he does, it is much milder than mine as he managed to get through a very difficult school... and he's clean, and organized... on time... ha, ok, definitely not ADHD. He has had depression problems in the past and he is a ball of anxiety.

I have an uncle and cousin on my mom's side with ADHD but no medical problems. There are no allergy issues on that side of the family to my knowledge.
There might be some sort of auditory problem, but only my mom my brother and one of my nieces have that... I'm the only one in that group with inattention.

On my dad's side, allergies are a problem. There may also be a thyroid issue as two of my cousins (one now passed) are morbidly obese. But, no signs at all of ADHD.

I'm confident that the underlying problem for my particular flavor of ADHD is at least in part an auto-immune issue. I'm highly sensitive to dairy/casein but was unable to establish if anything else was contributing. I may have an auditory processing disorder on top of that. To round it all off, I grew up with 0 structure which certainly hasn't helped. I can't emphasize enough how little structure was in my life... no regular bed time, no family meals, no curfew... I might as well have been raised by wolves in some respects.
Sorry about the slow response... :)

Yes I do think it's probably genetic to a certain degree. I have a cousin with ADHD and my dad has it too. I am fairly certain that my uncle has Asperger's syndrome or something like it as well (highly intelligent, an avid collector, no social skills, can't hold a job, etc).

There is some giftedness on my mom's side too. My grandfather struggled with terrible anxiety but he also was an engineer and a member of MENSA. I'd say I have a family history of "different" people haha.

I have autoimmune issues on both side of the family with arthritis being the biggest (psoriatic, rheumatoid, and ankylosing spondylitis). Diet plays a huge role in those too, so I'll probably end up on some super healthy and restricted diet later in life.

I don't have any obesity that runs in the family except for my mom's side and that is more distant relatives that live in the Midwest states. Environment probably is a contributing factor.

Oh well... I hope you are able to figure out what's wrong. Good luck!

Drewbacca
05-22-12, 02:35 PM
Yes I do think it's probably genetic to a certain degree. I have a cousin with ADHD and my dad has it too. I am fairly certain that my uncle has Asperger's syndrome or something like it as well (highly intelligent, an avid collector, no social skills, can't hold a job, etc).

There is some giftedness on my mom's side too. My grandfather struggled with terrible anxiety but he also was an engineer and a member of MENSA. I'd say I have a family history of "different" people haha.


I have an uncle on one side who was nominated for a Nobel Prize in chemistry. I've also found that my thinking style has more in common with his siblings than the other 3/4 branches of my family tree. The difference between genius and debilitated can be the difference of only one gene though.

One other thing to keep in mind regarding a gluten free diet. Gluten is sugar. Sugar releases insulin. Insulin converts most amino acids (the precursors for norepinephrin and dopamine among them) into fat and reduces them in your brain. At the same time, tryptophan (serotonin precursor) is able to cross into the brain much easier than when it was competing with the other amino acids. Serotonin will surge and dopamine and norepinephrin will drop. The Serotonin surge makes you feel fat, dumb, and happy.
It also makes you tired. Think post Thanksgiving meal food-comma from all the fixn's. So, feeling more energetic and less tired is expected when you consume less carbs. Don't take that as an indication that you have an allergy/sensitivity. Believe me, if you cut it out of your diet for a while and then digest it again, you'll know if you have a reaction. I can't eat Mozzarella cheese without serious consequences. A celiac can tell if something has gluten in, even a very small amount, once they've purged their system for a while.

syrella
05-22-12, 03:33 PM
I have an uncle on one side who was nominated for a Nobel Prize in chemistry. I've also found that my thinking style has more in common with his siblings than the other 3/4 branches of my family tree. The difference between genius and debilitated can be the difference of only one gene though.

One other thing to keep in mind regarding a gluten free diet. Gluten is sugar. Sugar releases insulin. Insulin converts most amino acids (the precursors for norepinephrin and dopamine among them) into fat and reduces them in your brain. At the same time, tryptophan (serotonin precursor) is able to cross into the brain much easier than when it was competing with the other amino acids. Serotonin will surge and dopamine and norepinephrin will drop. The Serotonin surge makes you feel fat, dumb, and happy.
It also makes you tired. Think post Thanksgiving meal food-comma from all the fixn's. So, feeling more energetic and less tired is expected when you consume less carbs. Don't take that as an indication that you have an allergy/sensitivity. Believe me, if you cut it out of your diet for a while and then digest it again, you'll know if you have a reaction. I can't eat Mozzarella cheese without serious consequences. A celiac can tell if something has gluten in, even a very small amount, once they've purged their system for a while.
That's a good point. Yep, the line between genius and disability is blurred I would say. It has good points and bad points.

Yeah, I know I have lactose intolerance and, possibly due to the IBS, I can't handle fatty foods. Cheese makes me immediately sick, even more than milk. What I have trouble with is distinguishing what makes me feel good and what makes me sick unless the reaction is strong and obvious. I feel kind of crappy and low energy a good portion of the time, though I will rarely have good days. The key is gonna be figuring out why the good days are good.

Long story short, I need to keep a food diary for myself... organizational skills, don't fail me now!

syrella
05-22-12, 03:57 PM
Oh, one thing though... Gluten isn't a sugar itself. It's a protein... But it's also true that cutting it out of your diet means giving up lots of carbohydrate rich foods like most breads. Is that what you meant?

hjajck
05-22-12, 04:06 PM
It's very difficult to eliminate gluten, it's in everything... even most types of soy sauce. Good luck jiffyPOP.

I disagree. I've been GF since August 2011, and there are a lot of substitutions as well as very quick and easy recipes for other items.

I am not a diagnosed Celiac, but 'self diagnosed' as gluten-intolerant. I suffer from both IBS and Colitis, and a GF diet has eliminated my symptoms.

I started "cheating" by introducing gluten back in around the holidays and ALL my symptoms returned.

On the plus side, my migraines have almost completely disappeared.

Drewbacca
05-23-12, 01:09 AM
Oh, one thing though... Gluten isn't a sugar itself. It's a protein... But it's also true that cutting it out of your diet means giving up lots of carbohydrate rich foods like most breads. Is that what you meant?

I was referring to the carbohydrates, which go along with the gluten... sorta like eating the wrapping paper! :P I think I need sleep before I say any other stupid things!

Drewbacca
05-23-12, 01:13 AM
I disagree. I've been GF since August 2011, and there are a lot of substitutions as well as very quick and easy recipes for other items.


You're misreading what I said. I wasn't implying that there aren't alternatives out there. Gluten free is rather trendy at the moment, which is great for the celiacs out there because their options have sky rocketed in the last few years.

I was just warning jiffypop that it's hard to eliminate gluten because it is good at hiding in food where you least expect it.

Or to put it another way, hard to eliminate but relatively easy to replace (so long as you do all of your own cooking, at least).

hjajck
05-23-12, 08:35 AM
You're misreading what I said. I wasn't implying that there aren't alternatives out there. Gluten free is rather trendy at the moment, which is great for the celiacs out there because their options have sky rocketed in the last few years.

I was just warning jiffypop that it's hard to eliminate gluten because it is good at hiding in food where you least expect it.

Or to put it another way, hard to eliminate but relatively easy to replace (so long as you do all of your own cooking, at least).

Ah, yes, I did misread. My apologies.

You're right - gluten is hidden in everything!

Drewbacca
05-23-12, 07:09 PM
Ah, yes, I did misread. My apologies.


I've done worse. :D

syrella
05-23-12, 07:38 PM
I was referring to the carbohydrates, which go along with the gluten... sorta like eating the wrapping paper! :P I think I need sleep before I say any other stupid things!

Haha ok, thanks for clearing it up. That's what I thought you meant, but I wanted to make sure.

I am glad to hear that gluten free items have gotten more available. I hope people aren't just trying them out of the hope that they'll lose weight or something silly. I have also noticed, quite unfortunately, that gluten free doesn't necessarily mean healthy. I almost bought this ADHD cookbook a month ago, but all of the recipes were for junk food!

hjajck
05-24-12, 11:17 AM
Haha ok, thanks for clearing it up. That's what I thought you meant, but I wanted to make sure.

I am glad to hear that gluten free items have gotten more available. I hope people aren't just trying them out of the hope that they'll lose weight or something silly. I have also noticed, quite unfortunately, that gluten free doesn't necessarily mean healthy. I almost bought this ADHD cookbook a month ago, but all of the recipes were for junk food!

It does seem to be a very popluar "diet", but what most people don't realize is true Celiacs and gluten intolerant people have absorbtion issues. Some (not all) and actually gain weight when eating GF because their bodies are now able to absorb all the nutrients.

I was afraid to start GF eating because I had heard how expensive it is. I found that if I don't buy the "specialty items" (bread, baked boods, etc.), that it's not any more expensive than eating regularly, and healthier, too.

GF is what you make of it. It can be healthy, but as you've pointed out, it can be unhealthy as well.

Drewbacca
05-24-12, 10:59 PM
I am glad to hear that gluten free items have gotten more available. I hope people aren't just trying them out of the hope that they'll lose weight or something silly.

Not so much for weight as chronic medical issues that modern mainstream medicine seems incapable of solving...
I honestly don't blame anyone for trying it. I'm just pointing out that it has become quite popular as of late. I don't think that the trend will stick around in its current format, but I think that the lingering effect of alternative grains will probably stay with us. Of course, as we continue to research the gluten issue, it could end up more common... depending on what future research finds.

syrella
05-25-12, 12:20 AM
Not so much for weight as chronic medical issues that modern mainstream medicine seems incapable of solving...
I honestly don't blame anyone for trying it. I'm just pointing out that it has become quite popular as of late. I don't think that the trend will stick around in its current format, but I think that the lingering effect of alternative grains will probably stay with us. Of course, as we continue to research the gluten issue, it could end up more common... depending on what future research finds.
Sorry, I don't mean that people shouldn't try it. More awareness is probably a good thing. Perhaps even a portion of the people actually have undiagnosed celiac disease or gluten intolerance and it'll help them. I'm sure that people have plenty of good reasons for attempting to eliminate gluten from the diet.

I just know that sometimes "fad" diets start from the strangest places and I feel bad because my personal opinion is that most "gimmick" diets don't work. Calorie restriction usually means calorie gain later on once the diet is over. There is no magic drug for weight loss, at least not at the moment. If there was, there wouldn't be so many people struggling with their own biochemistry.

dasikins
02-19-13, 01:47 PM
Has anyone here been diagnosed with celiac disease? I am thinking of getting myself tested. I have had IBS symptoms and fatigue since I was little, with no discernible cause. I always just assumed it was normal, just like my ADHD symptoms.

I recently read an article that suggested that celiac disease can cause more than just stomach problems. I've heard it implicated in chronic fatigue and fibromyalgia both. According to a research article I read, Italian children diagnosed with ADHD were significantly more likely to have celiac disease in comparison with the general public. It suggested that kids with ADHD should get tested, even if they don't report any obvious GI symptoms.

FYI:


"Celiac disease is a condition that damages the lining of the small intestine and prevents it from absorbing parts of food that are important for staying healthy. The damage is due to a reaction to eating gluten, which is found in wheat, barley, rye, and possibly oats."

Read more here:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001280/


My GI doc said that blood work can indicate a pretty accurate diagnosis. It's not always correct, but I think it is worth it to check.

I am in the same situation and unfortunately we have to go through several specialist. It could be so many different things.

arrstddvlpmnt
07-01-13, 11:57 AM
Celiac Disease and Gluten Intolerance is (surprise surprise) not well understood at this time. Many people have celiac disease and never develop notable or significant symptoms from it. While other people have gluten intolerance but not celiac disease and have significant problems.

It's theorized but not proven, that the body has different autoimmune reactions to different proteins in gluten, and celiac disease is the only one that has been identified to date.

For this reason, I didn't wait for a diagnosis (one that may never have come) to begin a gluten free diet. Within a few months, I noticed a complete reduction in symptoms, which were very intrusive in my day-to-day life. I've been on the diet for 3 years now, and my symptoms have never returned.

I'm not a medical expert, and my experience is counter to the advice of most medical professionals, but the diet helped me significantly.

It's difficult to maintain, especially at first when you don't understand as much about it, and it can get old not being able to eat a lot of foods that you used to eat.

On the flip side, you basically have to eliminate fast food from your diet altogether, and this has an ancillary benefit of improving your nutrition and overall diet in general. There are also staple foods such as rice, potatoes, and corn that are comparable to wheat in price. The downside is that you have to prepare more of your own meals, and if you want to eat a large amount of convenience foods, that's where the diet can be expensive.

I don't recommend beginning a diet without consulting your doctor first, but gluten intolerance often mimics IBS symptoms, so if you have IBS symptoms that don't respond to traditional treatment, gluten may be the cause.

Slang Tang
07-21-13, 12:41 AM
It would make sense. The constant inflammation combined with the malnutrition aspect of Celiac would be enough to put most people down.

The gut and brain work together in complex ways.

Illumination
08-01-13, 05:28 AM
I'm gluten free. Don't intend to get checked, as the symptoms are very specific and return every single time I have it, and it's SO not worth the pain and symptoms to go back on it to get checked, plus 6 months recovery.

Anyhow, on my long list of recurrent symptoms whenever I have gluten are two that may be of interest. Within 1/2 hour the gut cramps start, then two hours later I have a 4 hour window of depression, then after the usual gut cramping and frequent visits to the ladies room, I crash and sleep for about 24 hours straight.

jeaniebug
08-24-13, 10:49 PM
I was watching Dr. Charles Parker's video on anxiety, and came up with a whole bunch of videos where he talks about food sensitivities and neurological function. They introduce the video series as "Gluten-Induced Brain Damage." There is a bunch of these, but he is talking mostly about gluten sensitivity, although he also discusses milk and corn allergies. He has come across patients diagnosed as bipolar or psychotic and their whole underlying problem is food allergies. He does also talk about chronic tiredness and depression, and treatment resistant tiredness & depression. And irritable bowel syndrome... :eek:

http://www.youtube.com/watch?v=dJCZmNzkRNA&list=PL961B5A0A838EDE4F