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Just Diagnosed, Questions Inside Post
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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

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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.

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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.

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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..

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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. :)

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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! :-)

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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.

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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.

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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

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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. :)

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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...**

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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

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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.

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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!

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"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.

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Overall feelings I still can't quite figure out if this illness was in me all along and just hasn't flared up enough to notice until now or whether the extreme stress I've been under for the past year or so has triggered it. If the second scenario is correct I can't stop thinking about the events that all led up to this almost year-long bout of ill health and life-changing diagnosis. Can celiac be brought on by stress alone or realistically was I always a ticking timebomb just waiting to be set off? For every person I see that's had a positive change after cutting out gluten (and getting by with reasonably achievable adjustments) there seems to be 10 others with horrible side-effects and long-term complications. Right now the future feels rather bleak - like all hope just been taken away. Help???
    • It sounds like you're doing great. That's amazing that your anxiety has decreased like that. You're obviously doing something really good for your health. With the other things I'm sure they will get better in time. After I gave up gluten I had a bad year but overall it got better. Things like anxiety and insomnia massively improved over time with being gluten free. However, going Paleo (which you are on your way to with the no dairy too) really helped my anxiety, as did running and self-taught acupressure. In particular I found processed gluten free foods were awful for my mood. I know you have to find your own way but I really want to encourage you to see how you feel without that if you haven't already. I also can't afford therapy but when I did have it, that helped too but just being well, gives you the chance to sort your own thoughts and feelings out even without a therapist. Good luck
    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of grains, but I have reintroduced rice using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My Paleo+Fasano diet has been assessed by a registered dietician to include every nutrient and micronutrient that I need so I guess having a really good diet is helping too. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. A lot of the steps I have taken to avoid gluten would be seen by some as over the top but I can say that for me, when I introduced these steps, that's when I stopped getting reactions and it's all worth it. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
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