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Diagnosed Celiac Without Any Gi Symptoms

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Hi,

This is my first post here. I am 40 yr old Indian male and was hospitalized in march due to unexplained Anemia. They ran all kind of tests on me and finally found me B12 deficient. To check the reason for B12 deficiency, they also ran a Celiac test which surprisingly came positive despite I showing no classic symptoms of a Celiac.

I was diagnosed a Celiac through TTiGA and stomach Biopsy. My TTiGA was 52.2 and my biopsy report shows villus atrophy, chronic inflammation and gastritis as below.

biopsyreport1.jpg

Another biopsy check for possible Lymphoma came out negative.

I have been asked to eat gluten free food which I am trying to follow. Since I live in Dubai, there are not many gluten-free food available here and if there is, it's very expensive so I am just sticking with home cooked food, replacing bread with rice. Luckily for me, my wife is a fab cook and most Indian dishes except breads are gluten free which makes life much easier for me.

I still am a lot confused. I've had other autoimmune problems such as hypothyroid and vitiligo but Celiac ?? I mean I do not have any GI symptoms ever in my life, so why did my body not give a slight hint that something is so wrong inside? Even my weight is steady for last 10 yrs or so and my BMI is slightly on the upper range, not low.

Besides how do I manage to know if I get accidentally glutenated? No symptoms. After being gluten free for a month, I unknowingly ate a biscuit and there were no symptoms of any glutening.

Is it possible for me to have some other disorder responsible for my lack of vit B12? My anemia disappeared after b12 injections and I have no other medical issues yet. Are there any further tests which are recommended in my case?

Thanks

San

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You are one of what is called 'silent celiacs'. Those are folks that have the disease but no noticeable GI symptoms. You are still celiac, there is no doubt about that. It may be hard for you since you are not noticing the symptoms that help key us in when we get glutened however after you have been gluten-free for a bit longer you may start to notice other problems that key you in to accidental injestion. Some of us will suffer from neuro symptoms such as depression or anxiety or you may notice joint and muscle pain or headaches, each of us is different in how our symptoms hit. Please don't take the diagnois lightly because of you seeming lack of GI symptoms. Your chances of developing other related diseases is just as high as for those of us who do have severe tummy issues. I had celiac from childhood but didn't develop any gut issues until about 15 years before diagnosis but I did develop lots of other related problems. Many of those have gone into remission. If you already have other autoimmune issues you may see them resolve now that you are gluten free. Welcome to the board, read as much as you can and ask any questions you need to.

In addition please make sure that all your first degree relatives are screened, brothers, sisters, Mom and Dad and your children if you have any.

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Can I ask if the test was painful or uncomfortable? Did they put you to sleep? I'm sorry to intrude, but my doctor wants me to have the biopsy and I am afraid.

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Can I ask if the test was painful or uncomfortable? Did they put you to sleep? I'm sorry to intrude, but my doctor wants me to have the biopsy and I am afraid.

I was put to sleep via General Anesthesia. No pain whatsoever. Didn't even notice any throat discomfort afterward.

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Can I ask if the test was painful or uncomfortable? Did they put you to sleep? I'm sorry to intrude, but my doctor wants me to have the biopsy and I am afraid.

Here in the US, mine was done under conscious sedation. No pain or discomfort, at least that I remember... One drug they gave me was a mild sedative, though not supposed to have put me totally under. The other drug they gave me induced temporary amnesia, so when I was coming out of it, I asked the same set of questions 5-7 times in a row at 3-5 minute intervals and didn't remember asking them or getting the answers to them (all this was recounted to me later). Irritates me that my discussion with the doctor about the results of the scope occurred DURING this time, so I had to get the info second-hand from my husband later, but such is life I guess...

Nothing to be afraid of at all.

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You are one of what is called 'silent celiacs'. Those are folks that have the disease but no noticeable GI symptoms. You are still celiac, there is no doubt about that. It may be hard for you since you are not noticing the symptoms that help key us in when we get glutened however after you have been gluten-free for a bit longer you may start to notice other problems that key you in to accidental injestion. Some of us will suffer from neuro symptoms such as depression or anxiety or you may notice joint and muscle pain or headaches, each of us is different in how our symptoms hit. Please don't take the diagnois lightly because of you seeming lack of GI symptoms. Your chances of developing other related diseases is just as high as for those of us who do have severe tummy issues. I had celiac from childhood but didn't develop any gut issues until about 15 years before diagnosis but I did develop lots of other related problems. Many of those have gone into remission. If you already have other autoimmune issues you may see them resolve now that you are gluten free. Welcome to the board, read as much as you can and ask any questions you need to.

In addition please make sure that all your first degree relatives are screened, brothers, sisters, Mom and Dad and your children if you have any.

Many thanks Raven for your detailed reply. I've been reading posts here at the forum and I totally understand what you mean. There are still some questions such as..

1. How do I know for how long I have been a Celiac? How did you come to know that you were a Celiac since childhood? Is there any test to find out?

2. You say my other autoimmune problems may be resolved. Well that's the best news I ever heard as I thought autoimmune disorders are not curable. I hope my thyroid becomes active again. Also does it mean I will not get any other autoimmune problems such as diabetes and arthritis?

Regards

San

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Many thanks Raven for your detailed reply. I've been reading posts here at the forum and I totally understand what you mean. There are still some questions such as..

1. How do I know for how long I have been a Celiac? How did you come to know that you were a Celiac since childhood? Is there any test to find out?

2. You say my other autoimmune problems may be resolved. Well that's the best news I ever heard as I thought autoimmune disorders are not curable. I hope my thyroid becomes active again. Also does it mean I will not get any other autoimmune problems such as diabetes and arthritis?

Regards

San

1. For many of us it is difficult to tell when the disease first hit. Most have a triggering event but not all can pinpoint it. I am able to because I had DH, the skin form of celiac from the time I was about 6. My trigger was being impaled. Shortly after that I was diagnosed with 'poison ivy in my blood stream' to explain how I got the itchy blisters 12 months out of the year. I had my arms and legs covered in oozing itchy blisters. About that time I developed issues with balance which was attributed to congenital defects in my legs and feet. The balance issues did not resolve even after surgeries and months of PT and continued to get worse throughout my life, until I went gluten-free. By the time I was diagnosed I was thought to have MS and could not walk unaided. The blisters and balance issues resolved gluten-free after I was finally diagnosed. The DH is gone completely but the ataxia is still present to some extent but I can walk unaided now.

2. I can't say for sure that your other autoimmune issues will resolve completely, they may not. You may get some relief from them, I hope you do. As far as developing other autoimmune issues goes unfortunately some of us still do develop others after being gluten-free so I can't give any certainty that you won't but your chances will be decreased greatly. As far as thyroid issues go many of us have seen them resolve gluten-free so do keep in touch with your doctor so testing can be done as your thyroid meds may need to be adjusted after a bit. Make sure those meds are gluten-free.

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Many of us have thyroid disease as well. I have not noticed any change in my disease since being gluten free. That would be wonderful if you experience that benefit. I think it depends on the amount of disease you have, whether you will experience benefit from being gluten-free.

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Many thanks Raven for your detailed reply. I've been reading posts here at the forum and I totally understand what you mean. There are still some questions such as..

1. How do I know for how long I have been a Celiac? How did you come to know that you were a Celiac since childhood? Is there any test to find out?

2. You say my other autoimmune problems may be resolved. Well that's the best news I ever heard as I thought autoimmune disorders are not curable. I hope my thyroid becomes active again. Also does it mean I will not get any other autoimmune problems such as diabetes and arthritis?

Regards

San

Hello San!

It must be very difficult to have Celiac without any gastric symptoms. You are correct, how do you know when you have been glutened? :o

As you are not in the US, you probably eat a better diet than many here without Celiac eat so you will probably do just fine. It also helps being married to a good cook!

For many who know they triggered as a child, myself included, it usually is a knowledge which comes with knowing what to look for once diagnosed.

I had many stomach problems going all the way back to the age of 4. I am small in stature and weight and could always eat as much as I wanted...another clue. You can never know for sure at what exact time you trigger but can come pretty close with symptoms that you suffered from. It can be very confusing for those who do not present with classic Celiac....you never had GI symptoms and you say you are not underweight.

However, Celiacs come in many sizes so you can't always go by that.

As for other autoimmune problems clearing up, I wouldn't be too hopeful they will go away. Once triggered, autoimmune diseases do not go away, they go into remission. I also have Hashi's thyroid disease and mine has improved dramatically but it's still there and I have to take thyroid hormone to replace what I do not make. However, since healing of my intestinal tract has occurred and I am now absorbing, the dosage has almost been cut in half and I am doing very well. You will also if you follow the diet and don't cheat.

As for your B12 deficiency clearing up, if they gave you injections, you are by-passing the stomach so that would clear it up. Until you start absorbing fully again, meds given by mouth may not work or work as well as they should.

I wish you well....stay with us and ask questions. This is a knowledgeable group of people and you'll get good answers to your questions. Consider yourself lucky that you were able to get a diagnosis, with no symptoms other than anemia. It will save you many years of illness.

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1. For many of us it is difficult to tell when the disease first hit. Most have a triggering event but not all can pinpoint it. I am able to because I had DH, the skin form of celiac from the time I was about 6. My trigger was being impaled. Shortly after that I was diagnosed with 'poison ivy in my blood stream' to explain how I got the itchy blisters 12 months out of the year. I had my arms and legs covered in oozing itchy blisters. About that time I developed issues with balance which was attributed to congenital defects in my legs and feet. The balance issues did not resolve even after surgeries and months of PT and continued to get worse throughout my life, until I went gluten-free. By the time I was diagnosed I was thought to have MS and could not walk unaided. The blisters and balance issues resolved gluten-free after I was finally diagnosed. The DH is gone completely but the ataxia is still present to some extent but I can walk unaided now.

2. I can't say for sure that your other autoimmune issues will resolve completely, they may not. You may get some relief from them, I hope you do. As far as developing other autoimmune issues goes unfortunately some of us still do develop others after being gluten-free so I can't give any certainty that you won't but your chances will be decreased greatly. As far as thyroid issues go many of us have seen them resolve gluten-free so do keep in touch with your doctor so testing can be done as your thyroid meds may need to be adjusted after a bit. Make sure those meds are gluten-free.

Hi Raven, It seems you have gone through a lot, mostly due to misdiagnosis. Even if they couldn't relate the Ataxia to celiac, the DH was the telltale sign. At least the DH should have been diagnosed right at the beginning. You must've been real mad at them for not doing enough early on.

I was diagnosed with Vitiligo at age 23 and was told it is not curable, yet can be controlled with phototherapy. They were right and though one can keep it down for a while by spending ridiculous amount of money on phototherapy sessions, it would always resurface back with vengeance after a while. It went from bad to worse, spreading painfully slow to cover around 20% of total skin area and to add to the woes, mostly visible areas. It's not physically painful, but psychologically traumatic. So at age 37, I finally decided to go MJ way and depigmented overall. It's been the best treatment yet and now vitiligo is part of history for me.

My skin has become a bit sensitive to the sunlight though and was sunburned recently after a full summer afternoon at beach. Skin went into horrible itching mode while recovering from it and I still have to take anti histamines to get temporary relief from it.

Regarding my thyroid which was discovered at same time as my vitiligo, well it has never bothered me much as long as I keep taking my daily dose of thyroxin. It could also be the reason that my weight has been steady at 194 lbs for a height of 6'-0". It may look like a lot but I've no complaints as there is no tummy or anything.

I would, however be like to be as much away from diabetes, arthritis and osteoporosis as possible. My dad had diabetes and mom had arthritis. Is there anything advised to keep them away at a distance in addition to go gluten free?

Thanks again Raven, you've been extremely kind to patiently answer my doubts.

regards

San

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Many of us have thyroid disease as well. I have not noticed any change in my disease since being gluten free. That would be wonderful if you experience that benefit. I think it depends on the amount of disease you have, whether you will experience benefit from being gluten-free.

I guess It depends on whether the thyroid gland was attacked and fully/partially destroyed by the autoimmune disorder or is it still intact and just inactive.

I was on 150mcg at the time of diagnosis of Celiac and my TSH was 0.13 which is borderline hyperthyroid. I was told to reduce the intake to 125mcg of thyroxin and I still have to test it again.

Regarding the benefit of being gluten free on my thyroid, It is still too early to tell but will keep my fingers crossed.

cheers.. San

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Hello San!

It must be very difficult to have Celiac without any gastric symptoms. You are correct, how do you know when you have been glutened? :o

As you are not in the US, you probably eat a better diet than many here without Celiac eat so you will probably do just fine. It also helps being married to a good cook!

For many who know they triggered as a child, myself included, it usually is a knowledge which comes with knowing what to look for once diagnosed.

I had many stomach problems going all the way back to the age of 4. I am small in stature and weight and could always eat as much as I wanted...another clue. You can never know for sure at what exact time you trigger but can come pretty close with symptoms that you suffered from. It can be very confusing for those who do not present with classic Celiac....you never had GI symptoms and you say you are not underweight.

However, Celiacs come in many sizes so you can't always go by that.

As for other autoimmune problems clearing up, I wouldn't be too hopeful they will go away. Once triggered, autoimmune diseases do not go away, they go into remission. I also have Hashi's thyroid disease and mine has improved dramatically but it's still there and I have to take thyroid hormone to replace what I do not make. However, since healing of my intestinal tract has occurred and I am now absorbing, the dosage has almost been cut in half and I am doing very well. You will also if you follow the diet and don't cheat.

As for your B12 deficiency clearing up, if they gave you injections, you are by-passing the stomach so that would clear it up. Until you start absorbing fully again, meds given by mouth may not work or work as well as they should.

I wish you well....stay with us and ask questions. This is a knowledgeable group of people and you'll get good answers to your questions. Consider yourself lucky that you were able to get a diagnosis, with no symptoms other than anemia. It will save you many years of illness.

Thanks Gemini for your valuable input :). Yes, I can already feel that I am at the right place and that there are hundreds of people around the world who are here, willing to help out others with Celiac and Gluten related issues.

Coming to think of it, I guess I've had some small vague non gut related symptoms such as brain fog, excessive sleepiness (even during driving), short term memory problems etc in the past but I could've easily blamed them on my Hashi Thyroid. Also they were temporary and got resolved on their own in some time. I also got rid of some small but embarassing gut issues the moment I switched to gluten free diet. Overall I am happy that the main culprit was found without too much damage done and that I need to be extra vigilant about my diet.

I did take an appointment with my GI doc yesterday to take the result of my biopsy done to check possible lymphoma. Thankfully it was negative and then I was tested again for my anemia and Vit B 12 levels, the results of which are awaited. I also asked him if he has seen many patients from Indian subcontinent with Celiac and he said not from Indian subcontinent but that he is seeing a lot of new patients in Iraq (his native country) and it is like an epidemic there. Am I right in presuming that prolonged psychological stress could be a strong trigger for Celiac? I have myself seen both my vitiligo and thyroid problem growing during periods of mental stress.

Does eating gluten free food help manage the stress too?

cheers

San

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Coming to think of it, I guess I've had some small vague non gut related symptoms such as brain fog, excessive sleepiness (even during driving), short term memory problems etc in the past but I could've easily blamed them on my Hashi Thyroid. Also they were temporary and got resolved on their own in some time. I also got rid of some small but embarassing gut issues the moment I switched to gluten free diet. Overall I am happy that the main culprit was found without too much damage done and that I need to be extra vigilant about my diet.

I did take an appointment with my GI doc yesterday to take the result of my biopsy done to check possible lymphoma. Thankfully it was negative and then I was tested again for my anemia and Vit B 12 levels, the results of which are awaited. I also asked him if he has seen many patients from Indian subcontinent with Celiac and he said not from Indian subcontinent but that he is seeing a lot of new patients in Iraq (his native country) and it is like an epidemic there. Am I right in presuming that prolonged psychological stress could be a strong trigger for Celiac? I have myself seen both my vitiligo and thyroid problem growing during periods of mental stress.

Does eating gluten free food help manage the stress too?

cheers

San

Yes stress can be the trigger for celiac for some people. For myself it has helped with my reaction to stress. I am much more capable of handling what comes my way without the 'meltdowns' that I used to suffer. I am also free of depression for the first time since childhood. It is nice not to live under that cloud.

I had embrassing gut symptoms like constant stomach growling and gas since childhood but was told they were normal. Both are gone now gluten-free and tummy growling is one of the first signs I have been glutened. A reappearance of that type of symptom may turn out to be a key in knowing if you have been glutened. My exhusband suffered from extreme sleepiness, he could fall asleep at any time even in the middle of a conversation. He was tested after I was and was also positive and that was relieved by the diet.

I find it interesting that they have found few patients where you are that are from India that are diagnosed celiac. Mainly because the genes I have a double dose of are genes that are recognized as celiac genes in the Far and Middle East but not often recognized as being celiac related here in the US. Here gene testing would have left me with a diagnosis of rhuematoid arthritis. I am thus very, very thankful that I wasn't gene tested until 5 years after diagnosis.

Celiac symptoms are often mistaken for symptoms of other diseases and disorders and hopefully the diet will help you with the brain fog and sleepiness along with the memory issues.

Be sure to tell your doctor if you take a vitamin with folate as that can skew the B12 levels into normal levels when they are not. If you are still having or redevelop issues with brain fog and energy you may want to add a sublingual B12 to your vitamin regime.

Thankfully you were diagnosed before your body had been too severely damaged. You are fortunate you had a doctor wise enough to test for it.

I hope things resolve quickly for you.

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