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Gradually Going gluten-free


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14 replies to this topic

#1 meanmachine22

 
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Posted 29 May 2009 - 10:52 AM

Hi, everyone.

I'm not sure if I'm posting in the right category. If not, I apologize.

I was diagnosed with IBS and tested negative for Celiac Disease. However, after telling my doctor about my other problems (allergies, joint problems, fatique, short attention span), she wants me to try out a gluten-free diet to see if it improves my condition. She thinks that I might be gluten-sensitive.

My husband and I make a big grocery shopping trip about once a month, and our next trip is in 8 days. It will be my first gluten-free shopping trip.

My plan is to buy only gluten-free items and eat only gluten-free foods when out at restaurants, but continue to eat whatever gluten-laced food is still in the house, until it's gone.

Let's assume that I am gluten-sensitive. Would you think that I'd have to wait until I go completely gluten-free, or do you think that I may begin feeling a little better after eliminating most but not all gluten products from my diet?

Thanks in advance for any input you'd like to offer. I'm really excited to have found this site - there's so much useful info on here!
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#2 mamaw

 
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Posted 29 May 2009 - 11:54 AM

Hello
Here is my two cents in regard to partial gluten-free! I'm a gluten-free mentor & have been gluten-free for years.
Gluten free is more costly & to see the best results one needs to be totally gluten-free. So if one is being gluten-free partially then I feel you are wasting hard earned money buying the more costly gluten-free foods. This is not a either or lifestyle I understand you want to not waste the gluten items in your kitchen. So I would wait to start the gluten-free until your ready to be faithful....plus one must be very careful about dining out. Cross-contamination is everywhere including Gradma's house!
Have you completed all the proper bloodwork? How or what test did you do for celiac? Did you have a endo? Did you do DNA testing? Allergy testing can detect a wheat allergy but this is an allergy . Celiac is an autoimmue disorder. There are more gluten intolerant than celiac.
I have one celiac gene & 1 intolerant gene.........
Honestly, I think you are putting the cart before the horse. Take this time to use up your food, read, research & read more so you have a full basic understanding of the gluten-free lifestyle....gluten can be hidden in products...this way when you are ready to be gluten-free you will not be overwhelmed. This is a learning process , put it into steps that you are sure of then move on to the next step . No one learns this overnight. This way it will be easier making the change. Many of us have or will go through the greiving process , which is all natural. After all you are giving up a large part of your life , mentally, & socialy & physcially as well...
Gluten free is not a diet but a lifestyle for me....
hth
blessings

mamaw
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#3 Janessa

 
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Posted 29 May 2009 - 12:08 PM

When I went gluten light (before I even knew what gluten was) I did see an improvement, but you will probably notice that you feel even worse when you eat gluten again and will probably start avoiding it at home too. If there is not too much gluten food at home best to have your husband help you get rid of it, or you can donate to a food bank to help out hungry families.
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peanut free Nov 06, gluten free June 07, corn and soy free July 08, latex free Oct 08 Banana and kiwi cross reacting with latex allergy
happily vegetarian

#4 MKat

 
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Posted 29 May 2009 - 05:25 PM

Hello
Here is my two cents in regard to partial gluten-free! I'm a gluten-free mentor & have been gluten-free for years.
Gluten free is more costly & to see the best results one needs to be totally gluten-free. So if one is being gluten-free partially then I feel you are wasting hard earned money buying the more costly gluten-free foods. This is not a either or lifestyle I understand you want to not waste the gluten items in your kitchen. So I would wait to start the gluten-free until your ready to be faithful....plus one must be very careful about dining out. Cross-contamination is everywhere including Gradma's house!
Have you completed all the proper bloodwork? How or what test did you do for celiac? Did you have a endo? Did you do DNA testing? Allergy testing can detect a wheat allergy but this is an allergy . Celiac is an autoimmue disorder. There are more gluten intolerant than celiac.
I have one celiac gene & 1 intolerant gene.........
Honestly, I think you are putting the cart before the horse. Take this time to use up your food, read, research & read more so you have a full basic understanding of the gluten-free lifestyle....gluten can be hidden in products...this way when you are ready to be gluten-free you will not be overwhelmed. This is a learning process , put it into steps that you are sure of then move on to the next step . No one learns this overnight. This way it will be easier making the change. Many of us have or will go through the greiving process , which is all natural. After all you are giving up a large part of your life , mentally, & socialy & physcially as well...
Gluten free is not a diet but a lifestyle for me....
hth
blessings

mamaw



My 2 cents worth since I'm new here :) I didn't mean to go gluten free but through a food experiment I stopped eating bread and pasta and felt better the first day!!! Everything was good, stomach rumbles, bloating, bowels....all great! I even cheated on ocassion with pizza and desserts (1-2x a week). Everything was great for a month....then I had barley and got really messed up again and can't quite recover. So I agree, do it 100% because I think my stomach became MUCH more sensitive to gluten as I was getting off of it.
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#5 happygirl

 
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Posted 29 May 2009 - 06:24 PM

Which Celiac tests did your doctor run?
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#6 mattathayde

 
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Posted 29 May 2009 - 07:54 PM

i will argue with the statement that you need to be 100% gluten-free to see results at fist, you will probably see results even a lot of results. i know i sure did and i am celiac. given you will not be as good compared to being 100% gluten-free. i will agree though that as you cut out gluten (if you have an issue with it) you will have more and more of a reaction as you have been free of it when you have any (some are more sensitive but eating a baked good will always result in noticed issues for celiacs)

if you are not celiac and just gluten sensitive being super careful is honestly not as important over all.

that being said with your symptoms i would think you might be celiac still (the blood tests are not 100%) but when it comes down to it if changing your diet makes your feel better then you should do it.

it is easier to just go 100% gluten-free and dont even try to substitute gluten-free versions, just cut those foods out for a while then add the gluten-free versions back in later, you will appreciate them more, use them as more of a treat, and not spend boat loads of money on stuff

-matt
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#7 meanmachine22

 
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Posted 01 June 2009 - 09:34 AM

Thanks for your thoughts, everyone!

I know this sounds bad, but I don't really know the exact details of the bloodwork. My doctor just said that they were "very negative", so it's unlikely that I would have the disease, but that it didn't rule out a sensitivity or allergy.

I do plan on not stocking up on gluten-free substitutes of various foods yet. Out of curiosity, however, I did pick up some Pamela's chocolate chip cookies the other day, and they were mighty delicious!!
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#8 mattathayde

 
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Posted 01 June 2009 - 09:57 AM

Thanks for your thoughts, everyone!

I know this sounds bad, but I don't really know the exact details of the bloodwork. My doctor just said that they were "very negative", so it's unlikely that I would have the disease, but that it didn't rule out a sensitivity or allergy.

I do plan on not stocking up on gluten-free substitutes of various foods yet. Out of curiosity, however, I did pick up some Pamela's chocolate chip cookies the other day, and they were mighty delicious!!

a gluten sensitivity can be just as bad (at leas in how you feel) as celiac but like you said the blood tests dont show for sensitivity. given the sensitivity doesnt cause all the issues in the immune system its not as bad but you can still have a lot of issues depending on your reactions to gluten

-matt
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#9 ravenwoodglass

 
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Posted 01 June 2009 - 10:17 AM

a gluten sensitivity can be just as bad (at leas in how you feel) as celiac but like you said the blood tests dont show for sensitivity. given the sensitivity doesnt cause all the issues in the immune system its not as bad but you can still have a lot of issues depending on your reactions to gluten

-matt


Thismay be true for some but research into celiac and guten sensitivity has a long way to go. I was firmly diagnosed as celiac even though blood testing did not show positive for me. It doesn't for up to 30% of us. I had gene testing done 5 years after diagnois when my blood and biopsy proven celiac daughter was told she couldn't be celiac because she didn't have the genes. I had severe autoimmune impact but if we just went off my gene panels I would be considered 'just' gluten sensitive. I react to even the tiniest amount of gluten and those reactions are severe and last for up to 3 weeks.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#10 meanmachine22

 
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Posted 01 June 2009 - 10:37 AM

You know, I'm starting to wonder if maybe a second opinion would be the way to go. The more I read, the more I'm surprised that I tested negative for celiac disease. I have many other problems that I've suffered from for a long time that many celiac disease sufferers seem to be affected by. I've never been skinny though. I've hovered at a little below or a little above the max for my suggested healthy weight range, and really have to work at not being overweight. I know that people of any size or body shape can have celiac disease, but I understand that it's common for people to be skinny.
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#11 mattathayde

 
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Posted 01 June 2009 - 11:07 AM

You know, I'm starting to wonder if maybe a second opinion would be the way to go. The more I read, the more I'm surprised that I tested negative for celiac disease. I have many other problems that I've suffered from for a long time that many celiac disease sufferers seem to be affected by. I've never been skinny though. I've hovered at a little below or a little above the max for my suggested healthy weight range, and really have to work at not being overweight. I know that people of any size or body shape can have celiac disease, but I understand that it's common for people to be skinny.

i seemed to fluctuate, i was never under weight but i was skinny some times when i was younger and some times i was chubby, i gained a lot of weight senior year of HS but lost it real fast when i went gluten-free.

did you get the biopsy? that is a more exact science supposedly

-matt
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#12 meanmachine22

 
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Posted 01 June 2009 - 12:02 PM

did you get the biopsy? that is a more exact science supposedly


I just had the blood test. She (my doctor) said that because my blood test results were "so negative" for celiac, she didn't feel that any further testing was necessary, but felt that my symptoms might diminish somewhat with a gluten-free diet.
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#13 ang1e0251

 
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Posted 01 June 2009 - 01:11 PM

First, I would ask for a copy of my bloodwork to be sent to me. You can post the results here and someone who is knowledgable can interpret it for you. I have read many cases where the bloodwork was incomplete or loosely interpreted. Some folks just test negative on the bloodwork.

If you don't plan to test through endoscopy, just plunge into the diet 100% when you're ready to heal. It's a hard enough adjustment, doing it partway would have been a huge mental challenge for me. I would choose all the way or nothing for myself.
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#14 samcarter

 
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Posted 01 June 2009 - 04:05 PM

You know, I'm starting to wonder if maybe a second opinion would be the way to go. The more I read, the more I'm surprised that I tested negative for celiac disease. I have many other problems that I've suffered from for a long time that many celiac disease sufferers seem to be affected by. I've never been skinny though. I've hovered at a little below or a little above the max for my suggested healthy weight range, and really have to work at not being overweight. I know that people of any size or body shape can have celiac disease, but I understand that it's common for people to be skinny.


I have always been average or a bit overweight. My doctor only did the EMA blood test, as he said it was the "most specific" for celiac. It came back negative, but I have since read that up to 20% of celiacs can have a negative EMA--they are called "seronegative". If your doctor only did the EMA, and it was negative, she hasn't done the entire blood panel.

While you are still on gluten, I would seek a second opinion IF a medical diagnosis is important to you. Even though my test was negative, I had such a positive response to the gluten free diet, that I consider myself celiac. Looking back, i probably had ataxia as a child and teen (extreme clumsiness, horrible coordination), not to mention depression, headaches, stomach problems (I was tested for ulcers when I was nine!). I thought about getting a second opinion, but prefer to not have a "pre-existing condition" in my records, should I need to switch health insurance.
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Negative EMA test 8/08
Gluten free 8/08
Positive response to dietary change
Dairy free 3/09
Citrus free 5/09
Allergies: bananas, apples, green beans, mold.

#15 mattathayde

 
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Posted 01 June 2009 - 04:52 PM

I have always been average or a bit overweight. My doctor only did the EMA blood test, as he said it was the "most specific" for celiac. It came back negative, but I have since read that up to 20% of celiacs can have a negative EMA--they are called "seronegative". If your doctor only did the EMA, and it was negative, she hasn't done the entire blood panel.

While you are still on gluten, I would seek a second opinion IF a medical diagnosis is important to you. Even though my test was negative, I had such a positive response to the gluten free diet, that I consider myself celiac. Looking back, i probably had ataxia as a child and teen (extreme clumsiness, horrible coordination), not to mention depression, headaches, stomach problems (I was tested for ulcers when I was nine!). I thought about getting a second opinion, but prefer to not have a "pre-existing condition" in my records, should I need to switch health insurance.

the only issue with not having an official DX is that you need NEED NEED to have your doc put in your file you need to be on gluten-free diet, i still need to get mine to do so since i also do not have an official Dx

-matt
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