HOW LONG DID IT TAKE YOU TO BE DIAGNOSED WITH CELIAC DISEASE ?

[Charliexxx]

What diagnoses did you receive prior to coeliac disease ? 
 

What impact did it have on your life ? 

[Elliemae7395]

For me it was several months. During covid it was difficult to get appointments with GI doctors. I had 2 visits to the ER because of vomiting and diarrhea. Even with referrals it was hard to get appointments. I was scheduled for 10 weeks. Then the office got shut down due to practioners coming down with covid. Then more waiting. Finally an appointment. Then several weeks wait to have colonoscopy and endoscopy. In the meantime I lost 36 pounds. All in all about 6 months. Lucky for me I had recently retired. I feel really bad for people doing this and having to work. It was frustrating that even though there was a suspicion of celiac the doctor insisted I keep to my normal diet then acted surprised when the lab diagnosed celiac.

 

 

[Scott Adams]

It's a complicated question for me. I'm positive for both DQ2 and DQ8, and after I finally got diagnosed I realized that some of the strange symptoms I had in my youth were likely related. Here is how I view my diagnosis:

• Age 0-20: Various symptoms like skin rashes, severe allergies to pollen, testing positive for many food allergies, including a strong allergy to wheat--and my allergist told me to rotate my diet an only eat wheat 1-2 times per week, but I didn't listen to him.
• Age 20-25: Severe symptoms of celiac disease kicked in after an illness that I thought was acute food poisoning, or possibly a virus. 

I started seeing doctors regularly and often from 20-25 yrs old, and was finally diagnosed after I requested to be tested for it. There were several misdiagnoses along the way, and my full story is here:

 

[Charliexxx]

  On 8/11/2023 at 11:36 PM, Scott Adams said:

It's a complicated question for me. I'm positive for both DQ2 and DQ8, and after I finally got diagnosed I realized that some of the strange symptoms I had in my youth were likely related. Here is how I view my diagnosis:

• Age 0-20: Various symptoms like skin rashes, severe allergies to pollen, testing positive for many food allergies, including a strong allergy to wheat--and my allergist told me to rotate my diet an only eat wheat 1-2 times per week, but I didn't listen to him.
• Age 20-25: Severe symptoms of celiac disease kicked in after an illness that I thought was acute food poisoning, or possibly a virus. 

I started seeing doctors regularly and often from 20-25 yrs old, and was finally diagnosed after I requested to be tested for it. There were several misdiagnoses along the way, and my full story is here:

 

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Thanks ever so much for your reply. I had read your adult story but unaware that you were symptomatic as a child. I had eczema as a child. I was affectionately known as ‘Hollow legs’ as I could eat and eat. When I stayed with my grandparents, I would look at my grandmother with big eyes and she’d know I’d want biscuits. She’d tease me and say it was ‘cupboard love’. I’d return back home complain of stomach pain and feeling sick. My mother would make me drink Andrew’s liver salt (it’s a bit like bicarbonate of soda). I’d be sick, feel much better and go to bed uncomplaining. 
When I went through puberty, it was quite an experience and my time of the month was like having 3 days of food poisoning. Aged 15, I developed migraines but never saw a doctor for them. I just put it down to having to wear glasses at that age. Then 18 I had to flu. I became tired all the time and lost my appetite. Thanks to COVID, people are aware of post-vital fatigue.
Aged 21, without any testing I was diagnosed with an eating disorder, many misdiagnoses. Finally, this year I was diagnosed with coeliac disease. So, I went and had coeliac tattooed on my stomach. I am in the U.K. where us weirdos spell it coeliac. So, my belly button is the O. And if any health professional wishes to take blood or do a blood pressure, I offer my right arm and it says Gluten Free. 
It has been a long, hard battle to be heard and it has had a major impact upon my life as no doubt many of this community know. That is why you excelled website is vital. I appreciate all your hard work which provides resources, information, updates and that in itself is a huge amount of work. 
Sending my best from over the Pond.

C 👍🏻 

[EmptyJars99]

I was late teens and my family suspected it since childhood as I would throw up after eating certain food and have the worse stomach pain. It wasn't far out the question as my great grandmother has it too none of her children inherited or their children. So it skipped three generations and got me how lucky :)! Anyway in my senior year of High School is when I really started getting sick, I would get pain after eating at Starbucks or just getting a breakfast sandwich at a fast food place the pain was unbearable I was popping Advil like it was candy. One night it was really bad and I couldn't stop throwing up, my chest was on fire, my mother took me to the ER (I was around 17 or 18 at the time) and the doctors had no clue they gave me  a GI cocktail and I stopped throwing up and the pain subsided a little. The doctor then referred me to a GI. The GI I had (still have) is a wonderful man, he listens and is patient, I told him what was going on he ran some test he first ran the blood test which came back negative for celiac disease that's when he scheduled an endoscopy. Came back positive what like a week or two later? I don't remember how long as it was almost 10 years ago but I finally had an answer. For about 6 months all I ate was plan white rice (which as of now I can no longer tolerate), as my stomach was still rather sore it felt like I was punched in the gut. I lost a lot of weight, but once my stomach began to heal I learned a lot about cooking. Only thing I'm grateful for with Celiac is that I learned to cook for myself and lost a bunch of weight.  Diagnosed in 2016  (I think, I'm sometimes off a year or two)

 

[Charliexxx]

10 years though ☹️ 

[Nick Cheruka]

Hi, it was very frustrating to get anyone to seem to believe in  me and what I was feeling mentally and physically when the onset of my symptoms began, they started in the early part of 2001 and it progressed very quickly! I believe stress from the loss of my Mother at that time triggered the onset of what eventually would be confirmed Celiacs Disease! It took numerous dr. visits where they said your blood looks fine and we can’t find anything to determine whats causing the issues! I felt like whatever dr. I went to back then acted like it was all just in my head and after wasting time and money and getting know where fast, at this point I was extremely ill and at times would miss work because of it! Not something I was known to do, I finally got recommended to a group of GI dr’s that took my case seriously as at that time I had lost a substantial amount of weight as well as muscle wasting! I was 165-170lbs the beginning of 2001 and by the fall of 2003 I weighed 135-140lbs and continuing to drop weight fast, by the time I got a concrete diagnosis by biopsy and this is after all the bloodwork, endoscopies and colonoscopies claiming they could find nothing wrong prior to me entering into this group of GI dr’s that seemed to be way ahead of everyone else I had previously seen and wasted $$$ and time on! They did bloodwork of their own and it came back showing suspected Celiacs, once they did the  endoscopy with biopsies  the results came back from the pathologist it was confirmed Celiacs Disease this was now may of 2005 and I was down to 117lbs! I took at total of approx 3-1/2-4yrs to get my diagnosis, but at least now I had an answer and it was never just in my head that I was sick, I had Celiacs! I’ve heard of other people getting lucky enough to get a diagnosis in much less time after my diagnosis but also have heard several that took over 10yrs to get diagnosed! So for me 3-1/2 to 4yrs but it seemed back then that it took forever!!! I’m back up to 150lbs now but have not been able to get back to the weight I was at of 165-170 even being gluten-free and working out! I just can’t seem to gain those last 15-20lbs back no matter how hard I try! 

[Charliexxx]

  On 8/24/2023 at 11:03 AM, Nick Cheruka said:

Hi, it was very frustrating to get anyone to seem to believe in  me and what I was feeling mentally and physically when the onset of my symptoms began, they started in the early part of 2001 and it progressed very quickly! I believe stress from the loss of my Mother at that time triggered the onset of what eventually would be confirmed Celiacs Disease! It took numerous dr. visits where they said your blood looks fine and we can’t find anything to determine whats causing the issues! I felt like whatever dr. I went to back then acted like it was all just in my head and after wasting time and money and getting know where fast, at this point I was extremely ill and at times would miss work because of it! Not something I was known to do, I finally got recommended to a group of GI dr’s that took my case seriously as at that time I had lost a substantial amount of weight as well as muscle wasting! I was 165-170lbs the beginning of 2001 and by the fall of 2003 I weighed 135-140lbs and continuing to drop weight fast, by the time I got a concrete diagnosis by biopsy and this is after all the bloodwork, endoscopies and colonoscopies claiming they could find nothing wrong prior to me entering into this group of GI dr’s that seemed to be way ahead of everyone else I had previously seen and wasted $$$ and time on! They did bloodwork of their own and it came back showing suspected Celiacs, once they did the  endoscopy with biopsies  the results came back from the pathologist it was confirmed Celiacs Disease this was now may of 2005 and I was down to 117lbs! I took at total of approx 3-1/2-4yrs to get my diagnosis, but at least now I had an answer and it was never just in my head that I was sick, I had Celiacs! I’ve heard of other people getting lucky enough to get a diagnosis in much less time after my diagnosis but also have heard several that took over 10yrs to get diagnosed! So for me 3-1/2 to 4yrs but it seemed back then that it took forever!!! I’m back up to 150lbs now but have not been able to get back to the weight I was at of 165-170 even being gluten-free and working out! I just can’t seem to gain those last 15-20lbs back no matter how hard I try! 

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I am so very sorry to read. You know you are and it is a daily toll on the body and mind. It impacts every aspect of your life from your daily living activities such as having the energy to wash, dress, make a hot drink for yourself, driving, getting actually to work, relationships as well and trying to follow a tv programme. 
I am sorry to read of your mother. Bereavement has a huge impact upon our health and wellbeing. When our emotions are raw, there’s so much to organise we tend to not want to eat. It’s a natural biological process when we are mourning the loss of a loved one. 
My weight really fluctuates I’m been extremely slim but then eating gluten, the more my body is starved of nutrients, I was starving and ate and ate. I had no energy to cook nutritious food so grabbed junk. The gastrointestinal tract is very long, so fats get absorbed in one place. So when doctors say you can’t have coeliac because you’re not underweight, they are very wrong indeed. Plus, inflammation causes obesity. 
anyway, I wish you all the best and thank you for sharing. 
Charlie 🤗 

[Nick Cheruka]

Thank you for your kind words Charlie🙂I wish you well in all aspects of life!

[Sobiha]

I still haven't had a proper diagnosis. Luckily with the help of Dr google and a good nutritionist I self diagnosed and went gluten free in April of this year. I am feeling better with each passing day I dont get pain and vomiting now unless I accidently ingest gluten and there are no more bouts if diarrhoea. I do sometimes get bloating and wind but even that is improving. For years I suffered from digestive issues and anaemia. I had bouts of diarrhoea sometimes lasting for a week and for a long time  I suffered occasional severe stomach pain after eating.  As time passed the pain grew worse and lasted longed, sometimes all night.  The episodes grew closer together and were accompanied with vomiting, regurgitation and sometimes stomach  bleeding. As far back as 2016 I was admitted to hospital with severe anaemia and needed two blood transfusions.  Drs have always blamed my symptoms on a hiatus hernia and treated me with omazaprole. Despite two emergency visits to the AE , numerous scans, two endoscopies, two colonoscopies i still have not had a proper diagnosis.  By April of this year I was so unwell that I couldn't eat without severe pain and vomiting. I was losing weight at an alarming rate. My GP had referred me for a hospital in February but said as he didn't suspect cancer he couldn't refer me for a more urgent appointment .  It is now August and I'm still waiting for an appointment. As I am gluten free now I don't think the hospital will be able to make an official diagnosis as it won't show in a blood test so I don't know if it's worth attending.  I think I have probably had this disease for a number of years.

[trents]

Welcome to the forum, Sobiha!

You cannot be tested for celiac disease after having started the gluten free diet. If you want to be tested you must go back to eating regular amounts of gluten for two months (two pieces of wheat bread daily or the gluten equivalent). This is called a "gluten challenge". For many of us it took 10+ years to get a correct diagnosis of celiac disease. It took 13 years in my case after the initial signs that I had the disease.

From your description of improved but ongoing symptoms, I suspect you have managed to cut back on gluten intake but have not yet completely eliminated from your diet. This might help:

 

[Cissy De]

  On 8/9/2023 at 6:48 AM, Charliexxx said:

What diagnoses did you receive prior to coeliac disease ? 
 

What impact did it have on your life ? 

Expand Quote  

Lactose intolerance. 
 

always having to know where there’s a bathroom… Made me not want to go out very often and it really changed my life becoming a celiac, gluten free individual

[Scott Adams]

I know the feeling...I had to commute to work and ride a subway in San Francisco and had various emergency bathrooms mapped out in my head for each stop. There are times when the cars broke down underground and caused up to an hour delay, which was quite horrifying when it happened. Luckily I managed to get through this time without anything terrible happening. 

[Charliexxx]

  On 8/24/2023 at 6:17 PM, Sobiha said:

I still haven't had a proper diagnosis. Luckily with the help of Dr google and a good nutritionist I self diagnosed and went gluten free in April of this year. I am feeling better with each passing day I dont get pain and vomiting now unless I accidently ingest gluten and there are no more bouts if diarrhoea. I do sometimes get bloating and wind but even that is improving. For years I suffered from digestive issues and anaemia. I had bouts of diarrhoea sometimes lasting for a week and for a long time  I suffered occasional severe stomach pain after eating.  As time passed the pain grew worse and lasted longed, sometimes all night.  The episodes grew closer together and were accompanied with vomiting, regurgitation and sometimes stomach  bleeding. As far back as 2016 I was admitted to hospital with severe anaemia and needed two blood transfusions.  Drs have always blamed my symptoms on a hiatus hernia and treated me with omazaprole. Despite two emergency visits to the AE , numerous scans, two endoscopies, two colonoscopies i still have not had a proper diagnosis.  By April of this year I was so unwell that I couldn't eat without severe pain and vomiting. I was losing weight at an alarming rate. My GP had referred me for a hospital in February but said as he didn't suspect cancer he couldn't refer me for a more urgent appointment .  It is now August and I'm still waiting for an appointment. As I am gluten free now I don't think the hospital will be able to make an official diagnosis as it won't show in a blood test so I don't know if it's worth attending.  I think I have probably had this disease for a number of years.

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 I am so sorry to read, everything that you have suffered. I wish you better health now that you are gluten free. 😘

[Charliexxx]

  On 9/8/2023 at 12:48 PM, Cissy De said:

Lactose intolerance. 
 

always having to know where there’s a bathroom… Made me not want to go out very often and it really changed my life becoming a celiac, gluten free individual

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 Oh Cissy, 

It has had major impacts on studying, careers, sporting abilities, relationships, financial, fertility, dental problems and just trying to be heard was extremely difficult. 
I was a quiet introverted girl when my grandmother took me to a doctor aged 21. They thought I had an eating disorder, so once that label was put on me my symptoms were dismissed as psychosomatic, stress, depression or hormones. 
I soldered on, lots of misdiagnoses from fibromyalgia to a conversion disorder of functional neurological disorder. 
Unfortunately, doctors do not see the person, know their life experiences, intelligence nor careers. I applied for my notes and am currently auditing them. Let us just say, I have put big crosses on at least 150 pages of the notes. 
The World Health Organisation’s International Classification of Diseases for Celiac Disease is K90.0.
As I told one doctor, my Software Engineer lecturer used to tell me off for falling asleep. That particular doctor could not get his computer to work, so teasing him, I said, ‘Press ALT, CONTROL & DELETE.’

Of course, I was a female programmer and I had to know all the data laws. An organisation will only ever be as strong as the information they hold. If it is not obtained, stored, transferred properly or if it is breached then there are very serious problems and consequences. I am sure you are aware of a certain former USA leader who falsified records. 😉😘