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Returning To Celiac 11 Years Later For Help


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#1 CiscoEngineer

 
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Posted 14 March 2013 - 01:06 PM

Hi All and Nice to Meet Everyone

 

First, let me say that I haven't been around these parts for a good 10 years now. I was diagnosed in 2001 at age 16 with Celiac disease (back when it was virtually unheard of) and Acid Reflux/Heartburn.  I had multiple blood tests done and they always came back positive. I followed the gluten free diet for 2 years, and it didn't really improve my physical symptoms, which were just about 100% bowel related; Mostly high frequency, urgent and loose, but not pains and diarrhea.  Anyway, back then, the defining test to see if you had celiac was to do a sigmoidoscopy and check for villi damage.  I had that done in 2003 and there was no damage found, so I went off the gluten free diet. My bowel symptoms steadily improved over the years, but in late 2004, I did develop an overall feeling of malaise and just generally feeling like heck all the time which seems to get worse every year. Even on my good days, I still always feel like something is missing and life should feel happier.  I have consistently had severe heartburn ever since the Celiac diagnosis, however, and it is medicated with a PPI, though flare ups do happen despite.

 

Anyway, fast forward... I have been eating gluten since 2003, and up until a year ago, my stomach, while never really "normal," was stable enough that I could live my life. The malaise pretty much always hung around, and so did the bad heartburn, though. I started developing the urgency feeling again, and my BM frequency went up to 3 times per day on average.  Not as bad as 10 years ago, but that's not all.  Towards late 2012, I was developing unexplained aches and pains, social phobias of being out in public, and heart-attack mimicing symptoms 4 times a week, often which would wake me from a sound sleep and not subside for an hour. These symptoms would be chest tightness, horrible trapped wind feelings, and bad abdominal pain. On top of that, and again, these never really went away but seem to continue to get worse, I have these feelings like everything is way too much effort, dizziness, foggyness, trouble concentrating, anxiety and total disinterest in doing anything other than sitting on the couch and watching TV after work and on weekends.  I've tried tons of different hollistic things to cure my acid reflux and malaise naturally but nothing has been effective.  I've never thought of harming myself and am still very interested in living, I just feel like life should "feel" better than it does to me. I'm 28 years old. I should "feel" better.  I should WANT to go hit a bucket of balls, not force myself to go do it. I find that when I do force myself to do things, I feel like complete and total crap, until I've been doing it and my body has been working for a while....then I start to feel better, but it is so tough to get myself to that point because I feel so terrible during.

 

Anyway, earlier this year, I was unable to eat anything for a month.   I woke up with one of those heart attack mimicing bouts, and decided enough was enough and went to the ER.  I got the full GI workup and pretty much a full body check up - everything came back fine.  So I went to a new and well respected Gastro for the first time in 10 years, and he performed an endoscopy and found that I had Esophinagus Esophagitis, which is basically a narrowing of the bottom of the esophagus and a loss of esophageal flexibility, due to allergy....which the reaction is being treat with steroids at this time. Basically, an allergen in my body that has likely be present for a long time has built up over the years and caused my esophagus to react in this way, and since the throat becomes hardened and not flexible and narrow at the bottom, everything you eat makes you feel like you are having a heart attack, which explains that.

 

Anyway, as I am being treated for that, I of course told my new Gastro that I was "misdiagnosed" with Celiac Disease 10 years ago.  He said, "Why do you think you were misdiagnosed? Your blood tests were all positive, multiple times."  I said, "Well because I never really had the instant doubled-over pain that lasts for hours or days when I eat gluten and the sigmoidoscopy showed that I had healthy villi.  He said, "Celiac has changed a lot in 10 years. Just because your villi are healthy and gluten doesn't completly double you over doesn't mean you don't have Celiac or at the least, a gluten allergy."  He said gluten intolerance can manifest itself in a huge spectrum of symptoms, and not everyone has the same, or one universal shared symptom.  Due to this, my gastro has ordered a fresh set of celiac blood tests.

 

So the other day I had a revelation.  What are the chances that I had been feeling just overall generally off and like there should be more to life and I should have an interest in doing more things and not always feel like complete crap all the time (dizzy, spacey, queasy, unfocused, cloudly, phobic, depressed, anxious, etc....) for the past 9 years because I started eating gluten again in 2003, thinking I didn't have Celiac, and nothing I do really fully takes those feelings away.

 

I don't have diabetes, but for anyone who does, and judging by how my uncle says he feels when he gets too much sugar...that feeling of just "blah, ugh, spaciness, disinterest, zoned out, don't want to do anything, "everything is too much effort" is how I feel.

 

I guess I am just wondering what the chances are that 1. This sounds like Celiac or gluten intolerance to you guys? or 2. If anyone has/had similar feelings while on gluten or when they consume gluten? I can say I've been more conscious of my gluten intake during the past week, and it may be placebo effect or coincidence...but I had beef, potatos, carrots and a non-alcoholic beer for dinner last night and felt decent enough vs. 3 slizes of palor pizza today and I feel like crap.  Not in pain, per say, mind you.  Just feel like total spacy disconnected queasy crap.


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#2 kareng

 
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Posted 14 March 2013 - 03:37 PM

Well... Sounds like you had a horrible doctor! You tested positive and went gluten-free for 2 years. By then, the damaged villi would have healed. Then they looked at the wrong end for the Celiac damage.

Sounds like Celiac if you had positive blood tests.
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#3 guest134

 
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Posted 14 March 2013 - 05:28 PM

The reason your biopsy was negative was because you were gluten free for 2 years before, unless you had refractory sprue there is no way your intestines would had not fully healed on a strict gluten free diet. 

When your new doctor speaks of your blood tests I wonder which ones were given. While the DGP is very sensitive and specific to Celiac it was not around when you were tested and it is now well known that the anti-gliadin is not an accurate test at all for Celiac. Also, when he says you don't need to have villi damage to have Celiac he is wrong. Perhaps he meant to say that the damage could be missed during biopsy or if the disease was caught very early before too much could be done? Celiac is the destruction of the villi which causes a wide range of nutrient malabsorption which in turn leads to all the possibilities of symptoms that Celiac can bring

It is not uncommon to have other issues along with Celiac so don't just assume all of your symptoms are due to one cause.


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#4 1desperateladysaved

 
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Posted 14 March 2013 - 07:06 PM

I have high hopes that you will be feeling better soon.


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#5 Tiredsean

 
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Posted 15 March 2013 - 04:54 AM

Curious how we have a similar story minus the positive celiac diagnosis.Im 37 and for the past 17 years I had major heartburn and heart palpatations as well as odd flare ups of fatgue etc.I have also spent odd times where I'd go a week or two in an anxious mode then a week or two angry ,then a week or two depressed.All for no good reason,I have a stable life for the most part.Only this year can I honestly say has been pure hell.It all started as chest tightness and back pain and has now flourished into body wide pain that cones and goes (not fibro tender points) more like muscle knots that come and go.Pain in face and jaw,sinuses, major sinus items like post nasal drip,photophobia etc.Since I've taken probiotics I don't get heartburn as much but loose stools etc and gas.After tons of tests,endoscopy,echo scans of abdomin,kidneys,mris of spine,neck etc and sooooo many blood tests including diabeties thyroid,hepatitis ,red/white cells and god knows what else,nothing came back negative.Ive been off gluten since January (not sure if st hubert restaurant BBQ sauce is gluten free), off soy , most sugars etc .still feel the same.So I sympathize with you and am interested in your development if you get better.In your case because you tested positive I'd suspect your problem is still celiac and always has been.Your certainly on the right site for information lots of good ppl here
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#6 dilettantesteph

 
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Posted 15 March 2013 - 05:00 AM

I'm guessing that the reason you didn't feel all the way better while gluten free was that you were still eating gluten somewhere.  There has been a lot of progress there too in the last 10 years.  I hope that you get your life back.


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#7 GFinDC

 
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Posted 15 March 2013 - 06:03 AM

Hi CE,

 

Welcome to the forum! :)

 

If you had celiac before you still have it now.  People don't get over celiac disease.  It is a learned immune response by our bodies.  There isn't any un-learn mode for the immune system.  That's why you can get a vaccine shot in your childhood and still have immunity many years later.

 

When you stop eating gluten the immune response slows down and eventually stops.  That's because you removed the trigger for the immune response, gluten.   With the immune response in park mode your gut can heal.  So a test for celiac disease after going on the gluten-free diet is usually not any use.  It depends on how long after starting the gluten-free diet though, and how long it takes for each person's body to drop the level of antibodies and heal etc.  We aren't all the same.  But two years is plenty long enough for the immune system to "park" it's antibodie production and the gut to heal, in most cases.

 

Sometimes people go in for repeat endoscopies to monitor their progress on healing.  But it never is a "repeal" of the celiac diagnosis, no mater how much they have healed.  Any time the immune system detects gluten in the diet it will get all worked up again, produce more antibodies,  and start to fight the gluten invaders.  That's when the damage is done to your body.

 

Damage to the villi lining the small intestine prevents proper nutrient absorption into the body.  The vitamins and minerals just go right through and  your body doesn't get them.  So lots of different symptoms related to vitamin deficiencies can occur.  Anxiety, anger, depression, fatigue, plus many other symptoms.  So it's not surprising you don't feel well. Your body is being starved of essential ingredients it needs to function.  Celiacs tend to have the most trouble absorbing the fat-soluble vitamins.  Taking lots of extra vitamins only helps a little because they pass right through also.  Some people find sub-lingual vitamins helpful or even vitamin shots.

 

If you can switch your diet around to a healthy gluten-free diet it should help though.  It won't be an immediate resolution of all your symptoms, but it will start the process.  Eating simple whole foods that you cook from scratch yourself is a great way to get the gluten out of your diet.  Often enough people report worse symptoms after starting the gluten-free diet that last a little while.  It takes some time for our bodies to adjust to eating differently and for the bacteria to adjust in our guts.  That doesn't mean the gluten-free diet isn't working, instead it means the gluten-free diet is working.  You may need to cut out dairy for a while.  Some people can eat it with no problems but others have lactose intolerance for a while.  The enzyme that digests dairy sugar (lactase) is made by the villi.

 

Since you are an engineer you probably like pictures.  Take a look at the link below and read about villi in the small intestine.  It has a nice picture of them. :)

 

http://users.rcn.com....html#intestine


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#8 CiscoEngineer

 
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Posted 15 March 2013 - 06:20 AM

Thanks for your replies guys. Unfortunately I am uncertain what blood tests I was given, but I know I had it done 2-3 times and it always returned positive.  But again, I must stress, I do not get the crippling doubled-over pains that are apparently textbook of Celiac when I eat gluten. I just feel like crap for a while.  He did order three, compared to my two, from a decade ago, however.  I should also mention that I am fructose intolerant.

 

Wow, I can't believe my last doctor. Perhaps I could chalk that mistake up to people not fully understanding Celiac over a decade ago? Or maybe since I was a kid, he didn't want me to go through a procedure like that and figured he's spare me the discomfort and try the non-gluten for a year first?  So it is wholly possible that my villi could have been damaged ever since....but because I had the sigmoidoscopy years after restricting gluten, it turned up healthy.  I am completely stunned. Thank you guys for bringing this up.  He really never was a great doctor, to be honest. I mean, when I was a kid, I didn't know any better, but looking back now, he always gave off the vibe that this was his job and it funds his personal life. The doctor I am seeing now was 2012's best gastro in the county.

 

Question: What if I just have gluten sensitivity and not full celiac? Would the villi still show damage?

 

Question: How long does it take for villi health to return to the point that you wouldn't be able to confirm celiac? I assume it is less than 2 years? I just can't for the life of me fathom a screw up that big, so I am going to retrace my records and see if he was really that oblivious.  Let's say for the sake of argument, I am not remembering correctly, and I was gluten free for 6 months? Half a year.  Would it be fully healed by then, or untraceable?


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#9 kareng

 
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Posted 15 March 2013 - 06:33 AM

I just want to clarify something - an endoscopy diagnoses Celiac (in the upper/ small intestine). A sigmoidoscopy/ colonoscopy does not diagnose Celiac. It is in the last part of the large intestine. Not only would you have had no damage because you were gluten-free, but the doctor did not look for any Celiac damage.
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#10 kareng

 
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Posted 15 March 2013 - 06:38 AM

Don't just take our word for it, look at what the doctors who study and treat it daily say.


http://www.curecelia...they-eat-gluten

"Do those with non-celiac gluten sensitivity run the same risk of damaging their villi if they eat gluten?
No. Celiac disease is an autoimmune disorder where the body acts to destroy it’s own tissues. Non-celiac gluten sensitivity has no known association with an autoimmune reaction and typically results in gastrointestinal symptoms, like IBS, fatigue or headaches."



http://www.curecelia...guide/treatment

"For many people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage. Improvements begin within weeks of starting the diet, and the small intestine is often completely healed in 6 to 18 months. Healing may take up to 2 years for older adults; for some, the gut never completely heals but heals enough to restore quality of life and prevent complications due to active celiac disease."
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#11 shadowicewolf

 
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Posted 15 March 2013 - 07:20 AM

Celiac symptoms are as vast as anything else. One little bit will cause some people lots of pain and while others may not feel a thing. Just because you barely felt anything does not mean that you do not have it.


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#12 CiscoEngineer

 
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Posted 15 March 2013 - 08:31 AM

Wow.....I am stunned. You guys have given me a ton of great info and things to think about. I can't believe I could have had this all this time. I've been going crazy trying to figure out what is making me feel like general crap and I could never find it. I hope I am on the right track.

 

GFinDC, I actually try very hard to take supplements. I take Green Powder Superfood Drink Mix, Vitamin D, Probiotic Pearls and Digestive Enzymes with my meals...but as you said, they rarely make me feel great. I mean yes, I feel a little better with the initial rush of vitamins being processed, but it is no where near how I would imagine these supplements are supposed to make you feel. Also, it's a bit gross, but often times my stools do look very rich, as if the nutritional content is being expelled with the waste.  My bowel movements also don't usually smell very bad, or smell at all, even....so not sure if that goes along or against with the theory. Perhaps the high nutrient content potentially still in the stool prevents that or lessens it?

 

I must stress, however, that while I do appear to have just about every symptom of Celiac and/or Gluten sensitivity, I don't have what many call the textbook symptom, or at least what they called in 10 years ago - the crippling, horrifying stomach pains that put you on the ground for hours to days after ingesting gluten.  I have stomach discomfort pretty much daily, but it isn't so crippling that I can't move.


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#13 shadowicewolf

 
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Posted 15 March 2013 - 09:42 AM

Wow.....I am stunned. You guys have given me a ton of great info and things to think about. I can't believe I could have had this all this time. I've been going crazy trying to figure out what is making me feel like general crap and I could never find it. I hope I am on the right track.

 

GFinDC, I actually try very hard to take supplements. I take Green Powder Superfood Drink Mix, Vitamin D, Probiotic Pearls and Digestive Enzymes with my meals...but as you said, they rarely make me feel great. I mean yes, I feel a little better with the initial rush of vitamins being processed, but it is no where near how I would imagine these supplements are supposed to make you feel. Also, it's a bit gross, but often times my stools do look very rich, as if the nutritional content is being expelled with the waste.  My bowel movements also don't usually smell very bad, or smell at all, even....so not sure if that goes along or against with the theory. Perhaps the high nutrient content potentially still in the stool prevents that or lessens it?

 

I must stress, however, that while I do appear to have just about every symptom of Celiac and/or Gluten sensitivity, I don't have what many call the textbook symptom, or at least what they called in 10 years ago - the crippling, horrifying stomach pains that put you on the ground for hours to days after ingesting gluten.  I have stomach discomfort pretty much daily, but it isn't so crippling that I can't move.

Again, symptoms vary with each person. Just because you aren't textbook, doesn't mean that you do not have it. In fact, there is a percentage that are not.


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#14 jhol

 
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Posted 15 March 2013 - 10:33 AM

hi cisco, and tired sean,

 

both your symptoms are virtually the same as mine- not all "celiacs/gluten intolerants" have the same symptoms. mine were lethargy, anxiety ,depression, repetitive thoughts, joint pains and many more little niggly symptoms that seemed really trivial( absolutely NO stomach or gastro problems at all .

i used to look at people who were happy and laughing and think to myself- what are they so happy about? the story they,re telling isnt that funny!, why dont i think it really funny? why arent i rolling about laughing like everybody else?? why is everybody elses meal fabulously gorgeous and amazing and mines just ok !! i just didnt get it , and have many times been described as "sullen" and "miserable"( even had problems at work)  i did used to think i was from another planet  or born in the wrong time lol.

i tested negative on all my tests except for reflux- something id put down to "middle age" and not bothered the doctor about.

i decided to go gluten and dairy free( jan this year) rather than take the medicines id been described.

one week in my joint pains had lessened tremendously, no repetitive thoughts at all and only one reflux reaction to a strawberry smoothie.

i cant say its all been smooth sailing - other intolerance's have been popping up - think i may have a problem with nightshades. but at least mentally im in a better place.

i have read on here somewhere- dont know how true it is though ,that if you dont suffer with the gastro symptoms you can be more sensitive to lower levels of gluten( as in some of the pre-packed gluten free products) . please someone correct me on that one if ive got it wrong.

hope you finally get the results you need and get yourself sorted.


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#15 CiscoEngineer

 
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Posted 15 March 2013 - 11:27 AM

jhol & Shadowice,

 

Thanks for your replies guys.  Also, my apologies about my repetitiveness with stressing the textbook symptom. I did not see you guys already addressed that above.  That makes me feel better that it doesn't necessarily have to be like that.  Jhol, very glad to see someone else has the same issue...I mean, I'm NOT glad that you are suffering, but I am glad that I'm not alone, lol.

 

The good news is that returning to this world after 10 years, it seems infinitely easier to manage having a gluten problem than it was a decade ago. I remember in the past when I wanted to go out to eat, I would have to ask the manager what had gluten, and since he didn't know he would give me the address of corporate, and I will have to write a letter to them to get answers, and etc etc etc.....  It was like having a 2nd full time job, honestly.  Now it seems most places have a gluten free menu, which is great.

 

Question: Do you feel worse if you have a lot of gluten than you do if you get a little? Or is it pretty much the same regardless of amount?


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