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Blood tests vs biopsy


Dp0155

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Dp0155 Rookie

Hi guys, 

I last week received diagnosis of celiac via blood tests and what the dr described as “pretty much 100% certain you are celiac as we don’t usually see numbers like that”. I suffered from severe symptoms nausea , vomiting , stomach pains , bloating. I dropped 6kg in weight rapidly and my state was awful to say the least especially as an advid athlete. 

I was advised by the dr to go gluten free immediately and the difference has been astounding. I can train again with increased strength , I can get outta bed some days I just couldn’t , no more nausea ect. I’m also on vitb12 and iron pills as I was also malabsorpbing. 
 

I was advised follow up appointments would be made and I now have an appointment with my dr to discuss a biopsy. I mean as I understand it’s the gold standard for testing in adults but my dr seems to be convinced I’m celiac, so it did take me by shock when she said once the biopsy date comes through I would need to eat gluten again for 6 weeks. Like what am I meant to do be happy with feeling horrendous again for 6 weeks and get weak ! Seems so counter productive to me. I’m just wondering if anyone else has had Similar issues and if I should contest a biopsy or not ? 
 


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cyclinglady Grand Master

While I think an endoscopy to obtain biopsies can be very valuable (benchmark), getting one now during this pandemic seems risky.  Your blood tests were high and you responded to the diet.  You would have to do a gluten challenge of 2 to 4 weeks (for endoscopy, longer for blood tests) which can be pure misery once you have been gluten free.  If you need a solid diagnosis, consider waiting until this crisis is over.  In the meantime, in six months, repeat the blood tests to see if they are trending downward.  Consider a genetic test too.  Many doctors will give you a formal diagnosis based on all these results.  

  • 1 month later...
Larzipan Rookie

Hi there, I'm not a medical professional but I had a very similar experience. I got a very high result on my blood test and my gastro doctor thought it was pretty definite that I had Celiacs Disease. They wanted me to do a colonoscopy and an endoscopy to 100% confirm it, which I could not afford so I turned it down. I've been eating gluten free since November and all of my symptoms have gone away. I feel very confident that I have Celiacs even though I didn't get a biopsy. I no longer have nausea, chronic diarrhea, migraines, anxiety/depression, and terrible joint pain after quitting gluten. I personally don't think it's necessary to get a biopsy if you can feel your body healing itself while being gluten free. I don't think it's worth the pain of eating gluten again for weeks to get further proof that an ingredient really hurts your insides, but that's just me haha.  

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      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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    • cristiana
      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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