Worried Mom having an emotional night

[psawyer 697]

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.

[ibis 1]

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.

[mushroom 1,209]

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

[Lisaann1 0]

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.

[pricklypear1971 355]

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.

[squirmingitch 629]

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!

[psawyer 697]

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.

[basilicious 1]

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.

[beachbirdie 43]

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!

[kareng 2,144]

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.

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

[Skittles 3]

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!

[GFinDC 693]

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

[mushroom 1,209]

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.

[IrishHeart 1,640]

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.

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.

[Gemme 2]

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

[GFinDC 693]

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.

[IrishHeart 1,640]

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

[bartfull 569]

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.

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...

[IrishHeart 1,640]

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!

[psawyer 697]

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

[teenceliacCO 0]

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.

[cyclinglady 1,126]

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!

[FruitEnthusiast 29]

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.

[ch88 10]

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. 

 

[Sara789 14]

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/.