Jump to content

  • 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):

Gluten Intolerance - Symptoms and Should I get Tested?

nacoconut

Recommended Posts

nacoconut Newbie
nacoconut
Posted

I think I may have gluten sensitivity. Or Celiac disease? I don't really know.

So, where to go from here? My Dr. said that I don't need to be eating gluten for my results to come back positive (I have heard the opposite). I don't think they will anyway, I'd be the unlucky person with negative results, and can they even detect a sensitivity over intolerance anyway? Supposedly, Celiac isn't in the family.  Should I just stop eating it, and if I feel better, know I shouldn't eat gluten and proceed with life? Or should I find a really good allergy Dr. and go to them? I'm just worried nothing will come up, as that's the norm unless I've broken a bone, and I'm tired of feeling horrible on a daily basis.

How do I know if I can still eat foods that are processed in a facility with wheat? Are all Celiacs/people with sensitivity affected?

My symptoms
- lifelong headaches, migraines
- Daily bloating (got way worse returning after living abroad for several months)
- fatigue (though I do eat well)
- some brain fog/ irritability/ mood swings
- depression (even though I am a happy person, happy with life)
- eczema on arms 
- random nausea 

I do not have any nutrient deficiency. I don't run to the bathroom 20 times after eating bread. I've tried to clear up my issues for years now and no one can figure out what's wrong.

Ps. I'm not allowing things to be stuck up me... and I'm not okay with anesthesia.
Thanks for the help!
 

 

 

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

Celiac.com Sponsor (A8-M):


SLLRunner Enthusiast
SLLRunner
Posted

If you truly want to find out if you are celiac, you have to have blood tests and/or an endoscope which, as you guessee it, means a needle in your arm and/or a camera down your throat, and you do have anesthesia with the endoscope.  It is my understanding that the endoscope is the gold standard of diagnosing celiac disease because it involves biopsies of your small intestine tissue.  If I am incorrect about this someone will enlighten both of us.  :)

Here is an answer to your question about eating gluten prior to testing:
Open Original Shared Link

Here is also an article:  Open Original Shared Link

It sounds like you have been consulting with your doctor, but it sounds like he does not specialize in digestive issues. I would ask for a referral to a gastroenterologist, who does specialize in digestive disease. 

cyclinglady Grand Master
cyclinglady
Posted

Ugh!  Your doctor sounds like he is not celiac savvy!  You must be consuming gluten daily (about 8 to 12 week) prior to a celiac blood panel.  If you are gluten free, your body will stop producing antibodies!  SSL Runner is right!  

Open Original Shared Link

I happen to be the first in my family to have celiac disease which is an autoimmune disorder (not an allergy) than runs in families.  My family is riddled with AI disorders (lupus, RA, MS, thyroiditis, etc.)  You could be the first in your family too!  Anemia was my primary symptom.  I had no known gut issues to gluten.  I went in for a routine colonoscopy (yeah, I'm in the over 50 club) and was shocked with the GI suggested celiac disease and ordered an endoscopy too.   But, he was right!  I had moderate to severe intestinal damage!  Both procedures were easy.  The colonoscopy (which is usually not ordered for celiac disease) prep was the hardest.  How much jello and clear broth can a person eat!  

If all celiac testing is negative, you could try going gluten free to see if symptoms resolve.  But diet adherence can be difficult (but not impossible) without a formal diagnosis.  

Your best bet is plenty of research.  See if you can get another doctor too.  

nacoconut Newbie
nacoconut
Posted
  • Author

I do have a GI but haven't seen her in a few years. She was leaning towards lactose intolerance at first and we did a bunch of testing and I was also treated for parasite. She suggested an endoscopy but I won't do anesthesia. Is there a way to do it without? 

My GP said eating gluten free didn't matter, so I will be returning to the GI. Unless it is better to go to an allergy specialist? 

Just worried nothing will show up, and now my family thinks I'm a hypochondriac, hah. 

squirmingitch Veteran
squirmingitch
Posted

You MUST be eating gluten for blood testing. I don't care what your doc says. If you don't keep eating gluten until the blood is drawn then you can get a false negative. It's happened countless times!!!!! 

An allergy specialist will do you no good in dx'ing celiac disease. Better to go to the GI. It may be possible to do the endoscopy under heavy sedation but not anesthesia but I'm not sure. I have a friend who did a colonoscopy where she watched it on the monitor so she was awake enough to do that.  You will have to discuss that with the GI. If you can work something out with the GI so you will have the endoscopy then you will need to continue eating gluten until the endoscopy is completed.

cyclinglady Grand Master
cyclinglady
Posted

You could have an allergy to wheat and that is totally unrelated to celiac disease.  But, why are you so worried about having an endoscopy?  I have been "knocked out" for several things (C-section, gallbladder, etc.) and I can relate to your concerns (actually, my hubby worries more about this) but each time, the end result was well worth it.  

Did you know that most celiacs have lactose intolerance?  It is because the enzymes used to digest lactose are released from the villi tips.  If those are damaged from celiac disease, you can not digest lactose.  The intolerance varies with the degree of damage.  In many cases, based on genetics, you become lactose intolerant due to age or race.  It's like a huge chunk of the world population.  If you fall into that category, you will never overcome lactose intolerance.  

Get to your GI.  Keep eating gluten until all testing is complete.  And you are not a hypochondriac!

squirmingitch Veteran
squirmingitch
Posted

nacoconut,

Apparently there are many options for the endoscopy procedure & you can do it without general anesthesia. Many people have gone through it with just a throat numbing spray. I found a few links I thought you might like to read:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

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

Celiac.com Sponsor (A8-M):


nacoconut Newbie
nacoconut
Posted
  • Author

Cyclinglady, 

Because of anesthesia as a child, I have extreme needle phobia to the point of either passing out, running out of the room, or being sedated which usually doesn't work once I see the needle. I'm doing my best, but some doctors have refused to take blood because of it. I will do this if I must but I don't know how I will react or what my GI will do.

I think I'm lactose sensitive as I can't do heavy ice creams or bisque anymore without having a stomach ache for the next 2 days. It has only become an issue within the last 4 years so that makes sense, before that no real issues but I didn't grow up on milk and prefer easier digested foods like yogurt and cheese.

All of this is making a lot of sense now! My mom has recently cut lactose, maybe I should urge her to get tested with me.

nacoconut Newbie
nacoconut
Posted
  • Author

Squirm, thanks! I'll see if my GI can do this. I think she mentioned it being painful but I would rather deal with physical pain rather than needle anxiety!

manasota Explorer
manasota
Posted

It would not be unreasonable to ask for a mild sedative to be taken prior to even leaving your house.  You could  swallow a small tablet with a tiny bit of water.   Perhaps this would lessen your anxiety prior to getting the IV meds.  Might be worth a try.  You could even try a dose the evening before also.  DON'T LOOK AT THE NEEDLE!

nacoconut Newbie
nacoconut
Posted
  • Author

Okay. I apparently already was tested, while eating plenty of gluten, and it came back negative. She suggested the endoscopy and I haven't been back in 2 years. I'm making an appointment.

How would I find out if it was a wheat allergy instead?

Archived

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

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

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...