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Puddy

How Do I Know If I'm Making Mistakes?

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I was diagnosed with celiac disease this past Monday. I've never had intestinal symptons (diarrhea, etc.). The doctors discovered it when I was diagnosed with osteoporsis after a bone density test because of my age (52) and the fact that I'd gone through menopause. I was put on Boniva which gave me hearburn. Then at my yearly physical 2 months later I was anemic so sent for a colonoscopy to check for intestinal bleeding and an endoscopy to rule out bleeding ulcers. The gastro put 2 and 2 together and did a biopsy during the endoscopy to check for Celiac Disease and voila, here I am! My question is how do I know if I'm making mistakes on the diet if I have no digestive symptoms. Do I just have to wait for 6 months at the next blood test? Seems like an awfully long time to be messing up and not knowing it. I've spent the past 5 days (which feels like 5 months) alternating between crying and being on the internet reading everything I can find (which was my dr.'s advice). I am totally overwhelmed about the ingredients in food, gluten in personal products and whether or not I should throw out all my pots and pans! I'm scared to death I'm going to make a mistake and what are the repercussions. HELP! Any suggestions?


Toni

Gluten Free - February 16, 2008

Diagnosed with positive bloodwork and biopsy.

No digestive symptoms for the past 25 years, but did have severe anemia, osteoporosis, lactose intolerance and RLS at time of diagnosis.

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We were not aware of any symptoms before we went gluten free. We did it for our 8 y/o Aspie and when we tested putting it back in both DH and I reacted. That was a shock to us. After being strict for a while even if not perfect, I suspect your body may let you know. It may not be an obvious intestinal warning but maybe headache, brain fog, join pain, water retention (I do this one real bad!!)...


Shellfish free since 1980

Milk free (all forms) since 1991

Feingold in 2003

First gluten-free round 2007

Now entering full time Gluten free, egg free, almond/peanut free

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Yes, you will make mistakes . . . we all do . . . usually followed by a Doh!!!! and a smack to the forehead.

One of our early mistakes was a certain brand of syrup . . . Doh!!! . . . smack

Another was an already prepared twice baked potato . . . Doh!!! . . . smack

A certain BBQ chip . . . Doh!!! . . . smack

etc . . .

And I didn't find these mistakes because she reacted, I found them because I kept double checking . . . kind of the "Wait a minute, that brand is OK . . . but did I check that flavor?" sort of thing. We got better and better and you will too. Now we've got our pantry thoroughly sorted out. Our known good staples are in there and it's easy to check one or two things every so often to see if they are OK.

We have found that even though she didn't react before (that we could distinguish), she does now . . . however, we are not sure of the level that it takes to cause a reaction. The 6 month blood work will give you an idea of how you are doing. You really do need 6 months because you need to give your body a chance to recover and you will make mistakes, especially in the beginning. The simpler the foods that you prepare, the easier it will be to maintain the diet especially in the beginning where there is a steep learning curve.

If your pots and pans are scratched up teflon/coated, then you will need to replace them. If they are stainless steel, give them a good scrub and they'll be fine. I kept all of my pans except for one coated frying pan. I did however get rid of all my old cookie sheets that had those brownish oil marks that you just can't seem to scrub offf. I had a couple of things that I just didn't know and so I replaced them. If its causing you undue stress then replace them.

You can do it . . . one day at a time!!


Janet

Experience is what you get when you didn't get what you wanted.

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Thanks for you help. This site is wonderful. I feel really alone out here. Don't know a soul who has this and can't find a support group on Long Island. Anyone know of any here, please let me know. My doctor just told me to stop eating gluten and go on-line and do as much research as I can. And come back in a month. Not very reassuring.


Toni

Gluten Free - February 16, 2008

Diagnosed with positive bloodwork and biopsy.

No digestive symptoms for the past 25 years, but did have severe anemia, osteoporosis, lactose intolerance and RLS at time of diagnosis.

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darn is right, we all make mistakes at first but with time all of this will become second nature, ive been gluten free for 2 months and already im used to the new diet so keep going

i was almost completely asymptomatic, when i did get a reaction it was very mild, so the only way i know ive made a mistake is if i re-read the label... which i have done several times and found out that we had picked up the wrong thing.

also look out for hidden gluten, i found gluten on a tin of chicken soup earlier... i couldnt beleive it, other things to look out for are burgers, chocolate, modified startches and sausages, but like i say after a few weeks it will be second nature to check things at the store.. and if your like me (paranoid) .. before you eat it

also ive had a lot of people tell me that coeliac symptoms can switch on and off, so you may eat gluten one week and feel ok then eat it the next week and get sick, so if you are making mistakes for a long period of time then your body is likely to tell you somehow.

we didnt get new pots and pans, we just cleaned the old ones thouroughly, however we did get a seperate toaster, bread knife and breadboard

and your not alone, we are all here for you and know how you feel, and you can message me anytime ;)... ive found theres very few support groups in the UK, ......... if there are any at all


"great works are performed not by strength but by perseverence"

 

Diagnosed coeliac - aged 14

                  Asthma

                 Osteopinia

                 High blood calcium

                 Crohn's disease -december 2012 

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I was diagnosed with celiac disease this past Monday. I've never had intestinal symptons (diarrhea, etc.). The doctors discovered it when I was diagnosed with osteoporsis after a bone density test because of my age (52) and the fact that I'd gone through menopause. I was put on Boniva which gave me hearburn. Then at my yearly physical 2 months later I was anemic so sent for a colonoscopy to check for intestinal bleeding and an endoscopy to rule out bleeding ulcers. The gastro put 2 and 2 together and did a biopsy during the endoscopy to check for Celiac Disease and voila, here I am! My question is how do I know if I'm making mistakes on the diet if I have no digestive symptoms. Do I just have to wait for 6 months at the next blood test? Seems like an awfully long time to be messing up and not knowing it. I've spent the past 5 days (which feels like 5 months) alternating between crying and being on the internet reading everything I can find (which was my dr.'s advice). I am totally overwhelmed about the ingredients in food, gluten in personal products and whether or not I should throw out all my pots and pans! I'm scared to death I'm going to make a mistake and what are the repercussions. HELP! Any suggestions?

Excellent questions, and welcome to the Celiac world. I was diagnosed 23 days ago, also without any symptoms. My doctor tested me after I was sick with c.difficile. I have also wondered how I would ever know if I ate gluten if I have no symptoms. I'm seeing the gastroenterologist tomorrow and already have the question on my list of questions, so I'll let you know what I find out! Though this doctor does have a history of walking out of the room while I"m in the middle of asking questions, so I'm not too hopeful I"ll get any answers....

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Excellent questions, and welcome to the Celiac world. I was diagnosed 23 days ago, also without any symptoms. My doctor tested me after I was sick with c.difficile. I have also wondered how I would ever know if I ate gluten if I have no symptoms. I'm seeing the gastroenterologist tomorrow and already have the question on my list of questions, so I'll let you know what I find out! Though this doctor does have a history of walking out of the room while I"m in the middle of asking questions, so I'm not too hopeful I"ll get any answers....

Thanks HelpMe. I'd appreciate hearing what your dr. says and when I go back in a month I'll do likewise. Good Luck getting information.


Toni

Gluten Free - February 16, 2008

Diagnosed with positive bloodwork and biopsy.

No digestive symptoms for the past 25 years, but did have severe anemia, osteoporosis, lactose intolerance and RLS at time of diagnosis.

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Excellent questions, and welcome to the Celiac world. I was diagnosed 23 days ago, also without any symptoms. My doctor tested me after I was sick with c.difficile. I have also wondered how I would ever know if I ate gluten if I have no symptoms. I'm seeing the gastroenterologist tomorrow and already have the question on my list of questions, so I'll let you know what I find out! Though this doctor does have a history of walking out of the room while I"m in the middle of asking questions, so I'm not too hopeful I"ll get any answers....

I have had to tell my doctor, sternly, to sit back down that I was not finished yet (I''ve had to do the same with my mother so I was well practiced at it - lol). He has learned that I do my research and that neither one of us should dismiss the other. We have now developed a mutual respect for each other (I'm the one who figured out that I was celiac).

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I acctually made a mistake tonight :( ... waiting to see what symptoms i get if any.. the only reason i know i made a mistake is i re-read the wrapper and found that the bar of chocolate id just eaten contained barely malt extract..eeek ..i'll let you know what happens


"great works are performed not by strength but by perseverence"

 

Diagnosed coeliac - aged 14

                  Asthma

                 Osteopinia

                 High blood calcium

                 Crohn's disease -december 2012 

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I acctually made a mistake tonight :( ... waiting to see what symptoms i get if any.. the only reason i know i made a mistake is i re-read the wrapper and found that the bar of chocolate id just eaten contained barely malt extract..eeek ..i'll let you know what happens

urgh.. i dont think ive ever reacted this bad, ive had a headache, nausea, stomach cramps and high temp scince about half an hour after eating the offending chocolate .. (whereas id hardly ever get any symptoms before) ... and the reaction was quicker. Hhhm maybe im becoming more sensitive :huh:


"great works are performed not by strength but by perseverence"

 

Diagnosed coeliac - aged 14

                  Asthma

                 Osteopinia

                 High blood calcium

                 Crohn's disease -december 2012 

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I am definitely more sensitive now. I went wheat free years ago when I was diagnosed with fibromyalgia. My pain and fatigue reduced by half. I wasn't completely gluten free, because I didn't know any better. I then started to have stomach issues and a Lupus/Celiac friend suggested that I may be celiac. I went back on wheat and was very sick, bloating, gas, headaches, fatigue and pain. Now that I have been off gluten and dairy for the past 3 months I feel great. If I do get glutened, I live in a house with others who eat wheat, I feel awful and it doesn't take very much for me to have a reaction. I've been very careful lately. Replaced alot of utensils and my toaster (thanks to advice from this forum). Designated gluten and non gluten areas, cloths, cupboards etc... Only prepare food on designated boards and never put anything directly on the counter, always on a plate. I've had alot less problems since.

Good luck.

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Excellent questions, and welcome to the Celiac world. I was diagnosed 23 days ago, also without any symptoms. My doctor tested me after I was sick with c.difficile. I have also wondered how I would ever know if I ate gluten if I have no symptoms. I'm seeing the gastroenterologist tomorrow and already have the question on my list of questions, so I'll let you know what I find out! Though this doctor does have a history of walking out of the room while I"m in the middle of asking questions, so I'm not too hopeful I"ll get any answers....

Hi Help Me

I was wondering how your gastroenterologist appt went. And what he said about how you would know if you ate gluten since you were symptom free before like me? Just curious. I don't have a follow-up appt for another 2 weeks. Thanks.


Toni

Gluten Free - February 16, 2008

Diagnosed with positive bloodwork and biopsy.

No digestive symptoms for the past 25 years, but did have severe anemia, osteoporosis, lactose intolerance and RLS at time of diagnosis.

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