Was My Doc Right?

[celiacmom2]

Ok. So I am new here and just got diagnosed today with Celiac Sprue, my GI doc gave me some legitimate websites to look up information while he gets paperwork around to send me...he seems very good. And set me up with nutritionist.

Although I have been reading throughout websites of totally forbidding gluten products, my doc said after looking at the biopsy and results and the fact I told him I do eat wheat products every day, he thinks I have a mild form and to just start with eliminating wheat from my diet.

I asked him if I should eliminate rye, barley, and oats and he told me I shouldn't have too and only if my iron does not come back up or I start getting a severe reaction should I think about eliminating them...my iron is at 19. I don't get a severe reaction to it so to just basically take it one step at a time, so he sounded legitimate and knew what he was talking about.

I asked him about contamination of bread getting in my salad at a restaraunt or something and he said since my reaction doesn't seem to be severe, I would probably be ok...so I am releived a little...he said some people can't tolerate even a crumb. I asked if I was supposed to change my pots and pans and he felt with my case that I should be fine.

So anyone agree with this or do you disagree?

[Jestgar]

Well.....you are going to get a variety of responses, but the truth is.....no one can give you an absolute answer. While it is true that every time you eat even the tiniest scrap of gluten you will damage your intestine, it isn't clear how much damage really has an effect on your health. Most people, me included, will tell you to cut absolutely all gluten out of your diet - you just don't know what the long term consequences will be. But you also have to weigh this against your perceived quality of life. If the possibility of damage is less important to you than making a drastic lifestyle change, choose what will make your life better.

[starrytrekchic]

I would get rid of wheat, barley, rye, and oats--but I wouldn't worry so much about cross-contamination if I were you. However, you may find your reactions getting worse as you go gluten-free. A lot of people have increased sensitivity after the diet change; if that happens, you'll have to be a lot stricter.

You should definitely get follow-up testing in a year or two (not sure the exact time) to make sure your intestines are healing properly. If they're not, you'll need to be stricter.

[ravenwoodglass]

I disagree with your doctor. If you have celiac you need to avoid wheat, rye, barley and oats to stop the autoimmune reaction. You also may have more symptoms than you think you do. Celiac is not a GI disease it is an autoimmune disease. Some of us don't even have GI symptoms but that doesn't mean that damage isn't being done. Celiac antibodies can attack any system they want to. You could end up with brain and nerve damage, arthritis, gall bladder and liver problems and the list goes on including making us more likely to get certain cancers. The choice is yours but I would go on the diet strictly, that is the only way to stop the antibody attack.

[celiacmom2]

I will keep in mind just to buy gluten free food, I guess my villi(or whatever they are called) were bent a little, but not gone and there was a little swelling when he did the endoscopy that is why he tested for the Celiac so that is why he thought I had a mild reaction. So anyway I will just buy gluten free food...I seen some gluten free oats...it was Bobs red mill brand...saying they were grown in a different area than the wheat...are those pretty much free of contamination??? My grandmother has been able to eat oats(she was diagnosed with a wheat allergy in the 60's, aka Celiac). She is still well and kicking...lol at least somewhat healthy in her 80's.

Thank you for all your opinions, and posts I greatly appreciate and like to weigh them all in. I don't take this lightly as my doc said to "TRY to keep to the wheat free diet as much as possible because its a hard one to do" At least he was honest.

[TrillumHunter]

I'm with Raven. I had a decade of neurological symptoms before I finally developed GI symptoms. Like she said, this ISN"T a GI disease, it's auto immune.

Most of the neuro problems I had resolved on the gluten-free diet. But I am left with residual damage to my nerves and I've developed an inability to absorb iron in my diet. I've recently had to begin iron infusions to keep me from being anemic. They are expensive, time-consuming, and can have lots of side effects. And I'll always have a hard time getting insured.

You have to make up your own mind. I think your dr could use a refresher course on celiac as he seems to be woefully out of date. The diet seems daunting at first, but it is do-able. Your good health is worth the effort.

Take care of you!

[tarnalberry]

I don't take this lightly as my doc said to "TRY to keep to the wheat free diet as much as possible because its a hard one to do" At least he was honest.

It pisses me off when doctors say this. "Oh, this is too hard for you to do, so it's ok if you fail." I find that utter BS. They don't say "quitting smoking is too hard, so just have a couple cigarettes a day". They don't say "oh, watching your blood sugar is too hard, so just kinda do it, and we'll deal with foot amputations when we get there". They don't say "oh, exercising is just too hard, we'll just do a bypass when you need one". (Well, I suppose, to a certain degree, they do - they throw all kinds of diabetes drugs and cholesterol drugs at people early, before working on diet and exercise.)

Yes, it's hard. So are a lot of things in life. The idea that there are three things that are going to poison (damage) you, and two of them aren't very common, so go ahead and have those is ... mind-boggling. Never mind that you cannot, in the future, ever know *how much* damage is occurring - and it's not "just" the intestinal damage, it's the system effects of the autoantibodies that get into the blood stream. Your doctor has apparently not read the studies that suggest that untreated celiac disease leads to not "just" nutritional deficiencies (like anemia) and their followons (like osteoporosis), but also an increased risk of intestinal cancer (likely from the continued inflammation that occurs in the intestines while eating gluten) and other autoimmune diseases.

Is it hard to do? Yes. Is it a big learning curve? Yes. Is it likely that you'll make unintentional mistakes? Yes. Is it possible you'll make intentional mistakes? Yes. Should you take one step at a time? Absolutely YES. But that doesn't mean that those steps shouldn't be leading you to being COMPLETELY gluten free. Even then, you're going to end up getting some contamination - things happen - but you do the best you can. Does that mean watching for things at restaurants, returning salads that have croutons, bringing your own food to a friend's dinner? Yup. But does it also mean being healthy, reducing your risk of developing other chronic conditions, and - on average - increasing your life span by 10 years? Yup.

[buffettbride]

There's no such thing as a "mild form" of Celiac. If you have a diagnosis of Celiac disease via blood test and/or biopsy, you must refrain from wheat, barley, rye, and most oats for life.

[TrillumHunter]

Like people on her say, can you be mildly pregnant? No! It's an either/or kind of thing.

Buffetbrides post made me think of that.

[buffettbride]

Like people on her say, can you be mildly pregnant? No! It's an either/or kind of thing.

Buffetbrides post made me think of that.

Your description is FAR more accurate. You can't be "sorta pregnant" so it's spot on. You can't be "kinda Celiac."

[kareng]

Like people on her say, can you be mildly pregnant? No! It's an either/or kind of thing.

Buffetbrides post made me think of that.

That's great! Mildly pregnant!

Seriously, I can't tell you how many people have told me they know someone with Celiacs but its no big deal. They take croutons off salads, don't worry about crumbs, etc. I figure they either don't have Celiac or they have one of these MDs that don't educate well or know much about it.

[buffettbride]

That's great! Mildly pregnant!

Seriously, I can't tell you how many people have told me they know someone with Celiacs but its no big deal. They take croutons off salads, don't worry about crumbs, etc. I figure they either don't have Celiac or they have one of these MDs that don't educate well or know much about it.

It's the crouton-removing type people who make Celiac that much more difficult for the rest of the Celiac population. (And undereducated doctors)

[Reba32]

I think it's the undereducated doctors really. Had I not done my own research before seeing the GI for the blood test and biopsy diagnosis, I would still be sitting here eating foods with barley and rye in them, because all she and her PA said was "avoid wheat, you'll be fine". I seriously feel sorry for any other of her patients who may have Celiac and no access to the internet, or faith enough in her arrogance to take her word for it.

I sent an email to the Celiac Foundation and they said the would contact her and send her some updated information. I suggest you do that same for your doctor. Celiac is not a "mild" disease, as others have stated. You either have it or you don't. And if you have if, you have to avoid all forms of wheat, barley and rye for the rest of your life. Already your life span will be shortened just because you have the disease, don't shorten it further by continuing to eat gluten and risking other diseases to pile up on top of it!

I gotta wonder what the heck they teach in medical school

[sandsurfgirl]

I disagree with your doctor. If you have celiac you need to avoid wheat, rye, barley and oats to stop the autoimmune reaction. You also may have more symptoms than you think you do. Celiac is not a GI disease it is an autoimmune disease. Some of us don't even have GI symptoms but that doesn't mean that damage isn't being done. Celiac antibodies can attack any system they want to. You could end up with brain and nerve damage, arthritis, gall bladder and liver problems and the list goes on including making us more likely to get certain cancers. The choice is yours but I would go on the diet strictly, that is the only way to stop the antibody attack.

Yep, I agree. Blunted villi mean celiac disease. There are so many other symptoms not GI related. Many on here have had terrible irreversible damage to their bodies because of undiagnosed celiac. Your GI is wrong, sorry. You must stop the autoimmune reaction now by being totally gluten free and never look back. He isn't the one who will have to live with stumbling if you get ataxia, or the colostomy bag if your intestines perforate like one person shared on this board, or any other host of nasty things, including cancer, that untreated celiacs get.

A GI doc talked me out of a gluten free diet 7 years ago and the damage that has been done over these years is awful. I'm not sure if some of the things will even heal. Even if my body does heal, the anger I have at the doctor for talking me out of something that would have saved me from chronic infections and years of antibiotics, preterm labor and my child almost dying during birth, a horrific second pregnancy, anxiety attacks for no reason, shortness of breath, ER trips thinking I was dying from a heart attack, dizzy spells that made me afraid to drive. That anger of his ignorance will never go away. I will forgive him, but I'm not sure how to really heal from that.

You are a celiac and the gluten free diet is your freedom. Don't let his ignorance harm you in the future.

[Jestgar]

You are a celiac and the gluten free diet is your freedom. Don't let his ignorance harm you in the future.

nicely said.

[GFinDC]

I will keep in mind just to buy gluten free food, I guess my villi(or whatever they are called) were bent a little, but not gone and there was a little swelling when he did the endoscopy that is why he tested for the Celiac so that is why he thought I had a mild reaction. So anyway I will just buy gluten free food...I seen some gluten free oats...it was Bobs red mill brand...saying they were grown in a different area than the wheat...are those pretty much free of contamination??? My grandmother has been able to eat oats(she was diagnosed with a wheat allergy in the 60's, aka Celiac). She is still well and kicking...lol at least somewhat healthy in her 80's.

Thank you for all your opinions, and posts I greatly appreciate and like to weigh them all in. I don't take this lightly as my doc said to "TRY to keep to the wheat free diet as much as possible because its a hard one to do" At least he was honest.

Hi Celiacmom2,

There is a thing called the Marsh scale, which rates damage to the intestinal villi lining the instestine according to the amount of blunting. It could be your vili damage was on the low end of the Marsh scale, and that the doc thinks that means it's a small problem. But that is not what the Marsh scale means. The Marsh scale just rates the amount of damage. If your car tires have no tread left, that is very dangerous. If they have a smidgen of tread left, that may be a little better, but you are still in danger. You villi should have zero, goose egg, zilch, nada, damage for you to be healthy. Your intestines can heal the damage, but not when they are constantly exposed to gluten and the resulting antibodies attack on the villi.

The villi help with absorbing nutrients from your food. If you can't absorb nutrients (vitamins, minerals etc) effectively, then you are in trouble. Your body actually needs that stuff to repair cells and nerves, joints and muscles and those brain things that we think with.

Check out Kimball's Biology pages for a description of villi.

Open Original Shared Link

By the way, welcome to the forum, and please stick around. There are lots of experienced people who can help you with learning the diet and such. We all had to learn too, and we know it can be tough to get started. But it is very worthwhile to go totally gluten-free, including wheat, rye, barley, and oats. Some celiacs do ok with oats, but there is a percentage that don't tolerate them also.

Your doc sounds like a nice guy who is out of date and somewhat dangerous too.

[celiacmom2]

I just want to say thank you who all posted, I just scrolled down through the replies and appreciate everyones input...it is now about 5 1/2 months after being diagnosed and must tell all that my iron skyrocketed to normal, vitamin D, and B12 have gone up too...and thankfully I have internet access to get a lot of recipes and information overload LOL...I am happy to report their was problems I didn't realize were related to the Celiac that I now have proof on the diet...one I didn't mention because of embarrassed was that every now and then I felt like my head and body were falling and it would last for about 3-10 seconds, I have not had that happen where I would grab onto the wall, chair or whoever so I wouldn't fall over...(it was weird..I know), I haven't had it since after the diet, its great knowing I am not crazy...

Thank you, thank you to all who encouraged and gave advice.

God Bless

Janet

[lucia]

Glad that the diet is working for you.

One note about oats: some celiacs cannot tolerate them, but some can. I bought some Bob's gluten-free oats, and it was pretty clear that I could not!