Gluten Free Diet And Pain

[pyoplasty]

My brother, who had been in his final year of medical school, was diagnosed with celiac disease about 6 months ago. He has been on gluten free diet for several months and has told our family that he is unable to work or go to school, and probably wont be able to for a year or two, because he is so exhausted due to "his diagnosis." He attends his doctors appointments alone, and about two months ago, after an appointment, he told us that his doctor prescribed hydrocodone, for him to take every four hours because of his "severe pain hand pain from the celiac disease." Also, he says that his physician has told him to take OTC sleep aids because of "the celiac disease and its interference with sleep." And FINALLY, this nosey sister would like to know if anyone else diagnosed with celiac disease has had the suggestion made by their physician, to drink enormous amounts of coke and sprite to "get in alot of calories." In all of my research on celiac disease, I have not found information on any of these subjects and thought that this might be the best way to get some answers (posting).

Does anyone else experience these issues or know if they are normally, or even rarely, attributed to celiac disease? If not, we are looking at an eating disorder, drug problem or some other issue that needs to be addressed. He comes back from his appointments with brochures to give us, but his intestinal biopsy came back "inconclusive," so maybe it is ??? PLEASE HELP!!!

THANKYOU

[Nantzie]

For over two years I had pain so bad that I could barely walk - it would take me over two hours to do my grocery shopping and I would have to use the cart as a walker. When I came across celiac, I was actually planning on talking to my doctor about what I needed to do to get a handicapped placard for my car. Just basic things were getting to be too much.

I found out about celiac because I had what they thought was IBS. I figured the celiac testing was worth a shot, but I only thought it would help the IBS symptoms. I had no idea at all the pain even MIGHT be related. It turns out that the pain went away like somebody flipped a switch. It still blows me away. Now, even when I'm exposed to a small amount of gluten (what we call cross-contamination), I start walking like an old man within hours. It's bizarre. If I didn't live through it, I'm embarassed to say that I wouldn't believe it either.

I had a list of gluten-related symptoms as long as my arm. My best friend knows about 95%, my husband maybe 75%, my close relatives less than 50%, probably more like 30%. A lot of the symptoms are embarassing to the point of being horrifying. And not something you really want people to know about you.

I haven't personally been told that I should drink or eat large amounts of anything specific, but people who are underweight when they are diagnosed with celiac are often told to load up on the calories in any way that they can. Often it can seem like the only choice is junk food because eating gluten-free is naturally healthy; basically meats, veggies, fruits, nuts, rice and potatoes. Chocolate is gluten-free. Sodas are gluten-free. Many brands of chips are gluten-free. You add in other food intolerances like the dairy intolerance that invariably accompanies celiac for at least the first few months, if not longer (took about a year until I could eat dairy). Then there's soy (two random months for me), corn, MSG, egg, etc. that can show up at any point in the first year or two only to disappear. For example, if he's dealing with the initial dairy intolerance, he can't have chocolate. It may be that sodas are the only high-calorie thing he can tolerate right now.

But I DO understand what you're saying. You're really worried that there might be something else, or something in addition to celiac. I wish I had some advice about that part. But I can tell you that pain is indeed a common part of celiac. Not everyone gets it, but many of us do.

The only reason I wasn't taking Vicodin (hydrocodone) when I was having all that pain was because when it started I had a 1.5 y/o and a newborn. My husband was working 14-16 hours a day, I don't have family of my own, and everyone in his family was working, as were my friends. I'm a tough chick and I have a high threshold for pain. I had both of my children naturally. 'Nuff said. I've also always had a strong independent streak. So when this pain hit me and got so bad I was thinking about getting a handicapped placard, it was bad. I'm not surprised at all that your brother is on hydrocodone for it.

I know this is a long reply, but I also have to tell you about the sleep aspect. I get what I call "brain-buzzing insomnia". It's the most horrible thing. My mind goes 100mph, and it just won't shut off. Ever since I went gluten-free, I don't have it anymore, ever, unless I get glutened.

With some of the lingering symptoms, it actually sounds to me like he's getting some hidden gluten in somewhere. Often, doctors are the least informed about what it takes to be truly gluten-free. He probably needs to be even more strict than he's being.

An inconclusive biopsy is also common. The intestinal damage from celiac is microscopic as well as patchy. I've heard it explained that it would be like splattering paint on a wall, blindfolding someone and having them touch the wall in five different places. Depending on the amount of damage that is there, there can be less of a chance of getting a positive biopsy.

Well, I hope this has been helpful. Spend some time looking at our archives, there is a lot of information here.

Nancy

[Guest Greggy]

I can tell you as someone who came to this board after suffering for 2 years with male chronic pelvic pain that a gluten-free diet has helped me a lot & many other men with the same condition. For me & these men gluten acts as a mast cell & nerve stimulator hence a pain enhancer on a big scale!!

[gfp]

This is going to sound a bit rough but your here because you're worried about your brother so I will just say it straight...

Many of us here have problems with families believing us... heck many of us have problems with MD's believing us!

As Nantzie recounts we don't advertise our symptoms...

I'm going to hazard a guess that your brother is somewhere along not feeling comfortable and feeling noone will believe him...

He might just throw some stuff in anyway, if you don't believe him why not as it were?

Many of us has families who worry we are obsessing with celiac disease, like its a new cult-religion with secret membership and we are being somehow conned into not eating what we like.... don't take my word for it, read the threads!

"My family doesn't understand" is a recurring theme....

He can also be depressed, its not unusual becuase gluten screws with your brain if your celiac....

Now if you step back and look at all this together you can really help.... I don't think its a single thing, I don't think your family is any different to many of us... but you can make an effort to tell him you believe and find out more...I'd say its best you really do believe, not just say so .. hence spend some time searching through this board and make your own descisions....

Sorry if that sounded a bit too direct but hopefully this is easier to take comiong from someone you don't know

[RiceGuy]

I have to agree that there is a matter of getting family and friends to believe what we go through. However, I think your brother is either making stuff up, or his doctor is an idiot (as many of us have experienced).

I think if I where in your position, I'd ask him what blood tests have been done, and what supplements the doctor has told him to take. Any doctor with the knowledge and qualifications necessary to help a Celiac patient would check for nutrient deficiencies such as B vitamins, vitamin D, magnesium, calcium, etc. Even if the tests suggest these to be acceptable, it has been found helpful to supplement some. Myself and others can tell you that B12 and magnesium go a long way toward helping with various symptoms including pain.

I don't think I'd make reference to the nutrients until I was certain whether he has been informed on the subject. That way it avoids giving him the idea for possible deception. Again, he may not be making up symptoms or the suggestion from his physician, but obviously something is wrong with this picture.

[johnsoniu]

Most of the issues you referred to are fairly common to celiacs. Sometimes the severity and length of the effects can vary widely due to age, overall health, and how long you've been damaging your body with gluten before being diagnosed.

Consuming a lot of calories is not an outrageous request by a doctor, especially if weight loss and malabsorption or an issue. Getting those calories thru soda pop seems kinda weird, but I don't know if he may be having other intolerances at this time. If he is, that may be one of the few options to get a lot of calories without stressing an already damaged digestive system further. If he isn't having other intolerance problems, there are plenty of other healthier options to load up on calories. I'm currently eating between 4000-5000 calories a day, and I don't load up on any junk.(Of course, I eat pretty much from sun up to bedtime .

That all being said, it does sound like there might be some depression issues, which can easily be attributed to celiacs as well. The best thing you can do is support him and help him deal with what you know for sure he has right now, celiac disease. Learn all you can, there's a wealth of info on the internet and several must-have books: "Celiac Disease: A Hidden Epidemic", "Dangerous Grains" and the updated version "The Gluten Free Bible" are very good resources.

The last thing he needs to worry about right now is if his own family really believes he is "sick". Chances are he's feeling very alone right now and really needs some support.

[RiceGuy]

Nicely said johnsoniu!

[gfp]

Nicely said johnsoniu!

Yep .. well put...

@pyoplasty

The thing is if your brother came here himself and presented that we would have no problem believing it...

A combination of mis-informed MD's and the way MD's deal with patients makes it all seem believeable...

Drinking pop to put on weight sounds a bit stupid... so does advising a diabetic who can control their insulin through diet to just not bother since most MD's find most of their diabetic patients are not willing to stick to a diet or loose weight.

Its really that simple in some ways... a MD might just tell him whatever he thinks he'll do regardless of it not being the healthiest option...

At some point you are going to have to decide if you trust your brother ... but its not so simple because he also has to trust YOU....

There is no reason he is not telling 100% the truth as he was told it... that doesn't mean he is... but somehow you or he are going to have to broach this........ sooner or later .... I'm guessing he's telling mostly the truth but that doesn't mean he is... or is not. He might also just have added a few "white lies" as well.... he could have good reason like he's waiting for some other tests for something more serious and doesn't want to worry the family or he could just have thought "they think I'm lying anyway so what the heck" BUT he could easily by no great stretch of the imagination be telling the complete truth!

However ... and this is the important part .... IT REALLY DOESN'T MATTER IN SO FAR AS YOU UNDERSTANDING AND HELPING HIM. You so obviously care but I detect that your looking for evidence against what he's saying and the problem is we have ALL (more or less) been told incredible BS from MD's that makes gaining weight from soda sound sane...

If he came here asking for advice I woiuld believe his story at least enough to advise him his MD is a quack and gaining weight from pop is not a good way to do it. So like I say you have to decide if he's telling the truth as he beleives it and his MD is a quack or he's simply making stuff up OR he maybe just added a few things in for convenience....

I really think the only person can give you these answers is your brother.... and I get the impression we beleive him perhaps more than you.... DON'T WORRY your not a cruel freak... etc. THIS IS SO COMMON as to be practically normal for us... many many of us have probs with family members beleiving us... and we still love them.... they just don't get it...

HOWEVER... you have gone one better than many of our families and actually set out to help him by finding out for yourself...

Perhaps the best thing you can do is perhaps admit you found it hard to believe BUT you found this site and read up and your sorry (one of you has to make the first move).... perhaps he'll admit he was laying some parts on a little thick, perhaps it will just turn out he's repeating what he has been told by his MD... either way your a step closer

[Jestgar]

There is also the "personal interpretation" of what you're told. If he's feeling deprived because he has to alter his diet, he might have heard "7up" instead of "drink more nutritious fluids".

As for the other points-

I didn't realize how much other body parts hurt until I was far enough out of the depression and headaches to be aware of my body.

My sleep is STILL touchy and I'm 10 months gluten-free.

I was incredibly exhausted after going gluten-free. Mind you, I was incredibly exhausted while eating gluten, but I wasn't as aware of it (see first point).

Let him be a baby. Support him, coddle him, and tell him you are delving into this to find out as much as you can. That way, if there are other issues, it'll be harder for him to snow you.

[cyberprof]

For over two years I had pain so bad that I could barely walk - it would take me over two hours to do my grocery shopping and I would have to use the cart as a walker. When I came across celiac, I was actually planning on talking to my doctor about what I needed to do to get a handicapped placard for my car. Just basic things were getting to be too much.

I found out about celiac because I had what they thought was IBS. I figured the celiac testing was worth a shot, but I only thought it would help the IBS symptoms. I had no idea at all the pain even MIGHT be related. It turns out that the pain went away like somebody flipped a switch. It still blows me away. Now, even when I'm exposed to a small amount of gluten (what we call cross-contamination), I start walking like an old man within hours. It's bizarre. If I didn't live through it, I'm embarassed to say that I wouldn't believe it either.

I had a list of gluten-related symptoms as long as my arm. My best friend knows about 95%, my husband maybe 75%, my close relatives less than 50%, probably more like 30%. A lot of the symptoms are embarassing to the point of being horrifying. And not something you really want people to know about you.

I haven't personally been told that I should drink or eat large amounts of anything specific, but people who are underweight when they are diagnosed with celiac are often told to load up on the calories in any way that they can. Often it can seem like the only choice is junk food because eating gluten-free is naturally healthy; basically meats, veggies, fruits, nuts, rice and potatoes. Chocolate is gluten-free. Sodas are gluten-free. Many brands of chips are gluten-free. You add in other food intolerances like the dairy intolerance that invariably accompanies celiac for at least the first few months, if not longer (took about a year until I could eat dairy). Then there's soy (two random months for me), corn, MSG, egg, etc. that can show up at any point in the first year or two only to disappear. For example, if he's dealing with the initial dairy intolerance, he can't have chocolate. It may be that sodas are the only high-calorie thing he can tolerate right now.

But I DO understand what you're saying. You're really worried that there might be something else, or something in addition to celiac. I wish I had some advice about that part. But I can tell you that pain is indeed a common part of celiac. Not everyone gets it, but many of us do.

The only reason I wasn't taking Vicodin (hydrocodone) when I was having all that pain was because when it started I had a 1.5 y/o and a newborn. My husband was working 14-16 hours a day, I don't have family of my own, and everyone in his family was working, as were my friends. I'm a tough chick and I have a high threshold for pain. I had both of my children naturally. 'Nuff said. I've also always had a strong independent streak. So when this pain hit me and got so bad I was thinking about getting a handicapped placard, it was bad. I'm not surprised at all that your brother is on hydrocodone for it.

I know this is a long reply, but I also have to tell you about the sleep aspect. I get what I call "brain-buzzing insomnia". It's the most horrible thing. My mind goes 100mph, and it just won't shut off. Ever since I went gluten-free, I don't have it anymore, ever, unless I get glutened.

With some of the lingering symptoms, it actually sounds to me like he's getting some hidden gluten in somewhere. Often, doctors are the least informed about what it takes to be truly gluten-free. He probably needs to be even more strict than he's being.

An inconclusive biopsy is also common. The intestinal damage from celiac is microscopic as well as patchy. I've heard it explained that it would be like splattering paint on a wall, blindfolding someone and having them touch the wall in five different places. Depending on the amount of damage that is there, there can be less of a chance of getting a positive biopsy.

Well, I hope this has been helpful. Spend some time looking at our archives, there is a lot of information here.

Nancy

For the two years before diagnosis, I got up every morning and I'd tell my hubby that I felt like I'd been run over by a truck- everything hurt.

I also had trouble sleeping and the following every day: mind-racing, heart-racing, dizziness, heartburn, moderate depression and tremendous "fuzzy brain" that made it hard to do my job and be a good mom too.

Pyoplasty, I hope your brother gets well soon AND BECOMES A GREAT DOCTOR SPECIALIZING IN CELIAC DISEASE. (And don't forget, you and your siblings should be tested for celiac too, it is recommended for all first-degree relatives.)

~Laura

[cybermommy]

For over two years I had pain so bad that I could barely walk - it would take me over two hours to do my grocery shopping and I would have to use the cart as a walker. When I came across celiac, I was actually planning on talking to my doctor about what I needed to do to get a handicapped placard for my car. Just basic things were getting to be too much.

Nancy

You have just given me hope!

I have been in sever pain for 20 years. I have suffered from celiac disease all my life (47 yrs). I have been through misdiagnosis & more than a little of the "we don't know why you're having problems (so we will play ostrich & bury our heads in sand so it will go away)". I could list the problems i've had, but you guys obviously know. I had always attributed the pain to past injuries (that should not hurt this bad). I am in an electric wheelchair because of the pain. I can't bear weight a lot of the time. I have been on disability for 14 yrs. I hate the mind numbing drugs so i rarely take them. (I must be functional as a single mom.)

I figured out my IBS was a misdiagnosis a long time ago, but had no clue what it really was & gave up fighting the Drs for an answer. I found out about celiac disease while researching gluten allergies for a friend's toddler i take care of. I have extended familly members w/ gluten allergies/intollerance. I figured it out & cut out the major gluten in my diet about 6 mos ago. I still was getting traces. (The info all said don't go gluten free untill Dr says to.) So I shared my findings w/ my doctor. Yep, I was right. So now i am struggling to be totally gluten free. (About a week now)

I figured i would have to deal w/ the pain & i would just have to "grin & bear it" until the day i died. Your comments give me hope that i can have my life back!!! Tank You so much!!

To the lady w/ the origional question: You obviously care a great deal for your brother. Support him, talk w/ him about the quality of medical care he may be recieving (He will have to be proactive on his own behalf) & if u can be open w/ him (since u posted ?) refer him to this site for support. It helps a lot. He can also get info on lesser known sources of gluten (he may still be ingesting).

God Bless,

Deb

[Nantzie]

Wow. I didn't realize how LONG my post was until someone quoted it.

I know these replies are a lot to take in. We're glad you're here asking about it. I hope you don't feel stepped on.

You haven't posted again, so I'm not sure if your brother is underweight or is dealing with malabsorption, but if he is, maybe you could send him a box of a few gluten-free goodies from Kinnikinnick, which is a big favorite around here.

Open Original Shared Link

My personal favorites are -

Chocolate Dipped Donuts

Montana's Chocolate Chip Cookies

Tapioca Rice Cinnamon Buns

Nancy

[kbtoyssni]

I was prescribed pain meds just before I went gluten-free because of joint pain. I was also diagnosed with fibromyalgia. Now that I've gone gluten-free, all the fibro symptoms have gone away so I obviously didn't have it, but at the time that was what the pain was like. I am assuming your brother has similar pain. It might be worth it to peruse some fibromyalgia message boards to get a sense of how debilitating and painful it can be. For a few months I took pain killers most days. It really helped me get though the first month or two while my body healed. Now I just have them for the times when I'm accidentally glutened.

If his celiac is bad, he probably will need to eat more calories to avoid malnutrition and keep weight on. I don't think drinking tons of soda is a good way to do it, but his stomach may still be pretty upset to the point where he can't stomach food. Again, when I get glutened, I start the day off with a nice sprite just because it goes down easily. I used to drink a lot of gatorade to keep weight on because I think it's a bit healthier than soda; maybe you could suggest this.

I also had insomnia plus chronic fatigue which is a bad combination. Again, the sleep aids may be a good idea in the short term until he heals.

The thing that sticks out for me is that you don't seem to have very good communication. You are obviously very concerned about your brother and want to help him. I'm guessing he is feeling very overwhelmed. The diet is a lot to figure out in the beginning and if he's still feeling sick it may be more than he can handle. You may be able to help him with calling companies to find "safe" brands, finding recipes for him, cooking for him, etc. I would also suspect depression. This is a major life change and being sick for so long can make you not want to get out of bed even when your body heals enough that you are physically able to. If he's not getting better, he may also have a temporary issue with dairy. That can be very hard to digest until the body heals.

[pyoplasty]

Thankyou EVERYONE,

Ya'lls responses have been very sincere and tremendously helpful. You guys are obviously very supportive of one another to a degree that I would have never believed if I had not seen it myself. To have a forum, for discussions, suggestions and questions for persons with celiac and gluten intolerance to learn of other's experiences and solutions has got to be extremely helpful. I am going to tell my brother about this forum because I think he does feel alone and is definitely depressed, and will be able to learn ALOT from you guys.

THANKYOU AGAIN AND AGAIN,

PYOPLASTY

[johnsoniu]

Thankyou EVERYONE,

Ya'lls responses have been very sincere and tremendously helpful. You guys are obviously very supportive of one another to a degree that I would have never believed if I had not seen it myself. To have a forum, for discussions, suggestions and questions for persons with celiac and gluten intolerance to learn of other's experiences and solutions has got to be extremely helpful. I am going to tell my brother about this forum because I think he does feel alone and is definitely depressed, and will be able to learn ALOT from you guys.

THANKYOU AGAIN AND AGAIN,

PYOPLASTY

And Thank You, for caring about your brother enough to go the extra mile and educate yourself. Please visit whenever you have questions or feel a little frustrated yourself. There is even a topic folder for friends and loved ones of celiacs. Good luck!!

[CarlaB]

Thankyou EVERYONE,

Ya'lls responses have been very sincere and tremendously helpful. You guys are obviously very supportive of one another to a degree that I would have never believed if I had not seen it myself. To have a forum, for discussions, suggestions and questions for persons with celiac and gluten intolerance to learn of other's experiences and solutions has got to be extremely helpful. I am going to tell my brother about this forum because I think he does feel alone and is definitely depressed, and will be able to learn ALOT from you guys.

THANKYOU AGAIN AND AGAIN,

PYOPLASTY

Everyone's given you great advice, but there was one question you asked that didn't get answered ... about the Coke and Sprite ... ... it's really bad for anyone. In the beginning of the diet, however, I would eat a pint of Haagen Dazs as a snack in the evening so that I could maintain my weight and maybe gain some. A whole pint has about 1000 calories. I've been where your brother is in that regard, but I think soda is even a poorer choice than ice cream! Soda can deplete your body of minerals that celiacs are low in to begin with (I'm thinking magnesium here).

I hope he's feeling better soon. Celiac can wreak havoc on your body and mind.

[Nantzie]

Soda can deplete your body of minerals that celiacs are low in to begin with (I'm thinking magnesium here).

I had no idea it did that. Do you know if sparkling water does the same thing? I used to just mix fruit juice with sparkling water. I was thinking about going back to doing that instead of feeding my soda addiction.

Pyoplasty, you're so sweet... I hope your brother comes and visits us here. I don't know how people do it without this group. Most doctors just know the "don't eat it" part of the situation and have no idea about the real nitty-gritty of it. It all just comes with experience and the advice of other celiacs.

Nancy