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

Questions To Ask The Gi Doc, Especially About Possibility Of It Not Being Celiac?

user853

Recommended Posts

user853 Apprentice
user853
Posted

My 6 year old daughter had a "we think the random once-every-few-months-hives are from food allergies but let's test this first" celiac panel that came back "overwhelmingly positive". 

 

Her appointment with the GI doctor is tomorrow.

 

Background - I was diagnosed with celiac last year when they were throwing a bunch of tests at me to diagnose a weird symptom (that, it turns out, is not celiac because after over a year being gluten free it hasn't resolved, but that is another issue).  So, neither me or my daughter have any symptoms of celiac.  NO SYMPTOMS AT ALL.  

 

I don't have a copy of her test results yet.  I also don't have the results of my original tests (even after numerous attempts to get them).  But, I did have a positive result from an endoscopy. 

 

Because I am an adult and have food control issues anyway, I took my diagnoses and didn't ask a lot of questions. 

 

But now I want to know!  I want to know why neither of us have any symptoms!  And, more importantly, I want to know if this could possibly be misdignosed and be something else.  Part of my questions are because I don't want my daughter to have to deal with the gluten free stuff, I admit that. But the other part is that due to some really bad genetics, my kid is succeptible to a host of crappy diseases in the future.  If it at all possible that this is NOT celiac I want to know what it IS.  I don't her to spend her life not eating gluten only to find out that whatever is causing these tests to be positive is something else that we could have treated and saved her from future disease.  Does this make sense? 

 

Anyway, I am just wondering if there is a resource or list of questions to ask the doctor.  Or if anyone has any other thoughts or ideas on what to ask?

 

Thanks! 

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

Celaic has a large range of symptoms (last number i saw was about 200 or so). Issues that one may not think are related can certainly be related.

 

Many do not have symptoms that are 'typical' (stomach issues and the like).

StephanieL Enthusiast
StephanieL
Posted

It's genetic. If you have it (based on blood AND biopsy) and your kid tests positive on the blood work, most Dr's will say that's enough for a diagnosis.  Why don't you have symptoms?  Luck? Other issues masking it? No one knows. What you do know is that you need to be gluten-free for life. 

 

My DS was tested because he had a Vit. D level of 0 (zero, literally nothing).  He had no other symptoms (though looking back, perhaps he did but we attributed them to other things). So with younger kids it's often a case of them not having enough damage to cause issues even though there is damage going on.

mamafish Newbie
mamafish
Posted

You're biopsy-confirmed celiac and she's got overwhelmingly positive antibodies?  I'd take that as pretty conclusive.

 

The good news is, if you can get this autoimmune disease quieted, maybe she *won't* get some of those nasty things she carries genes for (we have that problem in my family too).  Gluten-free isn't easy, but I'd way prefer it to a lot of other things my kids could get.

 

From what I'm reading, 60%+ of people being diagnosed with celiac now have no GI symptoms, and up to half of those don't report *any* symptoms (although apparently some of them feel better going gluten-free anyhow).   We're in that camp if we test positive (we're testing because of relatives with celiac).  And yet I did bloodwork and apparently I have screamingly low ferritin and the doc is shocked I'm not anemic and brain fogged and unable to function.  I "feel" fine (or as fine as the parent of a special needs kiddo feels.  I thought.  So things can be quite wrong before they feel bad.)

bartfull Rising Star
bartfull
Posted

None of my business, but some of those crappy diseases you fear may be brought on by untreated celiac. Did you know that certain cancers, thyroid problems, lupus, diabetes, and a host of other autoimmune diseases are much more likely to hit an untreated celiac? If things like that run in your family, it might just be that undiagnosed celiac was the underlying cause.

nvsmom Community Regular
nvsmom
Posted

Ditto Bartfull. Continuing to eat gluten will keep your level of inflammation extremely high and that can help tip your body into another AI disease. In hindsight, I've had untreated celiac disease since babyhood, and it makes me wonder if my other AI disorders might not have developed if I'd lived a gluten-free life.... Eating gluten-free as a celiac is actually a preventative measure when it comes to other AI diseases.

 

I've been gluten-free for over a year and not all of my symptoms resolved either, some I doubt will every completely heal. I still have pain, migraines, hair loss, fatigue, bathroom issues... but it is for the most part improved over what it was jut 8 months ago. You and your child are having symptoms (hives is a symptom although usually not a severe one). Now you just need to consider that they could very well be celiac disease linked. You never know, your daughter may experience some great gains once gluten-free like a growth spurt, stronger bones, better sleep, thicker hair... they might be small improvements but they'll probably be there.

 

Have her go gluten-free for a good six months and if there is no improvement of symptoms (even though she has few) then go back to the doctor to look for other causes on top of the celiac disease. Just keep her gluten-free because as you know, celiac disease is for life.

 

As for yourself, stay gluten-free, and best wishes finding more answers. I know it's frustrating when you are fairly certain things are being over looked.:(

  • 2 weeks later...
mshanson3121 Rookie
mshanson3121
Posted

I agree with others. If the blood test and biopsy are positive - then, you do have celiac, whether you think you do or not. All symptoms may not resolve, or they could be caused by something else. Many people who are sensitive to gluten are also sensitive to dairy.

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

Celiac.com Sponsor (A8-M):


  • 3 weeks later...
user853 Apprentice
user853
Posted
  • Author

Late response here, but thanks everyone for you thoughts! Endoscopy was today and it sounds like the pathology report is only a formality at this point. Poor kid.

But, I appreciate the comments above that maybe all this crap I have and my family has is due to lifelong celiac crap. I definitely happy that my kid may escape some of this. Ugh.

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)

  • 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.