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Jennifer S.

COMPLETELY silent celiac

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9 months ago I went to my doctor for normal blood work.  She called me to tell me everything looked great, but o yeah, my gluten sensitivity levels were extremely high.  I should probably stop eating gluten since it looks like I have celiac.  She hung up and I never heard from her again.  I cut out gluten completely, even though I have never experienced one single symptom of celiac.  9 months later, I decided to reach out to another doctor to get a second opinion, as I experienced absolutely zero change on 9 months of strict gluten free diet.  All this doctor did was request the results from the previous doctor, tell me it is confirmed I have celiac, and hung up the phone.  This angers me tremendously on two counts.  One, I have absolutely zero symptoms of celiac, and would NEVER know if I was "glutened".  Two, the complete lack of information or support from both doctors is horrifying to me.  And finally, I simply do not believe the diagnosis and as considering just starting to eat a normal diet again.  I would never know the difference.  I am really just venting because this situation upsets me so much, and I have suffered mentally and socially from going gluten free.  Since I have absolutely zero symptoms, even if I was actually celiac, I highly doubt anything would ever come of it if I continued to eat gluten.  I could just pretend I never heard from either terrible doctor and go on living my life.  Someone has to have been in the same situation as me, right?

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Welcome to the forum.  First, you need to get copies of your celiac test to confirm you actually had it done and what the results were.  Second, to confirm a diagnosis, you must obtain biopsies via an endoscopy.  Were the doctors gastroenterologists?  Third you need to research  celiac disease.  Yes, you can be asymptomatic, but could still have instestinal damage as the small intestine is vast.

here is a good place to start:

 http://www.cureceliacdisease.org/screening/

You might think you are a silent celiac, but ever been anemic?  Had your bones checked?  

Edited by cyclinglady
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I have never had bone issues or anemic.  Honestly nothing.  If anything my energy levels have dropped since going gluten free, not the other way around.  I attribute it to the anxiety and mild depression caused by the diagnosis.  Before that I was extremely happy, healthy, with absolutely nothing to indicate anything at all is wrong.  The doctor told me that I don't need the additional test... I don't know why.  I guess the blood work was enough for them.  I requested that they send me the blood test results after the second doctor didn't give further insight.  But it will be a week or so before they arrive.  It's just so incredibly frustrating.

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It seems strange to be tested for celiac or gluten sensitivity if you have no symptoms, unless you have a close relative with celiac.  It will be interesting to see what sort of test was actually performed.  

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That's what I thought!  My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that.  He never had the biopsy either.  I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all.  My doctor didn't even offer the biopsy, and said the blood work was enough.  Should I seek a third opinion?  I mean, I've been gluten free for 9 months...

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Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As:

I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing.

The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean.

I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way.

Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant.

So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences".

Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive.

He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day.

At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35.

A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would.

I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came.

I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest. 

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA

Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.). 

The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options:

Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results).

If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control.

Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now.

Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign.

Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.

Edited by glutenfreekiddo
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11 hours ago, Jennifer S. said:

.  I am really just venting because this situation upsets me so much, and I have suffered mentally and socially from going gluten free.  Since I have absolutely zero symptoms, even if I was actually celiac, I highly doubt anything would ever come of it if I continued to eat gluten.  I could just pretend I never heard from either terrible doctor and go on living my life.  Someone has to have been in the same situation as me, right?

Hi Jennifer and welcome :)

CyclingLady has given you some good advice above. You want certainty and that's entirely understandable. Go back to your doctors and explain that you need to know a little more and hopefully they will engage positively with you. If they don't, then do pursue a second opinion. 

I just wanted to address your last paragraph quoted above. The problem with celiac, or in my case non celiac gluten sensitivity, is that it presents or doesn't present in so many different ways. It can do hidden damage which may take many years to become apparent. It can impact in ways which are incredibly difficult to recognise or isolate. 

I am 'lucky' in that the way that gluten impacts on me is far worse than any mental or social isolation brought upon by the diet, so motivation is easy for me, even without the certainty of a celiac diagnosis, there really is no alternative, I don't think I'd last long on a gluten diet now. But I can well understand how difficult it may be to stay honest on the diet if you don't have any symptoms to deal with. The diet can be isolating, there does become a distance between you and 'normal' people. Who would want to deal with all that if they didn't have to?

If you aren't satisfied with your doctors  responses and choose to go back onto gluten I suggest you find another doctor and go back into the diagnostic process and properly exclude celiac, including a scope. Otherwise you could be taking a big risk with yr long term health. You may find that this process supplies you with an answer as if your diagnosis was correct your response to the reintroduction of gluten may surprise you, or not of course!

best of luck! 

 

 

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All the above posts are full of good advice. What I'd like to add is, if you have coeliac disease and continue to eat gluten, you run the risk of other autoimmune diseases in the future as well as osteoporosis, malnutrition and even cancer, so even if you had no symptoms at the beginning, and may also not have any symptoms if you eat gluten (not all coeliacs do), the damage is still being done to your gut and the rest of your body, so please be aware of this.

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Hi Jennifer,

This thread might have some information that would help you.   Your doctors are pretty lame IMHO.  Perhaps you can find a celiac group in your area that has local meetings for support.  They might also suggest a different doctor who knows how to treat celiac patients.

 

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I will say what everyone else says and get tested again with the endoscope and biopsy to confirm, you will need to be on gluten for 12 weeks for blood test 2 weeks for endoscope at least a slice of bead a day. 

The thing about celiac is many symptoms can be quite minor, hell even before I had my MAJOR symptoms show I had some of the other issues show up in my every day life and I just thought it was normal.  Regardless if you keep eating gluten with celiac disease it will slowly eat away at your body internally til it does become a problem. Celiac is a autoimmune disease that reacts to the gluten proteins, and has misdirected attacks on your own body internally by mistake trying to kill the gluten. Now the damage can lead to all kinds of other auto immune diseases, random allergies, food intolerance, and even cancer.  

I suggest if you do have it, stay on the gluten-free diet, your just basically changing brands there are many gluten-free food versions of everything now days. Be thankful you got this early, I developed issues with dairy, corn, peanuts, and a whole list of others along with another autoimmune disease Ulcerative Colitis that makes it so I can not eat sugars or carbs or my intestines swell.  Getting on a gluten-free diet before your damage progresses will not only keep you healthier for longer, and let you live a pretty normal life but also save you from this pain and very limited diet if the damage progresses too much.

As to your fatigue, you changed over to gluten-free diet, you stopped eating a bunch of the Fortified foods, and depending on the route you took of either whole foods ore more processed foods. You could be eating to many empty carbs, starches, and not enough nutrients. OR if you took the whole foods approach you be lacking in your daily calorie intake or not the right ratio of nutrients. You might have to supplement a few of them.

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9 hours ago, glutenfreekiddo said:

Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As:

I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing.

The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean.

I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way.

Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant.

So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences".

Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive.

He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day.

At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35.

A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would.

I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came.

I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest. 

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA

Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.). 

The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options:

Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results).

If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control.

Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now.

Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign.

Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.

Love reading this story as it is rare (I think) to find someone else with the swallowing issues!  Hate that this is your experience however!   My daughter also has the swallowing issues and it got so severe (we had no idea about Celiac) that she had to do intensive therapy to learn how to swallow again.  It got better but never resolved.  Once she went gluten-free it got way better though a recent exposure to oats caused it to flare up again.  Do you mind me asking - Has your swallowing issues 100% resolved being gluten-free?  Does it ever actually go away and stay away or will it always pop up from time to time?

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2 hours ago, GFinDC said:

This thread might have some information that would help you.

There's a great post by Tarnalberry in that thread. 

 

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12 hours ago, glutenfreekiddo said:

 

Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign.

 

Although this was an incredibly informative and great post, I only took exception to one thing you said and that is what I put in bold lettering above. Eating gluten free is very healthy, if done correctly. The Western American diet is very unhealthy but it doesn't have to be either.  If you feel badly after being on the gluten-free diet for awhile, you either have an intolerance or allergy to something you are eating or you are not eating the right foods....gluten-free or not.

I am glad they found out you had Celiac, even though most people do not want that news.  The things that can happen from going a long time undiagnosed are not pretty and can cause more grief than Celiac itself.

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8 hours ago, Jmg said:

There's a great post by Tarnalberry in that thread. 

 

Yep.  The one that is most relevant I think is the post by Backtalk.  Backtalk went back on gluten and have to a colostomy done on an emergency basis.  Not fun.  She regretted ignoring the gluten-free diet.

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15 minutes ago, GFinDC said:

Yep.  The one that is most relevant I think is the post by Backtalk.  Backtalk went back on gluten and have to a colostomy done on an emergency basis.  Not fun.  She regretted ignoring the gluten-free diet.

I didn't read that far. 

Yikes... A hefty dose of perspective in that one. 

For anyone reading this is the post:

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I have celiac and eosinaphalic esophagitis.  I was put on a steroid inhaler recently.  I use it like an inhaler but swallow the air instead of breathing it in.  You may want to look into EOE and it's relationship to celiac.  Just a thought. My swallowing and celiac seem to be related.

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On 4/25/2017 at 4:19 PM, Jennifer S. said:

9 months ago I went to my doctor for normal blood work.  She called me to tell me everything looked great, but o yeah, my gluten sensitivity levels were extremely high.  I should probably stop eating gluten since it looks like I have celiac.  She hung up and I never heard from her again.  I cut out gluten completely, even though I have never experienced one single symptom of celiac.  9 months later, I decided to reach out to another doctor to get a second opinion, as I experienced absolutely zero change on 9 months of strict gluten free diet.  All this doctor did was request the results from the previous doctor, tell me it is confirmed I have celiac, and hung up the phone.  This angers me tremendously on two counts.  One, I have absolutely zero symptoms of celiac, and would NEVER know if I was "glutened".  Two, the complete lack of information or support from both doctors is horrifying to me.  And finally, I simply do not believe the diagnosis and as considering just starting to eat a normal diet again.  I would never know the difference.  I am really just venting because this situation upsets me so much, and I have suffered mentally and socially from going gluten free.  Since I have absolutely zero symptoms, even if I was actually celiac, I highly doubt anything would ever come of it if I continued to eat gluten.  I could just pretend I never heard from either terrible doctor and go on living my life.  Someone has to have been in the same situation as me, right?

Ok, two things:

1. I never had symptoms either. I'm 29 and I've always been healthy. Never had bad blood work. Never had any issues. I had two healthy pregnancies and never in a million bazillion years thought I had celiac. Last September I got a weird stomach bug and it just wouldn't get better. After about 3 weeks I started wondering what the heck was going on. So I went to the health fair and got tested for Celiac, because my mother has 3 siblings who have it. My numbers came back high. I had an endoscopy in November to confirm. My toddler has it too. My damage was pretty significant, but normal for someone with Celiac. So, while that weird stomach bug may have been the beginning of my symptoms (I still don't know if had anything to do with my Celiac), I had Celiac for a while before I found out. There's no way that I could have developed the damage I had in 3 weeks. So I think it's totally possible to be a silent Celiac. I have always wondered how I'd know if I were glutened. All I've heard is that after not eating gluten for a long time I'll know. That's always made me a little nervous. 

2. You doctors gave you really crappy advice. They should have told you that your numbers were high, to remain on a normal diet, and make an appointment with a GI specialist. That way you could have had an endoscopy and a biopsy to confirm your diagnosis. Telling you to stop eating gluten was really stupid of them. Because after 9 months you're probably not going to show much damage in an endoscopy. That said, I think it's likely you have Celiac. The tests they run are very sensitive. In fact, I asked my GI what he'd recommend if my endo came back normal, and he said, you wouldn't have numbers like this if you weren't reacting to gluten, so I'd still want you to be on a gluten free diet. 

To be honest, I don't feel much different either. I'm still tired like I used to me. My anxiety hasn't gone away. My stomach seems much better. I never realized it wasn't stellar until I stopped eating gluten. Now I'm not bloated, I rarely have intestinal cramping, I don't really have gas pains. That weird bug I had went away. 

So I was kinda in your situation. I didn't have signs. I was shocked when I got the test back. Shocked. I never had the GI issues, the rashes, etc. I grew up with Celiac and never thought I had it. My parents don't have it. But it's a super common AI disorder. My biopsy confirmed it for me, so I never second guessed it. And I had a family history to give me more proof that I could have it. 

If you don't mind the thought of eating gluten again you could always start eating it again for a few months so that you can do an endoscopy and a biopsy later. A lot of people do these gluten challenges so that they can actually be TOTALLY tested. Like I said, I think you probably have it. Those Celiac tests are pretty sensitive. My doctors were sure I had it. The rates of false positives are pretty low. And other AI disorders can raise them, but it's not likely. 

Being gluten free sucks. It sucks bad at first. Eating out has gone out the window for me. The inconvenience sucks. I can't take part in pot lucks or work functions. I have to eat first or bring my own food. It sucks. But, I'm lucky that if I have an AI issue I can control it with my diet and feel ok as long as I don't eat gluten. And I've learned to adapt. I guess I didn't have a choice.

And then there are the folks who know they have Celiac and don't care, and they eat gluten anyway. And that's their choice, but they're poisoning their bodies. To each their own.

I know it sucks. I get it. I was shocked too. But chances are, you'd have developed symptoms eventually. You may have had this for a short time or a long time. There's really no way to know. But sometimes our bodies compensate really well. My iron levels were always good. I never in a million years suspected I had this. Never. 

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Also, I had my bones checked a few months back (In January), and they were awesome. I'm still shocked at how well my body did with Celiac. I hear about all of my friends on here who had crazy horrible symptoms and I never did. I'm grateful. Because those ugly things would come eventually.

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On 4/25/2017 at 8:09 PM, Jennifer S. said:

That's what I thought!  My father has gluten sensitivity and I almost regret telling the doctor that because I feel that made her jump to conclusions because of that.  He never had the biopsy either.  I feel like doctors think it's just easier to say it's celiac when they show a gluten sensitivity to avoid additional testing, even if that diagnosis doesn't make any sense at all.  My doctor didn't even offer the biopsy, and said the blood work was enough.  Should I seek a third opinion?  I mean, I've been gluten free for 9 months...

Ask them for a copy of your results and find a good gastroenterologist in your area. Go there and give them the results. That's what I did. I didn't even bother with my GP. I got the results from the health fair and called a GI in Denver. My insurance didn't require a referral. My GI was the one who put me on the track to being accurately diagnosed. And regardless, you need to be hooked up with a good GI if you've got Celiac so that they can follow you. 

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don't forget how sneaky celiac is:  i never noticed how incredibly awful i felt (and it was over a long period of being undiagnosed/never heard of celiac until it almost killed me) because it creeeeeeped up.  a little migraine here, a little neck pain there, allll the gi symptoms, a little rashy rash here, a little pneumonia there, a little less energy here, a little weight loss there.  it's not, oh, i ate gluten and now i feel like a truck hit me and you can pinpoint exactly what you ate.  nope.  it's constant inflammation that messes everything up and causes symptoms that most people don't connect as being caused by the same thing.  i never knew how terrible i felt until it started going away.   and even then, it was like peeling an onion:  things went away a little at a time (haha i had a 'background headache' that i didn't even know i had until one day i woke up and it was gone!!)  good luck :)

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From what I have read online there is about a 1-3% chance of getting a false positive for celiac disease from a blood test.

Was it a blood test that you got done? 

 It may be worth your while to get a biopsy or more testing just to confirm it.  I know being gluten free is a pain but it is better than getting cancer or other auto immune disorders. 

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If your doctor gave you a tis transglutaminase tTG blood test, and your number was atleast 150 (normal is less than 15), by standards of diagnosing celiac in Europe, and now apparently in the USA (according to my pediatric gastroenterologist) , you are confirmed celiac with no need for an upper endoscopy.

Edited by *Allie*

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On 4/26/2017 at 9:02 AM, Mermaid's Mom said:

Love reading this story as it is rare (I think) to find someone else with the swallowing issues!  Hate that this is your experience however!   My daughter also has the swallowing issues and it got so severe (we had no idea about Celiac) that she had to do intensive therapy to learn how to swallow again.  It got better but never resolved.  Once she went gluten-free it got way better though a recent exposure to oats caused it to flare up again.  Do you mind me asking - Has your swallowing issues 100% resolved being gluten-free?  Does it ever actually go away and stay away or will it always pop up from time to time?

Hi! I haven't been gluten free for very long - since about January of 2017, but since then my swallowing issues are starting to become less noticeable. I still have "loud" swallowing and food that sticks maybe once or twice a week, but this is really reduced from having these problems and more at nearly every meal. I have been told by my GI that the swallowing issues might completely resolve. Also, some celiacs and gluten-sensitives actually do react to the oats. Oats are a peculiar case because alone they do not contain gluten, but are nearly always stored with gluten products (wheat, rye, barley) during it's farming phase unless you buy specifically gluten free oats. 

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Interesting thread. Thank you for sharing. To make a long story short, after two endoscopies (the first one was just a check up), 3 blood tests and two biopsies, I have also been diagnosticated with Celiac. I have absolutely no symptoms after eating or no eating gluten. It is a little frustrating, but I feel fortunate when I read all the suffering endured by many Celiac's patients. Recently, I have noticed some pain in my neck when I turn my head in both directions. Could it be an inflammation due to gluten absorption? I had my endoscopy last week, and my doctor confirm Celiac. I am 58 years old and since I do not have any symptoms at all, I don't know what to do. Sometimes, I wish I did not do this first endoscopy. Thus, I would not have know and I would have go on my regular diet. Also, during my two months gluten free experience, I have noticed that many non gluten productS are full of questionable ingredients. So I do not know to do: continue my regular gluten diet or opting for a non-gluten diet. I am aware that people with silent Celiac still damage their villi. But is it really proved? Also I am not sure whether or not a Gluten free diet is healthy... Just some thoughts in bulk... Have a great week-end.

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8 minutes ago, Johnny55400 said:

Interesting thread. Thank you for sharing. To make a long story short, after two endoscopies (the first one was just a check up), 3 blood tests and two biopsies, I have also been diagnosticated with Celiac. I have absolutely no symptoms after eating or no eating gluten. It is a little frustrating, but I feel fortunate when I read all the suffering endured by many Celiac's patients. Recently, I have noticed some pain in my neck when I turn my head in both directions. Could it be an inflammation due to gluten absorption? I had my endoscopy last week, and my doctor confirm Celiac. I am 58 years old and since I do not have any symptoms at all, I don't know what to do. Sometimes, I wish I did not do this first endoscopy. Thus, I would not have know and I would have go on my regular diet. Also, during my two months gluten free experience, I have noticed that many non gluten productS are full of questionable ingredients. So I do not know to do: continue my regular gluten diet or opting for a non-gluten diet. I am aware that people with silent Celiac still damage their villi. But is it really proved? Also I am not sure whether or not a Gluten free diet is healthy... Just some thoughts in bulk... Have a great week-end.

Hi Johnny,

IMHO, having silent celiac is tougher in some ways.  You don't have symptoms to tell you if you if consumed gluten, so you have to learn to be careful anyway.  You are right that silent celiac can still cause health issues.

In the case of villi damage, the impact is that we can't absorb nutrients well.  Nutrients like vitamins and minerals and fats and sugars.  Things we need for our bodies to heal and maintain their cells. 

You may have trouble absorbing fat soluble vitamins, like vitamin D.  Or you may become low on vitamin B-12 and develop nerve related issues.  You may have trouble sleeping due to not being able to absorb magnesium, or have weak bones from lack of calcium absorption.  Your hair may get brittle and break easily, or fall out.  If you were a child you might not grow to normal height, or your teeth might rot from lack of enamel. 

Basically, a person with untreated celiac disease damage is starving on a normal diet.  So there are lots of potential problems that can happen.  This is just a short listing.

You are also right that many processed/baked gluten-free foods are lacking in good nutrition.  And they cost more!  That's why it is good to change your diet to mostly avoid processed foods.  Instead stick with mostly meats, veggies, nuts, and fruit.  These things are actually food.  Sometimes we call them whole foods.  They have very few ingredients, usually one ingredient in fact.  Anything with more than 3 ingredients is less desirable in your diet.  Dairy is often a problem at first also.

One thing to consider is that celiac damage can lead to other food intolerances.  I can't eat nightshades, dairy, carrots, celery, soy, etc.  Probably because I had untreated celiac damage for years and my body developed these additional food intolerances.

Anyhow, it takes some time to adjust to any new diet.  And the gluten-free diet is the same, except that it is medical diet, not a personal preference diet.  I generally think it takes people about 6 months to adjust to eating gluten-free.  But it is 6 months well spent.

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