Positive Blood Test Result, Negative Biopsy, Geographical Tongue

AJJ · April 9, 2008

Hi all, am very new to this (both Celiac Disease) and blogging. Just wondering what others thought - have postive blood test results to TTGa but a negative biopsy? Have been feeling very fatigued over the past six months but my iron is normal. Also have had more frequent migraines, some mild hair loss and a geographical tongue (which I've had for years). My gastroenterologist has advised that I have latent celiac disease and that no changes are required to my diet. I have to say that in my initial consult when my doctor asked if I ever get mouth ulcers I said no - not connecting that the changes in my tongue might be related. Should I continue on as I am or do others think it would be worthwhile to attempt to go gluten free?

ksymonds84 · April 9, 2008

AJJ said:
Hi all, am very new to this (both Celiac Disease) and blogging. Just wondering what others thought - have postive blood test results to TTGa but a negative biopsy? Have been feeling very fatigued over the past six months but my iron is normal. Also have had more frequent migraines, some mild hair loss and a geographical tongue (which I've had for years). My gastroenterologist has advised that I have latent celiac disease and that no changes are required to my diet. I have to say that in my initial consult when my doctor asked if I ever get mouth ulcers I said no - not connecting that the changes in my tongue might be related. Should I continue on as I am or do others think it would be worthwhile to attempt to go gluten free?

Others with more experience will chime in but to me a positive blood test means you do have active celiac because the antibodies are able to get into your blood stream which happens when you have damaged villa. I also have geographic tongue and it gets worse when I have gluten and citrus fruits especially pineapple. Didn't connect the geo tongue with gluten until recently. I would definately do the diet, it will help with the migraines and other symptoms that I'm sure is a result of your celiac. Good luck and welcome to the board!

aikiducky · April 9, 2008

AJJ said:
Hi all, am very new to this (both Celiac Disease) and blogging. Just wondering what others thought - have postive blood test results to TTGa but a negative biopsy?

A negative biopsy can mean a lot of things. It can mean a completely healthy intestine but it can also mean that the damage was just short of complete, if the doctor goes by the old definition of celiac where you have to have complete villous atrophy before getting diagnosed. It might be useful to ask your doctor what kind of criteria he has for positive biopsy.

Also it might be just a matter of time before you have a positive biopsy. The damage develops over time and yours might just not have been there yet. It's up to you if you want to continue eating gluten until that happens.

A positive TTG is a pretty strong indication of celiac. If you do decide to keep eating gluten, you should at least have another biopsy later I think.

Personally I'm gluten free with negative blood tests, so obviously I think it's useful for me. But it's a decision you have to make for yourself. Just out of curiosity - how did you happen to be tested in the first place, do you have family with celiac?

Pauliina

AJJ · April 10, 2008

Thank you so much for your reply. I came to be tested because about three months ago I got really sick with nausea, vomiting and some diarrhoea. The nausea persisted for about a two week period and I felt really unwell. I have lost a lot of weight (about 13 kg) over an eight month period (not intentially) but had had a baby in the year previously. My GP asked if I had anyone in my family who had a malabsorption problem and I mentioned that my aunt had been diagnosed with something (I couldn't even remember the name) about two years ago. He then asked if I wanted to be tested and at the time feeling so unwell I said yes. Am wondering if Celiac disease is something that I might have had all my life. My mum tells me that I have had a geographical tongue from the age of 2-3, that I had drop attacks up until the age of 8 or 9 -which were always put down to hypoglycaemia (but we're starting to wonder if they weren't some type of seizure), I have tooth enamel defects and clearly remember having tummy pain as child. I have linked my geographical tongue to raw tomatoes. Doing some research on line, I have found that tomatoes are a "nightshade" food which as I understand it can cause an autoimmune reaction and has something to do with an intolerance to lectin. Can my positive blood test results be linked to a lectin intolerance rather than gluten which might help to explain why my biopsy came back negative?? Is a lectin intolerance always linked to celiac disease?

blessedmama · April 10, 2008

ksymonds84 said:
Others with more experience will chime in but to me a positive blood test means you do have active celiac because the antibodies are able to get into your blood stream which happens when you have damaged villa. I also have geographic tongue and it gets worse when I have gluten and citrus fruits especially pineapple. Didn't connect the geo tongue with gluten until recently. I would definately do the diet, it will help with the migraines and other symptoms that I'm sure is a result of your celiac. Good luck and welcome to the board!

Wow, I just posted a blog in the topic relating celiac to other disorders. I read your post and had no idea that geo tongue could be related to celiac. celiac disease runs in my family (both gmas, aunt and her two daughters), but my blood test came out negative so I never did any further testing. I am going to do the genetic test, if it's positive at all, I'll just go gluten free.

KristaleeJane · April 10, 2008

Can someone tell me what geographical tongue is?

jewi0008 · April 10, 2008

Does geographic tongue hurt or annoy you or burn or anything?!

ksymonds84 said:
Others with more experience will chime in but to me a positive blood test means you do have active celiac because the antibodies are able to get into your blood stream which happens when you have damaged villa. I also have geographic tongue and it gets worse when I have gluten and citrus fruits especially pineapple. Didn't connect the geo tongue with gluten until recently. I would definately do the diet, it will help with the migraines and other symptoms that I'm sure is a result of your celiac. Good luck and welcome to the board!

April 10, 2008

Okay, add another one to my endless list! Thanks for bringing the Geo. to my attention. I have had this all my life. I thought it was because I was eating hot/spicy food to fast. I have major patches on my tongue and they feel sorta like infected pimples. (only much larger) and yes sometimes they hurt.

Does anyone know if these lessen the longer you are gluten-free?

AJJ · April 11, 2008

If you google geographical tongue you can find some pictures of it, but essentially as I experience it, they are "patches" on my tongue. They are often about a centimetre in width and are unusally shaped - look a bit like a map. You can see the outline to the patches because there is usually a white edge to them. They appear all over the tongue and they do heal but new ones appear (in a different spot). Mostly it isn't painful although it can be - I have noticed over the years that raw tomatoes (uncooked) often "strip" my tongue, feeling quite a bit like an ulcer. Sometimes I can feel the pain immediately after eating them.

I thought up until a few days ago that it was just because tomatoes are acidic. Interestingly I have just discovered that tomatoes are a nightshade food which contain lectin. Gluten also contains lectin. As an experiment I ate an uncooked tomatoe yesterday and paid attention to what happened. I didn't notice any pain in my tongue, but within a couple of hours of eating the tomatoe I noticed stomach pain (which I have had for the last 31 hours now)...

What I'm trying to find out now is if my symptoms and blood test results reflect an intolerance to lectin rather than gluten (or in addition to)...

Ursa Major · April 11, 2008

As I said in another post of yours, a negative biopsy can NOT rule out celiac disease, because undamaged spots in your intestines may have been biopsied, missing the damaged parts (unfortunately, that is a common thing to happen). If your blood tests were positive for celiac disease, you have it and need to be gluten-free immediately.

Plus, you appear to have an intolerance to nightshades. You would do well to eliminate all nightshade foods, which are potatoes, tomatoes, peppers and eggplant, from your diet in addition to gluten.

There are quite a few people here who are gluten and nightshade intolerant, that combination is not unusual. I can't really tolerate any lectin foods at all. Those include all grains (not just gluten ones, including rice), eggs, all dairy, legumes, nightshades. Especially eggs will give me almost the same symptoms as gluten, and rice is a close second. Brown beans give me reflux. Potatoes give me diarrhea and stomach and bowel cramps, I get migraines from tomatoes, and big, pus-filled pimples all over my face from peppers. I have never liked eggplant and haven't tested what it would do. Tobacco is also a nightshade plant, which explains my severe allergy to tobacco smoke (it gives me asthma).

natalie23 · July 19, 2008

AJJ said:
If you google geographical tongue you can find some pictures of it, but essentially as I experience it, they are "patches" on my tongue. They are often about a centimetre in width and are unusally shaped - look a bit like a map. You can see the outline to the patches because there is usually a white edge to them. They appear all over the tongue and they do heal but new ones appear (in a different spot). Mostly it isn't painful although it can be - I have noticed over the years that raw tomatoes (uncooked) often "strip" my tongue, feeling quite a bit like an ulcer. Sometimes I can feel the pain immediately after eating them.

I thought up until a few days ago that it was just because tomatoes are acidic. Interestingly I have just discovered that tomatoes are a nightshade food which contain lectin. Gluten also contains lectin. As an experiment I ate an uncooked tomatoe yesterday and paid attention to what happened. I didn't notice any pain in my tongue, but within a couple of hours of eating the tomatoe I noticed stomach pain (which I have had for the last 31 hours now)...

What I'm trying to find out now is if my symptoms and blood test results reflect an intolerance to lectin rather than gluten (or in addition to)...

Fascinating! I have had a geographical tongue for a long time! I always attributed it to the acid too (as tomatoes and pineapple would make it flair up). Has a gluten-free diet gotten rid of it for anyone?