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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Anemia, Gi Symptoms, Negative Antibodies
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Hi All,

I am extremely frustrated with my gastroenterologist.  I am not sure if there is an issue with diagnosing celiac or really what the underlying issue is.

I have had abdominal pain ranging in severity of a few hours to a few days.  This abdominal pain has been going on for years, and I was often told it was due to lactose intolerance. I avoid lactose, so I was confused why that was still the diagnosis. 

In addition to abdominal pain I also developed severe acid reflux following consumption of inert foods like english muffins, pasta, tortillas or anything in between. 

 

I went back to the doctor 2 months ago for the acid reflux and they did blood work and were actually willing to work me up this time. 

I was diagnosed with severe iron deficiency anemia.  Hgb=6 and Ferritin at 1

I was rushed to the hematologist and they started iron infusions, which I feel fine.

They were immediately worried that I had Celiac and did all of the blood tests, but all of my antibodies are negative.

I decide to try coming off gluten, and I have been 98% gluten-free for the last two months and feel better than I have in years.  No abdominal pain and no acid reflux.

 

 

The gastroenterologist says that Celiac would be the logical answer with the abdominal pain, acid reflux, and iron deficiency anemia but since my blood tests were negative he will not diagnose me with Celiac disease.  However, he had no cause for the iron deficiency anemia or acid reflux. 

 

Endoscopy and Colonoscopy were negative. 

has anyone had a similar symptoms?  I would just like a definitive diagnosis.

I am going to stay gluten-free, but it would be nice to have a diagnosis.

 

Thanks!

 

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I'm looking for answers myself and stumbled upon your post. I could have written your post myself. I had done minimal research trying to figure out my problem and deduced it was probably diet related. I, however, have poor self control and not enough time and energy to eat the way I know I should be eating. Let me start at the beginning. I started having issues with reflux, indigestion, constipation, etc. when I was 19 (I am now 28). I went to a GI doctor and went through a battery of tests. I had an upper endoscopy showing severe chronic gastritis. He wanted me to go a month without gluten or dairy. I half assed a couple weeks and never followed through. I did a barium swallow, which I believe was checking for Crohns and everything came back normal. He wanted me to have a colonoscopy. I declined as I'm sure most 19-year-olds would. He said IBS. Increase your fiber, take metamucil, take these PPIs (which could cause you to end up with stomach cancer). I improved for a bit, but fell back into old eating habits shorter thereafter. Fast forward 8 years after a lapse in health insurance. PCP does labs showing that my Ferritin is so low it cannot even be detected (<1) and my hemoglobin is also low. I go to a hemotologist for two iron infusions. Iron dropped down to >10 within 6 months. I can't stomach (pun intended) the iron supplements, so I've given up on that for the time being. I go see a new GI doc who has me do another upper endo. Guess what they found! Chronic gastritis. Worse she's seen in someone my age she says. Tissue is so inflamed the scope tore the lining of my stomach. She wanted to have another done two months later to make sure the tear healed. Least of my worries. This time I consented to a colonoscopy. Only finding was grade 2 internal hemorrhoids due to the constipation. Usually, they do not bother me. Next, she did a pill cam to look at the rest of my GI tract. Finding from that was duodenitits. All of the biopsies came back negative. Celiac panel came back negative. She, my second GI doctor, said IBS, here take these PPIs. Last year about this time I decided to try to clean up my diet. I stopped eating refined sugar, processed foods and gluten. This lasted 3 weeks. The bloating in my stomach was gone, my bowel movements were regular. Everything on the GI front was solid. I felt horrible. Headaches and fatigue so bad I gave up. This, from the research I've done, is due to my body's addiction to sugar and a possible yeast over growth. I had no idea until scouring the internet today that there was a possible link between iron deficiency anemia and celiac. Also, I did not know that false negatives for the celiac panel and biopsies were so prevalent. These healthcare professionals have failed me along with what appears to be a lot of other people.  I am so tired of not having answers. I'm tired of being told to mask the problem when what I need to do is heal my stomach. It's not normal for any area of our body to be inflamed and our stomach is, unfortunately, not an area that can be avoided. I'm tired of not being able to drink a flipping cup of coffee without feeling nauseated. The similarity in our issues has renewed my resolve to try nixing the gluten again. I'm not sure if this was of any help, but thanks for reading. (I know it was a lot)

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frieze    114

Hi All,

I am extremely frustrated with my gastroenterologist.  I am not sure if there is an issue with diagnosing celiac or really what the underlying issue is.

I have had abdominal pain ranging in severity of a few hours to a few days.  This abdominal pain has been going on for years, and I was often told it was due to lactose intolerance. I avoid lactose, so I was confused why that was still the diagnosis. 

In addition to abdominal pain I also developed severe acid reflux following consumption of inert foods like english muffins, pasta, tortillas or anything in between. 

 

I went back to the doctor 2 months ago for the acid reflux and they did blood work and were actually willing to work me up this time. 

I was diagnosed with severe iron deficiency anemia.  Hgb=6 and Ferritin at 1

I was rushed to the hematologist and they started iron infusions, which I feel fine.

They were immediately worried that I had Celiac and did all of the blood tests, but all of my antibodies are negative.

I decide to try coming off gluten, and I have been 98% gluten-free for the last two months and feel better than I have in years.  No abdominal pain and no acid reflux.

 

 

The gastroenterologist says that Celiac would be the logical answer with the abdominal pain, acid reflux, and iron deficiency anemia but since my blood tests were negative he will not diagnose me with Celiac disease.  However, he had no cause for the iron deficiency anemia or acid reflux. 

 

Endoscopy and Colonoscopy were negative. 

has anyone had a similar symptoms?  I would just like a definitive diagnosis.

I am going to stay gluten-free, but it would be nice to have a diagnosis.

 

Thanks!

get a copy of ALL testing, would be curious if they did a complete panel.

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I'm looking for answers myself and stumbled upon your post. I could have written your post myself. I had done minimal research trying to figure out my problem and deduced it was probably diet related. I, however, have poor self control and not enough time and energy to eat the way I know I should be eating. Let me start at the beginning. I started having issues with reflux, indigestion, constipation, etc. when I was 19 (I am now 28). I went to a GI doctor and went through a battery of tests. I had an upper endoscopy showing severe chronic gastritis. He wanted me to go a month without gluten or dairy. I half assed a couple weeks and never followed through. I did a barium swallow, which I believe was checking for Crohns and everything came back normal. He wanted me to have a colonoscopy. I declined as I'm sure most 19-year-olds would. He said IBS. Increase your fiber, take metamucil, take these PPIs (which could cause you to end up with stomach cancer). I improved for a bit, but fell back into old eating habits shorter thereafter. Fast forward 8 years after a lapse in health insurance. PCP does labs showing that my Ferritin is so low it cannot even be detected (<1) and my hemoglobin is also low. I go to a hemotologist for two iron infusions. Iron dropped down to >10 within 6 months. I can't stomach (pun intended) the iron supplements, so I've given up on that for the time being. I go see a new GI doc who has me do another upper endo. Guess what they found! Chronic gastritis. Worse she's seen in someone my age she says. Tissue is so inflamed the scope tore the lining of my stomach. She wanted to have another done two months later to make sure the tear healed. Least of my worries. This time I consented to a colonoscopy. Only finding was grade 2 internal hemorrhoids due to the constipation. Usually, they do not bother me. Next, she did a pill cam to look at the rest of my GI tract. Finding from that was duodenitits. All of the biopsies came back negative. Celiac panel came back negative. She, my second GI doctor, said IBS, here take these PPIs. Last year about this time I decided to try to clean up my diet. I stopped eating refined sugar, processed foods and gluten. This lasted 3 weeks. The bloating in my stomach was gone, my bowel movements were regular. Everything on the GI front was solid. I felt horrible. Headaches and fatigue so bad I gave up. This, from the research I've done, is due to my body's addiction to sugar and a possible yeast over growth. I had no idea until scouring the internet today that there was a possible link between iron deficiency anemia and celiac. Also, I did not know that false negatives for the celiac panel and biopsies were so prevalent. These healthcare professionals have failed me along with what appears to be a lot of other people.  I am so tired of not having answers. I'm tired of being told to mask the problem when what I need to do is heal my stomach. It's not normal for any area of our body to be inflamed and our stomach is, unfortunately, not an area that can be avoided. I'm tired of not being able to drink a flipping cup of coffee without feeling nauseated. The similarity in our issues has renewed my resolve to try nixing the gluten again. I'm not sure if this was of any help, but thanks for reading. (I know it was a lot)

Yeah I would try gluten free. I really have had minimal issues since the diet chnage. As I mentioned before my symptoms were daily and severe.  I am 29, so it seems that we are had the same issues at the same age.  Good luck to you.  BTW, i had 7 iron infusions to normalize, so 2 probably wasn't near enough.

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Yeah I would try gluten free. I really have had minimal issues since the diet chnage. As I mentioned before my symptoms were daily and severe.  I am 29, so it seems that we are had the same issues at the same age.  Good luck to you.  BTW, i had 7 iron infusions to normalize, so 2 probably wasn't near enough.

I've successfully made it through my first day w/o gluten. As far as the iron infusions are concerned, in what time frame did you have all of them? Were your ferritin levels checked after each infusion? I had one, waited two weeks and had a second. When they tested my ferritin, it was well above the minimum. Then, it appeared to have bottomed out. As far as the lethargy is concerned, I didn't really feel better once my ferritin was elevated. I am curious to know what your experience was with it and how they monitored it.

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nvsmom    332

Welcome to the board, gfreecookies.  :)

 

Celiac tests are not fool proof, not by a long shot. They regularly miss celiacs. Yes, they usually do catch most cases but people slip through the cracks all of the time. The tTG IgA, the most common celiac disease test given misses 5-25% of all celiacs. The other tests are similar which is why it's a good idea for doctors to rum multiple tests when looking for celiac disease. This report discusses testing from pages 10-12: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

Did you have a few tests run? Did they run the total serum IgA (control test) while they were at it? I agree that it's a good idea to get a record of every test run. The DQA tests are just genetic tests which tell whether you are in the population that is more likely to get celiac; there are board members who had negative genetic tests yet they have tested positive for celiac disease. You don't need those genes to develop it.

 

Did they do at least 6 biopsies when they did your endoscopy? Celiac damage usually is not visible to the ye during the procedure. If you have your report, feel free to post it; there are some very experienced people around here who can help you interpret it.

 

There is also the possibility of non-celiac gluten intolerance (NCGI). Those with NCGI can have every symptom a celiac can have except the damaged villi (which is really just one symptom). Nutrient deficiencies , reflux, and other symptoms can all be linked to NCGI.

 

Unfortunately there is no test for NCGI right now except a positive response to the gluten-free diet - which you've had. You haven't been on the diet for very long though. You may need to give it more time for your body to recover.  Plus, you will slow down your recovery by not being gluten-free. Eating 98% gluten-free is not gluten-free, that is gluten-lite.  And while it is good work, and I'm sure it is helping some, you'll need to go 100% gluten-free in order to reap the full benefits.... Think of it like a peanut allegery - only 100% peanut avoidance will keep that person safe.  KWIM?

 

If after 6 months, your reflux and stomach pain isn't noticeably reduced, I would look into other causes. There are many possible causes to your symptoms, so it probably would be a good idea to look into other disorders.

 

Best wishes!

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I've successfully made it through my first day w/o gluten. As far as the iron infusions are concerned, in what time frame did you have all of them? Were your ferritin levels checked after each infusion? I had one, waited two weeks and had a second. When they tested my ferritin, it was well above the minimum. Then, it appeared to have bottomed out. As far as the lethargy is concerned, I didn't really feel better once my ferritin was elevated. I am curious to know what your experience was with it and how they monitored it.

I had 7 iron infusions over 7 weeks.  They will check my bloodwork 5 weeks after my last infusion. 

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