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Just Diagnosed, Questions Inside Post


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#1 Lindsay630

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Posted 20 August 2010 - 09:29 PM

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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#2 sandsurfgirl

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Posted 20 August 2010 - 10:46 PM

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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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#3 sandsurfgirl

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Posted 20 August 2010 - 10:52 PM

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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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#4 GFinDC

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Posted 21 August 2010 - 06:04 AM

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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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#5 mushroom

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Posted 21 August 2010 - 09:33 AM

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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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

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Caffeine free 1973
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Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
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(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#6 T.H.

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Posted 21 August 2010 - 10:37 AM

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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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#7 sb2178

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Posted 21 August 2010 - 10:49 AM

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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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#8 Takala

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Posted 21 August 2010 - 11:05 AM

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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#9 Superfudge

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Posted 21 August 2010 - 04:44 PM

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 about 500 miles in 7 days. They provide food, but I can bring along food for when their menu doesn't work for me (which is a lot of the time). Trying to figure out what to bring, where to even start! Being new to gluten free is challenging, but adding onto that trying to eat for energy (many 1000's of calories expended each day) on this tour, and I'm pretty worried. Any thoughts or helpful sources?

Thanks, been lurking here for a week and everyone seems very friendly and helpful.
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Diagnosed by biopsy and blood test August 11, 2010.
GI quote: profound atrophy of the villous.
Scared me to death. Still very new at this.

#10 Skylark

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Posted 21 August 2010 - 05:16 PM

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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#11 Superfudge

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Posted 21 August 2010 - 08:01 PM

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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Diagnosed by biopsy and blood test August 11, 2010.
GI quote: profound atrophy of the villous.
Scared me to death. Still very new at this.

#12 Lindsay630

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Posted 21 August 2010 - 08:43 PM

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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#13 Looking for answers

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Posted 21 August 2010 - 08:50 PM

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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2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)
2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life
2009 Low T3 thyroid hormone, muscle twitching and adrenal fatigue
2006- Elevated Speckled ANA. GI suggested Celiac. Started gluten-free diet, but sloppily
2005 - Thought I had wheat "allergy." Stopped eating bread, oats problem too
College years - Still vegan -sickest point in life. Every classic celiac symptom
Teenage years - Stomach pain prompted veganism -> BIG mistake!
Child - Awful gas, D, C. Chronic infections, appendix and tonsils removed

#14 missceliac2010

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Posted 22 August 2010 - 03:11 AM

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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Heather C.
July, 2010: Diagnosed with Celiac Disease via elimination diet and strong Lactose Intolerance via blood work. My symptoms of glutening include 1. extreme abdominal distention, 2. severe abdominal pain, 3. gas, 4. mood swings/generally negative and unpleasant to be around!

#15 Skylark

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Posted 22 August 2010 - 10:05 AM

"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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