Have Celiac disease- been eating wheat for 8-9 years... - Mothering Forums

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#1 of 15 Old 04-06-2012, 07:42 AM - Thread Starter
 
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I was diagnosed with celiac disease at round the age of 2, and my mother had swiftly put me on a GF diet, which i didnt necessarily obey- as soon as i got older. I hated GF foods. i hated my condition, and ofcourse, since i was a child and coudnt really understand the damage it would cause me, was determined to eat anything but. and so naturally i would sneak some buscuits and other non GF snacks whenever i could. all this changed when we went on a holiday to my grandmother, where my mother was advised to let me eat more "natural" foods like any other child - i was very skinny, since i didnt eat much-but as soon as i started eating other foods, i gained some weight and wasnt so frail looking anymore- within a month.ever since, my mother was convinced that i was miraculously cured. i've felt so much better and much more stronger, happier as i didnt have to eat all that foul tasting GF foods which i so extremely despised.

 

however, at the age of 13/14 i began losing weight for a week, then gaining some more the week after- for no apparent reason.i started having some wee problems with my joints.Then, after around two years started the nose bleeds, then soon after, the bathroom problems and very recently - around 2 to 3 months ago TMJ. another symtom ive noticed is constant and sever headaches, which would make it really difficult for me to see and focus my eyes- everything would be blurry. if i trried looking at someone's face, i would see perhaps the eyes, then would have to move my head slightly to notice the nose etc. one thing at a time. the range of sight would go all wrong and i would hurt to open my eyes at all. -all these are symtoms of celiac disease. i didnt think much about it- but my mother was worried i had it back - or perhaps never really got cured. i had no idea what this thing was that i had- so i started researching- from scratch. i noticed that i had soo many symptoms that was listed for celiac disease- and we went to the GP to confirm our suspicion. my GP have arranged for tests and appointments with dieticians and what have you. 

 

what i find most bizarre, however, is that people who go on a GF diet GAIN weight! how is that supposed to happen? i already know the answer but i just dont like it. and since i still REALLY REALLY hate GF  foods, i have no idea what im supposed to do. Although the bit about the weight gain doesnt sound so appealing, im looking forward to this new lifestyle.

 

What im really wondering though, is whether or not my villi are seriuosly damaged after so many years of eating gluten (im nearly 17)- is it possible that its developed into something serious? i really hope not, but this is the main question thats running at the back of my head.  i tried researching that but, couldnt find anything.

im really anxiuos of the answer to that  - i already know all the possibilities.

 

any advice would be much appreciated.

 

 

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#2 of 15 Old 04-06-2012, 07:59 AM
 
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I doubt I'm the best person to answer this - I don't have celiac and am not a parent of a child with celiac or anything. However, it really jumped out at me that your mother apparently fed you a diet of products labelled Gluten Free. There is an alternative.

 

You could avoid eating products and just eat foods naturally free of gluten. It does take an effort to change the diet, but it's definitely worth it - much healthier not to mention yummier.

 

So, for breakfast, instead of GF pancakes and GF cereal and GF muffins (ugh), have scrambled eggs and bacon, or fruit and cheese, or yogurt, or even last night's leftovers. If you really love cereal, you could get buckwheat, which is sort of like grape-nuts, and despite "wheat" being in the name, is not related and naturally has no gluten (not just processed and removed). This is good with a sliced banana and milk, for example.

 

For lunch, instead of a GF sandwich, have soup and salad.

 

For dinner, instead of a GF lasagna, have the traditional meat-veggie-starch (such as chicken, green beans and potatoes) combo. Or there are any number of casseroles that don't use wheat or other gluten-containing grains.

 

When people with celiac disease eat gluten, their absorption goes down, which can lead to low weight OR sometimes the weight is ok or even high, but still not ideal in composition - low muscle and high swelling. When you remove the allergenic foods from your diet, your body can (after an adjustment period) absorb more as it doesn't have to build defenses against the gluten you consume. Thus your body can use the nourishment you give it to build healthy mass, losing excess swelling and fat but adding muscle (and, who knows, maybe bone mass but don't quote me).

 

Personally, I don't think much of GF products, they may be gluten-free but they are not nourishing. While wheat is a staple of our culture, it is not a required staple of the human diet, and can be avoided without substitutions.


Homeschooling mama to 6 year old DD.

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#3 of 15 Old 04-06-2012, 08:08 AM
 
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I would suspect you have a lot of damage.  You never were "cured" as once you have Celiac, you have it for life.  It's not a disease that comes and goes. You just have it.  Period.  


As for weight gain on the GF diet, it is actually common.  GF baking esp. has more calories in it d/t how it is made.  A lot of people gain weight on the GF diet.

 

There is a web forum much like this that has a teen section you may want to check out.  Celiac.com

 

Good luck!

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#4 of 15 Old 04-06-2012, 08:11 AM - Thread Starter
 
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when you say alot of damage, do you by any means mean........ cancer? Could it develop into intestinal cancer. or any other cancer?

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#5 of 15 Old 04-06-2012, 08:16 AM
 
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There is new research on the likelihood of cancer with undiagnosed/untreated  Celiac. Again, if you ask over at Celiac.com they can point you to the latest research.  FWIW, many many people are diagnosed much late in life and don't have/get cancer.  

 

Take care of yourself!  Don't go off gluten till you see the Dr. and they do all the testing they need to!  I know you may want to do it but hold off till you see the Dr.

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#6 of 15 Old 04-06-2012, 08:38 AM
 
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Have you tried the newer gf brands of food? That have vastly improved in just the last few years since we went gf. Also, agree with pp about just eating more foods that are naturally gf - which is pretty much all fresh foods found in the supermarket. There are dozens, maybe hundreds of gf blogs out there full of great recipes too.

 

With regard to your current state of health, I would start reading this thread now.... http://www.mothering.com/community/t/434071/healing-the-gut-tribe-cheat-sheet

 

 

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#7 of 15 Old 04-06-2012, 01:55 PM
 
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Please support my petition for the Girl Scouts to sell a gluten free and allergen free cookie.  http://www.change.org/petitions/encourage-the-girl-scouts-to-sell-an-allergen-free-cookie

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#8 of 15 Old 04-06-2012, 03:47 PM - Thread Starter
 
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if i had intestinal damage - it would have lead to malabsorbtion problems... which clearly dont seem to be the case - im of above average height with healthy weight according to my BMI.

and besides, i should know- u shouldnt beleive everything that a doctor says- ive been eating gluten for 9 years, and have no seriuos problems. how is that possible? shouldnt i have at least developed some sort of seriuos abdominal pain - and to use logic here- theres no way i would have been able to fully develop.i would have been really underweight if i had the disease- since my villi wouldnt be able to absorb all the nutrients and minerals that my body needs to develop.

 

put simply, i shoudnt be thinking of GLUTEN free, but Celiac free. im cured- or maybe that biopsy test from my swedish doctor (a decade and a half ago) went horribly wrong and i never had the condition/disease in the first place.

 

Thanking u for the advice. got me thinking.

 

PS: when i said i hated the gluten free diet,eat.gif i meant i hated not being to eat normal bread and normal pasta and normal biscuits. besides, there are millions of traditional foods which dont contain gluten in my culture, so horrible food wasnt the problem. Appreaciate the advice lauhaire though-got me smiling.

 

 

 

 

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#9 of 15 Old 04-06-2012, 04:23 PM
 
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If you have all the answers, congrats to you!  

 

There are many asymptomatic people with Celiac.  So maybe your Swedish Dr. was incorrect.  Maybe you have it. Maybe you don't.  If you aren't interested in the facts of the disease, I am not sure I or anyone here can help you.

 

Good luck in your future and health!

 

 

(I will not be responding to this anymore as you seem to know what you are doing or you are trolling.  In any case, much luck to you!)

 

 

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#10 of 15 Old 04-06-2012, 04:37 PM - Thread Starter
 
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I will not be responding to this anymore

correct me if im wrong, but thats the bit where most grown ups would ideally keep inside.

 

 

Quote:

Good luck in your future and health!

and this bit, they say outloud.

 

 

Anyhow, i really, really do appreciate your earlier advise, which as i said, got my wheel of thought turning.

 

Enjoy your holidays!!

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#11 of 15 Old 04-07-2012, 06:46 AM
 
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I'm sorry, I think I missed something, I don't really understand. You say you have no serious problems and then you write this:
 

Quote:

Originally Posted by LOVECELIAC View Post

 

however, at the age of 13/14 i began losing weight for a week, then gaining some more the week after- for no apparent reason.i started having some wee problems with my joints.Then, after around two years started the nose bleeds, then soon after, the bathroom problems and very recently - around 2 to 3 months ago TMJ. another symtom ive noticed is constant and sever headaches, which would make it really difficult for me to see and focus my eyes- everything would be blurry. if i trried looking at someone's face, i would see perhaps the eyes, then would have to move my head slightly to notice the nose etc. one thing at a time. the range of sight would go all wrong and i would hurt to open my eyes at all. -all these are symtoms of celiac disease. i didnt think much about it- but my mother was worried i had it back - or perhaps never really got cured. i had no idea what this thing was that i had- so i started researching- from scratch. i noticed that i had soo many symptoms that was listed for celiac disease- and we went to the GP to confirm our suspicion. my GP have arranged for tests and appointments with dieticians and what have you. 

 

 


Those are serious problems. The joints thing, that's just going to get worse and it can get debilitating - especially given that you have issues already at your age. The eyesight thing, I don't know what to say, it's a big deal.

 

I like pasta too. So I guess the question is - and I'm totally serious - which do you want more: pasta or health?

 

I also wasn't sure but I thought it was possible that this is really about fear of becoming overweight. You won't become overweight by quitting pasta. (You might become overweight by eating a steady diet of GF products - as opposed to enjoying them on rare occasion as a treat). And I have to wonder, how far we've gone astray when we've taught our young women to fear gaining 10 pounds over going blind, having joint pain and loss of mobility, TMJ, and frequent nosebleeds.

 

Also, could you clarify what your question was? Were you looking for people to assure you that you were cured of celiac and are free to ignore your alarming symptoms and, I don't know, assume you are imagining them? Not being your doctors, we couldn't possibly, but since there is no cure (other than to stay on a gluten-free diet, which isn't really a cure but will relieve symptoms) your doctors couldn't either.

 


Homeschooling mama to 6 year old DD.

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#12 of 15 Old 04-07-2012, 06:48 AM
 
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If it's about weight, my 25 stubborn pounds that I couldn't get rid of for years even when starving myself on 500-600 calories a day, came off when I eliminated wheat from my diet. I did not turn to GF substitutes, I just stopped including wheat in my diet.


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#13 of 15 Old 04-07-2012, 09:01 AM
 
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I'm not sure what the circumstances were for you getting tested when you were 2, but in some people the Celiac gene has to be triggered (usually by a death or traumatic experience - something high stress). This was the case for me - fine until I was 20, and whammo. It was eight years of increasingly painful symptoms before I got a diagnosis.

If your skeptical about having celiac, get retested while your still eating gluten. But as it's an autoimmune disease, its not something that's going to go away. The only cure (for the time being) is a gluten free diet. Without going gluten free, your initial symptoms (abdominal pain, joint pain, headaches, all of it) are only going to get worse, your villi may become irreparably damaged, and it could eventually lead to cancer, intestinal rupture....or worse.

It helps to think of food as eating to live, rather than living to eat. It gets easier - eventually those muffins and cupcakes and whatnot become "not-food". After almost three years it still makes me crazy, but I have a really great support system in friends who help head me off when temptation sets in.

Good luck!

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#14 of 15 Old 04-07-2012, 02:26 PM - Thread Starter
 
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i was tested when i was 2 because i had constipation and made a huge deal out of it. still have it now, but so do millions of other healthy people out there.

 

My joints problems could be due to the fact that 95% of the people in my family - starting from my great great grandma, have problems with their bones/joints. Even my mother has some  problems with her hip.   i might have the headaches and eye problems because i have problems with my eyes - which i do since i wear glasses. my doctors said the nosebleeds are due to changes in the seasons- which many people get, who arent gluten intolerant.

 

but then again, my appointment with my GP is tomorrow- hopefully they'll get those damn tests done, and ill know for sure.

 

 

I wouldnt have minded being a celiac if it wasnt for the fact that IF i still am, it would mean i've slowly been killing myself for 9 years. Who knows what sort of damage i've inflicted upon myself?

 

 

 

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#15 of 15 Old 04-08-2012, 07:49 AM
 
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I would agree with the other respondent.  I was diagnosed with Celiac Sprue about ten years ago.  I had gone my entire life symptom free and then the symptoms manifested after a nasty infection had set in from a spider bite.  I am different from you in the sense that I never really liked sandwiches, pastas, or many other items containing wheat.  My doctor suggested that perhaps it was my body's way of telling me I shouldn't eat those things.  Making lifelong changes to your diet is the best solution, but for those times when you REALLY want a cookie, or lasagne, leave it to the experts.  I found several bakeries and restaurants that offer delicious gluten free products, and they are much better than I could make.  I will say that spaghetti noodles made with quinoa are very similar to regular pasta.  I just started substituting rice for my carbohydrate vs. pasta, bread, or something else.  The long-term effects could be a big difference in the quality of your life.  I would urge you to heed your doctor's advice and maybe get some counseling to cope with your condition.  It is no different than someone who has been diagnosed as diabetic.  Lifestyle changes must be made or your health could be at risk.  Good luck to you.

 

Janine

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