Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiac diagnosis and symptoms

V123

Recommended Posts

V123 Apprentice
V123
Posted

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted
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 Mentor
Jmg
Posted

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 Apprentice
V123
Posted
  • Author
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 Apprentice
V123
Posted
  • Author
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 

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.