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

Poll: How Were You Diagnosed? (Or Were You?)

flutterby

  

67 members have voted

You do not have permission to vote in this poll, or see the poll results. Please sign in or register to vote in this poll.

Recommended Posts

flutterby Apprentice
flutterby
Posted

With so much talk about the big Diagnosis, I am curious what category people fall under here on the forums! Or, what category do your family members fall under?

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

Celiac.com Sponsor (A8-M):


cassP Contributor
cassP
Posted

i dont feel like any of the choices in the 1st question fit me.... ???

i self diagnosed myself with Celiac via: reaction to diet, positive Endomysial Antibody, and Genetic test.

then 2 weeks after that, i got DH.

then my Gi agreed with my self diagnosis.

no biopsy

wheeleezdryver Community Regular
wheeleezdryver
Posted

i am self- diagnosed.

i didn't know how to answer the 2nd question. i don't know if i have gluten intolerances or celiac (if i have celiac, it's not the classic sypmtoms, and probably not to the point it would show up on tests... that is to say, even if I wanted to try attempting to convince my dr to do the tests). i put that i'm a medical mystery... mainly because a dr (that had just graduated & was doing their residency) has said that of me before (which was kind of funny to me.... i came in complaining of the exact same Sleep Apnea symptoms as i had the year before when they 1st dx'd me w/ that condition... I *knew* i just neede my air pressure raised (why they could look at my info from the year before is beyond me. esp since i saw the same gal both times)...but yet they/ she had me do all the blood tests and stuff again (this was when she said 'you're just a medical mystery), which of course found nothing, before sending me for another sleep study... and of course, my symptoms resolved once my air pressure was raised... plus, for both the Sleep Apnea & the Gluten intolerance/ Celiac, i don't have the typical symptoms... so why not say i'm a medical mystery, 'cause to the Dr.s/ residents at the clinic i go to, i probably would be, just because i don't exhibit the classical symptoms for two of the conditions that i have...

T.H. Community Regular
T.H.
Posted

I was diagnosed by a blood test and biopsy, but like CassP, I consider myself self-diagnosed, doctor confirmed...although I was more self-checking-to-see-if-this-could-be-a-problem. I'd been sick for over 2 decades, celiac disease was never even considered by my doctors, even with my family history.

I'm the one who ended up asking for the tests, not them, and so I don't consider them responsible for my diagnosis.

Cypressmyst Explorer
Cypressmyst
Posted

I had no choice but to put a mystery to medical science. My finger made me click the button!!!

I like being mysterious... :ph34r:

Don't know if I have Celiac but I do have other gluten induced auto-immune disorders and I feel like a new person off of that junk! O_o

I am self-diagnosed. 23 years of doctors couldn't do what the power of a bit of time on the good ol' internet could do. B)

flutterby Apprentice
flutterby
Posted
  • Author

i dont feel like any of the choices in the 1st question fit me.... ???

i self diagnosed myself with Celiac via: reaction to diet, positive Endomysial Antibody, and Genetic test.

then 2 weeks after that, i got DH.

then my Gi agreed with my self diagnosis.

no biopsy

You know, I was thinking about putting a genetic test AND blood or biopsy option, but they only let us have so many. This is one thing I have noticed ... we are all so different! I feel very fortunate that I have had doctors that listened to me, possibly because they were at a loss for what to do.

flutterby Apprentice
flutterby
Posted
  • Author

I was diagnosed by a blood test and biopsy, but like CassP, I consider myself self-diagnosed, doctor confirmed...although I was more self-checking-to-see-if-this-could-be-a-problem. I'd been sick for over 2 decades, celiac disease was never even considered by my doctors, even with my family history.

I'm the one who ended up asking for the tests, not them, and so I don't consider them responsible for my diagnosis.

Thanks for sharing Shauna, and everyone else! This is one of the things that I was hoping to find out. It's an obvious problem that doctors don't know to look, or won't listen. With 1/133 people having Celiac, you would think it would be the FIRST THING they'd check.

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

Celiac.com Sponsor (A8-M):


cassP Contributor
cassP
Posted

i don't have the typical symptoms... so why not say i'm a medical mystery, 'cause to the Dr.s/ residents at the clinic i go to, i probably would be, just because i don't exhibit the classical symptoms for two of the conditions that i have...

hey- that's why blood tests are a good idea- because so many Celiacs are asymptomatic. yet they can be inconclusive especially if you're gluten-free.

Dang... add sleep apnea to my Dad's long list of suspicious symptoms... i continue to urge him to get tested.. and he hasnt :angry:

i-geek Rookie
i-geek
Posted

I had to self-diagnose. My doctor was convinced that I was simply under stress since I'm a student and couldn't possibly have celiac disease since "it's so rare!" and thus ran only one celiac test from the panel (TTG IgA). That came up negative, but 1) we don't know if I produce normal amounts of IgA or not since she didn't test for total IgA and 2) I was already on a very low gluten diet since that was the only way to make the headaches stop. She refused to do any more testing at that point and referred me to a nutritionist for an elimination diet, then told me to eat more dairy for calcium (after I'd already explained to her that even small amounts of it made me ill even with lactase supplements).

Needless to say, I put myself on the gluten-free diet, could actually feel my gut healing over several months and can now digest dairy along with a lot of other foods that previously gave me trouble. Considering that there's a strong prevalence of autoimmune disease on both sides of the family and that it often manifests in the early 30s (I was 31 when I went full-blown symptomatic 14 months ago) I believe that I do in fact have celiac disease and describe myself as such.

Mama Melissa Enthusiast
Mama Melissa
Posted

i-geek can i ask how you felt your stomach heal???

enolah Rookie
enolah
Posted

I couldn't vote very well either--in my case for my daughter's diagnosis.

She had a DQ2 heterozygote genetic test plus all the symptoms of celiac along with abnormal fecal fat tests. Nonetheless her biopsy was normal, so she was diagnosed as possibly gluten intolerant based on her partial response to a gluten-free/dairy free diet. Nobody bothered to repeat her blood test (anti-endomysial antibody and total IgA) which were normal 2 years ago.

Lily127 Rookie
Lily127
Posted

I got an Enterolabs stool test that came back slightly above normal which they said meant no more gluten. I had biopsies that were negative and blood was negative but when I took gluten out of my diet my stomach improved. My triglycerides are normal now as well for the first time in 12 years. I can't believe it

cahill Collaborator
cahill
Posted

I had no choice but to put a mystery to medical science. My finger made me click the button!!!

:lol: I also had to ,just had to ,click on the mystery to medical science button :lol: after 40 some years of illness I was tested only because my daughter tested positive for celiacs ,,,even a year or so after my diagnoses I still feel like a MYSTERY TO MEDICAL SCIENCE :P

anabananakins Explorer
anabananakins
Posted

I voted "by myself (elimination diet) - tests were negative" . But I wanted to add that my doctor supported me going gluten free as she she said she'd seen a lot of patients see improvement. She encouraged a grain free, dairy free diet but I haven't managed that yet :-)

sb2178 Enthusiast
sb2178
Posted

Yeah, not quite enough options.

-negative biopsy

-mixed bloodwork results

-genetics pending

-positive response to diet and awful, horrible response to a two meal gluten challenge

Medial record states non-celiac gluten sensitivity. If the genetics come back positive, I'm going to start calling it celiac, as in latent or imperfect biopsy.

Geri02 Newbie
Geri02
Posted

i am self- diagnosed.

i didn't know how to answer the 2nd question. i don't know if i have gluten intolerances or celiac (if i have celiac, it's not the classic sypmtoms, and probably not to the point it would show up on tests... that is to say, even if I wanted to try attempting to convince my dr to do the tests). i put that i'm a medical mystery... mainly because a dr (that had just graduated & was doing their residency) has said that of me before (which was kind of funny to me.... i came in complaining of the exact same Sleep Apnea symptoms as i had the year before when they 1st dx'd me w/ that condition... I *knew* i just neede my air pressure raised (why they could look at my info from the year before is beyond me. esp since i saw the same gal both times)...but yet they/ she had me do all the blood tests and stuff again (this was when she said 'you're just a medical mystery), which of course found nothing, before sending me for another sleep study... and of course, my symptoms resolved once my air pressure was raised... plus, for both the Sleep Apnea & the Gluten intolerance/ Celiac, i don't have the typical symptoms... so why not say i'm a medical mystery, 'cause to the Dr.s/ residents at the clinic i go to, i probably would be, just because i don't exhibit the classical symptoms for two of the conditions that i have...

I am also mostly self diagnosed. I never considered myself to have celiac. But after being gluten free since August 2010 and a positive IgG test I react to cross contamination with acne type stuff on my face, bloating, constipation, yellow colored BMs, joint pain, headaches. So I'm guessing that I might just be a celiac. I went to a family wedding today and had only a bottle of water. I guess time will tell. I'm not willing to have a biopsy since I first went to a GI specialist and he blew it off as IBS.
cap6 Enthusiast
cap6
Posted

I voted by dr although all my tests were negative. I was so darn sick that I really did stop eating - it just hurt so much - and lost 30 lbs in 2 months time. Was living on a bite of soup, rice or chicken (with a tad of cream of chicken soup over the top) through the day so of course all the numerous blood tests came back negative. All the symptoms were there so dr put me gluten free and within a week I was doing better. Not enough gluten to show on any tests and just enough to still make me sick.

Although my Mom is gone now as we look back we honestly believe that she was also Celiac. All of her symptoms and other related diseases just point to it. Also I believe she had the DH. Her elbow/knee rashes would just never clear. Now I worry about my kids..........

flutterby Apprentice
flutterby
Posted
  • Author

I voted by dr although all my tests were negative. I was so darn sick that I really did stop eating - it just hurt so much - and lost 30 lbs in 2 months time. Was living on a bite of soup, rice or chicken (with a tad of cream of chicken soup over the top) through the day so of course all the numerous blood tests came back negative. All the symptoms were there so dr put me gluten free and within a week I was doing better. Not enough gluten to show on any tests and just enough to still make me sick.

That's exactly what I went through! My doctor was at a loss, and either didn't know to test or thought that it wasn't necesary since I improved on the diet. Two years later I am seeing a specialist, who wants to test and make sure and rule out anything else. But I absolutely failed trying to introduce gluten into my diet again, so that's as much proof as I need.

cap6 Enthusiast
cap6
Posted

I was considering doing the gluten challenge so that I could get the biopsy and have an absolute answer but my partner says no. It's just not worth the time it takes to eat the gluten, have enough in your system, be so sick and then the months it takes to get well again. Not worth it. An official diagnosis just isn't that important.

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. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    3. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    5. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,872
    • Most Online (within 30 mins)
      7,748
    Koyanna
    Newest Member
    Koyanna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.