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11 replies to this topic

#1 a*lone*star

 
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Posted 31 October 2011 - 08:09 AM

Hi. I was diagnosed with coeliac in April and am still struggling tremendously. I am really looking for day to day support as well as as much information and advice I can stomach (hehe!!)...

Thanks
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Diagnosed with IBS 15yrs ago, with depression 2005, and with coeliac April 2011. Also avoid lactose, allergic to some fruit.

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#2 AVR1962

 
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Posted 31 October 2011 - 08:28 AM

Hi. I was diagnosed with coeliac in April and am still struggling tremendously. I am really looking for day to day support as well as as much information and advice I can stomach (hehe!!)...

Thanks

What are the trouble symptoms/issues you are needing help figuring out?
  • 0
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.

#3 GlutenDude

 
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Posted 31 October 2011 - 08:45 AM

Patience. Patience. Patience. When I was first diagnosed, I read all the stories how people stopped eating gluten and felt better immediately. So I expected it to happen to me. But, alas, it took me a few years to really start to improve. Just keep being extra careful about what you eat, exercise when you can and in time, your body will begin to heal.
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#4 sahm-i-am

 
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Posted 31 October 2011 - 11:29 AM

Welcome! When I was diagnosed last year it came as a complete shock - I never had any symptoms at all, they were searching for cancer. And while I didn't have the healing issues that come fast for some and slow for others I did have the emotional and mental issues. You will go through a grieving process, angry one minute and denial the next. Finally, after a year and a half, I can say I'm at peace with this new lifestyle. It isn't a diet - you really have to change the way you view things. It can be a struggle for some and a breeze for others; but this place truly helps!
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Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"
Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"
Uhhh.....yeah!
DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!
DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.
Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)

#5 Bubba's Mom

 
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Posted 31 October 2011 - 11:43 AM

:D Hello and welcome! You can ask your questions and voice your concerns here. We're all walking the same path.
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#6 kitgordon

 
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Posted 31 October 2011 - 12:30 PM

Hi and welcome aboard! This is a great place to get support, as well as answers for any questions you may have.
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#7 a*lone*star

 
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Posted 31 October 2011 - 01:15 PM

I think my problem stems from not being able to cook and not enjoying eating. I have spent years filling my body with rubbish because the pains I had I thought were hunger pains and would eat the wrong things and make me worse. I find experimenting with new foods very difficult. I love fruit but am allergic to some fruit so find I have to be careful trying different kinds. Lactose doesn't agree with me so no dairy products. I have seen a dietician once (due a review on wednesday this week) and she told me what I should be eating, and when I look at the food chart, I'm hardly touching any of it!! Instead of 5 a day I'm lucky to be eating 5 a week! On top of that I'm without a cooker atm waiting for ours to be delivered in about two more weeks !!

I was struggling through until friday last week when I went out for lunch with friends and had battered fish and fried bread.... for once I just wanted to pretend I was cured :( Needless to say I wasn't and ended up at A&E on saturday night with excruciating pains and diarrhoea. Not been work today and just ate plain crackers :( I know I'm an idiot but I hate being "abnormal".

My husband is not supportive and thinks one time won't hurt. I tried to explain to him but nothing is sinking in. I have a consultant review in a week or so also and have been told I should ask for a thyroid blood test, DEXA scan, Vitamin B12 and Vitamin D check... is there anything else I should ask about?

Oh, and also for the first time in my life my period was a month late....is this normal ????????

Many thanks everyone for your comments :)
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Diagnosed with IBS 15yrs ago, with depression 2005, and with coeliac April 2011. Also avoid lactose, allergic to some fruit.

#8 KikiUSA

 
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Posted 31 October 2011 - 01:37 PM

I think my problem stems from not being able to cook and not enjoying eating. I have spent years filling my body with rubbish because the pains I had I thought were hunger pains and would eat the wrong things and make me worse. I find experimenting with new foods very difficult. I love fruit but am allergic to some fruit so find I have to be careful trying different kinds. Lactose doesn't agree with me so no dairy products. I have seen a dietician once (due a review on wednesday this week) and she told me what I should be eating, and when I look at the food chart, I'm hardly touching any of it!! Instead of 5 a day I'm lucky to be eating 5 a week! On top of that I'm without a cooker atm waiting for ours to be delivered in about two more weeks !!

I was struggling through until friday last week when I went out for lunch with friends and had battered fish and fried bread.... for once I just wanted to pretend I was cured :( Needless to say I wasn't and ended up at A&E on saturday night with excruciating pains and diarrhoea. Not been work today and just ate plain crackers :( I know I'm an idiot but I hate being "abnormal".

My husband is not supportive and thinks one time won't hurt. I tried to explain to him but nothing is sinking in. I have a consultant review in a week or so also and have been told I should ask for a thyroid blood test, DEXA scan, Vitamin B12 and Vitamin D check... is there anything else I should ask about?

Oh, and also for the first time in my life my period was a month late....is this normal ????????

Many thanks everyone for your comments :)




What your going through is very normal. I think all of us has felt this way but it does get better with time. It took me along time to learn how to make enjoyable food and I think for months I was on eggs and rice lol. Try looking up gluten free recipes, I have found some really yummy ones.

It is very important to have someone who supports you so I am glad your here, there are lots of people here who will help you get through this difficult time.

As for my periods, yup they did change alot. Sometimes I have 2 a month. Hang in there ok and I hope you feel better soon.
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Diagnosed 12-2-09 with celiac disease
Have a wonderful husband who I am madly in love with and 2 wonderful children
Everyday is a challenge and journey, I am so glad I have people to go through it with

#9 jswog

 
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Posted 31 October 2011 - 01:39 PM

Not been work today and just ate plain crackers :(

Plain crackers? You aren't talking something like saltines are you? I have yet to find anything that I'd consider a 'plain' cracker that is gluten free...

Jen
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#10 rana

 
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Posted 31 October 2011 - 02:48 PM

Its so nice to see so many helpful replies, I get on here sometimes after getting glutened to just to feel better about everything. For me, my denial kept me from getting healthy for a long time and not wanting to admit or simply just didn't realize how sensitive I really was to gluten. I knew I shouldn't eat certain things, that little voice in my head (which is amazingly never wrong) would tell me to not eat it, but I would, because I wanted it, because I felt like I deserved it, because my friends were eating it, then I'd pay the price. I still do this sometimes and its been two years. Once you finally start to feel better, it took me almost two years, you have too much to lose and you don't bother making needlessly risky decisions. You don't even miss that food, but, boy, you sure grieve its loss for a while. At least I did.

Another thing that helped me tremendously was the addition of green smoothies to my diet, basically fruit smoothies with spinach or kale or some other greens added in. It looks ridiculous but tastes delicious, you can't taste the greens I promise! I had to be really careful at first which fruits I put in as I couldn't tolerate a lot of raw fruit or veggies at the time, but I could tell my body was finally getting the nutrients it so badly needed to heal and in a format that's easy for the body to absorb. I drink them every day now, I even crave them. Its way easier to get the five in when you can just drink it down....
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#11 cap6

 
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Posted 01 November 2011 - 07:27 PM

I think my problem stems from not being able to cook and not enjoying eating. I have spent years filling my body with rubbish because the pains I had I thought were hunger pains and would eat the wrong things and make me worse. I find experimenting with new foods very difficult. I love fruit but am allergic to some fruit so find I have to be careful trying different kinds. Lactose doesn't agree with me so no dairy products. I have seen a dietician once (due a review on wednesday this week) and she told me what I should be eating, and when I look at the food chart, I'm hardly touching any of it!! Instead of 5 a day I'm lucky to be eating 5 a week! On top of that I'm without a cooker atm waiting for ours to be delivered in about two more weeks !!

I was struggling through until friday last week when I went out for lunch with friends and had battered fish and fried bread.... for once I just wanted to pretend I was cured :( Needless to say I wasn't and ended up at A&E on saturday night with excruciating pains and diarrhoea. Not been work today and just ate plain crackers :( I know I'm an idiot but I hate being "abnormal".

My husband is not supportive and thinks one time won't hurt. I tried to explain to him but nothing is sinking in. I have a consultant review in a week or so also and have been told I should ask for a thyroid blood test, DEXA scan, Vitamin B12 and Vitamin D check... is there anything else I should ask about?

Oh, and also for the first time in my life my period was a month late....is this normal ????????

Many thanks everyone for your comments :)


I so understand! I ate tons of junky food, little veggies or fruit and still don't like to cook - or know how to very well. My advice? Go slow. Don't pull out the complicated recipes - I stuck to ones with 5 ingredients max. Learn a couple of things and slowly you can add more. I am not quite 2 years gluten-free and learning to branch out with my cooking.

As for the dietitian, take the knowledge and go slow. Add healthy foods in slowly. If you look at the whole picture it is over whelming so break it down. Start with a healthy breakfast and work on that till it becomes habit. Then add in a healthy snack, then lunch and so on. don't beat yourself up. I still have a problem with getting enough servings of everything especially fruit for whatever reason.

Please don't eat anything gluten. You will undo all the good that you've accomplished.
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#12 AVR1962

 
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Posted 01 November 2011 - 10:48 PM

I think my problem stems from not being able to cook and not enjoying eating. I have spent years filling my body with rubbish because the pains I had I thought were hunger pains and would eat the wrong things and make me worse. I find experimenting with new foods very difficult. I love fruit but am allergic to some fruit so find I have to be careful trying different kinds. Lactose doesn't agree with me so no dairy products. I have seen a dietician once (due a review on wednesday this week) and she told me what I should be eating, and when I look at the food chart, I'm hardly touching any of it!! Instead of 5 a day I'm lucky to be eating 5 a week! On top of that I'm without a cooker atm waiting for ours to be delivered in about two more weeks !!

I was struggling through until friday last week when I went out for lunch with friends and had battered fish and fried bread.... for once I just wanted to pretend I was cured :( Needless to say I wasn't and ended up at A&E on saturday night with excruciating pains and diarrhoea. Not been work today and just ate plain crackers :( I know I'm an idiot but I hate being "abnormal".

My husband is not supportive and thinks one time won't hurt. I tried to explain to him but nothing is sinking in. I have a consultant review in a week or so also and have been told I should ask for a thyroid blood test, DEXA scan, Vitamin B12 and Vitamin D check... is there anything else I should ask about?

Oh, and also for the first time in my life my period was a month late....is this normal ????????

Many thanks everyone for your comments :)

Everything you have described is so normal. It is a real adjustment and it takes time to wrap your head around all this. We basically have to give up our old cozy eating habits and find a new way to eat, and at first that seems real limiting. However, once you get the hang of what you can and cannot have your world starts opening up to more options. There is a real good continual post on this site that is under Recipes and Foods" asking "What is for dinner tonight" which might give you some ideas. For now though, getting back to basics and going with raw foods, all natural, is best to allow some healing.

It does take family members awhile too. My adult daughters went gluten-free over 2 years ago and when they did, I didn't understand. Now I am in that boat, have been gluten-free over 6 months and hubby keeps "forgetting?" He has even told our friends that he thinks my system is still messed up from a liver cleanse I did a year ago. I just tell them I have been diagnosed with celiac and have gotten better being gluten free.

Words of advise to add to your vit testing which I agree is very important, many of us become deficient, keep a journal so you can look back and see what you ate that may give you trouble down the line. Read labels. Keep your diet clean. Learn to ask questions when you go out. Take no chances. Take food with you if you are going to be away from home just incase you get caught in a situation where you have no gluten-free options.

You really will get to feeling better and once you catch on to what you need to do to make yourself healthy you will not question going back to your old ways.
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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.




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