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

I'm Kinda New But Never Saw This Kinda Survey--


Judyin Philly

Recommended Posts

Judyin Philly Enthusiast

It's the first time I've done one of these and celiac came up.

think the smelly stools gave it away.

ck out the web site.

Open Original Shared Link

Judy in Philly


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



Celiac.com Sponsor (A8-M):



Rusla Enthusiast

The top two that come up for me are Lactose Intolerant and Celiac Disease, which I have both.

Guest Viola

This is very interesting. Thank you for posting that ... Celiac popped right up of course ... now why can't the doctors be as efficient in the diagnosis? :o

mouse Enthusiast

I wish this had been around 2+ years ago, when I was googling everywhere, trying to find out why I was almost dead. At the end I could not google as I was bedridden. What a great help this might be for people who are trying to find some answers.

Judyin Philly Enthusiast

Yes--agree--

Isn't this amazing. When i was looking for over 19 years all that came up were IBS.

I think that the publicity that's going on is making the difference.

Now agree with above post--if the Dr's would only get on board.

My personal beef is ---'underweight'

There have been so many threads for us who have battled weight issues all our lives but they never thought of celiac disease because we were overweight or in my case obese...I remember when i couldn't say that word or 'god forbid' apply it to myself.

Judy

Rusla Enthusiast

Judy,

Count me in on this especially with the last 8 years and more like for the last 30 or more. Maybe we should get doctors to use this as so many seem to be devoid of common sense.

Guest Viola
Judy,

Count me in on this especially with the last 8 years and more like for the last 30 or more. Maybe we should get doctors to use this as so many seem to be devoid of common sense.

:lol: You're right Rusla, they wouldn't even need medical school, of course learning to read is a must. :lol:

Oh, I am not nice :o:rolleyes:


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

When I put in the symptoms accompanying abdominal pain, the top one that came up was celiac disease. I thought that was pretty good.

But when I put in the symptoms that come with diarrhea, crohn's disease came first, don't remember what was second, and celiac disease was third, because I didn't have 'weight loss'!

So, that again was wrong on their part, they don't know yet that unexplained weight gain is a common symptom of celiac disease. Somebody should tell them (maybe I will).

penguin Community Regular

Mine came up from diarrhea:

1. Celiac

2. Chron's

3. Bowel obstruction

weight loss was definitely NOT one of my symptoms...but still came up celiac! Where the hell was this three years ago!?!?! <_<

WGibs Apprentice

I didn't have weight loss either, but the few different symptom combos I tried (starting with abdominal pain/starting with D) both came up with Celiac as the top diagnosis. Wow!

VydorScope Proficient

I might cry... Lactose intorelnt followed by celiac disease. I never heard of celiac disease till some one mentioned it on another forum... had I tired this years ago.... ah well... :(

Judyin Philly Enthusiast

Ursula, I KNOW IT REALLY UPSETS ME TOO.

I posted earlier about the weight gain...

you go girl get um girl,,, :lol: not sure how to do that let me know if you figure it out.

Fat, and you don't fit in ...even in the celiac disease world.. :ph34r:

Judy

Judyin Philly Enthusiast

PLEASE DON'T CRY, VINCENT :(:ph34r:

When ever your sad just look at that precious little one of yours :lol:

Love the new picture. You made ME simile :)

Judy in Philly

Guest BERNESES

thanks for posting that- I tried to enter my symptoms as they first presented- I didn't have diarrhea- just foul black stools. I had weight loss but I also had nausea and vomiting. It didn't know what to do with me! It really wanted me to have Crohn's. and gallstones (which I do). Celiac came up 3rd tops. So, it just goes to show ya that it presents so differently in different people. Grrr!

Guest Viola

BUT ... even if Celiac Disease comes up third, you would think the doctors would test for it, if for no other reason, but to illiminate the possibility. If it's coming up first, second, third, or even forth .. it's a huge possibility with those symptoms. <_<

Judyin Philly Enthusiast

It didn't know what to do with me!

:ph34r: If this wasn't so sad--- it would be funny. :lol: Even the survey's don't know what to do with us who

fall' through the cracks' of pounding that round peg into the square hole... :huh:

So, it just goes to show ya that it presents so differently in different people. Grrr!

You got that right girlfriend. I was just amazed the word showed up under the possibilities as i honest to goodness never saw it come up when doing research for years. know it was because of my weight issure.

Judy in Philly

ravenwoodglass Mentor

When I did my symptoms even with the rash I got Celiac as the 4th possibility. I wonder why rashes and excess gas were not considered symptoms of celiac? At least it is coming up as a possibility.

jerseyangel Proficient

WOW--I just did it and Celiac came up #1! Let's see, it took doctors (and me) 20 years--this survey took about 30 seconds--something is so wrong with that <_<

VydorScope Proficient

To be fair, is everyone sure your not unintentionaly skweing your answers to fit celiac disease?

penguin Community Regular
To be fair, is everyone sure your not unintentionaly skweing your answers to fit celiac disease?

I can honestly say that I didn't skew mine, I listed my symptoms as abdominal pain, D, foul stools, and cramping. I didn't expect it to come up, actually. After all, if no dr's suspected it, why would it obviously show up on a symptom checker on the internet?

DH said after I told him about it, "now why don't doctors have something like that?"

Why not, indeed <_<

VydorScope Proficient
DH said after I told him about it, "now why don't doctors have something like that?"

Why not, indeed <_<

They are working on somthing like that using nueral nets. Last I heard it was still in the devolpment stage, one of my proffessors back in college was helping on the project.

jerseyangel Proficient

I didn't skew mine, either. I purposely listed exactly the same symptoms I presented my GP with a few months pre-dx, when my symptoms had gotten really scary. They were pretty easy to remember!

Rusla Enthusiast

Mine were not skewed. You would think that doctors would think; well we have these symptons and these diseases or problems go with these symptoms, why not test for all to be sure.

I am sorry, I was thinking logically again and we know that more than 80

% of the doctors are NOT logical.

Guest BERNESES
I am sorry, I was thinking logically again and we know that more than 80% of the doctors are NOT logical.

like Judy in Philly said about me, if this wasn't so sad, it would be funny! :unsure:

I was really lucky because my primary doctor listened to all my symptoms which were extremely random and really could have been anything from cancer to HIV. The minute I said, "Smelly farts that could kill someone" she said could be Celiac's. She was smart- she tested me and even though the test results didn't fit the "clinical profile" I did the research, went gluten-free anyway despite my GI's protests that it was a condemnation.

This really is a great tool. It would have been so much easier to just do the endoscopy first rather than scare the living daylights out of me by testing me for rare and exotic diseases but NOOOOO.....

And you know, not once during the whole year has anyone offered me a colonoscopy :lol: Not that I wanted one but it would have made sense. Oh well, Ii guess I should be relieved :ph34r:

Archived

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

  • 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. - Haugeabs replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      23

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - trents replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    3. - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

    4. - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,413
    • Most Online (within 30 mins)
      7,748

    EBeloved
    Newest Member
    EBeloved
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Haugeabs
      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil.  Gluten free but not certified gluten free. Soy free, GMO free.   
    • trents
      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even though celiac disease and gluten sensitivity are, technically speaking, not allergic responses, it would seem, nonetheless, appropriate to include "gluten" in that list for the present purpose. That would insure that food companies would be consistent with including this information in labeling. Best estimates are that 1% of the general population, many undiagnosed of course, have celiac disease and more than that are gluten sensitive."
    • Wheatwacked
    • Wheatwacked
      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
×
×
  • 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.