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[williamsb]

Hello!

 

My name is Brad, i am 24 years old.

 

Growing up i was always ( and still am ) extremely under weight, currently sitting at 6'3 165lbs

 

on Dec 30th 2014 i went to my doctor to go over blood work which came back positive for celiac disease. Im not 100% sure what tests were conducted but what he told me was anything over 15 was considered positive and i was 74? Again im not sure what test that was, but i was told that it was strongly positive for celiac disease, and I need to get a scope done to confirm it. 

 

First off let me go back to when all my craziness started happening,

   About a year and a half ago i was at work as per usual, and just before lunch i started to not feel very well. I tryed to walk it off with no luck, and eventually within a few minutes turned into a full blown panic attack. I have never experienced this before so i thought i was dying. I was rushed to the hospital and released 6 hours later with no answer to what actual happened.

 

The following few months the anxiety and panic attacks continued. Finally they stopped ( and havent had one for over a year! ) Felt pretty good for a few weeks, then got a horrible rash on my back. Well that turned out to be SHINGLES!! Yes i had shingles at age 23.....

 

After that it was all digestive issues for over a year, crazy acid reflux, stomach pains, nausea, etc...

I am currently taking 1 nexium a day and 2 prescription zantac

 

Had every test done imaginable for my gallbladder ( which is apparently fine )

 

Finally after all of this ****, my doctor seemed to have what came off to me as an after thought....his exact words were " well, maybe we will test you for celiac, its the only thing we havent done yet " 

 

and POSITIVE! 

 

Sorry for the rant, just giving you alittle background info. 

 

It is normal for celiac to just pop up out of no where? and start out as anxiety? 

 

Also i can not stress enough how much i DO NOT! want to do the endoscopy. Although im trying to talk myself into it because they may find something else that the crazy amount of blood work ive had didnt pick up.

 

I have gone gluten-free for just over a week ( just a trial to see how i felt ) and i can honestly say that i do feel better, wouldnt call it 100%, but an improvement none the less!

 

 

I thank you if you took the time to read my post.

 

 

 

 

[cyclinglady]

Welcome to the club that you never thought you would join!

Here are some valuable coping tips located within the "Coping" section of this forum:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Anxiety is a symptom of celiac. Symptoms can come and go making it difficult to diagnose. My symptom was anemia, but looking back, I had some anxiety going on that I attributed to menopause.

Celiac can start at anytime. I suspect is had it for years and years!

I had the endo because I knew I need that extra confirmation in order for me to give up gluten. I knew the gluten-free drill. My husband has been gluten free for 14 years. I could not believe that I had gluten issues too! What are the odds? We are not related genetically at all! The actual procedure was easy. Even though I was barely positive on the blood test I had severe damage. Nice to know for future endoscopies if needed.

But you need to be consuming gluten until all testing is complete. If you and your doctor agree that the blood test is good enough, then that is fine.

Best of luck to you!

[flowerqueen]

Hi, I would just like to add to what cyclinglady has said, as she's pretty much covered everything:

You said you were feeling much better after a week of not eating gluten, but not 100%. When I came off gluten, I started to feel better gradually, not overnight, in fact, I went through a detox phase, which brought on vomiting bouts etc., for a few months until all the gluten was finally out of my body. So don't expect to feel fantastic straight away. Obviously everyone is different, so that isn't to say that you will have the same issues that I have had.

I can understand you not wanting an endoscopy, but they are not that bad, and you would find out how much damage has been caused to your gut by having one. At the end of the day, it's your call, but if you decide on an endoscopy, you need to eat gluten for at least 6 weeks before it is done. Good luck.

[nvsmom]

Welcome to the board.  

 

Chances are that the test done on you was the tissue transglutaminase immunoglobulin A (tTG IgA). It is the most common test out there and can have differing normal ranges (such as 0-4, 0-15, or 0-20). None of the ranges go higher than the 20's though, so if your result was 74, that is a very strong positive. With the tTG IgA test, there is a small (less than 5%) chance of having a false positive BUT that only occurs with weak positive test results and that 74 of yours is anything but weak.  Unfortunately, that leaves little doubt that you have celiac disease.

 

There are more blood tests that you can have done if you want reassurance that you have celiac disease and not something else. These are all of the tests:

• (tTG IgA and) tTG IgG
• DGP IgG and DGP IgA (deaminated gliadin peptides)
• EMA IgA
• total serum IgA (a control test to make sure you make enough IgA for IgA based celiac disease tests to be accurate)
• AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests that the DGP tests have largely replaced
• DQ2 and DQ8 genetic tests - About 97% of celiacs have these genes but 30% of the world has these genes too, and most don't have celiac disease.  Having the genes just means you are at higher risk of getting celiac disease.

You need to be consuming gluten in the (8-12) weeks prior to testing for accuracy (except the genetic tests). If you have the tests done immediately, perhaps reintroduce gluten for a few days, you should get accurate results.  Chances are you'll get another positive test, but it is not uncommon for celiacs to be positive in only one test. False negatives happen up to 25% of the time, even the biopsy has a 1 in 5 false negative rate. Negative tests will not cancel out that positive test.

 

You don't need a biopsy but many find it helpful when it comes to dispelling any doubts. I had two positive blood tests, other autoimmune issues and a family history of celiac disease and AI diseases so I had little doubt it was celiac disease. I chose to skip the biopsy. I figured that if I continued to feel badly on the gluten-free diet (after many months) I could always do the biopsy later when celiac caused intestinal damage should have healed, then they'd be able to see any other problems.  

 

I've never regretted skipping the biopsy. Perhaps if I had had weaker test results I would have felt the need to have it done but since I was certain that I had celiac disease, it seemed like there was no point, although some people like to know the damage they are starting with just in case a second biopsy is needed later (if there was no improvement on the diet).

 

Really, doing the biopsy is a personal choice. Totally up to you. If you do have it done, remember that you need to be eating the equivalent of 1-2 slices of bread per day in the 2-4 weeks prior to the procedure so you shouldn't go gluten-free yet.

 

Dr Fasano, a leading celiac researcher, says to be diagnosed with celiac disease a patient should meet 4 out of 5 of the following criteria:

1. celiac disease symptoms
2. positive blood test
3. positive biopsy
4. positive genetic test
5. positive response to the gluten-free diet

Open Original Shared Link According to his criteria, I don't "officially" have celiac disease because genetic tests weren't available here, and I skipped the biopsy.  It doesn't change what I know or my treatment though.  

 

It is great that you are starting to feel better already!  Be aware that it can take months on the gluten-free diet for your immune system to stop the attack on your body. Because of that, some symptoms may take many months, even years, for improvements to happen.  Symptoms that include arthritis, cognitive issues, nerve problems, and sometimes anxiety, can take months of eating gluten-free before they start to improve, and when they do improve it is slowly. Some find it helpful to keep a symptoms (and food) journal to help you keep track of your health.

 

You said that celiac disease came out of the blue but I bet you've had it for many many years. Celiac can often keep a person underweight because their intestines are too damaged to absorb nutrients and fats well - that sounds like it could be you.  That intestinal damage also causes lactose intolerance; ever get a stomach ache after a glass of milk? Anxiety is just another symptom of celiac disease, and symptoms can change, appear, or disappear over time.... Then again, celiac disease can appear suddenly too. Either way, It's great you've figured it out now.  

 

Good luck.  I hope you keep feeling better.

[williamsb]

Welcome to the board.  

 

Chances are that the test done on you was the tissue transglutaminase immunoglobulin A (tTG IgA). It is the most common test out there and can have differing normal ranges (such as 0-4, 0-15, or 0-20). None of the ranges go higher than the 20's though, so if your result was 74, that is a very strong positive. With the tTG IgA test, there is a small (less than 5%) chance of having a false positive BUT that only occurs with weak positive test results and that 74 of yours is anything but weak.  Unfortunately, that leaves little doubt that you have celiac disease.

 

There are more blood tests that you can have done if you want reassurance that you have celiac disease and not something else. These are all of the tests:

• (tTG IgA and) tTG IgG
• DGP IgG and DGP IgA (deaminated gliadin peptides)
• EMA IgA
• total serum IgA (a control test to make sure you make enough IgA for IgA based celiac disease tests to be accurate)
• AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests that the DGP tests have largely replaced
• DQ2 and DQ8 genetic tests - About 97% of celiacs have these genes but 30% of the world has these genes too, and most don't have celiac disease.  Having the genes just means you are at higher risk of getting celiac disease.

You need to be consuming gluten in the (8-12) weeks prior to testing for accuracy (except the genetic tests). If you have the tests done immediately, perhaps reintroduce gluten for a few days, you should get accurate results.  Chances are you'll get another positive test, but it is not uncommon for celiacs to be positive in only one test. False negatives happen up to 25% of the time, even the biopsy has a 1 in 5 false negative rate. Negative tests will not cancel out that positive test.

 

You don't need a biopsy but many find it helpful when it comes to dispelling any doubts. I had two positive blood tests, other autoimmune issues and a family history of celiac disease and AI diseases so I had little doubt it was celiac disease. I chose to skip the biopsy. I figured that if I continued to feel badly on the gluten-free diet (after many months) I could always do the biopsy later when celiac caused intestinal damage should have healed, then they'd be able to see any other problems.  

 

I've never regretted skipping the biopsy. Perhaps if I had had weaker test results I would have felt the need to have it done but since I was certain that I had celiac disease, it seemed like there was no point, although some people like to know the damage they are starting with just in case a second biopsy is needed later (if there was no improvement on the diet).

 

Really, doing the biopsy is a personal choice. Totally up to you. If you do have it done, remember that you need to be eating the equivalent of 1-2 slices of bread per day in the 2-4 weeks prior to the procedure so you shouldn't go gluten-free yet.

 

Dr Fasano, a leading celiac researcher, says to be diagnosed with celiac disease a patient should meet 4 out of 5 of the following criteria:

1. celiac disease symptoms
2. positive blood test
3. positive biopsy
4. positive genetic test
5. positive response to the gluten-free diet

Open Original Shared Link According to his criteria, I don't "officially" have celiac disease because genetic tests weren't available here, and I skipped the biopsy.  It doesn't change what I know or my treatment though.  

 

It is great that you are starting to feel better already!  Be aware that it can take months on the gluten-free diet for your immune system to stop the attack on your body. Because of that, some symptoms may take many months, even years, for improvements to happen.  Symptoms that include arthritis, cognitive issues, nerve problems, and sometimes anxiety, can take months of eating gluten-free before they start to improve, and when they do improve it is slowly. Some find it helpful to keep a symptoms (and food) journal to help you keep track of your health.

 

You said that celiac disease came out of the blue but I bet you've had it for many many years. Celiac can often keep a person underweight because their intestines are too damaged to absorb nutrients and fats well - that sounds like it could be you.  That intestinal damage also causes lactose intolerance; ever get a stomach ache after a glass of milk? Anxiety is just another symptom of celiac disease, and symptoms can change, appear, or disappear over time.... Then again, celiac disease can appear suddenly too. Either way, It's great you've figured it out now.  

 

Good luck.  I hope you keep feeling better.

I can actually tolerate dairy very well. LOVE milk, and drink alot of it with no issues. 

 

Regarding eating gluten, not everything makes me feel bad, i have good days and bad days. Bad days are when i just generally dont feel well, sometimes extreme nausea, fatigue and low energy.

 

For instance today i had french toast for breakfast, and today overall i feel very well..

 

I am probably going to get the scope, again as much as i really dont want too, and i have no idea when it will be, i had a doctors referral for a endoscope sept last year, before my celiac blood work was even thought of. Now that i got positive results, the doctor said he has a new reason for the scope. I still dont even have a date for when it could possibly be. It might be sept this year before i can actually get it done. ( i live in canada ) and im pretty sure the wait times for a upper endoscopy thats not an emergency is around 280 days. 

[nvsmom]

I'm in Alberta.    Part of the reason I skipped the endoscopy was because the wait to see the GI specialist was a minimum of 9 months to a year.  Stupidly long wait, right?   I wasn't about to try gluten (for a one month period) again just to confirm the blood work.  Gotta love our health care system.  

 

If the wait 9 is months to see the GI, and you want to the the scope, you could go gluten-free for 8 of those months. If you go that path, keep a food and symptoms journal to track how you are doing. Actually, if you keep eating gluten, a journal can help you with the GI appointment too.  Just remember that a food intolerance symptom can appear minutes to a couple of days after the food is consumed, and that we do not react the same way to the same food every time. Symptoms can be cumulative or something can knock you down immediately. For example, a few years ago I was accidentally eating some fries a couple of times per week, which had some wheat on them.  I slowly felt worse for about a month, and it took me a while to figure it out. On other hand, I was glutened by some unidentified source on Christmas and I instantly had the stomachache, bathroom issues, fatigue and joint pain began within a couple of days. Reactions can really vary.

 

Good luck with whatever you decide to do.

[williamsb]

Yeah, I usually don't notice a immediate reaction to any food, but there are days at a time when, as I said just feel like over all death.

I use too get chest pain on my left side,( had my heart checked out , everything was perfectly normal) I don't get that as much as I use too.

Also I was in the process of joining the military, I asked my recruiter if I was still able to proceed. They told me although there is nothing stopping me from proceeding, the chances are much higher that I be deemed medically unfit.

Does anybody know of anyone who joined the CANADIAN military with confirmed celiac without issue? Any info on that matter would be excellent, it would kill me too find out that I cannot join because of it!

Thanks for the kind words everyone!!

[nvsmom]

You'd have to get in touch with a recruiter about that. Open Original Shared Link

 

From what I have heard, if you are in the Canadian military and discover you have celiac disease, they accommodate you, but getting in with a diagnosis of celiac disease may be another matter.  

 

I sent an inquiry to a local recruiter; I have a son who has expressed interest in joining one day too. If I hear anything, I'll let you know.

[HappyMom623]

Wow! This post sounds a lot like my pre Celiac days.

 

I got chest pains often, and was even seen by a cardiologist. I was told I had MVP (mitral valve prolapse) but that it should not be painful and they could not figure out where the pain was coming from. It was never found. I also got shingles when I was 24! I was out drinking beer all the time (didn't know I had Celiac) and got them really bad on my neck! No one could understand why someone my age would get shingles.

 

I also had horrible anxiety. All the time. I went to the doctors for 4 years (after many years of being too young to advocate for myself) and had a lot of tests done but nothing was found. I had x rays of my hands done because they always hurt, I had my thyroid tested (came back borderline but they didn't do anything),told I had IBS, and at the very end before I was dx'ed I was seeing a neurologist for strange nerve pain and tingling in my body and horrible headaches.

 

I had to TELL my doctor to tell me for celiac, as he just kept telling me how "rare" it was. Like you, my results came back extremely high. I asked about doing a scope/biopsy but my doctor said he thought it was "invasive" and that my blood work was pretty indicative. I started eating gluten-free and felt a lot better within a month or so. I've been gluten free ever since. Since everything changed going gluten-free, I've never regretted not doing the scope. It's pretty obvious that I DO have celiac.

 

Best of luck~