HOW LONG DID IT TAKE FOR YOU TO GET A CELIAC DIAGNOSIS, FALSE NEGATIVES?

[Lou may]

I’ve been having gastro issues from almost 15 years now, initially I was referred to a psychologist because my gp at the time thought I was making it up and that it was all in my head. I was around 10/11 then. Was given aspirin to take every morning before school.. that was my GPS solution back then. 

 

Then I was hospitalised for a recurring infection numerous times (not related .. maybe it was) and was given IV antibiotic therapy on all those occasions. That’s when the problems really began to get more worse than they had been prior to this. Had stool and bloods checked for infections with everything negative. Even had a celiac blood panel done then and a colonoscopy back in 2011- they couldn’t carry the full procedure out because it was too painful for me (I was kept awake) so they never got the opportunity to properly take a look. Fast forward to around 2014 and I had only what I can describe as a flare up- chronically so! 

In 2014 was when things got REALLY bad, I came down with unexplained Loose stools, intense stomach pain (like knives being twisted) it was so bad that I was in bed for a week, doctor ran stool tests and they detected microscopic traces of blood.. he then tested for h. Pylori (3 times) and they all came back negative, so he just put it down to gastritis. Since then i have these types of flare ups most months. 

 

He offered no more help and so I decided to cut out gluten for the second time since 2011.. it was successful, my bloating pretty much vanished, I started having normal bowel movements my skin was immaculate and cramping was non existent- I also lost about a stone just by cutting out the gluten. Then I went to my GP and my local nurse and both told me to start eating gluten foods again - because I wasn’t celiac so I had no good reason to cut it out and could cause deficiency. However prior to me cutting gluten out, I had tested shockingly low in b12, vitamin D and was close to becoming anemic.

As soon as I cut the gluten out all those blood levels started to gradually restore themselves months after cutting gluten out..

Anyway since then I’ve been on and off of gluten consumption just because I still feel further investigation and ruling out of celiac would be beneficial. But now the situation is far worse than I ever imagined. The pain is almost unbearable, I also have suspected ulcers, (but have began to notice a pattern- the pain and heartburn is at its worst when i've ingested gluten containing foods) and I have also started to have pale and floating stools in the past 6-9 months which is a new development for me. i  have previously been diagnosed with ibs ( imho ibs is a blanket term for symptoms that can’t be explained properly) In the past five years i’ve Also started to develop a blistering kind of rash, that has flared up on my knee caps, thighs, arms and I think now on my scalp.

The abdominal bloating has me mistaken for someone who is 5 months pregnant which is depressing to say the least. My skin is drier than the Sahara desert- which is odd because I’ve never had problems with dry skin.

Chronic migraines are something which affect me every other week at this point, and I have been suffering with PCOS (I have heard infertility can sometimes be linked to celiac) since I can remember. Might I add the only time my menstrual cycle has ever resembled something normal is when I cut out gluten for a long amount of time…

I’m writing this history because I imagine there are loads of people who are fed up and frustrated with being passed from doctor to specialist with no real solution, but remaining pain! Pain which is affecting how you live your life.

I want to know if anyone out there has gotten to the point where they can no longer carry on eating gluten to wait for more damage to be done - even though specialists require that you do gluten challenges to do things like bloods and biopsies…?

How important is the biopsy in 2018, as I have heard biopsies only reach so far down into the small intestine to look for villi atrophy… so what if it’s missed and they tell you it isn’t actually celiac when it is…?

Sorry for the essay… just waiting for an appointment in June to see yet another gastro and I know they’ll make me eat gluten so they can do a biopsy. Whether or not they find anything i don’t know. And quite frankly the idea of a biopsy terrifies me because of failed and traumatic past attempts. ( I have ASD so medical procedures and environments scare me to the core) 

Even at the time of writing this I feel like its probably all in my head because i've had so many GP's tell me it's nothing and Im probably imagining it. But the pain and inability to live a normal life now seems very real to me. I almost feel like a fraud for sharing my story with you all. 

I’m so desperate now that I’m trying to fund 6k to see a private doctor in the hope she’ll be able to speed up this process. It would be nice to just feel healthy again.

Would appreciate it if anyone out there could share their long frustrating journey to diagnosis official or not! 

[ravenwoodglass]

So sorry you are going through all this. It took over 40 years for me to finally be diagnosed. By that time I was close to death. We have similiar histories except for me the skin form of celiac, DH, was one of the first symptoms to show up along with neuro related issues. The last 15 years before diagnosis were the worst with daily and nightly D, lesions on my arms, scalp, face and back. I did have false negatives on blood work which I understand is not unusual especially for those with DH. I had the lesions biopsied but the biopsies were not done correctly so I was told I had everything from poison ivy in my bloodstream to 'pickers acne. My severe stomach issues were attributed to IBS. The brain lesions found on MRI were considered normal by my ignorant neurologist, they aren't they were diagnostic of antibodies attacking the brain. By that point I could barely walk unaided but was told I wanted to be sick. I could go on but will spare you.

I was finally officially diagnosed but not before an allergist had me do an elimination diet and told me never to touch gluten again. I was sent back to my clueless GI doctor who demanded a challenge that caused a severe GI bleed and I finally got my diagnosis.

The choice to continue trying to get a diagnosis is up to you.  Sometimes we have to weigh the benefits when it is clear our bodies have given us the answer.  You are correct that the GI will need for you to do a challenge for more blood work and an endo and you do still run the chance of a false negative. While a formal diagnosis is ideal sometimes we just have to take our health in our own hands.  Whatever choice you make as to continuing to seek out a formal diagnosis or to go back to gluten free we are here to help as much as we can. Do read the Newbie 101 thread at the top of the Coping section and ask any questions you need to ask.

[Lou may]

@ravenwoodglass Wow thank you so much for taking the time out to tell me your story its greatly appreciated. Im shocked but equally not surprised at the length it took for you to get a diagnosis  

It's so scary that so called health professionals didn't connect the dots.. I have been tested for the ulcer causing bacteria but those are negative and have learned that Peptic Disease is also recognised in people with undiagnosed Celiac. Which is interesting. 

Yes i have been to my gp too many times now to remember, all of them have told me its just IBS, despite the acute pain which seems to be getting worse. I am ordering some more bloods this coming week, just to check to see if there is any remaining deficiencies. I used to take a B12 sublingual because taking most supplements just shreds my stomach - including any pain killers too. My GP did tell me to stop supplementing b12 because those levels had risen well enough to not have to supplement again for a while. But the symptoms associated with B12 defiency and low iron have returned again. 

When you had the GI bleeding, did they take biopsies or did they do a scope without taking any samples? 

Again im so sorry you had to go through life suffering like that, but i hope things are better now than they were before diagnosis. 

I will make sure to check the Newbie 101 thread. 

Thanks for making me feel so welcome! 

[ch88]

Thanks for posting your story. It took me many years to figure out I was celiac.

If you do decide to get a biopsy it is recommend that you eat wheat for two weeks before the biospy. Here is a link that someone else posted on a different thread.

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14 hours ago, Lou may said:

He offered no more help and so I decided to cut out gluten for the second time since 2011.. it was successful, my bloating pretty much vanished, I started having normal bowel movements my skin was immaculate and cramping was non existent- I also lost about a stone just by cutting out the gluten. Then I went to my GP and my local nurse and both told me to start eating gluten foods again - because I wasn’t celiac so I had no good reason to cut it out and could cause deficiency. However prior to me cutting gluten out, I had tested shockingly low in b12, vitamin D and was close to becoming anemic.

It sounds to me like wheat could very well be the problem or part of the problem. It is also possible for someone to have a wheat allergy or other types of wheat sensitivities besides celiac disease.  If you feel better when you don't eat wheat that is a good reason to avoid eating it.

It may be that some people with migraines do best to avoid certain foods that they react to. Here are a couple links.

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14 hours ago, Lou may said:

How important is the biopsy in 2018, as I have heard biopsies only reach so far down into the small intestine to look for villi atrophy… so what if it’s missed and they tell you it isn’t actually celiac when it is…?

I think it depends on the situation. If you want to know for sure if you are celiac or not then a biopsy and a blood test is a good idea. I can also see why somebody might find them to stressful or decide not to do it.