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I'm not convinced.

NotConvinced-23

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NotConvinced-23 Newbie
NotConvinced-23
Posted

Hi,

I went to a GI doctor in August 2014 because I was on NSAID medications and developed some anemia which led to a question of stomach bleeding, so he wanted to do an endoscopy on me to check my esophagus and to check for stomach bleeding.  I had NO SYMPTOMS of celiac or gluten intolerance at the time.

During the endoscopy, he biopsied my small intestine because he noticed inflammation.  I already knew I had inflammation because I was being treated for RA with NSAID's which is what led me here to begin with.  After this biopsy, he called and said I should stop eating gluten right away.  He asked me to come in for blood work to confirm celiac disease and I did and he said it was confirmed.  I don't know how the blood test works or what they look for, but hearing this news was a shock since I had no symptoms.

Never the less, I stopped eating gluten COMPLETELY and officially in October of 2014 (2  years ago).  It has been very difficult.  I'm extremely careful when I'm going to go out to dinner or when I buy groceries and I always either read the ingredients or, if we're going to dinner, I talk to the manager about their policy on gluten-free.

My inflammation never got better after this.  At least not in my connective tissue and joints.  Since I wasn't having symptoms of celiac to begin with, nothing about my digestion changed either.  In fact, I noticed more problems after cutting wheat out.

I'm thinking about slowly reintroducing wheat to check for a reaction.  Mind you it's been TWO YEARS since I ate anything with wheat, barley or rye.  I did eat something with malted barley by accident about 4 months ago and nothing happened.

I'm just wondering if anyone here who was diagnosed with celiac has tried to reintroduce wheat into their diet and been successful.  Thanks for reading!

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Tricia7 Newbie
Tricia7
Posted

Did you have a celiac blood test?  NSAIDs are known for causing celiac like damage.   I think you should get another opinion, you may very well have non-celiac villous attrophy caused by the NSAIDs.

From what I have read, NSAID use is the most common reason people are misdiagnosed with celiac.  And diagnosis critera generally advises doctors to rule out NSAID use before diagnosing celiac if there is not postive blood work to back up the biopsy.

 

squirmingitch Veteran
squirmingitch
Posted
3 hours ago, NotConvinced_23 said:

Hi,

I went to a GI doctor in August 2014 because I was on NSAID medications and developed some anemia which led to a question of stomach bleeding, so he wanted to do an endoscopy on me to check my esophagus and to check for stomach bleeding.  I had NO SYMPTOMS of celiac or gluten intolerance at the time.

During the endoscopy, he biopsied my small intestine because he noticed inflammation.  I already knew I had inflammation because I was being treated for RA with NSAID's which is what led me here to begin with.  After this biopsy, he called and said I should stop eating gluten right away.  He asked me to come in for blood work to confirm celiac disease and I did and he said it was confirmed.  I don't know how the blood test works or what they look for, but hearing this news was a shock since I had no symptoms.

Never the less, I stopped eating gluten COMPLETELY and officially in October of 2014 (2  years ago).  It has been very difficult.  I'm extremely careful when I'm going to go out to dinner or when I buy groceries and I always either read the ingredients or, if we're going to dinner, I talk to the manager about their policy on gluten-free.

My inflammation never got better after this.  At least not in my connective tissue and joints.  Since I wasn't having symptoms of celiac to begin with, nothing about my digestion changed either.  In fact, I noticed more problems after cutting wheat out.

I'm thinking about slowly reintroducing wheat to check for a reaction.  Mind you it's been TWO YEARS since I ate anything with wheat, barley or rye.  I did eat something with malted barley by accident about 4 months ago and nothing happened.

I'm just wondering if anyone here who was diagnosed with celiac has tried to reintroduce wheat into their diet and been successful.  Thanks for reading!

Get a copy of your records. Check out the blood work that was done & check out the pathology on the biopsies. It's that simple.

Did you know that over 50% of the dx'd celiacs presented with NO GI issues? Do you know there is such a thing as silent celiac where the patient has no symptoms yet there is damage to the villi?

You can also ask to have the celiac serum panel run again. That will tell if your antibodies have gone down or not. If they haven't then it indicates you have not been careful enough in your diet or with cross contamination.

PinkyGurl Explorer
PinkyGurl
Posted

If your blood work (antibody testing) indicates celiac then it's celiac.  It's also very typical for those with other autoimmune diseases (diabetes. RA, Hashimotos etc) to have celiac, autoimmune diseases kind of go together...I have 5.  Type1 diabetes, Hashimotos, dermatographic urticaria, celiac and Rheumatoid arthritis.  Start by getting copies of your labs and biopies.  The other thing you can request is a repeat EGD to check that you have healed.  If your small intestine looks good and you are still on NSAIDs then that should prove to you the celiac diagnosis.  I would definitely get a repeat EHD before even thinking about doing a gluten challenge.

Also you say you don't have any symptoms of celiac...you do!  You have another autoimmune disease which who knows which one came first.  I know 13 years of misdiagnosed celiac gave me my RA and other AI diseases.  You were also anemic which is a huge symptom.

GFinDC Veteran
GFinDC
Posted

Hi,

Did the anemia resolve after you went gluten-free?  If it did then that might indicate improved absorption of nutrients.  That would in turn mean your symptom (anemia) went away because of not eating gluten.

Celiac disease does not only cause GI system symptoms.  People can have joint pain, skin rashes, nerve damage, etc.

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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