Celiac diagnosis and symptoms

[V123]

Hi everyone! I am new to this site and celiac in general. I’m in the process of tests and diagnosis of celiac. I have to be treated by a pediatric GI. I was referred from a regular nurse at my doctors office to visit a GI. I had blood work done at my regular physician that tested me positive for an antibody of celiac (I believe IGA). When my mom and I visited the pediatric GI the doctor recommended, he really talked down to my mom and me and didn’t even let me finish talking before he just put me in the books for an endoscopy. So, we went to another GI the next day and had more blood work, stomach X Ray, rectile and stomach exam, etc. When the blood work came back from that GI, I tested negatively for all of the antibodies. (Weird). After my X Ray, the GI said that my stomach was full of poo and prescribed laxatives (mirolax, after initial cleanout 1 capful 2 times a day to keep up) for 6 weeks after 2 day cleanout. After the rectile exam, I was told I have a fissure and was given medicine for that. The laxatives did make me go to the bathroom, but not as much as I anticipated and I didn’t feel any relief. After halfway through the 6 week period, my mom called the GI and told him that I wasn’t feeling relief. They told me to take 1 pink dulcolax a day as well as the mirolax. I still wasn’t having a change in symptoms. The medicine for my fissure has helped. Two days ago, we went in for the check up after the laxatives. I told the nurse I wasn’t experiencing relief. She did an X ray of my stomach again, and surprisingly my stomach was pretty much emptied of constipation. She ended up saying that I’m going to need an endoscopy done. She also prescribed a medicine for acid reflux, because I have had it noticably one time, and she wants to see if I see any relief from the medicine that would indicate that I do get it regularly, because apparently tooth enamel problems can be from acid reflux  

My symptoms include:

Fecal BO, however my mom doesn’t think I have this, but everyone around me at school including friends are always covering their noses, sniffing, etc. I’ve even noticed my siblings and mom doing this, so maybe my mom doesn’t want me to be worried about this. I didn’t tell my doctor I think I have this BO, because I can’t smell it as much as other people, and honestly I was too embarrassed to say it. Other symptoms are tired, dizzy, brain fog, fatigue, nauseou, sometimes stomach pain, constipation and diarrhea, VERY bad sweats and always feeling hot, sometimes cold chills. I also have a vitamin D deficiency and take vitamin D tablets everyday. When I’m not on the supplement, I never remember my dreams. Before I was tested with a vitamin D deficiency I would remember my dreams a few times every year, and now it’s a few every week. I also had very bad eczema as a baby, and had very bad allergies. I had to get a full allergy panel done and was allergic to lactose, some nuts, one type of meat I don’t remember, citrus fruits etc, but no gluten. My mom and I think I’ve had celiac/gluten problems since I was a baby. I’ve also had tooth enamel erosion problems since I was little, and have composite on all of my teeth. I also get headaches and sinus pressure, and I am probably forgetting even more symptoms.

I also have two aunts on different sides with uncured GI problems. My uncle had GERD as a kid. My half sister also has celiac problems, and had a colonoscopy and endoscopy, but no one thought to tell her to eat gluten during the testing period and she was eating gluten free (dumb, right?)

Any thoughts on the BO, why one blood text wasn’t positive and one negative, etc?

[cyclinglady]

2 hours ago, V123 said:

Hi everyone! I am new to this site and celiac in general. I’m 14 years old and in the process of tests and diagnosis of celiac. I have to be treated by a pediatric GI. I was referred from a regular nurse at my doctors office to visit a GI. I had blood work done at my regular physician that tested me positive for an antibody of celiac (I believe IGA). When my mom and I visited the pediatric GI the doctor recommended, he really talked down to my mom and me and didn’t even let me finish talking before he just put me in the books for an endoscopy. So, we went to another GI the next day and had more blood work, stomach X Ray, rectile and stomach exam, etc. When the blood work came back from that GI, I tested negatively for all of the antibodies. (Weird). After my X Ray, the GI said that my stomach was full of poo and prescribed laxatives (mirolax, after initial cleanout 1 capful 2 times a day to keep up) for 6 weeks after 2 day cleanout. After the rectile exam, I was told I have a fissure and was given medicine for that. The laxatives did make me go to the bathroom, but not as much as I anticipated and I didn’t feel any relief. After halfway through the 6 week period, my mom called the GI and told him that I wasn’t feeling relief. They told me to take 1 pink dulcolax a day as well as the mirolax. I still wasn’t having a change in symptoms. The medicine for my fissure has helped. Two days ago, we went in for the check up after the laxatives. I told the nurse I wasn’t experiencing relief. She did an X ray of my stomach again, and surprisingly my stomach was pretty much emptied of constipation. She ended up saying that I’m going to need an endoscopy done. She also prescribed a medicine for acid reflux, because I have had it noticably one time, and she wants to see if I see any relief from the medicine that would indicate that I do get it regularly, because apparently tooth enamel problems can be from acid reflux  

My symptoms include:

Fecal BO, however my mom doesn’t think I have this, but everyone around me at school including friends are always covering their noses, sniffing, etc. I’ve even noticed my siblings and mom doing this, so maybe my mom doesn’t want me to be worried about this. I didn’t tell my doctor I think I have this BO, because I can’t smell it as much as other people, and honestly I was too embarrassed to say it. Other symptoms are tired, dizzy, brain fog, fatigue, nauseou, sometimes stomach pain, constipation and diarrhea, VERY bad sweats and always feeling hot, sometimes cold chills. I also have a vitamin D deficiency and take vitamin D tablets everyday. When I’m not on the supplement, I never remember my dreams. Before I was tested with a vitamin D deficiency I would remember my dreams a few times every year, and now it’s a few every week. I also had very bad eczema as a baby, and had very bad allergies. I had to get a full allergy panel done and was allergic to lactose, some nuts, one type of meat I don’t remember, citrus fruits etc, but no gluten. My mom and I think I’ve had celiac/gluten problems since I was a baby. I’ve also had tooth enamel erosion problems since I was little, and have composite on all of my teeth. I also get headaches and sinus pressure, and I am probably forgetting even more symptoms.

I also have two aunts on different sides with uncured GI problems. My uncle had GERD as a kid. My half sister also has celiac problems, and had a colonoscopy and endoscopy, but no one thought to tell her to eat gluten during the testing period and she was eating gluten free (dumb, right?)

Any thoughts on the BO, why one blood text wasn’t positive and one negative, etc?

Welcome! 

I think you are going to have to wait for the endoscopy results (are you sure you are scheduled for an endoscopy and not a colonoscopy?). 

As far as your celiac antibodies tests, who knows?  Just saying that your IGA was positive does not reveal anything as this test can be just an Immunoglobulin A test used as a control test in celiac disease testing.  As a stand alone test, this measures an immune response.  Get copies of your labs and post the results if possible or research and learn the difference.   Elevations of the celiac panel can be attributed to other illnesses like Lyme or Crohn’s Disease.  Those should be ruled out.  If you are IGA deficient that can impact your antibodies tests.  Some celiacs are seronegative too.  

The BO?  I can not say.  Of course, during celiac disease testing, you need to be on a full gluten diet, but consider adding lots of veggies to your diet, cut sugary foods/drinks, and stay hydrated. This might help and it certainly can not hurt for anyone to cut down on sugar and increase veggies!  

I applaud your initiative to solve your medical mystery, but try working with your Mom, doctors and other trusted adults to help you and be wary of reaching out in the internet.  Be careful!  

Signed,

Concerned Mom with a teenager

[Jmg]

Welcome

I think the GI was an idiot to talk down to you both, sadly some doctors don't have the best bedside manner. The best advice I can give is to try and get as much from them as possible but beyond a certain point you've done the right thing in seeking a second opinion. 

2 hours ago, cyclinglady said:

Any thoughts on the BO, why one blood text wasn’t positive and one negative, etc?

Quick google showsOpen Original Shared Link after removing gluten, so you may be on the right track. It's important you don't remove it yet though whilst the testing is still ongoing. One thing I would say is that if celiac is finally excluded, don't be afraid to try the gluten free diet REGARDLESS, it may help in resolving your symptoms and that's the main thing. My test was negative but going gluten free resolved a load of symptoms, some of which I didn't even realise were symptoms...

As for the 2 conflicting tests, they may have been testing for different antibodies or there may be 2 differing results simply from differences in your immune response at that point. Its not an exact science and many members here have tested negative then positive later etc. Stick with it and hopefully you'll get some answers soon.

Wishing you the best of luck,

Matt

 

[V123]

18 hours ago, Jmg said:

Welcome

I think the GI was an idiot to talk down to you both, sadly some doctors don't have the best bedside manner. The best advice I can give is to try and get as much from them as possible but beyond a certain point you've done the right thing in seeking a second opinion. 

Quick google showsOpen Original Shared Link after removing gluten, so you may be on the right track. It's important you don't remove it yet though whilst the testing is still ongoing. One thing I would say is that if celiac is finally excluded, don't be afraid to try the gluten free diet REGARDLESS, it may help in resolving your symptoms and that's the main thing. My test was negative but going gluten free resolved a load of symptoms, some of which I didn't even realise were symptoms...

As for the 2 conflicting tests, they may have been testing for different antibodies or there may be 2 differing results simply from differences in your immune response at that point. Its not an exact science and many members here have tested negative then positive later etc. Stick with it and hopefully you'll get some answers soon.

Wishing you the best of luck,

Matt

 

Thanks so much!

[V123]

21 hours ago, cyclinglady said:

Welcome! 

I think you are going to have to wait for the endoscopy results (are you sure you are scheduled for an endoscopy and not a colonoscopy?). 

As far as your celiac antibodies tests, who knows?  Just saying that your IGA was positive does not reveal anything as this test can be just an Immunoglobulin A test used as a control test in celiac disease testing.  As a stand alone test, this measures an immune response.  Get copies of your labs and post the results if possible or research and learn the difference.   Elevations of the celiac panel can be attributed to other illnesses like Lyme or Crohn’s Disease.  Those should be ruled out.  If you are IGA deficient that can impact your antibodies tests.  Some celiacs are seronegative too.  

The BO?  I can not say.  Of course, during celiac disease testing, you need to be on a full gluten diet, but consider adding lots of veggies to your diet, cut sugary foods/drinks, and stay hydrated. This might help and it certainly can not hurt for anyone to cut down on sugar and increase veggies!  

I applaud your initiative to solve your medical mystery, but try working with your Mom, doctors and other trusted adults to help you and be wary of reaching out in the internet.  Be careful!  

Signed,

Concerned Mom with a teenager

Yes, I will have an upper endoscopy done