How was your Coeliac Disease diagnosed?

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Hello,

This summer I have been experiencing very difficult symptoms affecting my digestive system (I'm a 22 year old male, h pylori bacteria confirmed negative for gastritis). I am having an endoscopy in October. Does an endoscopy always include a biopsy, and is it always taken in the same area? Will reducing or eliminating gluten have a possible effect of misdiagnosis?

Any help is appreciated.

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  • Posted

    Additional notes for my symptoms:

    In June - had difficulty with stomach for one week, then had diarrhea for a full week before going to doctor. Lost appetite and ate very few calories that week (<500/day). Burning pain in stomach (gastritis type), and was very weak. Attempting to eat resulted in throwing up. Bloated stomach. Was given strong antacids and ulcer medication which helped while I recovered and was able to eat a low acidic diet. Felt normal until again in August.

    Came back in last week of August, but less of a burning pain in stomach. Was unable to eat and had constant diarrhea. Rapidly became very, incredibly weak for many days (eating <500 cal/day). Bloated and lots of burping. Two different antacids are helping, as I am now on Day 3 and able to eat about 1000 calories in food and 700 in supplement (ensure). Quickly improving with each day and no diarrhea, but still bloating and burping, overall weak but getting better.

    No nasuea, no/minimal heartburn, had some muscle pain in legs and back, constant sore throat from acid reflux, as well as undetermined by doctor small red marks on feet and legs that have gone away (no pain or itching). Main difficulty this summer has been diarrhea--->loss of appetite-->unable to eat. Never had problems until my Spring semester of this January - May, which I was getting the runs too often and too easily from a normal diet. Don't drink alcohol or smoke anything, and I have always ate more healthy than not (cook myself).

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    • Posted

      Should note that I went off medication after two weeks by July after first episode, then it came back as described in last week of August.
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  • Posted

    Hi Sam2894

    Go glutine free diet for two week . If feel there is deference it mean any improvement in your digestive problem it mean you have coeliac disease or non coeliac gluten sensitivity NCGS . There is not significant deference in symptoms between these two diseases, so in this case you don't need Endoscopy because biopsy that taken from duodenum reveal only existing of Coeliac disease but not NCGS. You can continue your glutine free for at least one year before make another test . Put in your mind there is no treatment for these two diseases only by avoid all food having glutine. My regards

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  • Posted

    Hi Sam,

    Clearly something is going on with you and needs sorting asap. From my own experience I would say DON'T give up gluten yet. My GP did not have the sense to tell me to keep eating gluten and I was eating very little, therefore, when she took blood tests and they came back negative she reported that I was not Coeliac and then proceeded to put me on antidepressants! I continued to get ill for another year by which time I felt like I was dying. I was eventually referred to a Gastroenterologist who did genetic testing and said I was a 'text book case of Coeliac'. I have been off gluten for two and a half years now and feel so much better although because I have been ill for so long I now have a legacy of attributable conditions,,,,acid reflux, IBS etc.

    Try to continue eating gluten every day but get tested asap. Get referred to a gastro as GPs are clueless about this condition. You really will need to be in control and educate yourself as even if diagnosed the attitude is very much 'well just don't eat gluten then and you'll be fine'. The thing is there is no money to be made from Coeliacs as there is no pill to cure us and pills =money for the massive pharmaceutical industry and the incentives doctors are given to keep dishing them out. Sorry to be so cynical but the way Coeliacs are fobbed off is a disgrace.

    I do hope you feel better soon. Don't give up.....keep pushing for the answers/tests you need to get well. The internet is so helpful and there is a lot of information to help you. The Coeliac Society may be a good place to start.

    Best wishes

    Lyn smile

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  • Posted

    Hi Sam,

    I'm 25 & my doctor is pretty sure I've got coeliac disease, there's a bit difference when I have a completely gluten free diet to when I eat normal food! I'm going through the same process with endoscopy and mine is in 3 weeks! My doctor said to make sure the results are the clearest then you need to be eating gluten all the time until you've had the endoscopy & this is so that the stomach lining will be irritated by the gluten!

    Have you done any kind of gluten free diet at any point or anything?

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  • Posted

    Hi Sam,

    The endoscopy may or may not include a biopsy.  When the villi atrophy it is very evident.  Instead of looking like “fingers” extending from the intestinal wall, the villi look like flattened toadstools.  There may be reasons other than celiac that a biopsy is taken.

    IF YOU REDUCE YOUR GLUTEN INTAKE before any test, the test can result in a false negative.  It is imperative that you maintain your normal diet prior to any testing.

    it is NOT UNUSUAL that symptoms are exacerbated in the summer.  If you have an autoimmune disease such as Celiac, you are tremendously susceptible to higher heat.  It is a little known fact even amongst the medical industry that high heat, lack of sleep, overdosing on a particular food that is usually safe, can cause Celiac-like symptoms.  These are not actually proof positive that you have been contaminated.  This CAN MEAN that your immune system is confused and begins the process of responding to something that isn’t even there.  This may last up to a week for me.  When I am actually contaminated it results in 6-weeks of extreme illness, pain, and fatigue.

    Hang in there.  We’re in this together!

    Laurie

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  • Posted

    Hi every body

    About what Lynda said ,its true. most doctors when fail to diagnosis problem in your diagestive system, what they do? they didnt let you leave the clinic without any medicine ,so they give you a drugs that not harm and in same time not useful

    like  antidepressants. and this done with thousands of patients .

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