• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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 FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Discussing The Newbie 101 Topic
1 1

26 posts in this topic

You have been diagnosed and you do not know what to do next.

First, do not panic! and Welcome to the Forum!

Best wishes!

IH

Comments about the Newbie topic are welcome here.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Hi from Down Under,

I came upon your site from Google with a question regarding difference between Tapioca Flour and Tapioca Starch. Found an answer right away and read the newbie post by Irish Heart. Just newly diagnosed four weeks ago and was feeling overwhelmed, however find your posts encouraging so pressing on with this new phase of life. It's nice to know there are so many people willing to share their experiences to lighten the load.

Bye for now.

1

Share this post


Link to post
Share on other sites

Welcome Ibis from Down Under. We will gladly help share your burden if it will ease it in any way. :) Just let us know.

1

Share this post


Link to post
Share on other sites

Ok so this is all new to me. I had the offical diagnosis last Friday but been trying the gluten-free for almost a week. Its hard for me but I am glad I finally have the answer. I have not been feeling well still but I also seem to have times when I feel worse. Most of the time its on the days when I think I did manage to not have Gluten. My question is related to what do most gluten-free do besides not gluten. As do they really all avoid the milk and corn and soy and beans ext. I do not want to be doing this for a month and then add another ext and it be 6 months down the line before I finlay reach oh I wish i had just avoided it 6 months ago. I am also 3 months preggy and have 4 little ones at home and so I just want to know what to do. If its normal to avoid those food then add back in then thats what i will do I just need to start keeping food down as well as sleep and not have the migraines.

0

Share this post


Link to post
Share on other sites

Ok so this is all new to me. I had the offical diagnosis last Friday but been trying the gluten-free for almost a week. Its hard for me but I am glad I finally have the answer. I have not been feeling well still but I also seem to have times when I feel worse. Most of the time its on the days when I think I did manage to not have Gluten. My question is related to what do most gluten-free do besides not gluten. As do they really all avoid the milk and corn and soy and beans ext. I do not want to be doing this for a month and then add another ext and it be 6 months down the line before I finlay reach oh I wish i had just avoided it 6 months ago. I am also 3 months preggy and have 4 little ones at home and so I just want to know what to do. If its normal to avoid those food then add back in then thats what i will do I just need to start keeping food down as well as sleep and not have the migraines.

Oh hon, you are in a tough spot.

It is normal to experience "gluten withdrawal" - and I have no idea how pregnancy influences that.

Most people try a whole food diet, as much as possible: meats, veggies, fruits and attempt to stay away from gluten-free processed foods like cookies, etc., while that is ideal it isn't always reality. The top food intolerance associated with going gluten-free is milk - sometimes its temporary and sometimes permanent. There are a good number of people who have problems with soy and corn or some of the other gluten-free grains or stabilizers - but quite frankly I wouldn't worry about that yet.

The best thing to do is work on gluten-free. Keep a food and symptom diary and if you notice a pattern adjust your diet.

The first 6 months can be confusing and sometimes frustrating. Weird stuff happens. Just get started and see where it takes you.

0

Share this post


Link to post
Share on other sites
Ads by Google:


If I understood Peter's post correctly........

I LOVE the newbie 101 that IH posted. I think it's wonderful & full of information. Information that we keep writing over & over & over again. I was NOT a newbie the first time I read it & it STILL helped me! IMHO the newbie 101 is something that should be pinned to the top of every single forum topic --- that way every newbie sees it & can easily locate it without having to hunt for it. We all know it's scary & overwhelming when we first discover we have to eat a certain way. IH's 101 takes a great deal of the, "OMG! What in the world will I eat? What is safe? What is not? What can I expect?". It takes the panic out of the equation. It's calm, concise, precise & friendly. It doesn't come off dry or as a lecture --- this is what makes it so calming & therefore all the more valuable. People can print out that post & go to the store right away with a much more assured feeling than if they don't have that post in hand. Newbies still have a lot to learn but the newbie 101gets them a good ways down the road. It lets them know this is not nearly as frightening as they thought. It lets them know they CAN get through this; they CAN deal with this.

I can not applaud IH enough!

2

Share this post


Link to post
Share on other sites

The reason we decided to lock the original topic and start an new "discuss" one was to keep the original from being cluttered with a lot of "thank you" replies.

Replies in this discussion topic which add significantly to the content will be merged to the locked, pinned topic.

Thanks for your feedback.

0

Share this post


Link to post
Share on other sites




IrishHeart, thank you so much for your Newbie 101 post!! It really covers so much...and it is so kind of you to share and help lighten the load of the confused and overwhelmed newbies.

Couple that with your generous, knowledgeable replies to my questions, and I have to say, you have truly had such a positive impact these first few months of recovery. Thank you thank you thank you!! :) I am so grateful for you and the other kind souls on this site.

1

Share this post


Link to post
Share on other sites

The reason we decided to lock the original topic and start an new "discuss" one was to keep the original from being cluttered with a lot of "thank you" replies.

Thanks for your feedback.

LOL, great idea. Here is another "thank you" post.

I have met a couple of people recently who just got diagnosed with celiac, I have sent them right to the "newbie 101" topic because it is so wonderful for helping new folks get started on the diet.

A friend of my daughter's mother-in-law just got diagnosed, and told how she walked into the produce department of the market and said to herself (seriously overwhelmed!) "I guess this is all there is left for me to eat..."

Hopefully she'll join in here and feel a lot less alone!

1

Share this post


Link to post
Share on other sites

We need to add the list of companies with a policy of clearly labelling all types of gluten. Kraft, Con-Agra, etc. I always forget one when I try to tell people. :blink:

I have this one:

http://www.glutenfreeindy.com/foodlists/index.htm#donothidegluten

Its not very up-to-date but I know have checked a few of these companies & this is still thier policy

1

Share this post


Link to post
Share on other sites




Thank you so much for your post! I am newly diagnosed and this was very helpful! I have a question though... One of my main symptoms with eating gluten is constipation. I never have diarrhea like a lot do. And I heard that probiodics were good for us and that they help stop diarrhea. Where I have a problem with constipation instead will taking these keep me constipated? because that is the last thing I want!

1

Share this post


Link to post
Share on other sites

It is a good thread for sure. IH did a great job on it too! I point people to it also.

Re: the C issue and probiotics, the answer is probably not, at least usually. The thing is some probiotics have diary in them and if you react to dairy they could cause a problem because of the dairy content. But if you don't have a problem with diary then you shouldn't have a problem with most probiotics. And not all of them have dairy, you have to check the labels.

Thyroid problems can also cause C and that is something to think about having checked. But really until you get all gluten out of your system for a while and give your guts a chance to heal things are kind of unpredictable

1

Share this post


Link to post
Share on other sites

Thank you so much for your post! I am newly diagnosed and this was very helpful! I have a question though... One of my main symptoms with eating gluten is constipation. I never have diarrhea like a lot do. And I heard that probiodics were good for us and that they help stop diarrhea. Where I have a problem with constipation instead will taking these keep me constipated? because that is the last thing I want!

Probiotics are not just a treatment for diarrhea. They help repopulate your gut with the good healthy bacteria which aid in the digestion of food. Overgrowth of unhealthy bacteria can cause both constipation and diarrhea -- probiotics are the good guys with the white hats whichever you have. :)

1

Share this post


Link to post
Share on other sites

I cannot say enough about how much probiotics helped me out!

I take them religiously. I also drink a lot of water every day.

Upon DX, testing revealed negigible levels of "good guys".... that's impossible, I said. :blink:

Well, I WAS a burning mess. My entire GI tract was in flames--and those "good guys" helped straighten me out.

I had "alternating Bowels", AKA "IBS" my entire life...and for the first time, I am right as rain. :lol:

0

Share this post


Link to post
Share on other sites

Comments about the Newbie topic are welcome here.

I am new comer here, Just want to say BIG Thank you to IrishHeart, It was big help.

Thank you

1

Share this post


Link to post
Share on other sites

I am new comer here, Just want to say BIG Thank you to IrishHeart, It was big help.

Thank you

Yep, she did good with that one. It's very helpful for any new person.

2

Share this post


Link to post
Share on other sites

I am new comer here, Just want to say BIG Thank you to IrishHeart, It was big help.

Thank you

I am so glad it helped in some way...welcome to the forum!

IH

0

Share this post


Link to post
Share on other sites

Newbie 101 should be required reading for every new member. Like, maybe before anyone is allowed to register, instead of terms of service they should have to read Newbie 101 and then be given a test to prove they read it. :lol:

I just wish I could get my FRIENDS who deny they have celiac symptoms to read it. Maybe I'll print it out and give it to everyone for Christmas this year, along with a loaf of Udi's and some Blue Bunny All Natural ice cream. If they knew they could still eat delicious food, maybe they wouldn't balk at the idea...

2

Share this post


Link to post
Share on other sites

Maybe I'll print it out and give it to everyone for Christmas this year, along with a loaf of Udi's and some Blue Bunny All Natural ice cream. If they knew they could still eat delicious food, maybe they wouldn't balk at the idea...

hmm.....could be what my relatives are getting this year, too....throw in some Tinkyada pasta & a new colander and wrap it with a bow... Ta da! ;)

1

Share this post


Link to post
Share on other sites

A number of more recent posts here have been moved into a separate topic here.

0

Share this post


Link to post
Share on other sites

Oh hon, you are in a tough spot.

It is normal to experience "gluten withdrawal" - and I have no idea how pregnancy influences that.

Most people try a whole food diet, as much as possible: meats, veggies, fruits and attempt to stay away from gluten-free processed foods like cookies, etc., while that is ideal it isn't always reality. The top food intolerance associated with going gluten-free is milk - sometimes its temporary and sometimes permanent. There are a good number of people who have problems with soy and corn or some of the other gluten-free grains or stabilizers - but quite frankly I wouldn't worry about that yet.

The best thing to do is work on gluten-free. Keep a food and symptom diary and if you notice a pattern adjust your diet.

The first 6 months can be confusing and sometimes frustrating. Weird stuff happens. Just get started and see where it takes you.

Thanks so much for this information. My 14 year old son has just had a preliminary diagnosis of Celiac's and we are just learning the Gluten Free diet to try to get him healthy and get him back in his first year of high school. His diarrhea has stopped for the most part but he is still having gas pains and does not sleep through the night....add puberty, growing pains, etc. and it all sometimes becomes overwhelming for him and us. He has missed several weeks of his first year of high school and we just want to get him back to being successful in school. He is an intelligent kid but feels overwhelmed.

0

Share this post


Link to post
Share on other sites

Thanks so much for this information. My 14 year old son has just had a preliminary diagnosis of Celiac's and we are just learning the Gluten Free diet to try to get him healthy and get him back in his first year of high school. His diarrhea has stopped for the most part but he is still having gas pains and does not sleep through the night....add puberty, growing pains, etc. and it all sometimes becomes overwhelming for him and us. He has missed several weeks of his first year of high school and we just want to get him back to being successful in school. He is an intelligent kid but feels overwhelmed.

Welcome to the forum.  There's a wealth of information here!  Check out the newbie thread.  It contains all kinds of tips and ideas about going gluten free.  Be sure to check all meds and lip balms too for gluten.

 

Is your son finished with all testing?  Will he have a biopsy (endoscopy) or does your doctor think that positive results on a complete celiac blood panel is sufficient?  Will the rest of the family get tested?  

 

I have a thirteen year old gluten eater, but with two non-gluten eating parents, chances are she'll test positive sometime in the future.  If you strictly comply with the gluten-free diet, your son should be feeling better soon.  Everyone's different and everyone has different levels of intestinal damage.  I'm doing well on the diet, but it was an easy transition for me, since my husband's been gluten-free (not officially diagnosed) for 13 years.  I do all the cooking and shopping.  I mostly miss going out for dinner.  It's pretty risky eating out.  I would not advise doing so until your son is feeling better!  

 

I would also advise that your entire house go gluten free.  Gluten eaters can catch some gluten food during school hours or at the office.  It just makes it much easier and safer.  As time goes by, some folks can share a kitchen, but I find that it's easier just to be gluten free.  I do purchase pre-packaged gluten items (e.g. Smucker's PB&J frozen sandwiches, cereal bars, etc.) for my daughter's lunch.  But she happily eats all my gluten free home baked brownies, cupcakes and cookies.  Yum!  She says they are better than gluten versions!  

 

I'm sure your son will catch up at school as soon as he feels better!  

 

Take care!  And remember, put the oxygen mask on yourself first, before assisting others!  That means take care of you, Mom and Dad!

0

Share this post


Link to post
Share on other sites

I just wanted to mention in the list of blood tests to have/vitamin + mineral levels to have checked, I noticed vit D wasn't on the list, and I'm pretty sure that's an important one for all of us to watch.

1

Share this post


Link to post
Share on other sites

The Newbie 101 thread has some very useful information.  Some people have more severe symptoms than other people (including gluten ataxia or mental problems due to gluten), or may want to be more cautious about eating any gluten. The following information might be helpful if added to the thread, to help people who are newly diagnosed with Celiac disease and want to be especially careful. 

  • It is optional whether to add the "may contain traces of wheat" disclaimer after an ingredient list in the USA. If an ingredient wasn't intentionally added it doesn't have to go on the label. 
  • Some foods which are labeled gluten free have later been recalled do to contamination. *cough* Cheerios *cough*
  • Some people are very sensitive to cross contamination while some people aren't as sensitive. 
  • Eating lots of different types of processed foods increases your chances of eating gluten by accident. 

Here is a link to labeling laws in the US.

 http://www.fda.gov/Food/GuidanceRegulation/GuidanceDocumentsRegulatoryInformation/Allergens/ucm362880.htm

Here is an alternative cross contamination elimination diet that some people find effective. 

http://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-13-40

Also I think a similar sticky note on the top of other threads might be helpful. 

 

1

Share this post


Link to post
Share on other sites

Tax Deductions for Celiac Disease

Certain expenses for being on a gluten-free diet can be paid for through a Health Savings Account (HSA) or Flexible Spending Account (FSA), or can be itemized on a Form 1040, Schedule A for your taxes.

Some expenses include the difference between gluten-free foods and the same product that is not labeled as gluten-free (ex: quinoa, oats, nuts, etc), mileage to and from doctor's appointments, and full cost of postage for gluten-free foods.

The Celiac Disease Foundation has some guidelines and a step by step guide: https://celiac.org/celiac-disease/resources/government-benefits/tax-deductions-for-celiac-disease/

2

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
1 1

  • Forum Statistics

    • Total Topics
      107,324
    • Total Posts
      935,500
  • Member Statistics

    • Total Members
      64,985
    • Most Online
      3,093

    Newest Member
    Genevieve.Jones
    Joined
  • Popular Now

  • Topics

  • Posts

    • Well, thank you for replying. Yes, I would also like to know and have a certain "validation" but I will go on to eat gluten free.  Thank you for the idea of keeping a food diary.  I was keeping one for weight loss, but I guess my primary focus will be gluten-free as well.  I'm sorry you had to eat gluten just to find out both tests were negative. That was disappointing, I can only imagine. 
    • Thank you everyone. Jmg & cycling lady sorry for being snippy . I appreciate your help just frustrated. sorry if I am a bit snippy. Not well as you sense. I hate this particular symptom/ reaction. The gluten challenge opened the door to a bunch of  symptoms I buried for 3 1/2 gluten-free years that I had no intention of waking again. I now know it's always been immune and food, but get frustrated over the the amount of time it has not been diagnosed it feels unjust and that most Dr still don't get it 38 years later.  It was reborn after my gluten challenge and I am beyond sad we discovered my DS has this too. As we removed my allergens from the house and my DS was off the foods, if he ate something at school or a friends (because we just removed it for mom) we quickly found and he that he's like mom. He looks like dads mini me but more handsome, but has moms food issues -yikes.  His ped Dr would not test him for celiac or refer him and does not understand food intolerances vs IgE allergies. when we ask for a prescription for allergen free Advil or Tylenol ( I found a compounding  pharamacy willing to work with us) he had ortho work done , she tells us she does not know how to write a prescription for that.   We really don't like reactions and it did say 100 percent juice and quite frankly we believed it.  The histamine  definetly a potential issue as sulphites does not seem consistent food diary wise. I am not sure what is going on. More likely we are celiacs with leaky guts manifesting as food sensitivities trying to heal. I just know I have more intolerances then when I went in. I went into the challenge not being able to eat gluten and came out with all heck breaking lose.  I quit my PT job so I can Prep and cook from scratch entirely growing all my own herbs etc trying to heal. My husband actually enjoys our food even more and tolerates the "woman he married being gone and replaced by this alien" my words not his. He does want me to heal, believes I will, so he can have his wife back. I question if I just have to accept who I am now. I am disheartened that it's slow to heal and despite my years of this undiagnosed garbage I can't get my son the help he needs in 2017! thanks for letting me rant. It was stupid to believe a processed juice maker I'm waiting to activate my water kefir colony so we can add something to our homemade almond milk and water options.   thanks for letting me rant and why do I still have to rant.   maybe the 43 years of frustration and anger of being an undiagnosed celiac.   so sorry y'all. Cranky few days  
    • My daughter did not test positive for celiac (6 week gluten challenge after being gluten free for 2 months).  So she is technically NCGS. One of her worst symptoms is leg pain. It was a chronic problem when she was 7, to the point where she could no longer play soccer. At 8 we went gluten free because of GI issues and the leg pain went away. It came back with the gluten challenge and again went away when we went off gluten for good after testing. If she gets glutened, that is one of the tell-tale symptoms. She has had to use crutches because the pain is so bad.  And when glutened, the pain usually lasts about 3 days. 
    • Thanks raven and awol--I think she will feel much better hearing that these pains could be due to her celiac.  I don't know about the Epsom salts-never asked-so I definitely will.  I think further compounding it right now is that the doctor did not want her to take ibuprofen for 7 days before the procedure and not sure if Tylenol is allowed but she can't take it because it messes with the continuous glucose monitor that she wears.  Only 4 more days.   I will try to see if my primary can or will run a full celiac panel for me.  Left him a message asking why he didn't test my immunoglobulin a and whether we should be running the full panel.  I have encouraged my husband to test as well--he did just have a colonoscopy and endoscopy last fall--looking for other things but would they have been able to see celiac if there?  He has bad acid reflux and they were just doing the colonoscopy since he turned 50.  My other daughter-who has Hashimoto's-was genetically tested for celiac through Prometheus labs about 6 years ago due to our family history of autoimmune and she was having bad stomach issues--that came back negative.  So I think (hope) she's good?  
    • Omg I love quiche.  https://www.bettycrocker.com/recipes/gluten-free-quiche-lorraine/1d20d2e5-e2cd-4b2a-bc83-38bee7736463 i have trail mix for breakfast. Its nutty goodness is high in protein and helps me stay full.  
  • Upcoming Events