Not Serious?

[Ophelia42]

Hello all... I'm new here.

I just got back from my doctor's appointment and he let me know that the blood tests were positive for celiac. However, he said that I didn't need to worry too much about it, as so many people are diagnosed with it now that it won't kill me.

(I also had allergy testing done yesterday and showed up having a significant allergy to practically every substance known to man, including eggs, corn, milk & soy.)

The doctor told me to avoid all these foods (eat only rice, chicken & tomatoes) for 2-3 weeks while the Allegra-D & Singulair took effect, and then to start reintroducing things until I developed symptoms again.

From everything I've read on the web... if you show up with positive blood tests for celiac, you need to avoid gluten. period.

So my question is... has anyone else had this experience and whose out of line here, my doctor or me?

[Ursa Major]

Hi Ophelia, and welcome to this board.

Well, your doctor is as clueless as they come! And of course you're right. Having celiac disease means being gluten-free for life. And yes, eating gluten as a person with celiac disease IS life threatening. Because you'll be malnourished as a result of malabsorption of essential nutrients, which leads to all kinds of severe problems, including other autoimmune disorders. Plus, if your bowels are inflamed/irritated/partially destroyed you'll eventually usually develop cancer somewhere in your digestive system, if you stay on gluten.

So, please don't listen to your doctor on diet matters. You'll get all the right information here, you've come to the right place.

Also, forget about meds for allergies. Start out avoiding the foods you're allergic/intolerant to. As your small intestine heals, being off gluten, you'll likely be able to reintroduce some of those foods again. But you may truly be intolerant to dairy, soy, corn and eggs, as those are very common for people with celiac disease, and may have to be avoided for life.

[Ophelia42]

I should clarify... the allergy medications are mainly for severe hayfever/mold/dust allergies.

And thank you for the reply.

[Guest Kathy Ann]

I normally have great respect for doctors and what they do. But in what other profession could you remain so entirely clueless about something SO important and still get paid the BIG bucks?!

In my humble opinion, your doctor is wrong. Unchecked celiac can most assuredly kill you. But the joyous thing about it, is that the remedy is simple and thorough.

Don't eat gluten.

As you will see on this board, that assignment can be a challenge at times, but at least the answer is already there sitting on a silver platter for us.

You may not be used to it yet, but you are about to discover that you may know more about this than your doctor does.

[VydorScope]

Step 1: Aviod all gluten (this site can help alot with that), and any food your alergic too.

Step 2: FIND A NEW DOCTOR

that will be $50, please pay on your way out

[Guest Kathy Ann]

[Ursa Major]

I agree with Vincent here, please do find yourself a new doctor!

Ophelia, the allergy medication you're taking for environmental allergies WON'T be effective for food intolerances. You really have to avoid eating them. Your doctor is even more clueless than I thought! Good grief.

I forgot to mention that you also need to check all your personal care products for gluten, and replace the ones that contain it. That includes shampoo/conditioner, soap, lotion, lipstick, toothpaste etc. Look out for wheat germ oil, barley extract, oat bran etc.

Also, if you're going to toast gluten-free breads, you absolutely need a new toaster, as you can't clean the old one enough to make it safe. The same goes for plastic colanders, scratched non-stick cookware and wooden cutting boards and cooking spoons.

[CarlaB]

My seasonal allergies disappeared completely going gluten-free. My 18 year old daughter's only real symptom was seasonal allergies. You may see them clear up without meds. Lots of water helps allergies, too.

[eKatherine]

I just got back from my doctor's appointment and he let me know that the blood tests were positive for celiac. However, he said that I didn't need to worry too much about it, as so many people are diagnosed with it now that it won't kill me.

I find this hilarious. Does the fact that millions of people may have been diagnosed with heart disease or cancer have any effect on the number of people that these diseases kill? Only if the diagnosis leads to successful treatment...

[tarnalberry]

To be fair, I would probably give similar, albeit caveated, advice. I would probably also tell someone "It's not that serious, as long as you make sure to avoid all gluten." And the idea that you can reintroduce foods you're allergic to up to the point of reaction is *not* new. (Note, this is for regular, non-anaphylactic, allergies.) There's a theory that there is a threshold level of tolerance, and that, above that level, your body produces an allergic reaction to it. I do think your doctor didn't give you much to work with, but I also don't think that what he said actually contradicts current theory (assuming he didn't also say to reintroduce gluten).

That said, he didn't really give you enough to work with, did he? He didn't answer your questions, or give you enough information to follow his directions safely. Given that, I'd stick with the other's advice about finding a new doctor.

[annacsmom]

My seasonal allergies disappeared completely going gluten-free. My 18 year old daughter's only real symptom was seasonal allergies. You may see them clear up without meds. Lots of water helps allergies, too.

CarlaB

Does your daughter have celiac also?? I'm suspicious that my 13 yr. old son may have it -- he is always congested and intermittently has had migraines and stomachaches. My 18 yr.old daughter was just diagnosed two months ago. I'm not sure how to approach getting him tested. Do I do bloodwork from our MD, enterolab, or just try the diet???

[arc]

My seasonal allergies disappeared completely going gluten-free. My 18 year old daughter's only real symptom was seasonal allergies. You may see them clear up without meds. Lots of water helps allergies, too.

So did mine, though, by that time, they weren't just seasonal anymore. I seemed to be allergic to everything and constantly sneezed and had a runny nose, despite the allergy drugs.

After a couple weeks of gluten free, they were pretty much gone. I will occasionally get a sneezy day, which may be "real" allergies or accidental glutening. I'm not sure.

[jerseyangel]

My allergies really went to an all time high in the 2 years before I was diagnosed. I had always had spring pollen allergies, and a cat allergy but everything became very severe. I also developed eczema and intense itching where there was no rash or anything.

Now, 16 months post dx, the eczema is gone as is the itchiness. I had skin scratch tests a few months ago that revealed that my cat allergy was slight (the last time I was skin tested, years ago, it was very high).

I don't use anything for allergies anymore.

[Jestgar]

My allergies really went to an all time high in the 2 years before I was diagnosed. I had always had spring pollen allergies, and a cat allergy but everything became very severe. I also developed eczema and intense itching where there was no rash or anything.

Now, 16 months post dx, the eczema is gone as is the itchiness. I had skin scratch tests a few months ago that revealed that my cat allergy was slight (the last time I was skin tested, years ago, it was very high).

I don't use anything for allergies anymore.

ditto

except only 5 mo gluten-free

[wonkabar]

I just got back from my doctor's appointment and he let me know that the blood tests were positive for celiac. However, he said that I didn't need to worry too much about it, as so many people are diagnosed with it now that it won't kill me.

It takes a lot to bring me to a loss of words, but I am. Well, okay, maybe not...

Is he for real??!! Is this guy really a GI doctor?? "so many people are Dx" and "it won't kill you"? UNBELIEVABLE!! Good Lord, is he talking about the common cold or Celiac Disease??!!

I agree with all of the previous posters...immediately eliminate gluten from everything forever and ever AND find a new doctor. Actually, you really don't even need a new doctor as you aleady have a positive Dx and following a gluten-free diet is not as terrible as it sounds. It's an extremely healthy diet for anyone to follow.

This forum has been a tremendous resource for me in helping my 3 y/o son. Everyone here is really friendly and helpful; I think you'll like it here!

**PS-My initial consultation was free as opposed to Vinent's $50!!

[happygirl]

Wow. I'm sorry you were given such medically incorrect advice. Celiac is Celiac---you don't outgrow it, nor can you re-introduce gluten.

I highly recommend reading Dr. Peter Green (From Columbia University, and a leading Celiac physician and reserach) new book, Celiac Disease: A hidden epidemic. It is a fabulous book that really explains Celiac Disease. It will help you a lot-I wish it was out when I was first diagnosed.

Also, please go to the parent site of this forum, celiac.com. There is a TON of valuable information, including lists, information about research, symptoms, related disorders, etc.

Please feel free to ask any and all questions. Lots of us have Celiac and then numerous other food intolerances and/or allergies. We are here to help! Welcome to the board.

Laura

[Ophelia42]

To be fair, I would probably give similar, albeit caveated, advice. I would probably also tell someone "It's not that serious, as long as you make sure to avoid all gluten." And the idea that you can reintroduce foods you're allergic to up to the point of reaction is *not* new. (Note, this is for regular, non-anaphylactic, allergies.) There's a theory that there is a threshold level of tolerance, and that, above that level, your body produces an allergic reaction to it. I do think your doctor didn't give you much to work with, but I also don't think that what he said actually contradicts current theory (assuming he didn't also say to reintroduce gluten).

I'm actually very sure he was talking about a threshold level for the foods that I tested positive to on a scratch test. Most of them, I have never had a reaction to (now things like cantaloupe & carrots, which I also tested positive for, I have).

I'm actually having somtehing very similar to what a few people have described about my allergies just getting incredibly severe the last few months. I'm really hoping that following a gluten-free diet will help with them.

Thanks, everyone, for your advice & stories!