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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Am I Likely To Be Dx-Ed? Please Help!
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51 posts in this topic

I recently had an endoscopy due to some esophageal symptoms (sensation of food sticking in the throat, belching) - triggered by a couple of round sof antibiotics and some ibuprofen.

As someone with severe health anxiety who always thinks of the worst, I was decently relieved to hear from the gastro dr. right after the procedure that it was just a mild case of GERD and a hiatal hernia and that all in all, I was one of his healthiest patients.

He told me I will just have to be on some PPI meds for 6 wks and after that, only occasionally, when needed.This was relatively nice to hear when my mind had already gone insane with fears about "Barret's esophagus" or even the horror "esophageal C" word.

After the endoscopy, he set up a follow up appointment and told me to also get a referral from my GP to another dr to also look into possible "allergy to gluten". I don't remember exactly what kind of dr. he said I should see. In the meantime, we waited for the biopsy results from the endoscopy.

A couple of weeks later the results came back with the dx "reflux esophagitis - no precancerous changes".

Definitely not great, but hey - treatable.

The trouble started when I began to look up what every image from the endoscopy meant - as I received a copy with the images at home.

Two of the images read: "2nd portion of the duodenum: atrophic" and "duodenal bulb: atrophic".

When I did the research on the Internet I understood the link between what the gastro saw on those two images and him mentioning a possible gluten allergy and the referral to another Dr. Yet, after the procedure he didn't make anuy fuss about the "atrophy" part - he still said the inside looked good, much better than he expected.

Right now I am freaking about about having Celiac disease and I have 2 questions:

1. Am I correct in concluding that those atrophic findings in the duodenum indicate a high likelihood of Celiac? Could an atrophic duodenum also related to other things?

 

The GI dr. never mentioned the word "Celiac" but he did tell me to check with another dr about possible "allergy to gluten". I think he may have said Allergy dr, if I am not wrong.

The interesting thing is that when I attempted to make an appt. with an allergy dr., they told me they don't test for gluten allergies or Celiac and that this is something the gastro dr. should do!

Now I wonder why in the world my GI dr. sent me to an Allergy dr when this ball still seems to be in their court?

2. If I had Celiac, would the biopsies taken during endoscopy have confirmed this disease?

 

On the endoscopy page the dr. indicated that he biopsied the following":

 

Z-line irregular (biopsied)

Normal mucosa found in the middle third of edophagus (biopsied)

Duodenal mucosal atrophy (biopsied)

 

He also found "normal stomach" and "hiatus hernia" during the endoscopy.

When the biopsy report came back, it just said "reflux esophagitis - no precancerous changes".

I have the follow up visit on Monday and I have a million questions for the gastro dr; but in the meantime, would someone perhaps be kind enough to confirm that a dx of Celiac would have been clarified by the biopsy of the atrophic duodenum, if present?

 

I justy pray that there are other, less serious reasons, why a duodenum would appear "atrophied". I read that it might even indicate some scarring from "starvation". Granted, I never starved myself - but I was on a somewhat drastic "diet" during the summer, not intentionally, but beause of another health scare (a small fibroid) which my sick mind turned into "sarcoma" - and I couldn't let go until the drs. weeded that out 100% - I couldn't east much of anything. I was only eating very little. When the scare went away, I went back to normal eating (which for me often involves quite a bit of bread, by the way).

Symptoms-wise, I do not experience any of the typical symptoms I read about celiac, such as diahrea, stomach cramps, constipation, etc. I am in fact very regular and I normally have very good digestion.

I also had a recent blood test for anemia and it came back normal.

 

I have, however, experienced chronic muscle/bone pain all over my back (drs have no idea why, they tested several things including the spine, RA, etc); and I was found Vitamin D deficient a few years ago. However, after treatment with elgocalciferol and some sunshine during the summer, they tested me back and levels were back to optimum level.
 

My greatest fear is that those atrophic findings indicate a high likelihood of Celiac - as I see few other possible causes for this on the Internet, outside of Celiac.

 

I am counting the minutes until the follow-up appt. on Monday when I want to ask the gastro dr. who exactly should I go to to clarify 100% that I do not have Celiac (with blood anti-body tests and genetic tests as well).

 

I read the "gold standard" for Celiac dx is the biopsy during an endoscopy.

I already have done this and no one said a thing about Celiac.

Then what?

 

Kindly help me, as I suffer from severe health anxiety (hypochondria) and for me, words like "acid reflux" spell "esophageal cancer in the future"; and Celiac spells "lymphoma in the future". 

 

I know I am pathetic - and this is why I am here begging for help. :-(

 

 

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Hi Justscared, welcome to the forum! :)

 

Lymphoma with celiac disease is rare.  Yes, it does happen, but not very often.   Generally if you have celiac disease and stick to the gluten-free diet, you should recover fine.  Although recovery can take a while.

 

Most of the time the first celiac disease test is a blood antibodies test.  Then an endoscopy if the antibodies are positive.  So you are working it kind of backwards.  But that's ok.  There are other conditions that can cause villi blunting, but if you have positive antibodies to gliaden (a gluten protein) then celiac disease is the winner.

 

A gastro usually can order the celiac panel, but a gp can order it too.

 

Celiac disease tests

 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

 

More getting started info here:

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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Welcome!

 

First off -- IF you have Celiac Disease the good news is many of your other health issues may improve greatly with the removal of gluten.

 

Second -- Celiac Disease is not an allergy, but an autoimmune disorder which is diagnosed via blood tests and endoscopic biopsy by gastroenterology, not allergy.

 

Third -- not all folks with Celiac Disease have obvious digestive issues -- you do have several symptoms that can be associated with Celiac, unfortunately these symptoms can be associated with many other disorders so are not specific to Celiac Disease.

 

Fourth -- Do not remove gluten until you have had a full celiac antibody blood work -- there is no reason why your GI can't order this -- sadly not all GIs are well versed with up to date Celiac Disease information and it sounds like your doctor may be one of these.

 

Atrophy of the villi in the small intestine does indicate Celiac.  Did your pathology report specifically reference how many samples of the Duodenum were taken with any specific information for just those samples?  What you have listed sounded more like the doctor's notes or procedural report rather than direct information from the pathology report.

 

Try not to worry...I know this is not easy to accomplish, but try.

 

Take a list of the complete antibody panel with you to your upcoming GI appointment.

 

Total Serum IgA

tTG - Both IgA and IgG

EMA - IgA

DGP - IgA and IgG  (Deamidated Gliadin Peptide - superior to older AGA anti-gliadin antibodies)

 

Hang in there :)

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Lisa,

 

The pathology report DID come back and it only said "acid reflux - esophagitis".  Nothing about Celiac.

 

When the dr. wrote "atrophic duodenum" this was only based on what his saw on the screen during the endoscopy; but when I woke up, he said that overall, everything looked pretty good, much better than what he had expected.

 

He did biopsy the atrophic duodenum (he wrote that in the endoscopy notes) and I am thinking the lab would have indicated something related to Celiac disease, once they put the sample under the microscope.

I do not know exactly how many samples he took, I know he took several, overall.

 

The bottom line is the biopsy report tey sent to me at home in a letter only says "reflux esophagitis - no precancerous changes". They checked that option from several on the page.

 

Given that I just happend to work my way backwards (because of reflux) and the endoscopy with the biopsy was done before any blood test...wouldn't that clear me if the lab didn't mention anything?

 

Are you confirming that THE ONLY reason why someone's duodenum may appear "atrophic" upon examination with the endoscope (what the doctor sees on the screen during the procedure) is CELIAC?

 

Would it be possible that the duodenum looked a bit like this to the dr. during endoscopy but nothing of concern showed up under the microscope at the lab?

 

Could it also be possible that the lab just wrote "reflux esophagitis" in the lab report they sent to me at home and that perhaps they told more to my dr. without wrting it in the letter, and the dr. will tell me more on Monday, during the follow-up visit?

 

What a nightmare...

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GFinDC,

 

Do you happen to know what other conidtions might cause atrophic duodenum?

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Yeah!!!!!  You don't have esophageal cancer! (Celebrate that a bit more!)   :D

 

I share in your ability to make a medical mountain out of a mole hill.  Many, many, many google searches on worst case scenarios.  So, I get it and you are definitely not being "judged" here.

 

My advice to you would be not to worry about it too much, but to still advocate on your behalf for more definitive answers.  I'm sorry, but a GI doc telling you to look into gluten allergy possibilities with another doctor is unacceptable in my eyes.  He saw what he thought might be indicators, so why doesn't HE follow up and take care of you instead of just passing it off.  I would like to say that if he didn't seem worried by it, then you should just forget it.  However, as Lisa said, it doesn't sound like he is very well versed in celiac disease (especially since it technically isn't an allergy and he's using that language).  

 

I honestly can't tell you what you want to know because I don't have that kind of medical knowledge.  I hope that someone here is able to help you out a little more than I can.

 

Breathe deeply.  You can't change it by worrying- whatever it may be.  (I wish I could follow my own advice...)

Best of Luck to you-

Shellie

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The Celiac Disease diagnosis process can be extremely frustrating...there is no way for me to tell you if you have celiac based on what the doctor said he saw and what sounds like a form letter from pathology.  I wish I could give you a firm answer, but that just isn't possible.

 

I would request a copy of the pathology report sent to the doctor, which will show exactly how many samples were taken from where and if there were cellular changes that are consistent with celiac.  One sample of the small intestine is generally not enough as damage can be spotty especially in early celiac.

 

Again, I wish we could be of more comfort, but all we can tell you is to make sure you complete necessary celiac antibody blood work and talk to the GI regarding more specific information regarding what he saw.  If he saw villious atrophy .... ask what he observed could be other than Celiac Disease.

 

It might not seem like it, but Celiac Disease can turn out to be a good diagnosis if it leads to improved health as the only treatment is adjusting your diet rather than taking meds or needing more invasive procedures.

 

I find it helpful to take a written list of symptoms along with specific questions I have and the lab work needed to each doctor's appointment ... this method can make all the difference.

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Thank you, everyone ...I know you can't help me more and I know I will just have to wait until Monday - and even then I probably won't know for sure because I will have to do the blood panel anyway; and only then, will I know more.

 

I was just fishing for a glimmer of hope that it is not Celiac...but to be honest, I am starting to lose that hope.

If the dr saw "atrophic duodenum" on the screen, during the procedure, before he even got any biopsy results back - then it might even be serious Celiac. 

 

I checked and the letter is not directly from the lab (this is not the lab report itself), but from the dr's office.

At the top it says "This form is intended to give you a general understanding of your results. All results will be fully explained during your next visit. The interpretation of lab results can be complicated and this form is not intended to replace a personal view of your results. Critical results are given to all patients via telephone or in person when possible". 

 

I am starting to think that he didn't tell me everything in that letter and he is waiting to tell me more on Monday.

 

For procedure results, there are only 6 choices (none of them involving Celiac) and an "other" with blank, where there's nothing.  

The only thing that they checked was "reflux esophagitis - no precancerous changes" .

 

I am starting to wonder though whether he will have more to add when I go in for the follow-up.

I just wish they hadn't given me the impression that esophagitis was all there was found - with this letter.

 

From what I read, this lifestyle can be very tough considering gluten is even in lipstick.

 

Never mind that I am a huge carb addict, in general, and my most favorite food in the whole wide world is bread fresh out of the oven.

I ate LOTS OF IT in my life. In fact, I could say I have been a serious over-eater of bread products throughout my life (I am 41), with some occasional breaks related to dieting. Given how much I love bread, I am surprised I only slightly overweight (BMI of 26) and not more.

 

Now I wonder if the overeating of breads could have triggered the Celiac.  

 

Hedonism aside, this would be nothing if I didn't read all over the Internet how people with Celiac have increased mortality rates compared to the non-Celiac population and how many complications can come out of this...

I wonder if they refer to Celiacs who never did anything about getting off gluten or even Celiacs who complied with the gluten-free life.

 

Either way, for me it is immensely scary...and I think I am basically entering the "shock stage" as I understand that this is probably "it".

 

It will be a miracle for the dr. and the blood tests to disconfirm it.

 

Could it just be gluten sensitivity and not "full-blown Celiac"? Is that any better? ...

 

Oh, well.

Thank you again.

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I just read in a medical document that "villous atrophy cannot be seen with the endoscope. It can only be seen under a microscope".

Hence the biopsy.

 

Could I conclude that whatever the dr. saw during the endoscopy that he called "duodenum: atrophic" at the eye level may actually not be "villous atrophy"?

 

Is "atrophic duodenum" the same as "villous atrophy"?

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I understand what you have read has scared you -- incomplete information will do that.  We have all been through the necessary adjustment to live gluten-free, IF needed you can too.  While the transition can be tough -- it is far from a dire diagnosis.

 

I don't think there are any conclusions to be made until the doctor clarifies the information obtained during your procedure and your testing is complete.

 

Celiac is not a punishment for eating too many carbs, it is an autoimmune disease that one third of the population carries the genes for...although most folks never develop it.  There are many triggers, but ingesting too much gluten is not one of them....otherwise nearly all people with the genes would develop the disease rather than the small percentage that actually do.

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GFinDC,

 

Do you happen to know what other condtions might cause atrophic duodenum?

 

Here's a whole thread on the subject.

 

It's a good idea to ask for copies of your test results.

 

Usually blood and biopsy samples are sent to a lab for analysis.  The doctor may not get them back for a few days or longer.  Worrying about it won't change the results.  Praying could tho! :)

 

Regardless, having celiac disease is not a terrible fate.  It takes some getting used to and some time to heal, which varies among people.  But after you have gotten it down it is just the normal way you live.  And it ain't so bad either.  We can help you learn what to eat and other things too.  We've all been through the same basic thing.  Gluten can cause psycological symptoms too, things like anxiety, depression, anger etc.  You may find after going gluten-free that your mood improves a lot.  Although that can take a while.

 

Other Causes For Flattened/blunting Of Villi?

http://www.celiac.com/gluten-free/topic/24969-other-causes-for-flattenedblunting-of-villi/ a

 

Here are some threads about the mental affects gluten can cuase.  Some of them are caused gluten itself, and sometimes they are caused by a side affect like malabsorption of vital nutrients.  But they tend to resolve with time on the gluten-free diet.

 

Short temper thread

http://www.celiac.com/gluten-free/topic/34917-anger-quick-temper-depression/

Anger, Quick Temper, Depression

http://www.celiac.com/gluten-free/topic/34917-anger-quick-temper-depression/

A brain in the head, a brain in the gut NY Times  (serotonin, gut depression link)

http://www.nytimes.com/2005/08/24/health/24iht-snbrain.html?pagewanted=all&_r=0

 

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Thank you GFinDC!

 

I looked at all possible causes and none of them sounds likely in my case - or definitely not more desirable to have than Celiac.

 

Right now I am literally sick to my stomach from reading about the shorter life expectancy of Celiacs and their higher likelihood of malignancy, even in the case of strict diet adherence.

 

I have two severe phobias: cancer and flying -  and when I say severe I don's mean the average fear of cancer of the average, normal person. It is simply debilitating for me. The slightest symptoms send me into sever depression and panic, horrific fear of disease and terrible obssessive behavior, spending weeks on the net trying to rule out the scare -  until drs are able to rule it out for me with 100% guarantee tests. 

 

All of my grandparents lived into their 90's, my parents are both alive and turning 70 (though my mom lives with diabetes), and somehow...I had put into my head that I will be able to live to 100 years old, so I can spend a long time with my children and grandchildren in the future.

 

When I turned 40 last year, a series of health scares hit me very hard and I started to feel I am stepping into "health danger land" now that I am in my 40's (I turned 41 a month ago).

 

Now I wonder what they mean when they talk about "early diagnosis". I have had certain symptoms for years (chronic rhinitis which I had since childhood, periods of dizziness/foggy brain, and muscle/bone pain all over in my back over the past 3-4 years).

 

All tests over time came back fine (including iron / no anemia) with the exception of Vit D deficiency which was easily corrected with elgocalciferol and sunshine.

 

 

Regarding adherence to diet, I know that I will adhere 100% if i am dx-ed - because I am scared beyond belief.

 

I already consume lots of non-processed foods, I always avoid foods that come in packages and are not a one-ingredient, natural thing - and in general, I have a pretty good knowledge of nutrition and good practice in reading labels;

so I hope to be able to avoid even those "hidden" glutens, not just the classic bread, pizza and pasta.

 

That being said, my anxiety is through the roof because of reading about Celiacs' life expectancy. I even read some horrible articles that claim gluten-free doesn't help, and you still have a much higher chance of early death anyway. 

 

 

 

Here's a whole thread on the subject.

 

It's a good idea to ask for copies of your test results.

 

Usually blood and biopsy samples are sent to a lab for analysis.  The doctor may not get them back for a few days or longer.  Worrying about it won't change the results.  Praying could tho! :)

 

Regardless, having celiac disease is not a terrible fate.  It takes some getting used to and some time to heal, which varies among people.  But after you have gotten it down it is just the normal way you live.  And it ain't so bad either.  We can help you learn what to eat and other things too.  We've all been through the same basic thing.  Gluten can cause psycological symptoms too, things like anxiety, depression, anger etc.  You may find after going gluten-free that your mood improves a lot.  Although that can take a while.

 

Other Causes For Flattened/blunting Of Villi?

http://www.celiac.com/gluten-free/topic/24969-other-causes-for-flattenedblunting-of-villi/ a

 


 
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"Am I still at risk for developing intestinal/stomach cancer even after I’ve been diagnosed with celiac disease and switched to gluten-free diet?

The risk for intestinal cancer in celiac patients is elevated, especially in the first year after diagnosis, as a result of the previous time eating gluten. Once on a gluten-free diet for a year or more, the risk returns to normal."

http://www.cureceliacdisease.org/archives/faq/am-i-still-at-risk-for-developing-intestinalstomach-cancer-even-after-ive-been-diagnosed-with-celiac-disease-and-switched-to-gluten-free-diet

"Are women with celiac disease less likely to have breast cancer?

Yes, we’ve known this to be true for some time, but the reason is still unknown."

http://www.cureceliacdisease.org/archives/faq/are-women-with-celiac-disease-less-likely-to-have-breast-cancer

"What do people with celiac disease die of to increase the mortality rate?

Increased mortality rates in those with celiac disease are due to an increase especially, but not exclusively, in intestinal lymphomas. Also, other gastrointestinal cancers seem to be more frequent and contribute to an increased in the death rate for those with celiac disease.

Fortunately, many see their increased rate of cancer decrease to that of the general population once on a strict, gluten-free diet."

http://www.cureceliacdisease.org/archives/faq/what-do-people-with-celiac-disease-die-of-to-increase-the-mortality-rate

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I read it can take 5 years of perfect adherence to reach the life expectancy of the general population.

Thankfully, the endoscopy showed my stomach perfectly normal.

The esophagus is inflamed (reflux esophagitis, the reason I went to see the gastro in the first place) - but no precancerous changes.

 

I just wish I could read some encouraging things, maybe the idea that a strictly complying Celiac is more likely to eat a whole foods, healthy diet which you would think would raise their life expectancy compared to the general population eating a modern diet.

 

 

But doesn't look like anything gives in this department...

 

"Am I still at risk for developing intestinal/stomach cancer even after I’ve been diagnosed with celiac disease and switched to gluten-free diet?
The risk for intestinal cancer in celiac patients is elevated, especially in the first year after diagnosis, as a result of the previous time eating gluten. Once on a gluten-free diet for a year or more, the risk returns to normal."


http://www.cureceliacdisease.org/archives/faq/am-i-still-at-risk-for-developing-intestinalstomach-cancer-even-after-ive-been-diagnosed-with-celiac-disease-and-switched-to-gluten-free-diet


"Are women with celiac disease less likely to have breast cancer?
Yes, we’ve known this to be true for some time, but the reason is still unknown."

http://www.cureceliacdisease.org/archives/faq/are-women-with-celiac-disease-less-likely-to-have-breast-cancer



"What do people with celiac disease die of to increase the mortality rate?
Increased mortality rates in those with celiac disease are due to an increase especially, but not exclusively, in intestinal lymphomas. Also, other gastrointestinal cancers seem to be more frequent and contribute to an increased in the death rate for those with celiac disease.
Fortunately, many see their increased rate of cancer decrease to that of the general population once on a strict, gluten-free diet."

http://www.cureceliacdisease.org/archives/faq/what-do-people-with-celiac-disease-die-of-to-increase-the-mortality-rat

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I read it can take 5 years of perfect adherence to reach the life expectancy of the general population.

Thankfully, the endoscopy showed my stomach perfectly normal.

The esophagus is inflamed (reflux esophagitis, the reason I went to see the gastro in the first place) - but no precancerous changes.

I just wish I could read some encouraging things, maybe the idea that a strictly complying Celiac is more likely to eat a whole foods, healthy diet which you would think would raise their life expectancy compared to the general population eating a modern diet.

But doesn't look like anything gives in this department...

If they didn't see celiac.....maybe you don't have it?

I have Celiac. Everything I have seen and heard from the experts actual mouths - once you are gluten-free and healed, your risk of a very rare cancer goes back to the same risk of everyone for a very rare cancer.

You sound like you just want to find things to worry about, in my opinion. I would try to find something else to do with my time. :). Maybe learn gluten-free baking? That is a worthwhile and time consuming endeavor.

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This is an interesting report that you might want to read, or even print off and bring to your appointment. Pages 8-12 discuss endoscopy and blood tests:

http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

You sound a lot like me when I was first diagnosed: scared and mad. You'll be okay. Celiac disease is one of the easier autoimmune diseases to treat. No medications required like Addison's, hashimoto's, or diabetes. It's just alteration to your diet. At home, that's easy to do. All you need to do is switch brands. Use rice noodles and gluten-free bread instead of the usual wheat variety. Use gluten-free boullion cubes as well as gluten-free soy sauce and worchestershire. Get rid of gluteny spices. It really is just a brand switch at home, it's eating away from home that is a bit trickier but still very doable... You'll be okay.

 

If cancer is a large fear, going gluten-free might point your eating in a direction that makes cancer less likely. Cancer LOVES carbs and sugars. That's all it gets energy from.  If you reduce your carbs and sugar intake, you'll make it very difficult for cancer to get going, if not impossible.

 

Hang in there, and let us know how the appointment goes. Good luck.  :)

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Do you happen to know how common is refractory celiac?

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Do you happen to know how common is refractory celiac?

 

Extremely....extremely rare.

 

MOST people diagnosed with Celiac Disease improve within weeks and their intestines are healed within six months.

 

Please re-read the positive comments and stop researching worst case scenarios for a disease that you have not been diagnosed with.

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Extremely....extremely rare.

 

MOST people diagnosed with Celiac Disease improve within weeks and their intestines are healed within six months.

 

Please re-read the positive comments and stop researching worst case scenarios for a disease that you have not been diagnosed with.

 

Lord Bless you, Lisa, I know you are right and I will not try to excuse the mindset I have in any way.

But I am basically an undiagnosed hypochondriac, I would say severe - and it is extremely hard for me to switch my brain to focus on the positive likelihoods. My brain always reverts to worst case scenarios and desperately wants to weed them out with 100% guarantee; otherwise the anxiety, the panic attacks, the terrible fear literally get into my blood until everything is cleared.

 

I know I need psychiatric help as I have been through health scares before...but this time, I feel like I am probably out of luck. 

 

I still hang onto the scenario where what the dr. saw as "atrophic duodenum" during the endoscopy did not in fact translate into "villous atrophy" at the lab. The letter they sent at home allows me to hope for that somehow, but if he reserved telling me all about Celiac when he sees me tomorrow for follow up, then this hope means nothing. 

 

Yes, I will post tomorrow with an update.

 

Thank you so much for having patience with me.

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You are welcome.

 

Do try to get some rest.

 

For now close your eyes...breathe in through your nose and out through your mouth...then repeat....and again.

 

And do speak to your primary care and the GI about your high level of anxiety.

 

Lastly as someone else mentioned removing gluten can help anxiety...so regardless of results it would be a good idea to remove gluten for a three-six month period as this is the only way to determine Non-Celiac Gluten Sensitivity which has many of the same symptoms as Celiac.

 

Hang in there  :)

 

Edited to add:  do not remove gluten until you are certain Celiac testing is complete.

Edited by GottaSki
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Do you happen to know how common is refractory celiac?

At least that is one you don't have to worry about! You know you don't have that. You had a clear endo after being gluten-free. At least that's what it sounded like you were saying?

Get the actual copy of your reports - lab and pathology and go from there.

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At least that is one you don't have to worry about! You know you don't have that. You had a clear endo after being gluten-free. At least that's what it sounded like you were saying?

Get the actual copy of your reports - lab and pathology and go from there.

 

kareng,

 

In fact, no - this is not the case.

 

I have never been gluten-free, definitely not for more than a few days.

Actually I have been very much gluten-dependent my entire life. I LOVE bread and feel completely hungry if I don't have it on the side with whatever other foods I am eating; and I have had periods in my life when I literally drowned myself in gluten (fresh bread, croissants, muffins, you name it).

 

I had heard about the gluten issue before and have read casually a few things about Celiac, but not having any of the classic symptoms (diahreea, anemia, etc) I didn't bother to look any deeper.

 

When my GI first mentioned the possibility of "gluten allergy"or other food allergies to explain my reflux, I went gluten free for a few days, less than a week - but then I went back on gluten as soon as I read on this forum that I may need further testing.

 

When I had the endo and the biopsy I was on gluten.

 

As for the "endo being clear" - this is what is not clear to me at this point and this is what I need to clarify today when I see the GI (3 more hours of wait).

Like I said, dr's. notes right after endoscopy said "duodenum: atrophic", but he also said everything looked much better than he expected, including the reflux part, etc.

 

A few days after the endo, I received a letter at home with the biopsy results, and the only thing mentioned was "reflux esophagitis" and "set up a follow up appt in a week".  Nothing about "villous atrophy", nothing about Celiac.

Then again, this was not the lab report itself, only  a letter from the dr's office.

 

So I am not sure this qualifies as "endo clear".

Unless the dr. thought he saw "atrophic duodenum" during endo but the lab failed to find any atrophied villi, despite what the dr saw.

 

Of course, the biopsy did reveal reflux esophagitis - but that's something else.

 

I read about another case on this forum where the dr wrote "atrophic duodenum" right after endoscopy but the biopsy came normal.

 

So, so weird.

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Just wanted to add one thing... and this is just my own opinion/viewpoint - I don't have any "medical evidence" of this... but my suspicion is that a major reason for Celiac people to still have a lower-than-normal life expectancy is because they actually eat worse after their diagnosis than they did before they were diagnosed.  "Gluten-free" does not automatically mean healthy.  Many "gluten-free" substitutes for gluten food have a laundry list of additives and crap in them that would make anyone sick over time if they ate a lot of them.  I looked at the Betty Crocker gluten-free brownie mix and the first ingredient is sugar.  Which means there is more sugar in them than flour!!  In my opinion, if you eat 100% gluten-free AND eat healthy (i.e. whole food, plenty of veggies, minimal sugary crap, minimal processed crap) there is no reason whatsoever why the life expectency of a person with Celiac cannot be the same or better than the average person in the rest of the population (other genetics, etc. being equal).

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It makes sense. I just never thought that people would continue to rely on processed foods after such a diagnosis. A gl,ute-free boxed prodict may be gljuten-free but it's still a processed thing. The point is to increase your intake of whole foods cooked from scratch.

You would think that this would be a wake-up call that would put people in the kitchen, constantly peeling whole vegetables and cutting pieces of fresh meats, etc (yes, very time consuming indeed - which clashes with the huge pace of life of modern society).

But if you have a more serious condition, you would think cooking whole foods would get very high on the priority list.

 

 

The fact that many people just want to get their food from a box is perhaps part of the western way of living.

 

 

Just wanted to add one thing... and this is just my own opinion/viewpoint - I don't have any "medical evidence" of this... but my suspicion is that a major reason for Celiac people to still have a lower-than-normal life expectancy is because they actually eat worse after their diagnosis than they did before they were diagnosed.  "Gluten-free" does not automatically mean healthy.  Many "gluten-free" substitutes for gluten food have a laundry list of additives and crap in them that would make anyone sick over time if they ate a lot of them.  I looked at the Betty Crocker gluten-free brownie mix and the first ingredient is sugar.  Which means there is more sugar in them than flour!!  In my opinion, if you eat 100% gluten-free AND eat healthy (i.e. whole food, plenty of veggies, minimal sugary crap, minimal processed crap) there is no reason whatsoever why the life expectency of a person with Celiac cannot be the same or better than the average person in the rest of the population (other genetics, etc. being equal).

 

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UPDATE, BACK FROM GI.

 

Biopsy results indicate no celiac sprue or infectious microorganisms. Just grade A esophagitis in the lower part of the esophagus from a little reflux.

 

Apparently though, the # of biopsies the dr. took of the small intestine was only 1.

He also took 2 other biopsies of the middle lower esophagus - I got a copy of the lab report.

 

I asked the dr why he wrote "atrophic duodenum" in the endo report (the reason why I've been freaking out for almost a week now) and he said that it was a very small portion that seemed a little different to him and he just wanted it biopsied; but the final call is the biopsy itself and according to him, that came 100% normal, with no villi flattening.

 

I asked him whether I should still do a Celiac blood panel and he said no.

 

 

What would you advise me now?

 

I want to take myself completely off gluten anyway for 30 days and see what happens.

 

Will the reflux go away? Will the muscle/bone pain all over my back disappear? Will  the occasional flair-ups of cheilitis (little sores at the corner of the mouth) vanish altogether?  Will I see other health benefits?

 

Who knows? Many people NOT diagnosed with Celiac claim miraculous changes in health after they get themselves off gluten.

 

I still sometimes worry that I could just be gluten-sensitive but without blood panels I cannot know for sure. Maybe my GP will want to do a gluten-sensitivity panel when I have the yearly check-up.

 

I guess the take-home lesson for pre-diagnosis people would be:

 

Do not assume that the "atrophic duodenum" remark your GI. writes in the endo report right after the procedure = "villous atrophy".

 

Sometimes the dr. THINKS he sees something and the lab finds all in order.

 

It CAN be very nerve wrecking though.

 

Thank you so much again for everyone's support - I remain grateful for all the information and help I received here. I did learn a lot.

I

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