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New At This-Need Words Of Wisdom


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26 replies to this topic

#1 vsferm

 
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Posted 06 September 2011 - 12:20 PM

Hi,

I was recently diagnosed with Celiac Disease. I was diagnosed a week ago, since then, I have been gluten-free. I have a lot of mixed emotions about all of this. I am not sure how to take it all in. I feel like I've been thrown into a whirlwind and have yet to land. I stop eating and drinking almost everything. I was not sure how to proceed, so I only eat gluten free rice, fresh fruit, fresh meat, and drink only water with crystal light flavoring. Thats it! I went on this website and found out a lot of information but I still don't know where to start. I am having a hard time ajusting with the fact that my life has been flip up side down with this diagnosis.

Early in my teen years, I found that certain foods really effected me, like-most fruits, most veggies, and any kind of nuts, and anything dairy, because they made my tongue itch and my throat hurt and my ears itch, so I avoided them. Then as an adult, I found that my issues were getting worse and worse to the point where I did not eat half the time because of fear of having to go to the bathroom constantly and having really bad stomach pains. I never said anything to anybody, because I didn't want my family to worry. So, I would eat and suffer afterwords and just delt with it. I am now 35yrs old.
It's funny how things work out sometimes because I had a routin check up with my doctor because on top of this I also have ADHD and take meds for it, so anyways, I had told my doctor that I was stomach pains daily and that I was having to constantly go #2, and I was having alot of UTI's, and that there were a lot of foods that I could not eat along with not being able to drink mild or eat dairy products. So, she had me get blood work done and she told me that I had Celiac Disease, go figure.

So, now I am at the point of "What do I do now"
Any advise or words of wisdom would be greatly appreciated.

Thank you,
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vsferm

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#2 cyberprof

 
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Posted 06 September 2011 - 02:45 PM

vsferm, congratulations on the diagnosis. I know you're still in the shock and disbelief stage but it will get better. And you may find out that your food intolerances get easier to manage or go away, at least mine did.

You are doing this the right way: People here often encourage the newly diagnosed to eat simple meals of meat, cooked veggies, plain rice, plain potatoes. Start simply and then add new foods in one at at time every few days. Potatoes, sweet potatoes, cooked pears, turkey, chicken, rice, beef, fish are good to start with. Zucchini (cooked), spinach cooked, carrots cooked, applesauce can be added in. Things to be careful of are the top allergens (eggs, dairy, soy, corn, nuts, and nightshades - tomatoes, peppers, eggplant, chili powder etc.) I've never heard of anyone being sensitive to non-iodized salt or olive oil so you could add them in too.

Reading here can help you figure out how to avoid gluten and where it lurks. Hormel, Kraft and Unilever brands don't "hide" gluten in spices or flavoring so if the product contains wheat it will say on the label "Allergins: Wheat" or "Allergy information: Contains Soy and Wheat" or whatever. After you get some experience, you'll have a lot of "go-to" foods that can form the basis of your new diet.

Eating out is hard but after you learn more you can learn to manage that too.

Best of luck and ask questions when you need to.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#3 Marilyn R

 
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Posted 06 September 2011 - 03:57 PM

It helps if you pack your lunches for work. It is superbly a pia, but it's better than the pia you get from not planning or packing.

It has helped me to buy a package of romaine lettuce hearts every weekend. I chop and spin them, and stick them in gallon zip lock bags. You can alternate protein (tuna, if you can find it with just tuna and olive oil, (no natural flavorings... which usually means wheat), grilled or baked chicken, steak, fish or other seafood leftovers, grilled or steamed asparagus, hearts of palm, shaved or chopped carrots, chopped olives. Sunflower seeds or nuts if I don't have a leftover protein. And sometimes it's amazing when you add dried or fresh fruit to the salad.

My dressing is always the same. 1/2 squeezed lime and a T. of olive oil.

Since you've been suffering from D you are probably leery of salads. Speaking from my own experience, and of course we are all different, I'd want to add fiber to my diet. (I thought uncontrollable D was horrid until I had really bad constipation after going gluten-free). Again, that doesn't mean that you're on the same road that I was on.
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#4 futuredvm24

 
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Posted 06 September 2011 - 07:47 PM

I was just diagnosed last Wednesday myself and I know how you feel about being overwhelmed with information and wondering what to do next. I am sticking to whole foods for awhile and then transitioning in some gluten-free processed products like bread. It's strange knowing that your life is different now. But it's for the best, we will be healthier because of it and I can look forward to that.
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#5 BabsV

 
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Posted 07 September 2011 - 10:46 AM

I've just finished week #4 of being gluten-free. It has been overwhelming and at times I feel like I'm never going to get the hang of it. Then I realize I need to give myself more time...there is a very steep learning curve with all of this and I expect it to get easier as I get used to shopping and cooking. I'm trying to stick to simple natural meals (turkey, chicken, rice, cooked vegetables, some fruits -- baked apples were yummy!) and have added in a few things here and there. I find I feel better if I make sure I have enough protein (meat or beans.) I went out on a limb today and had a small piece of hard cheddar cheese (it was on the list of approved foods and the ingredients didn't include gluten) and it was a mistake. I am still having issues with dairy apparently...although plain non-fat yogurt seems to be ok for me now. Sorry to ramble. From what I've been reading most people on these forums have been where you are at and are doing much better now. It just takes time, maybe more time than we'd like (personally I'd love it if I were back to 100% and full of energy but that hasn't happened yet!), but it will happen.
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#6 oceangirl

 
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Posted 07 September 2011 - 05:07 PM

Hi and welcome to the board!

Please keep reading here to obtain information and guidance. Perhaps more veterans will respond but, many of us have found, through many years of trial and error, that we have other sensitivities. Your best bet now is to stay very simple, make all meals from whole foods you prepare and keep a detailed food/symptom log to rout out possible culprits.

In my first 2 years gluten free I also eliminated: soy, legumes, DAIRY, corn, eggs, all replacement grains, nightshades and citrus. This seems extreme, I know, but by keeping a detailed food log for 5 years and only adding in ONE new food item at a time, I have successfully put back into my diet everything but soy and legumes and those simply because I've always had difficulty digesting them. 6 years in, I feel well MOST of the time but I still eat relatively few processed foods and I NEVER eat out. (FULL DISCLOSURE: I found myself to be in that unfortunate category of "super sensitive". That'll teach me to poo-poo the reality of CC and high sensitivity!

I am curious about this thing you call "crystal light"- I would take out ALL processed foods for now until you feel better. YOU CAN DO IT! You may have success with fresh chicken, butternut squash, steak, seafood (unprocessed), cooked veggies (for now-helps with digestion), bananas, sweet potatoes, possible rice but some of us have issues with all grains. I still cannot eat cooked rice but tolerate rice flour well(Tinkyada). You may be able to tolerate a bit of fruit but I'd stick to cooked veggies for now. Many people have to do without dairy while healing but can put it back successfully once healing is underway.

hang in there! you WILL feel better and it is doable!

Good health to you!

lisa
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#7 Skylark

 
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Posted 07 September 2011 - 07:46 PM

I feel like I've been thrown into a whirlwind and have yet to land. I stop eating and drinking almost everything. I was not sure how to proceed, so I only eat gluten free rice, fresh fruit, fresh meat, and drink only water with crystal light flavoring. Thats it! I went on this website and found out a lot of information but I still don't know where to start. I am having a hard time ajusting with the fact that my life has been flip up side down with this diagnosis.

I know that whirlwind. I was gluten-free, dairy-free, soy-free for a while at first!

If I were you I'd stick to the foods that work until you're felling better. Once a week try adding something new like a different veggie or a gluten-free grain and figure out what you can and can't eat. I bet you find you can tolerate more foods once your intestine heals.
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#8 shadowicewolf

 
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Posted 07 September 2011 - 08:08 PM

belive it or not, fiber does help regulate D some, as long as you don't overdo it.
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#9 ashleyt

 
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Posted 08 September 2011 - 08:19 AM

Hi,
I totally understand the whirlwind. I have been gluten-free for three years and can remember my first few weeks very well. It does get easier...with bumps along the way. Once you are feeling better you will see how much it is worth it. Not sure if your doc talked with you about it or not, but I am one that also suffers from some neuro problems from gluten and through all of my research I have found how much gluten can be a cause of ADHD, so you may even find after time you wont need your meds anymore. I have been able to get off of all medication after my healing started. Stick to it and be happy knowing that you now know what is wrong. That is such a HUGE part of recovery. Good luck and def find yourself a good support system. For many people these forums are just that!
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#10 vsferm

 
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Posted 08 September 2011 - 11:47 AM

Hi,

Thank you all for the wonderfull advise. I am trying to stay postive but like most of you know there are the good days and the very bad days. It seems to me that only time will tell how fast I'll heal but in the mean time, it is good to know that I have an awsome support group.

On a different note: I was wondering if any of you have had moodyness along with dizziness or becoming lighthead while being gluten-free. The past few days it started happening to me, just a little concerned.
  • 0
vsferm

#11 love2travel

 
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Posted 08 September 2011 - 12:04 PM

Hi,

Thank you all for the wonderfull advise. I am trying to stay postive but like most of you know there are the good days and the very bad days. It seems to me that only time will tell how fast I'll heal but in the mean time, it is good to know that I have an awsome support group.

On a different note: I was wondering if any of you have had moodyness along with dizziness or becoming lighthead while being gluten-free. The past few days it started happening to me, just a little concerned.


After going gluten free I felt odd for about three weeks. My symptoms included irritability, moodiness, intense hunger, carb cravings, headaches and dizziness. Not that I was incredibly ill, just off - almost like malaise. Some of us do experience gluten withdrawal so it could be possible with you! Feel better soon. :)
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#12 AVR1962

 
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Posted 11 September 2011 - 01:11 AM

On a different note: I was wondering if any of you have had moodyness along with dizziness or becoming lighthead while being gluten-free. The past few days it started happening to me, just a little concerned.

Dizziness, depression, foggy thought processes get me from High Fructose as well as glutens. If your gluten diet is tight, you have read every label, and are sure what you have put into your body it could be high fructose which is in BBQ sauce, teryaki sauce, etc.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#13 cougie23

 
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Posted 11 September 2011 - 02:32 PM

Nightshade????? isn't that a poisonous mushroom?!! serously....I'm not trying to be funny! this isn't the first time I've heard this referanced. can you explain what you mean by NIGHTSHADE? I'm/we're new! also can anyone explain what a GAPS diet is/stands for?? keeps popping up and I'm curious!? Sorry to intrude...but thanks!!!
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Cougie23
Diagnosed 8/3/11
Celiacs/casein sensitive/lactose intolerent

Favorite quotes-
"I know you think you understand what you thought I said,
But I'm not sure you realize that what you heard is not what I meant!!!"-anonyamous

"you can lead a donkey to the river...but if you want him to drink...
you have to throw him in" -(21 yr.old son)

#14 cougie23

 
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Posted 11 September 2011 - 03:00 PM

Hi Vsferm,
I'm new too. As I've found out...when in doubt GOOGLE IT...any question you have, including if it's gluten free or" harmful/safe for Celiacs...sometimes you have to re-word it a little ,but theres all sorts of info...including older threads on Celiacs.com!!! LOL Thats how I found this place to begin with...I kept getting refered back to this site! also if you go to the HOME page (not the forum homepage ) but the real Celiacs.com you'll find a to eat/not to eat list. oh!! got to go...now!!!
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Cougie23
Diagnosed 8/3/11
Celiacs/casein sensitive/lactose intolerent

Favorite quotes-
"I know you think you understand what you thought I said,
But I'm not sure you realize that what you heard is not what I meant!!!"-anonyamous

"you can lead a donkey to the river...but if you want him to drink...
you have to throw him in" -(21 yr.old son)

#15 mushroom

 
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Posted 11 September 2011 - 03:11 PM

Nightshade????? isn't that a poisonous mushroom?!! serously....I'm not trying to be funny! this isn't the first time I've heard this referanced. can you explain what you mean by NIGHTSHADE? I'm/we're new! also can anyone explain what a GAPS diet is/stands for?? keeps popping up and I'm curious!? Sorry to intrude...but thanks!!!


MUSHROOMS? NIGHSHADES? No way. The nightshade family consists of potatoes, tomatoes, eggplant, peppers in all their forms including paprika and all chilies, also tomatillos. NOT mushrooms, which are a fungus. :) I am not knowledgeable about the GAPS diet.
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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"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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