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People with Celiac disease, what is your "how I got diagnosed" story?

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Like the title says, I'd like to know what led you to finding out you had Celiac disease. For me, it happened while I was working at a call center. Everyday for lunch I would eat pizza (really really bad haha) and eventually I got so sick, I missed almost 2 weeks straight of work because I was too weak to get out of bed. My eyes had black rings underneath them, I got extremely skinny, Pale, headaches/migraines for hours...After going to the dr's back and forth for about a month, I was finally diagnosed and able to turn my life around.

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A quick summary, with a longer version here, is that my change from just having both DQ2 and DQ8 genetic markers for celiac disease (one from each parent) and no symptoms happened on a backpacking trip to Europe when I was around 18. I got what I believed was food poisoning, but could have been some sort of virus, and was super sick for 3-4 days--throwing up and diarrhea. 

After this event I never really recovered and began going to doctors for tests. I was treated for possible parasites, given various antibiotics, etc., but nothing worked. In my 20's I moved to San Francisco and was working as a paralegal for a large law firm, so I had great insurance. Tests continued for everything you could possibly imagine, but they never found anything, even though my symptoms were of classic celiac disease.

I finally found celiac disease mentioned in a book on digestive diseases. There was only a paragraph or two devoted to it, but it fit my situation exactly. I had to push hard for my doctor to screen me for it...I'm not sure why because he had voluntarily tested me for everything else on Earth, but he said it was "incredibly rare, and only around 1 in 5,000 people had it." Such was the state of affairs with this in the mid 90's.

My blood test was a high positive, and my biopsy confirmed it.


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23andMe genetic testing said I had a 17X normal likelihood of having celiac disease.  I didn’t pay much attention because I didn’t have typical symptoms.  I still told my doctor, and since she couldn’t find a reason for my migraines she made the connection that I might have it.  All blood tests high positive, later confirmed by endoscopy/biopsy. I feel generally better since going gluten free and getting my antibody levels down to normal. Still get the occasional migraine.

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I'm a blood donor but I kept getting deferred because my iron was too low.  My doctor had me take iron pills for a month and it was still low so she sent me to a gastroenterologist to find out why my body was not absorbing the iron.  The first thing he did was test me for celiac.  Even before the endoscopy, he told me I had celiac disease because of numbers.  After I learned about celiac disease, I realized that almost every time I had called in sick for several years was because of diarrhea but it wasn't often enough to go to the doctor.  Not a problem anymore unless I get glutened by accident.  Since I live alone, keeping the house gluten-free is not a problem.  I feel I was blessed to be sent to the right gastroenterologist the first time and was diagnosed right away as a result.  Unfortunately, he retired last year. 

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Cliff notes version:

I was sick, tired and felt weak (but tried to hide it) most of my life. A "picky eater" as a kid; I'd often eat nothing but rice for weeks at a time and every time I'd go to the doctor a finger prick would show I was anemic so I'd be given iron with multiple refills and never a recheck.

I always had some sort of terrible rash & at the ripe old age of 10 I got shingles. Doc said he'd never seen it in a kid unless their immune system was compromised.

Ffwd to adulthood when YEARS of iron infusions & blood transfusions for low iron & hypokalemia couldn't get my iron or hemoglobin up.

Finally 2& a half yrs ago I found a new Dr 45 mins away who, on my 1st visit sd "I think I know what's going on with you but I'll need to do some blood work and we'll go from there.".

2 weeks later every part of the celiac panel came bk high positive & I was sent for biopsies that confirmed the diagnosis of Celiac Sprue.

Not only that but I was diagnosed w Pernicious Anemia & multiple other severe vitamin deficiencies. Previous Dr had never checked my B12 which was the reason my iron and hemoglobin never went up to normal, not even low normal.

Lastly the chest pain I'd been so worried about for about 6 years and was told by prior hematologist that it's a normal symptom of anemia and uncomfortable but nothing to worry about, well tests showed that I've had at least one heart attack before the age of 35. And the severe burning pain and weakness that was all in my head,  peripheral neuropathy/ neurological damage from B12 deficiency/malnutrition.

I have a hard time understanding why it took so long to diagnose me with this disease. Looking back even the fact that I carried my 2nd child for 40 wks and he was stillborn a week after my Dr sd she'd only seen test results that high in ppl who were suffering from malnutrition (it was ketones/blood work, not sure what. Just what she told me) and that it must have been a faulty test. No other tests were done or anything.

I understand that everything that happened to me was considered rare but I can't tell you what it did to me emotionally to constantly be prescribed antidepressants and told it was all in my head when I was suffering.

Sorry this is all over the place but I'm perpetually worn out and not even going to proofread this.

Take care everyone.

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I also suffered from migraines for 12 years or so.. They'd last for days at a time.

My normal weight was always 150lbs but in 2012 I dropped down to 98lbs. It was around that time I had to stay a week in the hospital & have 2 bags of blood. Right after that I started biweekly iron infusions... This lasted a year before I started searching for another doctor.

Four doctors later and more infusions that I can count, I finally know what's wrong with me.

I wish I'd been diagnosed years ago. I'm now disabled because the damage from B12 deficiency was so severe that a great deal of it couldn't be reversed. I had to neglect my kids I was so sick for so long and doctors would look at me and say "there's nothing wrong with you". I feel like I missed out on their childhoods and they missed having a mother because in my case no one cared enough or had sense enough to realize what was wrong with me until it was too late.

What led up to my diagnosis? A lifetime of being told my symptoms were nothing until I was literally on my death bed.

I'm thankful I'm alive and try hard to avoid gluten. That's a whole other chapter though. The googling everything, contacting every company begging for straight honest answers, reading labels till I'm blue in the face, not being able to enjoy meals out with my family, having to pour all my precious energy into figuring out what I can fix so my teen boys will like what we eat. (Spaghetti that tastes like before etc.) Because they eat gluten free for me.

And the worrying. It's hard not to worry when I feel awful everyday no matter what yet I feel better than I did before I was diagnosed. So I avoid gluten at all costs because I never want to feel that sick again.

 

 

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I think it was a gastroenteritis that started it all. I caught it from a child I was looking after. He were both very sick. I never seemed to recover from it. Every now and then I would get again diarrhoea, flatulence and temporary lactose intolerance. I saw several GPs but no one seemed to think it was any serious. In the following 2 years I kept loosing weight, was always tired, would be out of breath just going up the stairs or up a street and was constantly sick (colds, flu, sinus infections, etc). I also had memory problems and learning new things. Finally, I got a doctor to pay some attention to it when I started having mild fever every night for a month, and normal temperature again in the morning.

My antibody tests were through the roof, I was (and still am) a Marsh 3C, very low vitamin levels (vit D, B12, etc.) and my doctor said he never saw anyone with such low blood ferritin. 

I feel great now: in the meantime I learned a new language, can go mountain climbing and had a very healthy and fat baby. However, my Marsh score never improved and I still need iron infusions as I cannot absorb it. 

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Ever since hitting puberty I have had terrible digestive problems. Lots of abdominal pain, nausea, diarrhea, and eventually developing lactose intolerance at age 17. However, when I turned 23 I started feeling exhausted, fatigued, and super tired all the time. In addition to that, my anxiety hit an all time high and I started having frequent panic attacks and was a nervous wreck. I cried all the time and felt incredibly overwhelmed by everything and everyone around me. In 2018 I started getting colds almost every single month and they would take 1-2 weeks to go away. I ended up missing a ton of work because my body took forever to heal and I would be incredibly exhausted.

My anxiety was starting to ruin my life and I was scared of everything (this was very new to me) including public spaces. I would have panic attacks in the parking lot before entering grocery stores and I would act like a robot at work because I was convinced I was going to get fired 24/7 even though my boss had let me know that I was one of their favorite employees. I started regularly seeing a therapist but it didn't feel like it was helping my anxiety improve at all. I often had to leave work early because I worked retail and would be unable to stand all day without feeling faint and dizzy. I drank a ton of water and ate normally everyday so something odd was definitely happening to me, but I attributed it to anxiety/depression and being tired from standing all day at work. My joints would be so sore after work that I would go to bed super early just so I could lie down and let me muscles relax. 

In 2019 I had already used all ten of my sick days by mid February because I had been sick so many times with faintness, fatigue, nausea, and a two week long cold where I lost my voice. I realized something was up after none of my symptoms ever went away, so when I went to my annual gyno exam I asked her if I could have an underlying health problem like a thyroid condition? When researching my symptoms Thyroid conditions seemed to be the only possibility I might have based on my fatigue and low body temperature. My doctor tested me for that (it showed up negative) along with my iron and ferritin levels. She said my iron wasn't great, but it wasn't as bad as it could be. However, my ferritin levels were almost nonexistent, which raised a concern in my doctor. I started doing my own research online and I discovered that Celiac Disease could be a high possibility for me. I scheduled an appointment with a Primary care doctor who said my blood levels were perfectly fine and I was overreacting, but she would refer me to a gastroenterologist for an iGA blood test.

Last July, I finally got the iGA blood test for Celiacs and I showed up with a score of 275. All you need to get a positive result is an 18 or higher so I definitely proved all the doctors wrong. My gastro doctor just thought I had IBS and that I was overreacting too, but I'm happy they agreed to doing that blood test for me any way. I have stopped eating gluten since November 2019 and have gotten rid of ALL of my symptoms. I'm super grateful that I was able to figure it out by myself because no doctor seemed to believe me so I had to advocate for myself. They tried to get me to do a colonoscopy and endoscopy too before taking the iGA test but I was unable to afford it. Once they received my results they said I definitely had Celiacs and did not need to confirm it with a blood test because of how high my blood levels had been.

I've been seeing a naturopath since November 2019 and they have been the only doctor that seems to believe what I'm saying and has a longterm plan for how to rebuild my digestive tract and immune system. I can't recommend a naturopath enough for people who have been recently diagnosed with Celiac! I've been taking lots of vitamin supplements and specialized probiotics to rebuild my super weak immune system and GI tract for the past 7 months and I can see such an improvement with my energy levels and my digestion. She also had me do a food intolerance blood test and it showed that my body was "allergic" to almost all fruits, veggies, gluten, nuts, and oats because my gut had been so destroyed from eating gluten for 26 years.        

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On 5/15/2020 at 7:30 AM, Juca said:

I think it was a gastroenteritis that started it all. I caught it from a child I was looking after. He were both very sick. I never seemed to recover from it. Every now and then I would get again diarrhoea, flatulence and temporary lactose intolerance. I saw several GPs but no one seemed to think it was any serious. In the following 2 years I kept loosing weight, was always tired, would be out of breath just going up the stairs or up a street and was constantly sick (colds, flu, sinus infections, etc). I also had memory problems and learning new things. Finally, I got a doctor to pay some attention to it when I started having mild fever every night for a month, and normal temperature again in the morning.

My antibody tests were through the roof, I was (and still am) a Marsh 3C, very low vitamin levels (vit D, B12, etc.) and my doctor said he never saw anyone with such low blood ferritin. 

I feel great now: in the meantime I learned a new language, can go mountain climbing and had a very healthy and fat baby. However, my Marsh score never improved and I still need iron infusions as I cannot absorb it. 

My doctor said the same thing to me about ferritin! I really think getting my ferritin blood levels taken saved my life!!! All other doctors just did iron tests without the ferritin element added in. It really shows underlying Celiacs in my opinion! 

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On 5/11/2020 at 7:49 PM, M Susan said:

I feel I was blessed to be sent to the right gastroenterologist the first time and was diagnosed right away as a result.  Unfortunately, he retired last year. 

Wow that is fortunate. I would mourn his retirement as well, but clearly he deserves it. Let's hope he left some others he trained like him. 

 

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Woke up FEB 9 this year... started having upset stomach...   then eventually after going to the gastro doc and having a CT scan first which saw nothing.....  then finally a Endoscopy is when I found out...  Dr said everything looked like a normal GI after the Endoscopy beyond some superficial gastritis...  then the biopsy found it..... took about 3-4 months to find out...

This Sunday will be 3 weeks since I'm off Gluten....  still feelin crummy....

 

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3 hours ago, DJFL77I said:

Woke up FEB 9 this year... started having upset stomach...   then eventually after going to the gastro doc and having a CT scan first which saw nothing.....  then finally a Endoscopy is when I found out...  Dr said everything looked like a normal GI after the Endoscopy beyond some superficial gastritis...  then the biopsy found it..... took about 3-4 months to find out...

This Sunday will be 3 weeks since I'm off Gluten....  still feelin crummy....

 

After my initial endoscopy and colonoscopy, my GI told me that everything looked fine, but he did say that celiac disease damage is microscopic and that I would have to wait for the biopsies.  My new GI has the latest and greatest equipment.  The magnification was so great that you could see the villi (got a photo). But I had to wait for the biopsies again.  This lab report matched the visual — all healed.  

You are in a hard place.  It is hard to follow any diet (like when you are trying to lose weight) especially when you are not well.  But be persistent.  You will get better.  So glad that you are seeing a nutritionist.  Not just because he or she will guide you towards better nutrition which will help expedite healing but to provide some emotional support.  Of course, you have us, here at the forum too.  We walk in your shoes.  
 

Hang in there!  Be patient.  So hard to do, but it will pay off soon.  
 

 


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Last year I started exhibiting symptoms that were way worse than anything I'd ever experienced, mostly GI. Throughout my teen years I mostly experienced bloating and uncomfortability, but never went further into it and just dropped it for myself. But during late summer of last year, whenever I ate anything like my pasta or oatmeal, I would be in the bathroom so much that my insurance nurse line said it was close to time to going to the ER or dehydration.

I tested the waters with the help of my mom and eventually went to the doctor in January to get tested for common food allergies. I came up positive for gluten but not wheat, everything else was fine. So I went on what I assumed was more of a gluten free diet. A few months passed and I was trying my hardest but I still had symptoms. So my doc referred me to a gastroenterologist in late April.

The gastro asked if I was on a gluten-free diet, and I said "yes, as much as I'm aware". Which I now know is NOT how the blood tests work, so I think he's uneducated on that part of the topic. But apparently I had enough antibodies and whatnot in both blood tests to determine that I did have celiac, this was the beginning of may. He said an endoscopy wasn't necessary since my tests were so obvious. It's a bit pricey for me now anyway. If I'm still having issues in the long run I may go do it.

I got some basic help from a dietician but since I'm not making any money I can't afford pay my co-pay. But I've got the basics down and I've mostly been seeking online help and resources. I have a good support system that I'm happy with. :)

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