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Positive Blood Test, Negative Biopsy, Damage Noted

gingergrly

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gingergrly Newbie
gingergrly
Posted

I have experienced constipation for several months that is unchanged by medications, and I used to experience a lot of stomach pain years ago which was never diagnosed. My gastroenterologist tested me for several things, and my blood test for celiac tested "off the chart" positive. I then went of a gluten-free diet for about a week before getting the biopsy. The doctor said that there was intestinal damage and the villi looked smooth...but then the biopsy came back negative. They said that it was latent celiac.

My question is, would it really be latent with such high blood results for celiac with visual noted damage with the endoscopy? Could the biopsy have been negative from being gluten-free for a week?

I have been gluten free for several weeks, but my digestion hasn't improved. If my intestines are really that damaged, would it take a long time for them to heal?

Thanks

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love2travel Mentor
love2travel
Posted

I have experienced constipation for several months that is unchanged by medications, and I used to experience a lot of stomach pain years ago which was never diagnosed. My gastroenterologist tested me for several things, and my blood test for celiac tested "off the chart" positive. I then went of a gluten-free diet for about a week before getting the biopsy. The doctor said that there was intestinal damage and the villi looked smooth...but then the biopsy came back negative. They said that it was latent celiac.

My question is, would it really be latent with such high blood results for celiac with visual noted damage with the endoscopy? Could the biopsy have been negative from being gluten-free for a week?

I have been gluten free for several weeks, but my digestion hasn't improved. If my intestines are really that damaged, would it take a long time for them to heal?

Thanks

Hi, Ginger! Glad you posted today.

There are many issues with your situation:

1. False positives are so rare that they are almost non-existent. There is a high false negative rate, though. My bloodwork was "off the charts" as well, so I also had biopsies which were positive.

2. You need to be eating gluten at least three months (and lots of it) prior to the biopsies. Perhaps that one week off gluten did it for you.

3. At least 8-11 biopsies are needed; most doctors only take 3. They could easily miss it.

4. It is an individual disease; each person has different healing times. I was told it can take 2-5 years to get my gut up to the level of someone without celiac. However, it is fairly common to begin feeling better tummy wise after a few weeks - some people feel dramatically better. As you do not, perhaps check for any hidden gluten in products (i.e. soy sauce, vitamins, meds, toothpaste) or cross contamination in your house. Plus once off gluten many people experience other food intolerances that make them sick such as soy, dairy and so on.

There are tons of experienced people on this board who will have lots of great advice to give you.

Hang in there! It is a tricky thing to figure out but it can be done. :)

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    • trents
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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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      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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