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

Blood work positive, awaiting confirmation...can symptoms be so come-and-go?

kg51

Recommended Posts

kg51 Explorer
kg51
Posted

tTG: positive (19.8 with a <15 range) / EMA: negative / IgG and IgA: negative / immunoglobin A: 216 (range 70-312)

I have a lifetime of on-and-off symptoms that could be explained be a celiac diagnosis, but currently it seems I have a few days with periods of nausea (<1 hour) and then stomach pain and bloating after dinner (pretty uncommon earlier in the day), followed by a few days of being mostly normal (maybe still some intermittent nausea).

The pain/bloating is unrelated to if my dinner contained gluten or not. Is that possible? Like last night I ate at a super gluten-free-friendly restaurant and gave a test run of ordering gluten-free and 30 minutes after finishing I was near tears and breathing through the pain and white-knuckling the steering wheel on my drive home. The meal was shrimp and brussels sprouts  and mashed potatoes--nothing crazy.

I'm so scared of getting a positive diagnosis but also so scared of the doctor saying it's not celiac and not having any answers.

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

Celiac.com Sponsor (A8-M):


tessa25 Rising Star
tessa25
Posted

A positive on anyone celiac test should lead to a gastroenterologist doing an endoscopy to see if you have celiac. You do have a positive so you should do the next step. The positive is not overly high so it's not a slam dunk for celiac.

Since you do have gastro related pain you should have a gastroenterologist run their standard series of tests to see what else it could be as well.

 

kg51 Explorer
kg51
Posted
  • Author
36 minutes ago, tessa25 said:

The positive is not overly high so it's not a slam dunk for celiac.

Does it work that way? 

tessa25 Rising Star
tessa25
Posted

An endoscopy would tell if you have celiac. Once testing is done you could try strict gluten free (no restaurants) for a few months if you want to see if gluten free helps.

CYA: I have no medical background whatsoever.

kg51 Explorer
kg51
Posted
  • Author

Mostly I was curious if people who have been diagnosed have experienced symptoms that come and go, or if when eating a gluten-containing diet is it possible to experience symptoms after a meal even if it were gluten-free.

cyclinglady Grand Master
cyclinglady
Posted

Hi!  

The gold standard of diagnosing celiac disease is still done by obtaining biopsies through an endoscopy.  Whoever gave you the celiac antibodies blood test, may have failed to to tell you that you need to remain on a full gluten diet until you can get an endoscopy.  All celiac testing requires you to be on a gluten diet.  Did you go gluten free or gluten light prior to your blood draw? 

What is super friendly restaurant?   Was it is rated 100%  safe by celiacs on an app like “Find Me Gluten Free” or recommended by a local celiac support group?    Or do they just offer a gluten free menu?    Eating out is risky.  It can be done, but there still is risk.   

Sure, your food might have been gluten free, but most untreated celiacs have intolerances (collateral damage).  You could have had an allergy to shrimp.  The Brussels Sprouts might have impacted you.  What about lactose (butter) in the mashed potatoes or maybe they added garlic?  You just did not eat three things, you ate a bunch of things.  Do not forget that maybe that food was spoiled.  You could have had food poisoning and might not be celiac-related at all.  

Celiac symptoms do come and go.  In fact, you might not even have any GI issues (I did not when I was diagnosed, just a lifetime of iron deficiency). 

Get checked by a Gastroenterologist.   I could have sworn my niece had celiac disease as it is genetic, but it turns out she has Crohn’s.  The point is it was a good that my niece persisted in seeking a diagnosis.  Keep advocating for a root cause, because a slightly elevated TTG can be due to other autoimmune diseases and might not be celiac-related at all or you can have concurrent illnesses.  (Dang, it can be so complicated!)

I wish you well.  

tessa25 Rising Star
tessa25
Posted

When your digestive system is damaged many different foods can cause symptoms.

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

Celiac.com Sponsor (A8-M):


kg51 Explorer
kg51
Posted
  • Author
3 minutes ago, cyclinglady said:

Keep advocating for a root cause, because a slightly elevated TTG can be due to other autoimmune diseases and might not be celiac-related at all or you can have concurrent illnesses.  (Dang, it can be so complicated!)

I wish you well.  

I'm definitely getting checked by a GI for sure. Can something like Chron's be present without diarrhea???

cyclinglady Grand Master
cyclinglady
Posted

I can not say (as member Gemini says, “I do not wear a white coat”), but Crohn’s typically presents in younger people.  I assume your name includes 51 as either the year you were born or your current age).  If so, celiac disease is more likely based on my research, but nothing is impossible.  

My niece did not have any of the typical Crohn’s symptoms at all.  Everything was ruled out and finally a pill camera caught severe damage out of reach of both scopes.  Her 4th GI was amazed that her symptoms were not horrible.  Diagnosing anyone with an autoimmune disorder is complicated.  Symptoms overlap with many illnesses.  

GFinDC Veteran
GFinDC
Posted
2 hours ago, kg51 said:

Mostly I was curious if people who have been diagnosed have experienced symptoms that come and go, or if when eating a gluten-containing diet is it possible to experience symptoms after a meal even if it were gluten-free.

Symptoms can vary a lot.  Before I went gluten-free there were days I felt fine.  There were also days I felt awful.  Symptoms were seemingly not directly related to what I was eating recently.  Yes, if your gut is irritated, any food can cause symptoms, even gluten-free foods.  Another tie-in to that is gut bacteria, which can get out of whack in an irritated gut and cause symptoms themselves.   Sugar and sweets are a possible trigger for bacteria overgrowth.  Dairy can cause symptoms because the celiac damage interferes with our ability to digest diary.

Recovery after going gluten-free is not necessarily a straight line upwards either.  It can take months or years to recover good health.

I Want To Be Well Newbie
I Want To Be Well
Posted

It would be worth your while to follow a low FODMAP diet for a while to find food culprits other than gluten. Broccoli is on that list which for me is an intolerable food.

kg51 Explorer
kg51
Posted
  • Author
19 hours ago, GFinDC said:

Symptoms can vary a lot.  Before I went gluten-free there were days I felt fine.  There were also days I felt awful.  Symptoms were seemingly not directly related to what I was eating recently. 

Thank you for sharing your experience. Nothing I've felt has ever stuck for weeks and months and years. It's usually a few weeks where half the days are bad ones, half are okay, and then a few weeks of being okay.

GFinDC Veteran
GFinDC
Posted

One of the problems with diagnosing celiac disease is the variableness of symptoms.  Since malnutrition and inflammation can damage so many different parts of the body, and can affect so many body functions, it is really difficult to nail down a standard list of symptoms,  The most classic symptoms people think of are digestive symptoms.  But some people have mostly nuerological symptoms,  others have mostly skin symptoms, or joint pain or insomnia, or a myriad of other symptoms,  Or in some cases no symptoms, but they still have the condition.

That's why blood tests and a biopsy are so important for diagnosis.  But people with the skin condition Dermatitis herpetiformis (DH) also can test low on the blood tests and the gut biopsy, so they do a skin biopsy on them.

Celiac is not an easy disease to diagnose sometimes.

amyschicks Rookie
amyschicks
Posted
On 4/8/2018 at 7:38 AM, kg51 said:

I'm so scared of getting a positive diagnosis but also so scared of the doctor saying it's not celiac and not having any answers.

I'm still on my search for healing and understanding so I can't help with what your issue is but I can say that you're not alone! Be strong! <3 

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,334
    • Most Online (within 30 mins)
      7,748
    johnfreirefr
    Newest Member
    johnfreirefr
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • 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.