• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

It's Decided, I Don't Need A Dx To Go Gluten Free
0

Rate this topic

17 posts in this topic

Recommended Posts

Well, I have been gluten free over a week now and have been feeling better every day.

My hubby was skeptical at first when I went gluten free after my blood work was negative,

but now he is amazed at the difference in both how I feel and my energy level...

All I knew is that my stomach hurt and I got constipated and bloated when I ate wheat products...

And Celiac runs in my family as well as a TON of autoimmune disorders....

Since going gluten free I no longer have gas, stomach pain, bloating, or constipation...

The results were remarkable!

My question is this...how many of you have gone gluten-free without a "formal" diagnosis?

Sometimes I struggle with the need to "know" and other times I just feel that what

is needed is to build up my own sense of personal confidence in what my body was trying to tell me!

Thanx...

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


I would argue that you do "know".

If you touched poison ivy and got a rash, would you need a doctor to touch you again, see the rash, and tell you that you react to poison ivy?

If you ate a mushroom, then threw up, would you need a doctor to watch you throw up again before you believed it was real?

Listen to your body.

Share this post


Link to post
Share on other sites

what jestgar said!

we learn from our own empiric evidence every day. and we use it. this is no different.

(for the record, I had 'inconclusive' blood results, no endoscopy, and positive dietary results. I have been strictly gluten free - baring a few accidents - for over six years.)

Share this post


Link to post
Share on other sites

Thanks Folks...You are totally right...I think part of my struggle was just "trusting and listening to my own body" and believing it and what it tells me and also knowing and believing that, although we might use the medical profession when we need them...the ultimate proof is how we feel...and that we can make decisions regarding our health ourselves, and use the medical profession as a part of our own health care in addition to own self care...Its a learning curve...and I find that just perhaps I am learning some personal self confidence along with going Gluten Free! B)

Share this post


Link to post
Share on other sites
what jestgar said!

we learn from our own empiric evidence every day. and we use it. this is no different.

(for the record, I had 'inconclusive' blood results, no endoscopy, and positive dietary results. I have been strictly gluten free - baring a few accidents - for over six years.)

Thanks t-berry...Like I said before...I am in a learning curve...sometimes I feel confident and other times I don't ...

Having support and feed back in this forum is invaluable...Thanxs

Share this post


Link to post
Share on other sites
Ads by Google:


I agree. I knew, didnt want to believe it, but knew somewhere inside. Luckily for me my Dr advocates the Blood Type diet and told me to avoid gluten. I realised when I did that all my symptoms were celiac. when he saw me 1month after beginning the diet, and saw my improvement he dx'd me without tests he was so convinced! Ive been gluten free since and have never felt better!

Share this post


Link to post
Share on other sites

I hadn't ingested gluten for a month before my bloodwork, so of course it showed up negative. I didn't know but the Doc should have. Then, I was told to eat one piece of bread a day for 3 weeks to prep for the endo. That was not enough. He biopsied one spot and declared me not celiac. Of course, the fact that I felt great off gluten and was sick as a dog after 3 weeks didn't faze him. I've been gluten free for 9 months and getting better everyday. And, I don't give a darn what the medical professionals say. My body tells me different, and I think yours is, too. Make the decision that fits your life.

Susan

Share this post


Link to post
Share on other sites


Ads by Google:


I hadn't ingested gluten for a month before my bloodwork, so of course it showed up negative. I didn't know but the Doc should have. Then, I was told to eat one piece of bread a day for 3 weeks to prep for the endo. That was not enough. He biopsied one spot and declared me not celiac. Of course, the fact that I felt great off gluten and was sick as a dog after 3 weeks didn't faze him. I've been gluten free for 9 months and getting better everyday. And, I don't give a darn what the medical professionals say. My body tells me different, and I think yours is, too. Make the decision that fits your life.

Susan

Yeah...I think I just had to get over the idea that medical professionals know best.....which is silly because most Dr.'s are so rushed today, they don't hear half of what you tell them anyway...they stick to protocol and test results and have lost the fine art of listening to their patients..sad really...but I am moving on Gluten Free and healthier than before...

Share this post


Link to post
Share on other sites

I have not officially been diagnosed with celiac disease. I began a gluten free, casien free and finally soy free diet with encouragement from my Dr. to combat my RA.

The results have been wonderful. Dr. Roy nis my 3rd Dr. for my RA and the only one to treat via food rather than prescriptions and my discomfort is minimal the majority of the time. My disease no longer controls me, I control it and my family is much happier with a mom who can play without fear of icky side effects, and no longer need a cane to help myself bear the weight of standing.

Self diagnosis is very effective and should not be discounted. You know when you are right, your body makes it very clear. ;)

Share this post


Link to post
Share on other sites

I began the gluten free diet to try to combat my RA also, but following internet research and not on the advice of my Dr., who does not believe there is any relationship between celiac and gluten and other autoimmune diseases. Whilst it did not help my RA :( , it did wonders for my bloating and gas and belching. My new RA doc, when I told her I was gluten free, said "Pity, it is too late for testing." Much more open-minded. So no doctor ever tested or suggested that I be tested.

Share this post


Link to post
Share on other sites


Ads by Google:


I tested negative four, count 'em four times for Celiac: all negative. I had one blood test, one Celiac blood panel, genetic testing, and an endoscopy with biopsy. This was all during the time I was consuming wheat, though not very much of it. I totally went through the exact same thing you did. Eventually I just learned to let it go and I think that's exactly what you'll do. It will just take some time. But just know, you are not alone!

Share this post


Link to post
Share on other sites

if being gluten free without a diagnosis helps you feel better and more healthy, then I say...who needs it!!! I've been diagnosed but back then I didn't know anything about going gluten free...If it were happening today and I tried it on my own, I'd save the Dr's bills and do what made me stop getting sick!!

Share this post


Link to post
Share on other sites

I am gluten-free and without dx. My financial circumstances didn't allow testing so I just went for it. I probably saved myself months of testing and sickness. I've never looked back or doubted my dx. My body told me clearly what I could tolerate and what I couldn't. I won't say I'll never go to a dr again but now I do my own research and discuss it with the dr. I feel I know my own body better than anyone and I am much more in tune with it than ever.

Share this post


Link to post
Share on other sites
Well, I have been gluten free over a week now and have been feeling better every day.

My hubby was skeptical at first when I went gluten free after my blood work was negative,

but now he is amazed at the difference in both how I feel and my energy level...

All I knew is that my stomach hurt and I got constipated and bloated when I ate wheat products...

And Celiac runs in my family as well as a TON of autoimmune disorders....

Since going gluten free I no longer have gas, stomach pain, bloating, or constipation...

The results were remarkable!

My question is this...how many of you have gone gluten-free without a "formal" diagnosis?

Sometimes I struggle with the need to "know" and other times I just feel that what

is needed is to build up my own sense of personal confidence in what my body was trying to tell me!

Thanx...

wow, I feel just like you do! I went gluten free after my MD told me that she suspected Celiac. My bloodwork was negative, and I was pretty gluten-free for the week and a half before the test, so it could have been skewed. Now that Ive tried the diet and had my bad digestion go away, and FINALLY gained some muscle mass (!!), I feel that I may have tested positive for Celiac if I was eating gluten before the test.

Anyway, my mom tells me all the time that all the diagnosis I need is my own experience. I asked her if I should go get re-tested and she told me (and these are her words!) ''HELLO!!!! Do you really need a doctor to tell you what you already know??''

For me, I have a need-to-know type personality, but honestly, with every day that goes by, I think... oh Jeez, why bother with it if you know you feel better not eating something.

CONGRATULATIONS in figuring out what helps you feel better. Though gluten free is challenging, feeling like a million bucks is really worth it!

Share this post


Link to post
Share on other sites

I went gluten free without a definitive diagnosis. My blood test--my GP would only do the EMA test, which can be negative in up to 20% of celiacs--came back negative, but I already knew that avoiding gluten was helping.

It came down to, what am I going to believe, my own body or a lab test done by strangers, prone to human error anyway?

Share this post


Link to post
Share on other sites


Ads by Google:


I went gluten and dairy without getting tests etc. It was spurred on by the fact that I had been eating 'healthily', going to the gym 3 times a week and doing proper training, cycling and all in all looking after myself, but all the excess weight and generally feeling rubbish had not changed in a year. I got some interesting nutritional guidance from my friend and personal trainer and took it from there, cutting both food types out of my diet almost two weeks ago.

I feel fantastic and I haven't looked back since. I have lost weight and inches and it was the best (and cheapest) thing I could have done.

So, officially I don't know if I have celiac, but there is no way I'm going to go back onto the food to get tested! We know our bodies best.

Share this post


Link to post
Share on other sites
It was spurred on by the fact that I had been eating 'healthily', going to the gym 3 times a week and doing proper training, cycling and all in all looking after myself, but all the excess weight and generally feeling rubbish had not changed in a year.

Kristy, I could have written your post! For the past two years I have exercised daily, eaten "clean" with tons of whole grains, fruits, veggies, etc. without ANY improvement in how I feel and shedding this 10 pounds of squishy bloat. In fact, the healthier I ate (lots of whole wheat, sprouted grains, spelt, barley, etc.) the sicker and more bloated I became! I am amazed that after only a few days on the gluten-free diet I have lost almost 5 pounds; all of it is water and intracellular fluid. Almost overnight my belly has lost inches, cellulite is disappearing, I no longer have deep indentations in my ankles from my socks, and my wedding ring slides on and off easily.

I simply cannot believe how much better I feel. Like I'm walking around on air instead of dragging a sluggish carcass around! My husband asked me if I would miss things like pizza, bagels and fresh bread, but the thought of eating that makes me almost ill. I would NEVER go back to feeling the way I felt before.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,130
    • Total Posts
      939,826
  • Member Statistics

    • Total Members
      66,110
    • Most Online
      3,093

    Newest Member
    DiDi_Brown
    Joined
  • Popular Now

  • Topics

  • Posts

    • 6 months for me stuff was still iffy. I was having bad days good days wtf days. Seemed like ANY change and my body threw a tantrum like a little kid. Yeah sleep patterns lol. I STILL CAN not change them I HAVE to go to bed at a certain time and WAKE at a certain time (9pm-4am)or my cycle goes all out of wack (also take a mid afternoon nap) , the entire day becomes ruined. Meals are the same way. There is this like 30-60mins window if I miss this shot my body goes all kinds of wonky. Mostly it become anemic and my got shuts down and constipation sets in. Always have to have hot fluids or this happens also.....no more cold drinks lol.

      EVEN if your levels are fine, supplementing is something many of us HAVE to do. For me I do not feel "Normal" unless I take my B-vitamins etc. Heck if i miss my magnesium supplement I block up, stop stomach emptying, get cramps, and generally vomit after day 2 if I eat anything. Supplementing is the new "Normal" for me.

      Still to this day food diary shows ups and downs with certain foods, I can not eat many foods, and others HAVE to be prepared in a certain way. heck up until recently I assumed it was a histamine issue or mast cell. Then I found some high histamine foods that should did not bother me go figure, then learned of something called Lectins and my prep methods that work with foods.....corresponds to lowering lectin content.....yeah SO I might have solved that mystery but am experimenting with it still.

      Health wise I am now doing much better and after 4 years found that "Perfect" diet plan for my body (at least for now). Putting on weight,  and trying to body build, still seems to yoyo with ups and days but less now.
    • Sorry to hear you are still suffering so. Have you had a vitamin and mineral panel done?  You should at least have your B12 levels checked. If they are not over 500 then try a subligual B12. That might help a bit.  I take a Stress B supplement but was able to drop the B12 after about 5 years. I know how hard it is to stick to a very regimented schedule as far as sleep goes. I suffer greatly if I don't retire and get up at the same time every day. I am trying to adjust my schedule a bit right now and paying for it. I have been going to sleep at 8pm and getting up at 4am now for a long time which cuts out any real social life.  The last few days I have stayed up till 9:30 or so and gotten up at 5:30 with a headache and generally feeling lousy.  I started getting up very early a few years ago so that I would still get enough sleep even if I have to be somewhere earlier than normal.  Is it possible to adjust your sleep schedule so that if needed you can be somewhere early and not have it mess up your system?  I try to wake at least 3 to 4 hours before I leave the house. It is amazing how much you can get done and how relaxed your beginning day is when you don't have to worry about having to get up early to accomodate an unusually early obligation. Please don't get discouraged. It can take a very long time to heal but for many of us we were ill for years before we finally got diagnosed. I hope you see more progress soon. Be patient with yourself as there are no instant fixes for us, unfortunately.
    • So, it's been 6 months gluten free, grain free, dairy free... Pretty much everything free, and progress has been pretty minimal. I will say that I definitely feel better than I did when I started, but I'm still nearly completely non-functional. I still feel like I'm not in reality, still can't focus, still pretty dizzy, panic attacks, exhausted, crippling lethargy, muscle twitches, you name it. As I've said before, I've got all my bases covered on CC, have my own pans, etc. Sometimes I do feel like I'm getting better, but then for little to no reason, such as mis-timing a meal, or waking up or going to bed an hour early or late, my body throws a tantrum and everything comes flooding back. The past couple weeks I've been trying a low carb, high fat "keto" diet, which seemed to be working after some of the induction stuff passed, but the other day I had to get up early, and since then I've been disoriented, derealized, and exhausted. It's impossible for me, or anyone, to be as consistent as my idiot body demands. I've had my vitamin/mineral levels checked, and thyroid checked, all coming back normal. I had an endoscopy done at the beginning of September, and the biopsy came back negative for celiac. All they found was some irritation in my stomach and slapped GERD on me. That said, the same thing happened to my aunt, who is celiac. I don't know how she eventually found out, but if it means doing a gluten challenge, I don't need an official diagnosis from some whitecoat moron. I'm out. I also don't know how many samples they took in my small intestine. From what I can gather, they only took one in there. Unsurprising, as I had a bad reaction to the anesthetic AND the oxygen, and when I called him asking about it he basically told me I was a crazy person. Another awful doctor experience. Anyway, ranting aside, I feel like I've tried nearly everything at this point. The only other thing I can think of to try is to select a red crystal and kneel down by a specific wall and wait for a magical tornado to come take me to the next chapter in my life. Who else here saw little progress in 6 months, and what the hell did you eventually do to fix things? I'm open to any and all suggestions besides 50 caliber aspirin, which is an option, but I'd rather not go that route.
    • My TTG-IGA level was 136 and I was diagnosed with celiac.   
    • "One Post by Allison on May 7th states "You can't say it is gluten free and then say oh well celiacs can't eat it. Make no sense......." Marketing vs. quality control  "The National Foundation for Celiac Awareness supports the availability of Domino's Gluten Free Crust, but cannot recommend the pizza for customers with celiac disease." Huh? 😮 Thanks Admin at least someone has our back.... Note to self- no dominos NFCA endorsed product ? check celiac.com before...  😉  
  • Upcoming Events