Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Just Diagnosed, Questions Inside Post
0

15 posts in this topic

Hello....

My name is Lindsay, I am 30 years old. I am newly married ( 3 weeks ago). I live with my husband, Bill and our 2 dogs in Tucson AZ. I am starting law school this coming week. I was diagnosed with Celiac's this morning after finally having enough of the pain and allergic reactions, that I have suffered with my whole life. I cannot remember a time in my life that my stomach has not caused me problems. I am relieved to finally have a reason for all my problems, but scared to face the reality of this diagnosis.

In response to the diagnosis, I have several questions, any answers and suggestions would be appreciated...

Is it really necessary to get new pots and pans and plates and silverware?

What if any books have been lifesavers while dealing with this disease?

How long were you gluten free before feeling relief?

If you have children, did you have trouble conceiving?

Do any of your family members also suffer from Celiac's?

That's all for now.... Thanks in advance for your help. I look forward to forming relationships with all of you.

Lindsay

2

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome to the best club you never wanted to join! :lol:

The pots and pans thing- I did get new ones but that was because i read that the nonstick coating is very dangerous and stays in the blood stream so I went with all stainless. I think the main thing is plastics and wooden spoons. I just washed the heck out of mine and it was fine.

I was extremely ill at diagnosis last January. It took me 6 months to feel really good but I got relief in increments getting better over time.

We are pretty sure our son has it but he tested negative. Kids are tough to diagnose.

I don't like ANY books I read. The BEST info is right here on these forums. Read old threads on here. Use the search function and look for "withdrawals." Those threads have tons of info on what to expect as a newbie.

Most of us have other intolerances but many will clear up as you heal.

Eat clean healthy foods to promote healing. Fruits, meats, eggs, veggies, fruits, lots of water. Do not go crazy eating gluten free substitutes right away. It is all too complicated for your damaged gut. You most likely will have trouble digesting it. I did have rice pasta in the beginning because it's simple.

Gluten Free Pantry White bread mix is the best bread I've tried and has the simplest ingredients of any gluten free bread I've seen. You may be able to handle that. I could pretty early on.

Get shampoo, conditioner, soap and lotion that does not contain gluten. Don't look for gluten free on the label. Most of them are afraid of jerks who will sue them and won't label it. But wheat is the big culprit and it's clearly labeled. Search old threads on this issue too. The stuff runs down your face in the shower and gets onto your food from your hands. I fought this but I made a huge improvement when I finally accepted this fact.

Honor your grieving process. It's okay to cry over your favorite mac and cheese and go through anger and why me stages. We all did. We all had a panic attack and ran from teh grocery store the first time. Well I did. LOL

Hang in there. I feel amazing now at 8 months gluten free. I'm 40 and feel better than I did when I was 20. My skin has changed so much. I need to get a new profile pic to show the changes. People have commented so much on the changes in me. It has changed my life and I am literally a different person.

1

Share this post


Link to post
Share on other sites

Get a separate toaster for sure and do not share a collander if he is cooking gluten pasta. Its' way hard to get pasta gluten out.

Also be careful of contaminating condiments. We had to all go gluten free at home because we have small kids who kept glutening me. Crumbs get everywhere. If he will still eat gluten bread he needs a dedicated space to work with it and give you a clean safe spot to cook and prep food without worry.

1

Share this post


Link to post
Share on other sites

gluten-free with a whole foods diet is actually a very healthy diet for anyone to follow. Avoid all the gluten-free products and stick with whole foods and cook them yourself at home. You will learn what works for your body faster that way since you will know everything that you have put in your food.

There are some things that you will probably be ok with,like Mission corn tortillas, or enjoy Life brown rice wraps. And Redbridge gluten-free beer if you don't overdo it anyway.

Keep your diet simple at first, and jot down everything you eat every day and the symptoms you have. It is not unusual for us to have additional food intolerances beyond gluten. Some of the common things that bother us are dairy, soy and nightshades (potato, tomatoes, peppers), in addition to gluten (wheat, rye, barley, and oats).

My brother was celiac and also had Crohns. Family members of celiacs have a higher than usual chance of getting celiac.

It might be easier for you if your hubby goes gluten-free at home also. That wold also be cheaper since you won't have to buy 2 of everything. Shared condiments are a no-no for instance, so you would need your own peanut butter and he would have to have his own separate peanut butter, mayo etc..

1

Share this post


Link to post
Share on other sites

Just to answer one question, those with undiagnosed celiac disease often have difficulty conceiving or carrying a child, but once you get the gluten out you should be fine. :)

1

Share this post


Link to post
Share on other sites




I sent you an email - I'm in your neck of the woods! You can totally do this. We've got a good celiac community here, if you haven't checked it out yet. I've gotten some great information from our local group. It's a bit crazy at first, going gluten free and keeping an eye out for contamination and such, but it gets easier. Still a little crazy, but easier.

1. Is it really necessary to get new pots and pans and plates and silverware?

Silverware should be okay, glassware should be okay, stainless steel should be okay unless it has tons of crevices that are impossible to clean. Sometimes that can still be okay. The ones that can be a problem are teflon if it has scratches, wood and bamboo, and plastics. These are porous to gluten and can release it back into the food. However, I know some people have an issue with this, and some don't, so you might want to see how you do at first, or use only stainless steel and glass and try the teflon stuff later to see if it affects you.

2. What if any books have been lifesavers while dealing with this disease?

I'm right there were Sandsurfgirl. The web has been the most useful for me. I got a few books/cookbooks, and I pretty much never use them. Information on Celiac Disease is changing constantly - lots of new research, which is good for us, yeah? But the books just can't always keep up with the new info. The gluten free blogging community has some awesome recipes that have been easier to search through than in cookbooks, so I've ended up using their recipes much more than the books'. One book I've heard others recommend, though, is Celiac Disease for Dummies. I never read that one, but I've heard people who thought it was very informative and useful for them.

3. How long were you gluten free before feeling relief?

I had a physical change within days. I know some people who took weeks or even months to notice a change, for better or worse, so it's very individual. For myself, I turned out to be allergic to a couple of the things that are more prevalent in Gluten Free foods, so it was making me sicker until we figured things out a little better. I hit the dairy and the soy problems, like was mentioned above.

4. If you have children, did you have trouble conceiving?

I didn't have trouble conceiving, but I was undiagnosed at the time, and possibly not even triggered. I was very sick during both pregnancies, though. What I have heard, however, is that if you are on the diet and being very strict about it, there shouldn't be any conception issues. I've also read that during a pregnancy was the time to be very, very strict about the diet, as the nutrient intake would affect both you and the baby, so keeping the villi healthy would be a big priority.

5.Do any of your family members also suffer from Celiac's?

Oh heck yeah. My father was diagnosed about 8 years ago, and he told me it was 'like an allergy,' so I never looked into it. When I got diagnosed, I pestered everyone to get tested. My brother and my daughter came back positive (no symptoms for daughter at all). My son had many of the symptoms, so even though he came back negative, I took him off gluten, and he has done much better on the diet. I've now contacted cousins and Aunts and Uncles and found out many of them have been having physical trouble or gut issues that no doctor has figured out yet, so many of them are getting tested now, too. Based on my family's experience, I'd very much recommend seeing if your parents, siblings, and any children can get tested. That population (having a celiac positive relative 1 degree removed) has 1 in 22 people test positive as well.

It's a weird thing. Myself and my daughter never had what I would have considered to be Celiac symptoms. No gut issues whatsoever, we were both a little overweight. So I'm glad I tested her 'just because,' as I never would have suspected she had it, just going by symptoms, you know?

Wishing you good luck, and, well, there's more in the email! :-)

1

Share this post


Link to post
Share on other sites

Is it really necessary to get new pots and pans and plates and silverware?

Stainless steel can be washed well and you are fine. Glazed ceramic/porcelin/glass can also be washed well and you are fine. Textured items like plastics, wood, colanders, etc need to be replaced.

What if any books have been lifesavers while dealing with this disease?

I read Dr. Green's recent book (published in 2010). Lifesaver, no, but very good in general understanding.

How long were you gluten free before feeling relief?

10 days was when GI symptoms started to resolve. Returning to overall good health has been a longer process-- really, about 10 weeks or so and I'm still not as strong as I was.

If you have children, did you have trouble conceiving?

N/A (but... cycle "regularity" might be improving. ask me in 6 months.)

Do any of your family members also suffer from Celiac's?

Currently, testing is underway. One uncle has serious GI issues, Dad and Grandma have minor issues.

1

Share this post


Link to post
Share on other sites

This is the best auto immune disease to have, if you have to have one, because all you have to do is stop eating gluten, and it relieves the symptoms. Very easy compared to the alternatives !

Get a new toaster, colander, and cutting board for yourself, minimum, if your family does not go gluten free. If you're baking gluten free breads, get a new bread pan(s). My husband, to my surprise, decided on his own to go gluten free in the house with me, after watching some of my reactions, it's actually much easier for us this way. He says he gets enough of the "other" stuff when he eats lunches or business meals out.

Your old plates and silver ware and probably your other glass ceramic cookware is fine, as are any stainless steel you can scrub out. If you use cast iron, dedicate it to gluten free, or bake it in the oven on the cleaning cycle, clean it, and re season it. Throw out the old rubber spatulas, plastics used to store glutens with sauces, like used tupperware, and wooden spoons or give them and the other used stuff to Goodwill.

Change your lipstick or lip gloss to gluten free.

If you have indoor pets that lick or drool on you, you will want to change your pet food to gluten free. This was a no brainer as we have 2 part bred dogs of the same breed that are both sensitive to wheat, also. If you think YOUR reactions are bad, you should see theirs. :blink: I ought to write a story called "This is Your Half Border Collie On Gluten. He's Not Insane, It Just Looks That Way. " I had to change the cat's food to protect them, because I couldn't guarantee they'd not get into the cat food all the time, and the cat licks me.

Best book I've read is one of the Bette Hagman cookbooks.

Also, wikipedia and their online links to Celiac, gluten intolerance, and the HLA DQ genes helps.

But you pick up most good information off the web. Anytime you need the status of a item, you can google

gluten free name of food

and it should pull up a link somewhere with a discussion. Ditto, you can do this for cities, towns, restaurants, to find places to shop.

1

Share this post


Link to post
Share on other sites

Hi all,

I'm new to this, too. Just diagnosed a week ago, blood test and intestinal biopsy positive for Celiac. I immediately went gluten free (the description and photo of my poor, ravaged intestine were VERY effective), and I already feel much better. Thought I was getting a handle on how to deal with the day-to-day things, but then I read about gluten-free dog food, shampoo/lotions, getting new wood/plastic cookware, and I pretty much just lost it while typing this!

:(

Okay, better now.

Speaking of completely overwhelmed, I have a week-long cycling tour coming up in September

1

Share this post


Link to post
Share on other sites

Welcome and don't panic. It's not nearly as hard as you think. You only have to buy the new cookware once, and it's always nice to have a fresh cutting board anyway. You might enjoy having a rice cooker too. I love mine. As far as things like dog food and shampoo it depends on how sensitive you are. I'm a little allergic to wheat as well as intolerant so I do check my cosmetics.

For the cycling tour, may I suggest you start a new thread? It sounds like a great trip. We have some athletes around who can probably help you out. Do you need snack ideas to carry with you, meal ideas, or both? Post a few more details in your thread and I bet you get a ton of ideas. :)

0

Share this post


Link to post
Share on other sites

Welcome and don't panic. It's not nearly as hard as you think. You only have to buy the new cookware once, and it's always nice to have a fresh cutting board anyway. You might enjoy having a rice cooker too. I love mine. As far as things like dog food and shampoo it depends on how sensitive you are. I'm a little allergic to wheat as well as intolerant so I do check my cosmetics.

For the cycling tour, may I suggest you start a new thread? It sounds like a great trip. We have some athletes around who can probably help you out. Do you need snack ideas to carry with you, meal ideas, or both? Post a few more details in your thread and I bet you get a ton of ideas. :)

"DON'T PANIC" in large, friendly letters. :P **Goes to start a new thread about cycling trip...**

0

Share this post


Link to post
Share on other sites

Thanks so much for all your help!

Tonight Bill and I made a trip to buy new stuff.... new strainer, rice cooker, cutting board, pot, plates and serving utensils... Good thing Ross and Target have deals...... Then we went to the store where I bought lots of fresh veggies..... Had a delicious dinner of veggies and rice. Made me feel a lot better about things. Thanks again for all the suggestions! look forward to getting to know all of you.

Lindsay

0

Share this post


Link to post
Share on other sites

Hi, and welcome!

I just wanted to suggest you read "Dangerous Grains." I just re-read it last weekend and all the information is current. It's a very good book with a lot of helpful information.

0

Share this post


Link to post
Share on other sites

Is it really necessary to get new pots and pans and plates and silverware?

What if any books have been lifesavers while dealing with this disease?

How long were you gluten free before feeling relief?

If you have children, did you have trouble conceiving?

Do any of your family members also suffer from Celiac's?

Lindsay

Welcome to your new and improved life Lindsay! Here is my best shot at answering questions:

1. I didn't get new pots/pans/silverware. I have a dishwasher, which I put to the highest temp setting and cleaned everything. As far as my baking stuff is concerned, I scrubbed them with something called "bar keeper's friend." It's less abrasive than comet. We have been fine (my son is also newly diagnosed at age 11.) I am a single parent, and totally starting over was not an option. I have also heard that you can put baking stuff in the oven at some crazy high temp for like a half hour... that ought to kill it! I had to throw out a few of my favorite lip glosses... gluten. Ugh! I also check my shampoo/conditioner to make sure anything I buy is gluten-free. I too got a new toaster. $7 at Target. Cheap, right?!

2. I have yet to buy a book. I find everything I need right here on my trusty computer!

3. I was only gluten-free for about 3 days when I noticed major changes! I kept accidentally glutening myself because of "newbie" moves! One I stopped being a ..... u-huhm... jackass... I am all good! I also had to cut out dairy, and now use soy or almond milk, and other soy alternatives. (Soy yogurt, sour cream "product" made my tofutti...I think, etc.)

4. I am not trying to conceive, so I can't tell you. I do not that my sister is wanting a kid, but her GI doc is advising against it. I don't think we are "that bad" and we can still make babies! I have my tubes tied, so if my bf and I choose to have kids in a few years we will need IVF. That costs money, so it has to wait. But when I do try to get pregos, I know I will get the support I need right here, on this board. You might want to check out the section on this forum specifically about pregnancy. That would be a good starting point, in case someone missed this question because they only look at the one board.

5. My Dad started this. I tease him often for the "great genes Dad!" Kidding of course. Actually it's been kind of nice. I have been having him over for dinner more often because we are all "in the same boat!" (And he's going through a divorce, so he kind of "needs me" right now!) My youngest son (11) saw how well Mom was doing on the diet, and decided to try it as well. Sure enough, no more tummy aches, backaches, unexplained vomiting, and he's even growing! I never had him formally diagnosed... he just tried it and feels great! Whatever works! My sister has another auto-immune disease called Chrone's. My maternal Grandfather has had severe ulcerative colitis since he was 40 (he's 80 now.) It's in the genes... for sure, in my opinion!

Ask away on here about any questions you might have. Chances are good that someone here has been there, done that!

Good luck and welcome to the boards!

1

Share this post


Link to post
Share on other sites

"DON'T PANIC" in large, friendly letters. :P **Goes to start a new thread about cycling trip...**

OMG another Douglas Adams fan!!! You made me laugh out loud.

1

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
0

  • Forum Statistics

    • Total Topics
      104,641
    • Total Posts
      921,558
  • Topics

  • Posts

    • They are big on selling books -. They try to spam a lot forums and FB groups. why can't you eat nuts, nut flours, quinoa, hummus and beans? I think I missed that. Those are a good source of protein.  If you can't digest lactose look for a lactose free cheese - like one made from yogurt. at first,I thought life was over.  But with a few years of experience, I have found it isn't that big of a deal. It helps to have an attitude of "I am not here for the food.  I am here for the wine ( or the company . ). Also helps to not care what people think - "I don't care if you think it's odd that I brought my own lunch to the funeral luncheon. "( And it helps that my lunch looks better than theirs lol.)
    • Gracey, It am a mother and I am going to give you some  valuable advice.  You need to keep and document everything related to your health.  Every lab test result, notes from your doctor's visits, etc.  Why?  Because only you are your best health advocate (except for your mom).  Doctors come and go, but it is up to you to manage your health.   When I changed insurance and doctors, I had copies of all my medical records in hand.  My new PCP was impressed.  There was no doubt that I had celiac disease, fractures, Hashimoto's and diabetes, anemia, etc.  I had physical proof.  As an result, she was quick to refer me to a new GI  and order tests to measure my progress  (e.g bone scans).  My family health history chart helped not just me, but other family members.   So, find out if biopsies were taken during your endoscopy.  Get the pathologist's report.  See if your doctor checked for other issues besides celiac disease.   Hugs!  
    • I don't do grieving, bad enough for something that's been taken away in the past but to know my future is pretty much gone now just feels too much. The only time I've forgot about the unfolding nightmare was during my hour or so of sport so need to cling onto that at the moment or I fear going to a very dark place indeed. Yup that SCD site is terrifying, still can't make up my mind if they're giving out useful information to genuinely help people or using scare tactics to sell their books etc. 
    • I agree with all the advice you have been given.  It is excellent!   I just want to add that things will get better.  There is a huge grieving process to go through.  Do not fight it.  You have a right to grieve as your health and lifestyle will change, but you will adapt!  Exercise gently until you feel a bit better.  There is plenty of time to exercise hard later.  Taken this advice from a gal who just rode 40 miles (no biggie you say) this morning  on her bike through the Santa Ana winds (better known as the Devil's winds!).  But I am three years into my recovery.  I took it easy the first six months because I was anemic.  I teach few exercise classes, bike, swim and run and I am in my 50's.   The SCD website?  It can scare the (bleep) out of you.  There was one point that I took from the site and that was to stick to whole nourishing foods.  No rocket science -- just common sense.    
    • Thanks for the replies so far everyone, much appreciated Great, another doctor gets it wrong, how many more times can they make a mess of this diagnosis process?! Bloating had gone down a bit in these first few days of cutting the gluten so I guess expect that to come back. It's one way to have a farewell tour of the gluten foods I guess - if a little or a lot makes no difference may as well go all-in... The doctors didn't diagnose this at all, Google did. If I trusted in the health professionals I'd be blaming the symptoms all on stress and having counselling for it whilst the fire raged on inside me due to a clinical condition they'd missed. Just glad one of doctors agreed to run the test on second time of asking to keep me quiet as much as anything. Believe me I've read that newbie thread multiple times, as well as numerous others around the web. Been doing nothing but since Tuesday when the blood test results came back and each time I go into the comments sections a little bit more of me gives up inside. Seems so many don't ever heal and so many associated complications too. The reality looks bleak apart from a lucky few it seems. In the nicest possible way the vegetarian choice is non-negotiable, it's a core part of what I believe and the thought of eating any form of animal \ fish flesh would make me physically sick (sorry meat eaters) so will have to find some way around it, how I don't know yet. Perhaps lots of this... http://www.pulsin.co.uk/pea-protein-isolate.html The cooking bit is a concern as it's something none of us do well at home, adds to the feeling of being completely lost right now. I kick myself for the decision that lead to the stress as I could've avoided all this. The only thing I can cling onto there is that I was having some pains in the side before that time which I blamed on a muscle strain... maybe that was the early stages, in which case I could feel a bit better knowing it had just come on gradually. With the biopsy and gluten from what I read the villi take a long time to heal up so they'd still see that. With the blood test result as definitive as it was surely the disease is pretty much confirmed? How can it heal enough for non eating gluten to throw a biopsy result yet on the flip side take over a year to heal (that sounds like the best case scenario time-wise from what I've read). Not suggesting anyone is wrong for one second but need to understand how that works with what's going on inside to make any sense of this situation.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,644
    • Most Online
      3,093

    Newest Member
    Jross69
    Joined