Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

homemaker

Recommended Posts

homemaker Enthusiast
homemaker
Posted

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...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted

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.

tarnalberry Community Regular
tarnalberry
Posted

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.)

homemaker Enthusiast
homemaker
Posted
  • Author

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)

homemaker Enthusiast
homemaker
Posted
  • Author
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

Mrs. Smith Explorer
Mrs. Smith
Posted

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!

ranger Enthusiast
ranger
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


homemaker Enthusiast
homemaker
Posted
  • Author
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...

Vollaire Newbie
Vollaire
Posted

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. ;)

mushroom Proficient
mushroom
Posted

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.

Gfresh404 Enthusiast
Gfresh404
Posted

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!

modiddly16 Enthusiast
modiddly16
Posted

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!!

ang1e0251 Contributor
ang1e0251
Posted

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.

haleym Contributor
haleym
Posted
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!

samcarter Contributor
samcarter
Posted

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?

KristyUK Newbie
KristyUK
Posted

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.

glutenmommy Rookie
glutenmommy
Posted
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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    3. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
    4. trents
      - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

      What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
    5. knitty kitty
      - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

      @EndlessSummer, You said you had an allergy to trees. People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits. Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease. Switching to a low histamine diet for a while can give your body time to rid itself of...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,691
    • Most Online (within 30 mins)
      7,748
    4Nic8ion
    Newest Member
    4Nic8ion
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Dizziness after eating green beans?

      By trents · Posted

      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.