I Want To Smack My Doctor!

[bonnie blue]

Ok so after being diagnosed in September I started feeling better on the gluten-free diet. Then for no reason about mid December started feeling bad again, diarrhea, fatigue, abominal pain, dizziness. So went back to the gastro he ran another endo and colonoscopy more blood work, he said he could not find anything, so then off we went to an endocronologist she ran blood tests, no problems there. So today back to the gastro I have lost another 18 lbs and showing signs of malnutrtition, his answer to me was go see a pyschiatrist, I just sat there dumbfounded, I asked him about using digestive enzymes running the blood work for that and he just blew me off, this is what he told me. "If you go to the pychiatrist and he says your not depressed I will send you to a specialist in Omaha, hmmmmmm ok.

I am very angry at this point, my blood tests do show I am doing well on the gluten-free diet and I am very careful in fact we are pretty much a gluten-free home.

Am I depressed over the fact that my body is not working the way I want you bet! But all I want is someone to listen to me I try to talk to them about different points that have been brought up on the boards, like testing for different food allergies and the enzymes and they just blow me off. Basically my diet consists of meat, veggies, and fruit. I need some wisdom and advice, I trust this site more then my doctor anymore, if anyone can help please do, any advice at this point would be helpful. Thanks for listening to my rant.

[Diane-in-FL]

Did those blood tests include checking for Vitamin B12 deficiency? That could still be a problem, even after being gluten free for a while. As I've discovered on this forum, it can take several months for the intestines to heal and absorb vitamins properly. My levels were too low; after taking supplements for a while, they got back to normal and my doctor said I didn't need the supplements anymore. But, it wasn't a good idea to stop. A couple of months later the dizziness and D came back. More bloodwork showed that the numbers were low again, so my doctor decided that I obviously need to keep taking the supplements.

Good luck!

[mommida]

I think vitamin B12 supplements are a very good idea.

Keep a food journal! It is a usefull tool to track down other food intolerances or cross contamination. ( I believe I was being cross contaminated at first by a bottle of vanilla. The bottles ingredients were gluten free. Would have never been able to narrow it down if I hadn't kept a food journal.)

Double check all your hygeine products. lip gloss, toothpaste, and even shampoo!

Your gut needs time to heal and some things will be harder on your system than others.

I do agree that your doctor may need to be slapped, :rolleyes:but there is a gut/brain link that doctors have not figured out.

[mcc0523]

Get a new doctor. Doctors work for you, you (and/or your insurance) pay them. If they aren't providing the services that you are paying them for, fire them.

I'm sorry you've seen such a jerk. They are many of them out there, unfortunately. Perhaps there is a local Celiac support group could give you the name of a good Celiac knowledgeable doctor.

[MsCurious]

Did those blood tests include checking for Vitamin B12 deficiency? That could still be a problem, even after being gluten free for a while. As I've discovered on this forum, it can take several months for the intestines to heal and absorb vitamins properly. My levels were too low; after taking supplements for a while, they got back to normal and my doctor said I didn't need the supplements anymore. But, it wasn't a good idea to stop. A couple of months later the dizziness and D came back. More bloodwork showed that the numbers were low again, so my doctor decided that I obviously need to keep taking the supplements.

Good luck!

Did taking the supplements again resolve the issues?

[T.H.]

So sorry that you got stuck with Dr. Idiot. :-(

Okay, here's just a slew of thoughts that might/ might not apply.

1) on top of the vitamin B, might look at vitamin D levels too. If you get a supplement, vitamin D3 is the type you want to look for. If you're in an area where December is winter, they might be getting lower.

2) Can you think of ANYTHING in your life that changed around December? New job, new route to work, new shampoo, new butcher, new pet, anything? With the possibilities of allergies, anything new in your environment might be an issue. Dust from some type of construction material, chemicals in the shampoo, something in a new pet's food, etc...

3) You said you were feeling bad again - are these the same symptoms you experienced BEFORE you went gluten free, or are they new/different? If they are the same, then I'd try and look at your food for gluten cc, even if your numbers are good. If they are the same but more severe, I'd still look at gluten. If they are different, I think it's more likely that you've got something else going on...but as we found out with my daughter, you can develop new symptoms and it can STILL be gluten.

I've met a few people who still had symptoms even when the damage wasn't enough to give them a bad result on the blood test. I'd go with the above suggestion of a food journal, combined with a slight change in diet, that can help you track down any possible food related offender in your diet, whether it's gluten cc, a whole food that's the problem, or cc from ANOTHER food that you've started to have a reaction/intolerance to.

One thing that I would highly recommend, based on what happened with our food journaling, is to be very careful in how you journal. You can look at your food choices and make 3 days worth of menus for foods. Then eat one day's menu for 2-3 days, switch to the next day's menu, then switch to the next days. Then repeat. Write down times of eating, brands and source for your food, and reactions. This way, you have a uniform diet that is easier to catch a consistent reaction pattern from, you know?

Another thing? I would VERY much recommend being very careful to try and separate any similarities between meals for the 3 menus. Don't repeat any brand/company's food for any of the menu days. Don't repeat any food in the same family (like nightshades, for example). Don't repeat foods from the same source (like meat at the butcher counter). Don't repeat any of the same foods (like salt, oil, etc...). Or at the very least, don't repeat these from meal to meal.

The reason I mention this? It will help you eliminate possible contamination sources, or allergy sources. I used oils from a particular company that turned out to process wheat germ oil on the same line. So I would use different oils for the kids on different days, but they were all from the same company, and they ALL made them a little ill. Took forever to figure that one out. Any food from the same company can run the same cc risk (for gluten or other allergens).

Avoiding food families in the menus helps you track down allergies a bit better.

Avoiding foods from the same source, like the butcher's, helps avoid any cc practices they may have developed. If you get your meat that was cut up at the local store, they may have a new employee who is less careful about cc, or a new food that requires different prep areas and spreads the cc around, or new shared equipment to chop up the meat, etc...

Avoiding the same food helps eliminate possible problems from allergies and also from the same sources of cc. An example that we had was salt. All iodized salt - which is what I was using on every meal in our elimination diet - contains corn to stabilize the iodine. They also usually have some type of anti-caking chemical added. So if you have salt every meal and you've developed some kind of reaction to the anti-caking chemical, etc... Problem. You just react constantly.

A couple other things we've run into that involved a sudden resurgence of symptoms. My salt. The company changed packaging practices and ended up cc'ing it with something that made me sick every time I had my salt (I have other allergies, too).

Soon after, the meat company that made our ground meat started making sausages with wheat. They shared the same grinder for both, didn't get it clean enough for our level of cc issues, and so our meat was making me sick. With the salt thing having just happened, I was doing these little science experiments where I cooked the meat in water, with salt, and with oil, trying to see if one of them was an issue. I thought the meat in water was going to be my baseline 'feel good' test, and it turned out to be the problem!

Also had a farmer change practices with his sweet potatoes and he started putting wax coatings on them (not uncommon, even with organic produce). That ended up having something I react to in the wax coating. Another farmer used a soap to clean his produce that seems to make me react.

There's just SO much that comes into contact with your food before you get it that it's tricky to track down, sometimes. Doable, but tricky.

4) I'd also take a look at fructose malabsorption - it's something that they believe is more prevalent in people who already have gut issues. I don't believe it typically involves dizziness, however it does tend to have lots of gut issues. Lots of fruits, veggies, grains, legumes, etc... can set it off. Might be worth a google, at least.

Sorry I don't have anything else - very much hoping you can track down the source of your problem...and that your doctor gets a new brain. Maybe he can go to the Wizard of Oz; I hear he hands those out. ;-)

[frieze]

your doc's idea may not be without merit, but the approach was ... off the mark! Now he/she (probably he, lol) has set you up to look like an angry/depressed person. Change docs or just don't go back for awhile.

Keep food diary, see if you can chase down the allergies on your own. Take supplements, making sure they are gluten and dairy free. See if you are actually taking in enough calories!

Maybe a Paleo/elimination diet is in order? And you don't need a doc to get digestive enzymes, just go to the health food store.

Good luck

[chasbari]

So sorry that you got stuck with Dr. Idiot. :-(

Okay, here's just a slew of thoughts that might/ might not apply.

1) on top of the vitamin B, might look at vitamin D levels too. If you get a supplement, vitamin D3 is the type you want to look for. If you're in an area where December is winter, they might be getting lower.

2) Can you think of ANYTHING in your life that changed around December? New job, new route to work, new shampoo, new butcher, new pet, anything? With the possibilities of allergies, anything new in your environment might be an issue. Dust from some type of construction material, chemicals in the shampoo, something in a new pet's food, etc...

3) You said you were feeling bad again - are these the same symptoms you experienced BEFORE you went gluten free, or are they new/different? If they are the same, then I'd try and look at your food for gluten cc, even if your numbers are good. If they are the same but more severe, I'd still look at gluten. If they are different, I think it's more likely that you've got something else going on...but as we found out with my daughter, you can develop new symptoms and it can STILL be gluten.

I've met a few people who still had symptoms even when the damage wasn't enough to give them a bad result on the blood test. I'd go with the above suggestion of a food journal, combined with a slight change in diet, that can help you track down any possible food related offender in your diet, whether it's gluten cc, a whole food that's the problem, or cc from ANOTHER food that you've started to have a reaction/intolerance to.

One thing that I would highly recommend, based on what happened with our food journaling, is to be very careful in how you journal. You can look at your food choices and make 3 days worth of menus for foods. Then eat one day's menu for 2-3 days, switch to the next day's menu, then switch to the next days. Then repeat. Write down times of eating, brands and source for your food, and reactions. This way, you have a uniform diet that is easier to catch a consistent reaction pattern from, you know?

Another thing? I would VERY much recommend being very careful to try and separate any similarities between meals for the 3 menus. Don't repeat any brand/company's food for any of the menu days. Don't repeat any food in the same family (like nightshades, for example). Don't repeat foods from the same source (like meat at the butcher counter). Don't repeat any of the same foods (like salt, oil, etc...). Or at the very least, don't repeat these from meal to meal.

The reason I mention this? It will help you eliminate possible contamination sources, or allergy sources. I used oils from a particular company that turned out to process wheat germ oil on the same line. So I would use different oils for the kids on different days, but they were all from the same company, and they ALL made them a little ill. Took forever to figure that one out. Any food from the same company can run the same cc risk (for gluten or other allergens).

Avoiding food families in the menus helps you track down allergies a bit better.

Avoiding foods from the same source, like the butcher's, helps avoid any cc practices they may have developed. If you get your meat that was cut up at the local store, they may have a new employee who is less careful about cc, or a new food that requires different prep areas and spreads the cc around, or new shared equipment to chop up the meat, etc...

Avoiding the same food helps eliminate possible problems from allergies and also from the same sources of cc. An example that we had was salt. All iodized salt - which is what I was using on every meal in our elimination diet - contains corn to stabilize the iodine. They also usually have some type of anti-caking chemical added. So if you have salt every meal and you've developed some kind of reaction to the anti-caking chemical, etc... Problem. You just react constantly.

A couple other things we've run into that involved a sudden resurgence of symptoms. My salt. The company changed packaging practices and ended up cc'ing it with something that made me sick every time I had my salt (I have other allergies, too).

Soon after, the meat company that made our ground meat started making sausages with wheat. They shared the same grinder for both, didn't get it clean enough for our level of cc issues, and so our meat was making me sick. With the salt thing having just happened, I was doing these little science experiments where I cooked the meat in water, with salt, and with oil, trying to see if one of them was an issue. I thought the meat in water was going to be my baseline 'feel good' test, and it turned out to be the problem!

Also had a farmer change practices with his sweet potatoes and he started putting wax coatings on them (not uncommon, even with organic produce). That ended up having something I react to in the wax coating. Another farmer used a soap to clean his produce that seems to make me react.

There's just SO much that comes into contact with your food before you get it that it's tricky to track down, sometimes. Doable, but tricky.

4) I'd also take a look at fructose malabsorption - it's something that they believe is more prevalent in people who already have gut issues. I don't believe it typically involves dizziness, however it does tend to have lots of gut issues. Lots of fruits, veggies, grains, legumes, etc... can set it off. Might be worth a google, at least.

Sorry I don't have anything else - very much hoping you can track down the source of your problem...and that your doctor gets a new brain. Maybe he can go to the Wizard of Oz; I hear he hands those out. ;-)

Sorry you don't have anything else?! This is a show I would watch.. you could start a new series called "The Gluten Detectives" and I would watch every episode. I am going to go back and take notes on all these suggestions. Excellent post.

CS

[T.H.]

a new series called "The Gluten Detectives" and I would watch every episode.

Ha, oh man...now I want someone to make this as a series!! :-D

[Marilyn R]

Skin prick testing with an allergist was an eye-opener for me. Turned out I'm allergic to pecans (an ingredient in a gluten-free SF DF bar I'd been snacking on fairly regularly. Some other surprising allergies turned up. (Turkey, clams, tomatoes.) I'm not functioning at the level I'm used to, but the improvement is noticable.

Good luck figuring out what's bugging you, I wish you good health.

[MitziG]

I empathize with you. Can't tell you how many times I have been told my health issues are being caused by depression. Who isn't depressed when they feel like crap all the time?

HOWEVER...depression does play a role and can compound the effects of everything else. As someone else mentioned, there is a brain/gut connection. While I would follow up on the advice of the others, I would also keep an open mind to the possibility. Most anti-depressants suck- they make you fat and kill your sex drive- which in itself is more reason to be depressed. So if you DO end up going that route and giving one a try, I would highly recommend Wellbutrin XL. Most people lose a little weight on it, increases sex drive in many and is a stimulant which helps with fatigue. Just something to keep in mind...

[IrishHeart]

PLEASE have your B-12 and FOLATE levels checked.

These forms of anemia are VERY common in celiac due to malabsorption and cause the symptoms you describe, esp. the depression and fatigue.

I had them tested because I am still fatigued and depressed after being totally gluten-free and found my FOLATE level was low and need supplementation. (Even though the B-12 was high)