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. - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    4. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

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

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

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

    • Total Members
      133,356
    • Most Online (within 30 mins)
      7,748

    JAGAPG
    Newest Member
    JAGAPG
    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

    • Wheatwacked
      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.