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Finally - Endoscope In Sight

glaska

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glaska Newbie
glaska
Posted

Hi there!

Am happy too find some people who share the frustration of trying to get an endoscope.

I would like to share my story of the struggle of trying to get a endoscope for a possible celiac condition after a negative blood test.

I have been feeling sick for a year, arguing with GP that it may be celiac for 3/4 year. Mouth sores, unexplained tiredness and lethargy till I can't work/concentrate, rashes and itchy skins, extreme dry skin, brittle nails, bloated stomach till I cannot eat, unexplained bruises, switch between bad constipation and diarrea.... I am miserable most of the time, can't work, can't concentrate, can't eat, depressed, .....I have never felt like this all my life.

I have been diagnosed with flea/house mites allergy (turned out false), scabies (turned out false), eczema (because my rashes do not look like DH), acne breakouts (first time in my life but he say it is probably hormonal changes), stress, anxiety, irritable bowel syndrome with these repeated visits to GP in a year. In between those visits, due to the eczema diagnosis, I had eliminated all possible triggers from my diet (egg, dairy, chocolate, meat, red fruits, fish etc) to test if one of the food maybe triggering the rashes. But it has not gone better as sudden bouts of rashes comes and goes which makes it worst. After 2 months of being vegetarian, I realised that gluten was the only thing I had not eliminated but consumed even more in the strict diet period. Then I cut back only gluten from my diet and the rashes cleared up! And I felt better except that the bloating comes back on days when i consume milk or yogurt.

I then insisted on the gluten allergy test but it came back negative. Perhaps because I only started consuming gluten 2 weeks before the test? My GP did not indicate to me that I should be consuming gluten for the test and he never asked. Hence he concluded I do not have Celiac but irritable bowel syndrome. I informed him on the possibility that the test may be unreliable because I changed my diet, but he dismissed it that it has no impact since the two weeks should be sufficient and the test was 98% accurate. I was pretty happy and started back on my normal diet.

But things started to go downhill really fast again. A month ago, the tiredness and lethargy got so bad that the GP finally sent me for another blood test. And I am so bloated I looked like I am pregnant. I also started to have diarrea now and then instead of constipation alone. This time the blood test showed that my iron level has depleted so low it is practically non-existence, my red blood cell size is about 90% below than what is considered minimal in 6 months. Again he denies celiac because of the earlier negative celiac blood test (he did not ask for one this round). I am to increase the iron in my diet. Period.

I was frustrated and informed him I am refusing any medication or action to treat what I considered a symptom of an underlying problem without a proper plan for further checkup. He again wanted to buy time, stating that we should first try to increase my iron level and see if it solve the problem before checking for celiac (he said this during the last 3 possible diagnosis). But it may cause a problem because iron supplement will make my constipation worst. I then told him I have been eating iron supplement on an off all my life and there are brands which does not trigger constipation problem. He then perked up and said, oh? you have problems with iron level all your life? Anemia is a symptom of celiac, but still your blood test is negative......and then I patiently explained again that the last test may not be reliable because I only had gluten in my diet for 2 weeks before the blood test. Plus it is acknowledged by specialist that a negative blood test does not mean definitively that I do not have celiac. And I explained again (third time) that I had went gluten free for a couple of weeks and my problems had either lessen or stopped until I start back on it. This time I think he is finally listening. He said it is possible that my symptoms got worst now because I had allowed my body to heal with my gluten free diet and once I started on gluten again, my body reacts stronger to it. Still my blood test is negative... but perhaps I should get an endoscope.

Now finally I am referred to a specialist for endoscope. There is a waiting list for 9 weeks but at least there appeared to be an end. Meanwhile I just have to cope with the lethargy.

I am glad finally i am referred a specialist who can let me know if I have celiac or not. Not just a GP who denies it based on a negative blood test.

But I still do hope I do not have celiac.

For those who are still struggling out there, if you suspect you may have celiac, fight to get proper diagnosis. It is a frustrating and tiring effort but it is your health. No GP has the right to deny you from the right care as they can make decisions that impacts your whole life. They cannot know everything about all diseases. You are the one who has to live with your body and your health. Beware when they try to separate all your symptoms into different kinds of conditions and never ask questions to understand your health condition overtime.

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kareng Grand Master
kareng
Posted

How long have you been eating gluten free? That could make your endoscopy negative. You should be eating a regular gluten diet.

kittty Contributor
kittty
Posted

I then insisted on the gluten allergy test but it came back negative.

What test/s did he order? The celiac test isn't the same thing as an allergy test, so he might have ordered the wrong thing, or just ordered one test instead of the whole panel. My doctor was completely clueless about the celiac tests, and had to look them up.

I don't see any reason why he can't run a second blood test in the 9 weeks you're waiting, especially since you need to be eating gluten anyway.

But way to stand up for yourself and demand answers and not just treatments!!! :D

GottaSki Mentor
GottaSki
Posted

I then insisted on the gluten allergy test but it came back negative.

Welcome!

You need a full celiac blood panel, not an allergy test or single screening test. You should be ingesting gluten right up until the endo, so I'd suggest getting the blood drawn on the day of the endo. This way you will have the most accurate picture of what gluten is doing to you. Additionally, should you have Celiac Disease this initial blood panel will be used to compare with your follow up care results.

Should all tests including endoscopic biopsies come back negative for Celiac Disease, remove all gluten again - your previous reactions are enough to diagnose Non-Celiac Gluten Intolerance. Remove gluten and improve your health - diagnosis or not.

Good Luck to you :)

Roda Rising Star
Roda
Posted

You could call and see if the GI has a cancellation list and be put on it. It could get you in sooner. I did this with my oldest son.

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