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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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designerstubble

My First Dietician Appointment...

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Thought you might like a laugh.

4 months on and I have attended my first dietitians appointment. I have been told the following:

Eat cheese and dairy ( she didn't understand why I had cut them out, insisted I put them back in)

Tried to show her my food diary (I was hoping for some help with the allergies I have been experiencing recently)... I was told NOT to keep a food diary "as there's really no point at this stage"... "Don't waste your time, your problems are more than likely environmental, people like to blame all their problems on food" "just relax and see how it goes"

I asked about eating eggs as I come out in hives on my wrist and my eyelid swells slightly. Apparently I should continue to eat them.

"Allergies happen immediately, not an hour later"

"And allergies and celiac are not related, celiac is auto immune disease, allergies are not auto immune related"

My intolerance to corn is unusual for celiac apparently, she'd never encountered it. And that I should try to keep it in as much as possible unless it really bothered me.

I should try to include more gluten free products to slow down transit in my gut (I asked about my loose bowels), and also that I should not have pumpkin seeds in my breakfast.

Luckily since taking iron my depression has lifted otherwise I might have clobbered her one!! ;)

Is it me? How do these people qualify?! AND she was 'chief dietician'... Ha haaa!

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Actually, hon IMHO, your dietician makes some sense. It is okay to add dairy back in if you want. Some celiacs can tolerate diary right away.

Used to be, docs suggested 3-6 months. Now, it's "whenever you want to try it."

The vast majority of celiacs do not have trouble with corn or other grains ( if you do, yes, keep it out!!!)..

And she's right about the difference between allergies and AI diseases. Allergic reactions do happen rapidly.

In patients with an autoimmune disorder, the immune system can't tell the difference between healthy body tissue and antigens. The result is an immune response that destroys normal body tissues.

In allergies, the immune system reacts to an outside substance that it normally would ignore. With autoimmune disorders, the immune system reacts to normal body tissues that it would normally ignore.

Celiac is not related to allergies and many celiacs do not develop allergies or additional food intolerances, so, her assessment of that was also correct.

And pumpkin seeds are full of fiber and do promote more bowel movements, so if you have loose and frequent movements, she got that right too.

Food diaries are usually for people who have lingering problems after many months or years on the diet. You're only 4 months in and could just still be healing and not really have other intolerances at all. She has a good point about relaxing and seeing how it goes.

I think you may be judging her a bit harshly. :)She was more knowledgeable than most of the ones we hear about. Some tell us horror stories.

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Ooo! Well... That's put me in my place. :) Must admit though Irish heart, adding the dairy in scares me! And so does seeing how it goes with food allergies like egg and some of the others that make my throat funny (as I explained to her I come from a family and history of anaphylaxis). I thought I was being sensible with a food diary trying eliminate those things giving me problems. I knew about the pumpkin seeds, which was fair enough, it was more to do with adding commercial supermarket gluten free food! She said it was unlikely to irritate me (I'm sure it does?)... That it must be something else.

Maybe I will do what she says then, you guys have more experience than me... Dreading the dairy pains though :( not to mention the anxiety of eating the eggs. I'll have my sons epipen on hand I guess?

Thanks for your help

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She may be a dietitian but you may not be a 'text book subject' everyone is an individual. I would err on the side of caution with the dairy products too! I have been gluten free for 14 months. When I saw my dietitian at 9 months, she told me to try a little yogurt or cheese (as I became dairy intolerant before I was diagnosed coeliac. I did as she suggested and I still had a bad reaction and have not dared to try any since. Also you do not know how long you have had coeliac disease before you were diagnosed and if you have had it a long time before you were diagnosed, it could take a long time for your gut to heal, so you need to take that into consideration of how your body is reacting. Personally, I feel my gut is only just starting to heal after 14 months and I will not try dairy again until I feel ready.

Your dietitian is right about the auto immune being different from allergies but she should be treating you as whole person, not someone with coeliac disease and if you are allergic to other food stuff as well as having an auto immune disease, you are right in wanting to avoid eating those foods as well. Remember, it is your body, and you are the one suffering if you eat something she told you to eat, regardless of your food intolerances/allergies not her!

Ooo! Well... That's put me in my place. :) Must admit though Irish heart, adding the dairy in scares me! And so does seeing how it goes with food allergies like egg and some of the others that make my throat funny (as I explained to her I come from a family and history of anaphylaxis). I thought I was being sensible with a food diary trying eliminate those things giving me problems. I knew about the pumpkin seeds, which was fair enough, it was more to do with adding commercial supermarket gluten free food! She said it was unlikely to irritate me (I'm sure it does?)... That it must be something else.

Maybe I will do what she says then, you guys have more experience than me... Dreading the dairy pains though :( not to mention the anxiety of eating the eggs. I'll have my sons epipen on hand I guess?

Thanks for your help

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I had to ditch most of the processed gluten-free food within 6 weeks. I don't know which ingredients upset me, but I have given it up mostly now. I think corn/maize.were maybe a problem, plus all the extra sugar. I have read here about lots of people who struggle with them.

I am not sure about the allergy side of things. I think I would at least want epipens to hand if I thought there was a risk. Make sure your sons one is the right strength, usually junior for under 30 kg, adult for ovr 30kg.

Maybe you could see if your hospital has an allergy specialist. I found the service better for my son than me, but maybe there might be someone good where you are.

I have been gluten-free 5 months, and dairy free a month - I am trying cheese on Friday....

I am thinking of it all as pieces of the puzzle.

Good luck

Mw

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Ooo! Well... That's put me in my place. :) Must admit though Irish heart, adding the dairy in scares me! And so does seeing how it goes with food allergies like egg and some of the others that make my throat funny (as I explained to her I come from a family and history of anaphylaxis). I thought I was being sensible with a food diary trying eliminate those things giving me problems. I knew about the pumpkin seeds, which was fair enough, it was more to do with adding commercial supermarket gluten free food! She said it was unlikely to irritate me (I'm sure it does?)... That it must be something else.

Maybe I will do what she says then, you guys have more experience than me... Dreading the dairy pains though :( not to mention the anxiety of eating the eggs. I'll have my sons epipen on hand I guess?

Thanks for your help

Hon, I think maybe you misunderstood what I meant.

I am not saying you should eat things that make you sick! NO way!! :)

I am saying that what she said was not "wrong" about some things. That's all.

NO ONE should eat things that give them anaphylaxis!!

I had terrible throat closing, choking, trouble swallowing and swelling in my face before and after my DX and allergy tests revealed .........nothing. Sometimes, it is just inflammation in the GI tract.

See an ALLERGIST if you think the eggs are giving you a problem. Of course, introduce dairy-- and any other foods ---only when you are ready. But do not be anxious about foods--it serves no purpose and only gives us wrinkles (who needs those, right?) :D

All I am trying to get you to see is this: sometimes we can have what appears to be allergic reactions to foods when it is possibly coming from inflammation from celiac. (I still have inflammation in my body 2 years later and when it stops is anyone's guess.)

Just take her advice for what it is--based on her knowledge and experience. None of us on here have all the answers. We just offer opinions based on our knowledge and experience, too.

Best wishes and ..... Go slowly with food reintroduction.

Edited by IrishHeart

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Yes, I should have said more clearly, ignore the dietician if you want to. As I always like to say, go with your gut :).

I think nhs dieticians are trained to persuade people not to cut out major food groups. I may not have been entirely accurate in my description of what I was planning to eat after my elimination diet :) :)

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Speechless. :o:ph34r:

Please do not eat anything that causes you to break out in hives or causes facial swelling. Please continue to keep a food diary, unless you have a death wish. Please check this dietician's professional credentials via whatever the rules are where you located, and consider filing a complaint. Please work with a professional medically accredited physician on your allergy problems for advice on whether or not at some point in the future, you should try to re- introduce foods which cause this reaction. Please consider keeping emergency antihistamines with you at all times when you go out. Assuming, since your sig line says asthma, you are keeping the rescue inhaler with you when you eat food you did not prepare yourself.

I have relatives with severe food allergies. This latest "advice" could easily kill a person. :angry:

The longer you are off of gluten, the more time you give your body to stop over reacting to every thing, the more likely you may be able to transition from a simple diet to one that is more complex. However, you will need to avoid the gluten religiously, and you also, obviously, need to avoid the allergens, whatever they are and whether or not you've figured them out yet, and then re introduce the "iffy" foods one at a time, so you can track reactions. Most people can't really remember what they did in detail 24 hours after an event, let alone every ingredient in a day's worth of meals, so food diaries, unless you have a gifted memory, are not a waste of time.

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Thanks guys, i really appreciate all your help. Sorry for the late response, I have been in a bit of a black hole these last 2 days with it all... (PMT doesn't help!).

Takala, I have only just seen your post, as I havent logged in for a couple of days, couldn't even bear the forum! Anyway, thanks for all your help, I have changed doctors (as I have recently moved) and I went to see him yesterday. He is going to sent me to a new GI Consultant who will hopefully refer me for the allergies. Fingers crossed, and if it doesnt work this time then I guess I'll have to try and go private (I wish I had more faith in the NHS here in the UK, but like anyway in the world, it's all about the money). I come from a family of terrible allergies too, so have first hand experience. And my son carries an Epi Pen and has multiple allergies.

I have decided to take a little bit of advice from everyone on here. I will start my diary up again from tomorrow. I will also try and relax around food! I tried some cheese today, I am about to start a new thread'topic on it... See what anyone thinks, as I am not sure whether I should eat it or not?

Thank you everyone :)

Again

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Hi Everyone,

I am new to this forum and have been recently diagnosed with celiac. I have not used a dietician before and unsure if I should consult one. Would you recommend working with a dietician based on your experience?

Thanks!

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11 hours ago, Sarah_2017 said:

Hi Everyone,

I am new to this forum and have been recently diagnosed with celiac. I have not used a dietician before and unsure if I should consult one. Would you recommend working with a dietician based on your experience?

Thanks!

Start a new topic/thread, you just opened up a thread that has been dead since 2013.

On this a personal opinion would be yes, hunt around for a celiac savvy one. You will most likely have some other food/intolerance issues. You will need to have you blood checked and supplement in some things starting off. THIS is normal til your gut heals and you can get more of your nutrients from your food you consume. As everyone is different with their microbiome, metabolism, and the way their body is geared. A one kind fits all diet does not really exist, you have to pretty much custom tailor it and find the foods and diet that your body supports, and needs the most. Took me years to find my perfect diet......but mine is no/low carb, keto without much meat and mostly nuts, seeds, eggs, and veggie. A oddy but ended up being what I needed, for now anyway.

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Welcome Sarah, 

Ennis is right, if you can find a celiac-savvy dietitian, you might find the extra support helpful, but you can do it in your own.  Research, and if in doubt, head back here with questions.  We are happy to help.  Easiest to stick to non-processed foods in the beginning.  It may help you heal faster (less mistakes) and you will not have to read so many labels.  

This booklet issued by Harvard University is a good start:

http://www.bidmc.org/~/media/Files/Centers and Departments/DigestiveDiseaseCenter/celiacCenter/Celiac Packet Complete July 2016.pdf

 

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