Questions Regarding Diagnosis

[scottm219]

Hello everyone! This is my first post here and I am looking for some advice.

Back in January, after eating out at a restaurant, I stood up and got extremely dizzy, lightheaded, and nauseous along with heart palpitations. I had my family drive to me to the emergency room because I thought I was having a heart attack, even though I wasn't having chest pain. After EKG, blood tests, chest x-ray, and sitting for a while (along with frequent urination!), the dizziness and lightheadedness went away and I felt better enough to leave. In the next weeks I had similar symptoms, and ultimately went to a doctor who sent me to a GI.

Since I had a hiatal hernia operation when I was younger, he wanted to do an upper scope (EGD) to check and make sure things hadn't slipped out of place. After performing the procedure, he said everything looked good with some mild inflammation here and there. They did biopsies, however, and this is what the report said:

FINAL DIAGNOSIS A. Duodenum, 2nd part, biopsy - Chronic duodenitis with intraepithelial lymphocytosis and villous changes consistent with celiac sprue. COMMENT: Although compatible with celiac sprue, the findings are not pathognomonic. Serologic and clinical confirmation of the diagnosis is required. / B. Stomach, biopsy - Patchy mild chronic inactive inflammation without H&E stained H. pylori-like organisms. / C. Esophagus, middle and lower thirds, biopsy - No pathologic change.

I later had blood work done, however the tests came back negative (my vitamin D was low, and Ferritin was high, but everything was normal and the tTb Ag, IgA was negative). My GI doctor, after seeing the results, said that he would let me decide the next course of action. He said that he suspects that I do have it, but he's not sure. He said that I can go with the gluten free diet and if I feel better keep going with that. Or, if I really want to know for sure/get an official diagnosis, I can redo the gluten challenge and try the blood test again or I can go completely gluten free for two weeks and redo the upper scope (EGD).

As for me, I paid more attention to what I ate and was realizing that gluten was probably causing my symptoms.  My symptoms would include bloating and feeling uneasy in my stomach, along with some dizziness or brain fog. I also had a pocket or bulge right below my sternum that I could press on. However, I would also get attacks like the one I mentioned above, and just feel like crap and have to lie down and take it easy. With the symptoms I concentrated on going even more gluten free, and do have to say I feel better, and even my "bulge" seemed to have disappeared. However, I was still getting some symptoms, and I attributed it to dairy which I also cut back on (cheeses don't seem to bother me, though). Since then I have been feeling better, but I still have symptoms occasionally here and there. (Side note: I was pretty confident it was gluten causing it after I drank one of those naked juices "Green Machine," which I didn't realize it had gluten in it until I felt sick and then read the label!)

My question really is, what do you think I should do? I feel better going gluten free, but in a way want to be sure that this is actually what it is.  Also, I do have a rash on the top of my feet that was severely itchy, but seems to be cooling down a bit since going gluten free, and I was thinking about asking him to get a biopsy performed (if it is the Celiac rash). Are there any other things that I can do/any other tests to help confirm this? Does anybody else have similar symptoms to my gluten attacks, or a "bulge?"

Thanks in advance! I appreciate it!

-Scott

[cyclinglady]

3 hours ago, scottm219 said:

Hello everyone! This is my first post here and I am looking for some advice.

Back in January, after eating out at a restaurant, I stood up and got extremely dizzy, lightheaded, and nauseous along with heart palpitations. I had my family drive to me to the emergency room because I thought I was having a heart attack, even though I wasn't having chest pain. After EKG, blood tests, chest x-ray, and sitting for a while (along with frequent urination!), the dizziness and lightheadedness went away and I felt better enough to leave. In the next weeks I had similar symptoms, and ultimately went to a doctor who sent me to a GI.

Since I had a hiatal hernia operation when I was younger, he wanted to do an upper scope (EGD) to check and make sure things hadn't slipped out of place. After performing the procedure, he said everything looked good with some mild inflammation here and there. They did biopsies, however, and this is what the report said:

FINAL DIAGNOSIS A. Duodenum, 2nd part, biopsy - Chronic duodenitis with intraepithelial lymphocytosis and villous changes consistent with celiac sprue. COMMENT: Although compatible with celiac sprue, the findings are not pathognomonic. Serologic and clinical confirmation of the diagnosis is required. / B. Stomach, biopsy - Patchy mild chronic inactive inflammation without H&E stained H. pylori-like organisms. / C. Esophagus, middle and lower thirds, biopsy - No pathologic change.

I later had blood work done, however the tests came back negative (my vitamin D was low, and Ferritin was high, but everything was normal and the tTb Ag, IgA was negative). My GI doctor, after seeing the results, said that he would let me decide the next course of action. He said that he suspects that I do have it, but he's not sure. He said that I can go with the gluten free diet and if I feel better keep going with that. Or, if I really want to know for sure/get an official diagnosis, I can redo the gluten challenge and try the blood test again or I can go completely gluten free for two weeks and redo the upper scope (EGD).

As for me, I paid more attention to what I ate and was realizing that gluten was probably causing my symptoms.  My symptoms would include bloating and feeling uneasy in my stomach, along with some dizziness or brain fog. I also had a pocket or bulge right below my sternum that I could press on. However, I would also get attacks like the one I mentioned above, and just feel like crap and have to lie down and take it easy. With the symptoms I concentrated on going even more gluten free, and do have to say I feel better, and even my "bulge" seemed to have disappeared. However, I was still getting some symptoms, and I attributed it to dairy which I also cut back on (cheeses don't seem to bother me, though). Since then I have been feeling better, but I still have symptoms occasionally here and there. (Side note: I was pretty confident it was gluten causing it after I drank one of those naked juices "Green Machine," which I didn't realize it had gluten in it until I felt sick and then read the label!)

My question really is, what do you think I should do? I feel better going gluten free, but in a way want to be sure that this is actually what it is.  Also, I do have a rash on the top of my feet that was severely itchy, but seems to be cooling down a bit since going gluten free, and I was thinking about asking him to get a biopsy performed (if it is the Celiac rash). Are there any other things that I can do/any other tests to help confirm this? Does anybody else have similar symptoms to my gluten attacks, or a "bulge?"

Thanks in advance! I appreciate it!

-Scott

Welcome, Scott.

Did your doctor run the complete celiac panel or just the TTG?  Not all celiacs test positive to it (like me).  Some celiacs are even seronegative.  Did he run a gene test?  

Do not get the endoscopy repeated in two weeks.  In theory the GI tract can heal in two weeks.  In theory.  The reality is that people are managing their treatment (gluten free diet).  And mistakes occur.  Most celiacs on the forum take months to years to heal because the gluten-free diet has a very steep learning curve.  

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Please, please, get to a celiac-savvy GI.  This one can not even follow the American or British GI Association’s diagnostic protocol for celiac disease.  What else is this GI missing?  (Gee, missed that cancer......)  Get all your medical records and lab results in hand and find a new doctor!  

Read up on DH.  It has to be active for a skin biopsy.  If you think it is hard to find a dermatologist who knows how to EXACTLY biopsy for DH, you are correct.    Antibodies are in the skin. 

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Your symptoms?  Sure, lots of forum members have experienced what you hav experienced.  Celiac disease is systemic.  It can affect many organs outside of the GI tract. There are over 200 symptoms and each of us experience different ones.  Some celiacs are asymptomatic.  

I think with all your records, your new GI can make a firm diagnosis and you will not have any doubts.  Besides, you have already had improvement and that is what counts in the big picture of life.  

 

 

Edited October 26, 2018 by cyclinglady