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AJJ

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About AJJ

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  1. Where do I find out more about going to remission as a teenager? I think that happened to me?
  2. Hi there, Something else to look into would be Sjogren's Syndrome which I think can cause some of the symptoms you mention. As I understand it can also coincide with Celiac disease and is linked with Rheumatoid Arthritis. Good luck.
  3. Hi, I have found your post so interesting because I think what you have described has happened to me. As a child I was very unwell. My mum kept taking me to the pediatrician and even to this day says that something was wrong but they weren't able to determine the cause. I failed to thrive in that I was extremely underweight, I had drop attacks (which were put down to hypoglycaemia) and I had a lot of tummy pain (I remember calling it my "hungry pain" or my "bend over pain"). I have had a geographical tongue from the age of 2 or 3 which has continued througout my life and my teeth are badly discoloured. I apparently grew out of the drop attacks when I was about 8 or 9. But I remember having tummy pain alot but intermittently until I was about 13 years old. I am now 32. I have noticed over the years that my geographical tongue can be linked, or is made worse, by eating raw (uncooked) tomotoes - which I have learned from this website are nightshade foods. Nightshade foods contain lectin which is also found in foods that contain gluten. About 8-9 months ago I started losing weight, felt extremely fatigued and started getting a lot of headaches and many more migraines than I normally would have. I put it down to stress. Then I got really sick with nausea, some diarrhoea and vomiting over a two week period. I went to my doctor and during the examination I mentioned my weight loss. He asked if anyone in my family had a malabsorption problem. My aunt was diagnosed with Celiac disease about 2 years ago. My doctor asked if I wanted to be tested and because I felt so unwell I said yes (I really didn't have any idea what Celiac disease was). I was treated for ghiardia based on my symptoms and about two weeks later I went off to have my blood test, still feeling tired, but much better. My TTGa test came back postive. I got a referral to a gastroenterologist and had an endoscopy which came back negative. My gastroenterologist advised that I didn't need to make any changes to my diet. I have never noticed tummy symptoms except from eating tomatoes. Two weeks after my appointment to get my endoscopy results I made another appointment to ask the question whether my blood test result now could help to explain my ill health as a child. The short answer, in my doctor's opinion was no. I also asked about my dental enamel defects and geographical tongue. He didn't think there was a link, yet from my understanding from some personal research I have made (paid to subscribe to uptodate.com) would indicate that there is. My three year old son, who has a history of multiple and complex febrile convulsions, also has some enamel changes in his front top teeth (about 1mm from the bottom of each tooth). He has the faintest little rash on the top of his bottom and is often cranky which up until my positive blood test we put down to being a toddler/hungry and/or tired. He has been a slow weight gainer and sits between the 3 and 10th percentile for his weight. I have an appointment with my local doctor this coming Wednesday to talk further about having him tested for Celiac disease. So for me, I remember being often unwell up until the age of 13 and then apart from viral illnesses and being pregnant (twice) I have felt quite well up until about 8 or 9 months ago. I have also noticed that I am losing some hair and only last night experienced left sided flank pain (I get this quite often and have never really thought about it) which I noticed someone else had written about on this post. I have stopped eating uncooked tomatoes although am not gluten free (yet). My gastroenterologist's opinion was because my biopsy was negative and that I didn't have gastrointestinal symptoms (except for that two week period and when I eat tomatoes) that I don't have active disease. If I have understood him correctly, he also didn't think that people are gluten intolerant (he said that he thought people could be wheat intolerant) but not gluten intolerant. I got the feeling (and I am yet to seek a second opinion) that gluten intolerance is not medically recognized, at least by him. Funnily enough the overwhelming feeling of fatigue I had been experiencing has lifted in the past four weeks. My headaches however, haven't improved. I started a food and symptom diary in the past few days so that I can really pay attention to what my body is telling me. Would be very interested to hear if there are others with experiences like mine.
  4. Does anyone know if the TTGa test is specific to gluten only or can it pick up a response to lectin also? Apologies - I posted the same question into the wrong forum (related disorders) - am just new to all of this.
  5. Thank you very much for replying. I am not yet gluten free - my gastroenterologist advised me that I had latent celiac disease based on my positive blood test result and negative biopsy and said that I didn't need to make any changes to my diet at this point in time. At my initial consult he asked if I get mouth ulcers to which I answered no. I didn't connect my geographical tongue to the question or that I often notice tongue pain immediately after eating tomatoes. I have just connected that tomatoes contain lectin and that gluten also contains lectin. I also have tooth enamel defects, experienced stomach pain throughout my childhood, experience migraines (have been more frequent in the last six months, have lost 13kg (unintentially but after having a baby), have felt intense fatigue over the past six months but my iron levels are normal and have mild hair loss... I experienced nausea, vomiting and occassional diarrhoea over a two week period about two months ago which lead to me being tested inconjunction with my unexplained weight loss. I also have a positive family history - my paternal aunt was diagnosed with Celiac disease two years ago. I am wondering if all my symptoms can be linked to eating the lectin from tomatoes rather than gluten?? I am still waiting for some repeat blood test results and have made another appointment to go back to my gastroenterologist. I think there is more to the story than a negative biopsy result. Am just not sure if it will mean that I need to eliminate the tomatoes and/or gluten. Is the TTGa test specific to gluten only or can it also pick up a response to lectin?
  6. Have you looked at foods that contain lectin rather than just gluten? I have a sensitivity to tomatoes which is a nightshade food (others include potatoe, peppers and egg plant). Nightshade foods contain lectin. Gluten also contains lectin. Nightshade foods can cause an autoimmune response in those who are sensitive. Good luck...
  7. 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)...
  8. Can anyone tell me if lectin intolerance to nightshade foods is linked to celiac disease or what the relationship might be if any? I have had a positive TTGa blood test result (on two occassions) but a negative biopsy. I have had a geographical tongue since I was a toddler which I have linked to eating raw tomatoes. Have just discovered that tomatoes are a "nightshade" food which can cause an autoimmune reaction. Have been advised that I have latent celiac disease but have lots of other symptoms (and have had all my life now looking back). Mmm.
  9. 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?
  10. 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?