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I Do Not Believe My Doctor.

Janelee63

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Janelee63 Newbie
Janelee63
Posted

My stomach doctor has been telling me for the last year in a half that he thinks I have Celiac disease. He did blood work and it came back negative...but he still thinks I have it and as insisted that I start the gluten free diet. I just don't believe I have this disease. I have had a history of stomach ulcers. When they flair up I have a lot of nausea and/or vomiting after I eat. However...he thinks it's a combo of celiac and a stomach ulcer. I just feel like this diet is a huge sacrifice to make when my blood work came back negative. I would not be opposed to this diet if I knew FOR sure that I had it. Maybe I am in denial...but this is an extremely hard diet to follow. Any suggestions or opinions?

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted

My stomach doctor has been telling me for the last year in a half that he thinks I have Celiac disease. He did blood work and it came back negative...but he still thinks I have it and as insisted that I start the gluten free diet. I just don't believe I have this disease. I have had a history of stomach ulcers. When they flair up I have a lot of nausea and/or vomiting after I eat. However...he thinks it's a combo of celiac and a stomach ulcer. I just feel like this diet is a huge sacrifice to make when my blood work came back negative. I would not be opposed to this diet if I knew FOR sure that I had it. Maybe I am in denial...but this is an extremely hard diet to follow. Any suggestions or opinions?

Well one thing you should know is that the blood test has a high rate of false negative results. There is another test you can do--a stool test via Enterolab. See if your doctor will accept that test. In my experience it's a rare thing to find a doctor that will suspect celiac's rather than give you more meds to calm the ulcers. Do you have other symptoms you're not mentioning? Your doctor has nothing to gain (monetarily, anyway) by telling you to try the gluten free diet and you have nothing you lose except for your nausea and vomiting. I thought the diet was going to be difficult too, but it really isn't that bad once you learn what's safe. For me, personally, my health is more important than being able to eat whatever I want. I've learned that eating gluten-containing products is not good for my health. I did go through a period of denial, but that didn't last long. My husband tried the gluten free diet right along with me. We went an entire month without eating gluten, then we ordered a pizza. I was sick almost immediately from the pizza. My husband had no bad effects. It turns out he can eat gluten, I can't. The point is, you can try going gluten free for a trial period. If gluten is not your problem you should be able to go back to eating it later. If it is your problem, though you should want to know about it sooner rather than later. There are so many diseases associated with celiac's disease and gluten intolerance that are very serious. Do you really want to risk shortening your life and decreasing your quality of life later on because you weren't willing to try eating differently?

Skylark Collaborator
Skylark
Posted

If your doctor is right, you might get rid of that awful-sounding nausea and vomiting. Is changing your diet for a couple months to see if it helps really that big of a sacrifice?

ravenwoodglass Mentor
ravenwoodglass
Posted

I am a blood test negative celiac. I would give ANYTHING to have had a doctor suggest the diet despite my negative blood tests. My being a false negative cost me a lot. You should read my signature, do you want one like that in a few years?

Take his advice, follow the diet strictly. It is not as hard as people think once you get used to it. And it is sooooo worth it in the end if the diet is what you need.

Monklady123 Collaborator
Monklady123
Posted

If I were you I might give it a try for a short time. Even just a couple of weeks might tell you something. I felt better almost immediately when I went off gluten. To be honest, it isn't really "extremely hard" to follow, especially if you have only gluten issues and not something else on top of it (like soy, dairy, or peanuts, for example). Just eat "plain" -- meat, potatoes/rice, vegetable. Fruit, yogurt. A few days ago I ate out at a Mexican restaurant (corn tamale, rice and beans, chips -- yes, I asked them about the menu). For breakfast this morning I had coffee, banana, and scrambled eggs with a bunch of different veggies in it. No bacon, because I was too lazy to cook it, but I could have had that. -- Last night, because the weather was lovely, my husband and I sat out on the deck with a gin and tonic and some chips and dip.

Anyway, my point is that it isn't terribly difficult. Do I miss crusty bread straight from the bakery? yes. But, I also remember how awful I feel after eating gluten and it's a fairly easy decision -- eat that bread and feel bad? or don't eat it and feel SO much better? Second choice wins, hands down.

So, maybe you could just give it a try for a short time? Then if you don't feel better you can go back to a gluten diet and pursue some other options. :)

WheatChef Apprentice
WheatChef
Posted

The gluten-free diet is so difficult that I cry myself to sleep everynight... Nah, just kidding. The gluten-free diet has cured my insomnia and restless leg and allowed me to get onto a normal circadian rhythm for the first time since I was a child.

It's not like you're locked into the diet for the rest of your life once you try it. If somehow you end up deciding that the numerous health benefits of adhering to a gluten-free diet aren't worth the small annoyance of sticking to the diet, you can always drop it. Most people are smart enough not to drop it though, plus every month it seems like it gets easier as yet another food manufacturer/supermarket/chain restaurant adopts a gluten-free menu.

Your options are either: you respond to the gluten-free diet after a couple of months and are then aware of one diet change you can make that can not only improve your life span but also increase your quality of life, or the tests were correct and nothing at all happens as a result of the diet and in a couple of months you can go back onto gluten dining with no issues. I really don't see how people could be wary of simply trying a diet for a few months other than the fear that on some level they think the diet may actually be the answer.

jerseyangel Proficient
jerseyangel
Posted

Wow--we usually the the opposite scenario. At this point, you have nothing to lose except the nausea if you try the gluten-free diet for a month or so. It's not difficult at all, really, once you get the hang of it.

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RollingAlong Explorer
RollingAlong
Posted

huge sacrifice?

This close to Memorial Day? perspective, please!! :)

Seriously, try it for awhile. You can change your mind. With any luck you'll see some changes very quickly. The Enterolab tests will still work even if you've been off gluten for several months to a year if you decide to go that route.

Janelee63 Newbie
Janelee63
Posted
  • Author

grrrrrrr...okay!!! But...I have not had any symptoms for weeks. I don't care about fresh baked crusty bread...I just want a regular ol' sandwich. I guess I should go check out what ALL the symptoms are.

buffettbride Enthusiast
buffettbride
Posted

There's nothing wrong with seeking a second opinion or visiting a GI specialist. Have you considered an endoscopy to biopsy and check for villous blunting? Yes, it's a sacrifice to live a gluten free life, but so is stomach ccancer.

Janelee63 Newbie
Janelee63
Posted
  • Author

There's nothing wrong with seeking a second opinion or visiting a GI specialist. Have you considered an endoscopy to biopsy and check for villous blunting? Yes, it's a sacrifice to live a gluten free life, but so is stomach ccancer.

I have been scoped many times and he has done biopsies...but what is villous blunting? When I called him about 4 weeks ago he said if my stomach did not get better he would need to scope it again. But I started taking the Carafate and my stomach returned to normal. The reason I called him is because I wanted to get my stomach to feeling better because we were going on vacation. Since we have returned from vacation...I have not had to take the Carafate...just the Kapidex daily and I have been fine. No nausea or pain.

WheatChef Apprentice
WheatChef
Posted

Unless they were specifically looking for celiacs when they did the scope and biopsies it's not a definite they would find evidence of it, heck even if they were specifically looking for celiacs when they did the scope and biopsies it still would not be a definite that they would successfully find it. Villi are the little folds in your intestine. In order to get the maximum amount of surface area for digestive functions, the inside of your intestines look a lot more like the outside of a koosh ball than the inside of a paper towel roll. With enough damage from celiac disease or a few other GI problems these little fingers get whittled down, blunted, so that the overall surface area of your intestine is much lower resulting in dietary issues.

The symptoms of celiac can cycle around depending on the current state of your immune system as well as your diet. Ulcers are often connected to immune problems (like celiac) so you should really consider at least trying out our doctor's advice. Really the two main possible outcomes of this are that you either feel different as a result of the diet and get to know the cure to what ails you, or nothing happens and you can go back to your regular diet in a few months and continue your search for the cure.

Janelee63 Newbie
Janelee63
Posted
  • Author

The symptoms of celiac can cycle around depending on the current state of your immune system as well as your diet. Ulcers are often connected to immune problems (like celiac) so you should really consider at least trying out our doctor's advice. Really the two main possible outcomes of this are that you either feel different as a result of the diet and get to know the cure to what ails you, or nothing happens and you can go back to your regular diet in a few months and continue your search for the cure.

Well Fantastic...I do have Psoriatic Arthritis which is an autoimmune disease. GRRRR again. I take two injections a week of Enbrel which lowers your immune system. So...I guess I better go shopping for some gluten-free items and try it and see what happens.

ravenwoodglass Mentor
ravenwoodglass
Posted

Well Fantastic...I do have Psoriatic Arthritis which is an autoimmune disease. GRRRR again. I take two injections a week of Enbrel which lowers your immune system. So...I guess I better go shopping for some gluten-free items and try it and see what happens.

I have arthritis also, or I should perhaps say had. You may find your GRRRR turns into YAY.... in a few months. It took about six months gluten free but my arthritis has been in remission now for almost 8 years. That was a real shock for me as I had been told it would only get worse. I had it for a long time so the joints most severely effected still look funky but they are now fully functioning and pain free.

modiddly16 Enthusiast
modiddly16
Posted

This frustrates me a bit. If I had your symptoms or frustrations, I'd do everything in my power to change it so I felt better. I don't understand why people NEED a diagnosis...if changing your lifestyle and your diet helps YOU feel better, why would you care what a Dr. said? (disclaimer: that's spoken in this case only and Dr's are smart intelligent people who typically have your best interest in mind and should be listened to if you have serious illnesses :P ). Being on a gluten free diet really isn't that hard. You can have sandwiches, just find the best bread and make sure you toast it. Is it convenient? Hell no (can I say hell on this board? :blink:) but it's not as hard as it seems.

mushroom Proficient
mushroom
Posted

Well Fantastic...I do have Psoriatic Arthritis which is an autoimmune disease. GRRRR again. I take two injections a week of Enbrel which lowers your immune system. So...I guess I better go shopping for some gluten-free items and try it and see what happens.

Welcome to the psoriatic arthritis club. I went gluten free in hopes of "curing" my PsA, but take a Humira injection every two weeks because it made no difference :(:huh: But definitely quit the gluten before it does any more harm to you. I was told that the Humira would not make me any more likely to catch something, but that it would make it harder to fight something once I caught it.

Janelee63 Newbie
Janelee63
Posted
  • Author

Welcome to the psoriatic arthritis club. I went gluten free in hopes of "curing" my PsA, but take a Humira injection every two weeks because it made no difference :(:huh: But definitely quit the gluten before it does any more harm to you. I was told that the Humira would not make me any more likely to catch something, but that it would make it harder to fight something once I caught it.

You are exactly right. I stated that wrong. Lucky for me...I have not caught anything! I had another bone density test last week. I am super excited that this one was better than the previous tests. Still have a little loss in my hip but not bad. I have been really working hard to increase my exercise and stay moving. Yes...it can be painful...but hey...it's painful when ya don't move also. I refuse to let it get me down...I am only 47 years young.

I am going to try the gluten-free diet...but I am thinking about consulting with a dietician. I simply don't know what the heck to eat. I watch my calorie count and log my food daily because I still am trying to lose 10 lbs. I noticed you are almost "food" free. LOL! Just kidding....but I did notice you are on a pretty strict diet...what DO you eat? The good news is....I love food...I am not a picky eater and like fresh good veggies and fruit...but I love cakes and breads too. :-( Can you give me an example of what you eat three times a day? I really appreciate all the help. I know some find it frustrating that I am resistant to this...it's just that sometimes I feel like a guinea pig....and I feel like the doctors might just be guessing.

  • 2 weeks later...
Janelee63 Newbie
Janelee63
Posted
  • Author

You are exactly right. I stated that wrong. Lucky for me...I have not caught anything! I had another bone density test last week. I am super excited that this one was better than the previous tests. Still have a little loss in my hip but not bad. I have been really working hard to increase my exercise and stay moving. Yes...it can be painful...but hey...it's painful when ya don't move also. I refuse to let it get me down...I am only 47 years young.

I am going to try the gluten-free diet...but I am thinking about consulting with a dietician. I simply don't know what the heck to eat. I watch my calorie count and log my food daily because I still am trying to lose 10 lbs. I noticed you are almost "food" free. LOL! Just kidding....but I did notice you are on a pretty strict diet...what DO you eat? The good news is....I love food...I am not a picky eater and like fresh good veggies and fruit...but I love cakes and breads too. :-( Can you give me an example of what you eat three times a day? I really appreciate all the help. I know some find it frustrating that I am resistant to this...it's just that sometimes I feel like a guinea pig....and I feel like the doctors might just be guessing.

Hum....perhaps I am posting under the wrong thread...is there a thread that gives menu ideas?

psawyer Proficient
psawyer
Posted

Hum....perhaps I am posting under the wrong thread...is there a thread that gives menu ideas?

For general diet ideas, you might be best to start a topic in the "Coping With" forum.

mushroom Proficient
mushroom
Posted

I noticed you are almost "food" free. LOL! Just kidding....but I did notice you are on a pretty strict diet...what DO you eat? The good news is....I love food...I am not a picky eater and like fresh good veggies and fruit...but I love cakes and breads too. :-( Can you give me an example of what you eat three times a day? I really appreciate all the help. I know some find it frustrating that I am resistant to this...it's just that sometimes I feel like a guinea pig....and I feel like the doctors might just be guessing.

Sorry to have missed your post - I was a little indisposed when it came up and missed it :rolleyes: .

When I go to a restaurant I sometimes feel like I am "food" free, but at home it's no problem.

For breakfast I usuallly have either a yogurt smoothie or the yogurt itself with sliced almonds, (sometimes a sprinkle of a rice cereal), strawberries, blueberries, banana - whatever fruit(s) strike my fancy.

At home I have a bakery that will bake me up buckwheat bread without the potato starch they normally put in and it is soft and moist and yummy; while here in the U.S. I usually have to bake my own (just for me - hubby can eat that store-bought stuff, no, no, just kidding, I do share but not a lot).

So for lunch I sometimes make myself a BLT and I can just hear you saying, but she said she couldn't eat nightshades!! Well, I have found that it is cooked tomato that really does me in; I can get away with a little fresh tomato without consequences. I also will do a grilled cheese or ham and cheese. But usually I will do a fresh salad with any of the things I can have, but especially avocado, carrot and cucumber, and a homemade dressing.

For dinner I can have any meat except regular beef in the U.S. - here I have to have organic - or fish, usually with rice, gluten-free pasta from rice, or half a baked sweet potato or sweet potato oven-baked chips, or mashed, broccoli, cauliflower, swiss chard, squash, carrots, parsnips, turnips, rutabaga, another salad maybe.

In between I snack on carrots, almonds, apples (cookies!! :o -some I don't even have to make myself)

But eating out is a whole different story, but it is doable at the right (usually upper end) restaurant.

hoot Rookie
hoot
Posted

I am going to try the gluten-free diet...but I am thinking about consulting with a dietician. I simply don't know what the heck to eat.

Here's what I eat.

BREAKFAST

Omellet with two eggs and some coconut oil, various spices

Quinoa or mixed veggies

Blueberries, strawberries or cranberries

Green tea

LUNCH

Chicken filet strips or minced organic beef

Mixed veggies

Red lentils

Various spices, sea salt, olive oil or coconut oil

Thinking of adding some pineapple for dessert.

DINNER

Same as lunch, except dark chocolate for dessert, and thinking of adding a glass of red wine.

SNACKS

Almonds, walnuts and beer salami.

I guess it depends on your character, but I find this diet very satisfying. I feel good with it, get all my required nutrition, I always know what to buy so I can stock up and buy in bulk thus I save money, I have a streamlined cooking processs and when I do treat myself, the treats taste so much better (psychologically). It may seem plain, and I guess it is, but the key here are the spices, you can make the same meal taste very different by using a different combination of spices. You learn to do a lot with a little.

majortom-thecat Newbie
majortom-thecat
Posted

You can have sandwiches, just find the best bread and make sure you toast it.

You can have toast? :blink:

ravenwoodglass Mentor
ravenwoodglass
Posted

You can have toast? :blink:

Yes, gluten free of course. I eat it all the time along with burgers and bagels and pizza and the rare cookie or cake.

majortom-thecat Newbie
majortom-thecat
Posted

Yes, gluten free of course. I eat it all the time along with burgers and bagels and pizza and the rare cookie or cake.

Oh! I thought maybe toasting it removed the gluten. :D

Janelee63 Newbie
Janelee63
Posted
  • Author

Thank you so much for all the information. I am going to work on sucking it up to try this for awhile and see if it works. What kind of alcohol do you drink? I feel certain beer is not allowed.

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