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

Is Anyone Here Not Actually Diagnosed?

kalanfan

Recommended Posts

kalanfan Explorer
kalanfan
Posted

Hi im new and i was wondering if anyone here hasnt actually been diagnosed with celiacs.....ive been dealing with various stomach issues for as long as i can remember and ive tried so many things...ive been poked and proded,had all different meds thrown at me, ive tried eliminating dairy numerous times and went down to a basic plain diet with no flavour what so ever. At the end of all that i have the IBS diagnosis and im not happy with it. So i started to go gluten free a couple days ago. Even thought ive had a blood test that came back negative and ive also had an ultrasound and a colonoscopy that showed nothing(except a biopsy during the colonoscopy that came back that it was mildly inflamed but my gastro doctor said it was nothing). So this is where i am now.....my dad read that you can be gluten sensitive without having celiacs...so im going gluten free. Its been like 3 days and im already frustruated.....like why do they need to put wheat in SOY SAUCE!!! give me one good reason!!! so yeah thats my long explanation of my original question...lol

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

Celiac.com Sponsor (A8-M):


rinne Apprentice
rinne
Posted

I have had the blood test but it came back negative and I am waiting to have the scope but since early May I have been gluten free, other than accidental glutenings, so I am not expecting a positive diagnosis. I have a lifetime of digestion issues, my sister is a Celiac and I am getting better on a gluten free diet. That is good enough for me. I also fit the typical Celiac crisis at this time with an unexplained weight loss of 35 pounds in four months and since going gluten free my weight seems to have stabilized.

There is gluten free soy sauce but yah, they put wheat in everything. :(

Welcome to the forum, it is a great place with lots of wonderful people who are very well informed.

kalanfan Explorer
kalanfan
Posted
  • Author

im actually hoping to loss weight going gluten-free....i seem to eat a lot less now that there are less options...it also makes good for cutting out carbs.......

CarlaB Enthusiast
CarlaB
Posted
like why do they need to put wheat in SOY SAUCE!!! give me one good reason!!!

Maybe processing the wheat for the sauce is cheaper???? <_< Wheat free soy sauce is good, and the bonus is, it's SOY!! What I don't understand is why they don't call the other "wheat sauce" since wheat usually comes before soy on the label!

My testing came back negative, but I had been gluten-free for some time. I went to Enterolab and came back as gluten intolerant. So, technically I'm not diagnosed celiac. I have very severe symptoms, wasting, diarrhea, sharp stomach pain, joint pain, blisters on my scalp, bruising easily, low thyroid, off and on anemia, etc. My only diagnosis though, is gluten intolerance because by the time I was tested my intestines looked fine. Or maybe they never had the damage, but I wouldn't understand how that could be based on my symptoms!

So, yes, there are some here not diagnosed celiac.

lonewolf Collaborator
lonewolf
Posted

The closest thing to a diagnosis I have is an ELISA test done 10 years ago that showed a high reaction to wheat and gluten (among other foods). By the time I learned about Celiac Disease I had been wheat-free, with very little gluten, for so long that no test could possibly show anything. I did have a gene test done, which shows that I DON'T have either of the 2 main Celiac genes. I don't know what I "have", but I guess it doesn't matter since my health has improved a TON since going wheat-free and taken another huge leap forward going completely gluten-free. I never had the "classic" celiac symptoms like weight loss (darn!), but I have a lot of the other symptoms (thyroid issues, diagnosed with IBS, skin problems, dental enamel defects, etc.) that a lot of diagnosed Celiacs have. I don't think I'll ever really figure it out, but I'll never knowingly eat gluten again.

AndreaB Contributor
AndreaB
Posted

My family went through enterolab and didn't have any symptoms. Just going off of my allergy tests. 3 out of 4 of us that were tested came back with an active gluten intolerance and we found out that we each have 2 genes that either predispose to celiac or predispose to gluten sensitivity.

ianm Apprentice
ianm
Posted

No diagnosis for me and don't need one. It is so obvious that gluten is a problem for me.

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

Celiac.com Sponsor (A8-M):


ArtGirl Enthusiast
ArtGirl
Posted

I haven't been officially diagnosed. Ten years ago a food sensitivity test showed positive to gluten. I've just sent a sample off to Enterolab and should know something for certain in a few weeks. However, I'm not sure I really want an official diagnosis if it will be perceived by insurance companies as a pre-existing condition. I haven't had health insurance for over ten years so haven't relied on medical doctors for much of anything. I don't see my changing this now that I have health insurance (just got it). I'm not even sure I'll mention it to the doctor when I do finally get around to making an appointment.

ErraticBinxie Explorer
ErraticBinxie
Posted

I have never been diagnosed. But my mom was when I was little and I felt better without gluten. So I have been gluten-free most of my life. But it sucks because my doctor refuses to believe that celiac even exists. So I will go through my life without it on my medical records. Oh well.

rinne Apprentice
rinne
Posted

I'm sorry, I just realized that this was the teenagers only section, I am definitely not a teenager. So embarrassed, backing out the door.....please excuse.

Corkdarrr Enthusiast
Corkdarrr
Posted

My bloodwork came back negative yesterday, which was to be expected since I'd been off gluten for a few weeks prior to the test. Plus when I asked my doctor - don't I need to be actively eating gluten before this test? - he said no.

I was found to be gluten sensitive about six or seven years ago and I cut back and felt better (no debilitating pain). I've been hypothyroid for 12 years and suspect that I'm borderline anemic. I've had stomach issues for as long as I can remember and now the daily migraines have kicked in.

I don't know how much of this is related to gluten, but I know that I feel better when I'm actively avoiding it. I'm anxious to see how much more I will improve by continuing a gluten-free diet. I doubt I'll ever get a diagnosis - from what I understand there has to be significant damage or severe symptoms for a test to come back positive. Either way, I'm not going to go out and eat a dozen bagels and chase it down with a six pack just because I've not been officially diagnosed!

You're definately not alone and I'm glad you found this website - it has been a GREAT source of information and support for me so far!

wolfie Enthusiast
wolfie
Posted

I have not been officialy diagnosed with Celiac, but with gluten sensitivity. I went gluten-free before I saw the GI, who wanted to do an endoscopy, but was feeling so good that I decided not to go back to eating gluten as the end result was the same ~ a gluten-free diet. I did have positive bloodwork and a positive dietary response and that is good enough for me. My son was just diagnosed with Celiac, so it is probably very likely that I do have Celiac. I was diagnosed with IBS years ago and have pretty much felt like crap most of the 8 years or so. I think I just got used to feeling bad and accepted that as "normal".

wozzy Apprentice
wozzy
Posted

I wasn't actually diagnosed. My dad has it and my sister has it. I got a blood test that came back negative (I think, or else the doc didn't know how to read it...they said I'm really allergic to dust). I also wasn't eating much gluten at the time.

I didn't get anything else. I went to my dad's GI once, and he just told me to keep a food diary. I did that for a few days and felt like I was going to die, so I just stopped eating gluten. I felt better, though, and I get sick when I eat gluten...so I don't really need much more of a diagnosis than that.

rachael128 Newbie
rachael128
Posted

Hi.

I have only been gluten free for about 2 months but my mom has been gluten free for a couple of years, and i recently decided to go gluten free with her after being diagnosed with gluten sensitivity.

There's a lot of rly good gluten free food out there, there's Amy's pizza ( though if your off diary you can't have this), Whole Foods Sandwhich bread, and the Gluten Free Pantry mixes, i even found a gluten, dairy, yeast free Falafel mix by Orgran (which i had today and is rly good).

Good luck with the gluten free diet, and dont worry it gets easier. :)

  • 2 weeks later...
katrinamaria Explorer
katrinamaria
Posted

hey!

i don't have an "official celiac diagnosis" either. i pretty much self diagnosed after alot of research and trial & error. i talked to my dr. and she said that that was most likely what it is (or at least a gluten intolerance) and she said that since i don't have the "offical diagnosis" she can't put it in my "official records" which is ok i guess cause she said that helps in in the long run for insurance purposes but we know its there. so i wouldn't worry about it. if you makes you feel better, who cares what anyone else says!!

:) kms

  • 5 weeks later...
LonelyWolf307 Rookie
LonelyWolf307
Posted

I'm a self-diagnosed celiac too, I've had so many probes and tests done, and I'm sick of the idiot doctors prodding at me. I had never even heard of Celiac disease until they sent me to a gastroenterologist and they did a blood test for it, which came up negative, but when I went to study it a lot of the symptoms were remarkably similar to what I was experiencing. Going gluten free and having my symptoms improved was enough confirmation for me. Stupid doctors...

Speedy Newbie
Speedy
Posted

I Was Diagnosed when i was about 13 months old and that was about 18 years ago, i had all types of tests done, like thousands of blood tests, they put a camera down my mouth to get a peice of my esophogus (or how ever you spell it) and some other ones. They did more tests on me then they usually do to people cause i could of been born with some other disease which i totally cannot remember the name but i can describe it. Its where my lungs would give out more than likely by the time im 10, i would be on an oxygen tank my entire life. But i can think of the name.

  • 2 weeks later...
Confused in Iowa Rookie
Confused in Iowa
Posted
Hi im new and i was wondering if anyone here hasnt actually been diagnosed with celiacs.....ive been dealing with various stomach issues for as long as i can remember and ive tried so many things...ive been poked and proded,had all different meds thrown at me, ive tried eliminating dairy numerous times and went down to a basic plain diet with no flavour what so ever. At the end of all that i have the IBS diagnosis and im not happy with it. So i started to go gluten free a couple days ago. Even thought ive had a blood test that came back negative and ive also had an ultrasound and a colonoscopy that showed nothing(except a biopsy during the colonoscopy that came back that it was mildly inflamed but my gastro doctor said it was nothing). So this is where i am now.....my dad read that you can be gluten sensitive without having celiacs...so im going gluten free. Its been like 3 days and im already frustruated.....like why do they need to put wheat in SOY SAUCE!!! give me one good reason!!! so yeah thats my long explanation of my original question...lol

I agree on the wheat in soy sauce - my son is 11 and his favorite BBQ restaurant, who has fries that would be ok for him to eat cuz they are fried in a seperate fryer, but they put soy sauce on their ribs and of course they use Kikoman's which has wheat - so i've read on the bottle anyway! ugh! anyway, my son doesn't have any complications from celiacs..in fact we wouldn't even know he has the disease except he's also type 1 diabetic and has a yearly blood screening which came up positive for celiacs. so then we had the scope into the small intestine and that showed some "inflammation"..but the dr. said it was confirmed celiacs...so maybe your dr. should take a 2nd look or you should see another dr. It's frustrating..but good luck to you!!!!

Ricco Newbie
Ricco
Posted

Hey guys :D

I'm actually shocked that some people had to self-diagnose, and the docters didn't know for sure.

I got sick when I was 9, and after a couple visits at the docter I had to go to the hospital.

In the hospital I had a blood test, and a Biopt both positive for Celiac.

After reading this, I think I'm very lucky with the diagnose process.

(The Netherlands)

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. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      jmartes, Thank you for sharing more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is...
    2. Scott Adams
      - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    3. catsrlife
      - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady...
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from...
    5. Scott Adams
      0

      Gluten-Free Peanut Butter Cup Swirl Brownies

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,260
    • Most Online (within 30 mins)
      7,748
    sbr
    Newest Member
    sbr
    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

    • Mari
      Related issues

      By Mari · Posted

      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      Patiently Waiting to See Results

      By catsrlife · Posted

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Related issues

      By Mari · Posted

      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH 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.