I Had Antiendomysial Ab Titer Of 1:40, Do I Have celiac disease?

[dogle]

Hi, I'm new in this forum. My story is very long to tell though I'm going to summarize it the best way possible. I'm 30 years old and living with terrible symtpms ever since I was 6 years old. Well my story goes like this:

I remember having abdominal pain and bloating when I was a kid, I remember telling my mother and father about this but they never really payed attention to my symptoms. During those years I remember I couldn't stand jeans and or any kind of pants that could't strech to accomodate the changes of my belly (bloating). I also suffered from chocolate allergy during that time, every time I ate chocolate I would get these terrible urticaria, hives and wheals every where in my body, I had to take off my shoes since every toe would swallow, the same thing happened to my fingers, lips and eyelids. Just imagine being a kid and not being able to eat chocolate or even going to the parties without feeling normal since I always had to hide in order to expel the gas that accumulated over the day. I also remember my father being so enthusiastic about me going into american football, I remember myself being tired all the time, extreme fatigue that my coach punished me for being lazy and had me running around the field all the the time.

Anyways, when I was a teenager I was no longer allergic to chocolate, it suddenly dissapeared, God knows why and how, however I started to have allergic rhinitis or hay fever every year. I also noted that I was geting more bloted as the time passed, every afternoon I had a belly that resemble of a 15 months pregnant woman (just kidding) but I blamed the whites of the eggs I had for breakfast, without cooking them, because I was going to the gym and that was a very good source of protein. However, every afternoon I would get so bloated that I had no social life and a practialy isolated myself from the world since it was pretty unconfortable and embarrasing to expel gases every 15 minutes. I also remeber extreme fatigue, and I was very curious about the bumps that appeared every once in a while over my elbows and knees, predominatly over my elbows, sometimes they itched and somtimes they didn't. Again, isolation was my best friend, no social life, I always felt full and bloated, I couldn't stand the feeling of my pants or belt around me. Depression and irritability kicked in just to stay until now.

Now the twenties, it is supposed to be fun, right? NOOOOOOOO It got worse. I was always having flatulance, during the morning, noon, afternoon, night, every single day. I had stopped eating eggs at all. I was bloated every day 15 minutes after waking up. I had breakfast every day and soon after I felt like I was having a balloon under my abdominal skin, tired and depressed. No diarrhea but explosive and semisolid stool once in a while. I rembember dropping out collegue since there was a period of 6 months when I was so tired, depressed, and sleeping everywhere even on the streets just to get rid of this fatigue; dropping college was a big blow to my mother since she couldn't undrstand why a A+ student was leaving his career. Anyways I came back after a break of 2 years and finally finshed but alway feeling so bad durign classes, gas, depression, flatulance, every day. Everytime a girl would approach me I just vanished since I was so bloated and about to expel gas that it would be so embarrasing. No girlfriends till this point . I had this bumps all the time. I would also get a terrible headaches after drinking just one beer and be so bloated next day.

I visited 2 GI doctors 3 internists and they all told me I had IBS, I remember telling everybody about my symptoms and they just looked at me like I was kind of a neurotic person. I took a lot of medicine, antidepressants, antispasmodics, fiber, antigas medication, I had a colonoscopy, Abdominal CT scan, barium swallow and enemas, upper endoscopies, and they all came out negative. I resigned myself, I knew I had to learn how to live and cope with IBS.

Just recently I resigned from an excellent job due to fatigue, after resigning I was so depressed that I didn't eat for two days. Suddenly I realise I didn't have any of the symtoms I was experiencing before. Then I wondered that there must be something wrong with the food I was eating. I stopped drinking milk and changed to soy drink instead, I miracusly improved 80% of the symptoms, then I started to beleive I was lactose intolerant, however I was still having symtoms but no flatulance or extreme bloatness. However everytime I had an apple, grapes I would also get so bloated and crampy that I had to look in the internet and I found I could also have fructose malabsortion (not fructose intolerance, that's another disease). I stopped fruits and improved even better. So I just wanted to invastigate the relationship among IBS, fructose malabsortion and lactose intolerance. Wikipedia says that fructose malabsorion is well related to IBS (50%) and lactose intolerance (10%) but when you have both you may also have celiac disease. (Adendum: I also got burning feet every afternoon)

I recently decided to get some workup done on me, I got a Anti endomysial antibodies titer of 1:40 (nl <1:10), I don't know whether this means I have celiac disease or not, or even whether I should proceed with further tests (transglutaminase antibodies and a biopsy). What do you think people? Please give me some light. Do I have celiac disease? Thank you for taking the time to read my story, I'll wait for you answers.

[ShayFL]

You should CERTAINLY investigate further with more tests. And then if I were you, try the gluten free diet to see if you improve even more. If gluten is your problem and you are celiac, over time you might be able to add dairy and fruit back in.

[ravenwoodglass]

Hi, I'm new in this forum. My story is very long to tell though I'm going to summarize it the best way possible. I'm 30 years old and living with terrible symtpms ever since I was 6 years old. Well my story goes like this:

I remember having abdominal pain and bloating when I was a kid, I remember telling my mother and father about this but they never really payed attention to my symptoms. During those years I remember I couldn't stand jeans and or any kind of pants that could't strech to accomodate the changes of my belly (bloating). I also suffered from chocolate allergy during that time, every time I ate chocolate I would get these terrible urticaria, hives and wheals every where in my body, I had to take off my shoes since every toe would swallow, the same thing happened to my fingers, lips and eyelids. Just imagine being a kid and not being able to eat chocolate or even going to the parties without feeling normal since I always had to hide in order to expel the gas that accumulated over the day. I also remember my father being so enthusiastic about me going into american football, I remember myself being tired all the time, extreme fatigue that my coach punished me for being lazy and had me running around the field all the the time.

Anyways, when I was a teenager I was no longer allergic to chocolate, it suddenly dissapeared, God knows why and how, however I started to have allergic rhinitis or hay fever every year. I also noted that I was geting more bloted as the time passed, every afternoon I had a belly that resemble of a 15 months pregnant woman (just kidding) but I blamed the whites of the eggs I had for breakfast, without cooking them, because I was going to the gym and that was a very good source of protein. However, every afternoon I would get so bloated that I had no social life and a practialy isolated myself from the world since it was pretty unconfortable and embarrasing to expel gases every 15 minutes. I also remeber extreme fatigue, and I was very curious about the bumps that appeared every once in a while over my elbows and knees, predominatly over my elbows, sometimes they itched and somtimes they didn't. Again, isolation was my best friend, no social life, I always felt full and bloated, I couldn't stand the feeling of my pants or belt around me. Depression and irritability kicked in just to stay until now.

Now the twenties, it is supposed to be fun, right? NOOOOOOOO It got worse. I was always having flatulance, during the morning, noon, afternoon, night, every single day. I had stopped eating eggs at all. I was bloated every day 15 minutes after waking up. I had breakfast every day and soon after I felt like I was having a balloon under my abdominal skin, tired and depressed. No diarrhea but explosive and semisolid stool once in a while. I rembember dropping out collegue since there was a period of 6 months when I was so tired, depressed, and sleeping everywhere even on the streets just to get rid of this fatigue; dropping college was a big blow to my mother since she couldn't undrstand why a A+ student was leaving his career. Anyways I came back after a break of 2 years and finally finshed but alway feeling so bad durign classes, gas, depression, flatulance, every day. Everytime a girl would approach me I just vanished since I was so bloated and about to expel gas that it would be so embarrasing. No girlfriends till this point . I had this bumps all the time. I would also get a terrible headaches after drinking just one beer and be so bloated next day.

I visited 2 GI doctors 3 internists and they all told me I had IBS, I remember telling everybody about my symptoms and they just looked at me like I was kind of a neurotic person. I took a lot of medicine, antidepressants, antispasmodics, fiber, antigas medication, I had a colonoscopy, Abdominal CT scan, barium swallow and enemas, upper endoscopies, and they all came out negative. I resigned myself, I knew I had to learn how to live and cope with IBS.

Just recently I resigned from an excellent job due to fatigue, after resigning I was so depressed that I didn't eat for two days. Suddenly I realise I didn't have any of the symtoms I was experiencing before. Then I wondered that there must be something wrong with the food I was eating. I stopped drinking milk and changed to soy drink instead, I miracusly improved 80% of the symptoms, then I started to beleive I was lactose intolerant, however I was still having symtoms but no flatulance or extreme bloatness. However everytime I had an apple, grapes I would also get so bloated and crampy that I had to look in the internet and I found I could also have fructose malabsortion (not fructose intolerance, that's another disease). I stopped fruits and improved even better. So I just wanted to invastigate the relationship among IBS, fructose malabsortion and lactose intolerance. Wikipedia says that fructose malabsorion is well related to IBS (50%) and lactose intolerance (10%) but when you have both you may also have celiac disease. (Adendum: I also got burning feet every afternoon)

I recently decided to get some workup done on me, I got a Anti endomysial antibodies titer of 1:40 (nl <1:10), I don't know whether this means I have celiac disease or not, or even whether I should proceed with further tests (transglutaminase antibodies and a biopsy). What do you think people? Please give me some light. Do I have celiac disease? Thank you for taking the time to read my story, I'll wait for you answers.

You certainly sound like one of us. I would go ahead and get the Ttg done and if you want to do the biopsy. But do be aware that both can have false negatives. If you do plan on furthur testing do not go gluten free yet. You have to actively consuming a full gluten diet for those to even have a chance of being positive. The blood test you already had was clearly a positive result though. The choice to continue with gluten and do furthur testing or just to go gluten-free is up to you. The most reliable 'test' though is the diet, when it is done strictly. Life could be very different for you in a very good way in a few months if gluten is an issue. It does take some getting used to but once you do and you heal you may feel like a different person.

[veggienft]

A "homeless" person sleeps on a steam grate in the winter. His arm gets burned, and he goes to a free clinic. The doc examines his arm. It's red and inflamed. The hair is all burned off.

But the doc says "It must be something besides the steam grate, because there's no skin missing. Go back and sleep on the steam grate until it burns a couple layers of your skin off, then come back to see me. I'll cut off some of the remaining layer, and confirm that it's the only one left".

Pardon my french, but it's cr@p. If it looks like a duck, walks like a duck, and quacks like a duck .......It's a duck.

..

[dogle]

Thank you so much for your answers. I just called the lab where my lab tests were done, I wanted to know how they are interpretated and an immunologist, from the lab, told me that my results strongly suggest celiac disease. I am quite relieved to know what I have now however the biopsy is pending for confirmation. In fact there are more things to add to my medical history. I have a sister who is a type 1 diabetic since she was 13 years old. My mother just told me that my grandmather on my father's side suffered from the same symptoms and an uncle on my father's side had died of somo type of GI cancer when he was 50 something. I am scared I can get cancer however I have read I can prevent it by totally eliminating gluten from my diet.

I also have a sister who has always struggled with weight issues, she is very skinny and complains of muscular aches, headaches, constipation, fatigue, maybe she should be tested too.

Every member of our family, including me, has had premature dental loss I guess is due to the enamel defect or something related.

I will try to keep in touch with you good people, and thank you so much for answering my doubts.

[dogle]

One more thing, does anybody identefies with the kind of life I have gone through? I still doubt what I have after being told so many times I only had IBS.

[ShayFL]

Most of us can identify with the life you have had unfortunately. We know it all too well.

[ravenwoodglass]

One more thing, does anybody identefies with the kind of life I have gone through? I still doubt what I have after being told so many times I only had IBS.

Oh my gosh yes. Be very thankful you showed up in blood work.

[dogle]

Hello everybody, I want to tell you how thing are going right now with me. I already stopped eating food that contains gluten and I'm feeling better everyday. I didn't get an endoscopy and a biopsy since I can't afford them right now. I resigned from my job and I have no health insurance, pretty sad but I'm planning to get a biopsy once I get another job or a health insurance. I recently read that one might get a biopsy from de skin rash (Dermatitits Herpetiformis) and if it comes back with the diangosis of DH and one has positive blood tests for celiac disease one can skip the GI biopsy and endoscopy and be confirmed and diagnosed to have celiac disease. I have DH every once in a while so I think I will go into that direction and avoid the risks for GI endoscopy and biopsy (I know I will have to start eating gluten again so the biopsy can demostrate villi damage). I have improved so much, it's a miracle, I haven't had any flatus (well just 2 small ones during the day ) and I haven't been bloated . Fatigue is starting to go away, I can go out

[ravenwoodglass]

Hello everybody, I want to tell you how thing are going right now with me. I already stopped eating food that contains gluten and I'm feeling better everyday. I didn't get an endoscopy and a biopsy since I can't afford them right now. I resigned from my job and I have no health insurance, pretty sad but I'm planning to get a biopsy once I get another job or a health insurance. I recently read that one might get a biopsy from de skin rash (Dermatitits Herpetiformis) and if it comes back with the diangosis of DH and one has positive blood tests for celiac disease one can skip the GI biopsy and endoscopy and be confirmed and diagnosed to have celiac disease. I have DH every once in a while so I think I will go into that direction and avoid the risks for GI endoscopy and biopsy (I know I will have to start eating gluten again so the biopsy can demostrate villi damage). I have improved so much, it's a miracle, I haven't had any flatus (well just 2 small ones during the day ) and I haven't been bloated . Fatigue is starting to go away, I can go out

[dogle]

By the way I apologize for my English, I'm a Mexican with northern European roots (Asturias Spain and Basque which most of them come from celitc origins), maybe the prevalence is hidden in Hispanics since Hispanics have a lot of celltic heritage from the northen part of Spain. My mother is a strawberry bonde, blue eyes and fair skin and so is my father

[Nancym]

I'm so happy for you, Dogle! Isn't it amazing what a difference a change in diet can make?

P.S. Your english is great!