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. - xxnonamexx posted a topic in Related Issues & Disorders
      0

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

    2. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    3. - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    4. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    5. - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      34

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,316
    • Most Online (within 30 mins)
      7,748

    RickT
    Newest Member
    RickT
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • xxnonamexx
      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang of it and more aware you realize how many places are gluten-free and contamination free practices etc. One thing I have read is how soy is like gluten. How would one know if soy affects you? I have eaten gluten free hershey reeses that say gluten free etc some other snacks say gluten free but contain soy and I dont get sick or soy yogurt no issues. Is there adifference in soys?
    • knitty kitty
      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
    • knitty kitty
      Vitamin and mineral deficiencies can make TMJ worse.  Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain.  Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease.  It's important to eat healthy nutrient dense diets like the Autoimmune Protocol Diet, a Paleo diet that has similarities to the Mediterranean diet mentioned in one of the studies.   Is there a link between diet and painful temporomandibular disorders? A cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC12442269/   Nutritional Strategies for Chronic Craniofacial Pain and Temporomandibular Disorders: Current Clinical and Preclinical Insights https://pmc.ncbi.nlm.nih.gov/articles/PMC11397166/   Serum nutrient deficiencies in the patient with complex temporomandibular joint problems https://pmc.ncbi.nlm.nih.gov/articles/PMC2446412/  
×
×
  • 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.