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):

So Frustrating...

JacqT

Recommended Posts

JacqT Newbie
JacqT
Posted

First of all, I don't have Celiac. But I've been told by someone who does, that my symptoms sound a lot like his...

So I've had digestive issues for over 10 years now. I've been dealing with constipation, bloating, nausea, all of that fun stuff. (I've also been diagnosed with GERD, and my GI said my esophagus is very scarred)

Anyway, I've been tested for h.Pylori, had about 5 ultrasounds to check my gall bladder and all those insides, had a barium swallow (is that what it's called?). All of those have come back negative. I talked to my family dr about my issues, again, and asked if I could get tested for celiac. He said "good idea" and ordered a blood test, which came back negative. (This was before I knew you had to have gluten in your system). I've been gluten-free for a couple of years and for the most part I've been feeling better. (By the way, I've been seeing a GI for about 2 years now) so, my GI ordered an endoscopy and that showed no signs of celiac, but then after that, he wanted me to get a blood test for celiac, again. I couldn't understand why. And that came back negative.

A couple weeks ago we were at a birthday party. There was a person making pizzas and handing out slices, fresh. Smelled so good, but I just stuck with a salad. But, when we left, my kids brought home a couple slices. I was STARVING, because a salad can only hold you over for so long, so I ate a few bites of my daughter's pizza. On the way home I got so bloated and looked 6 months pregnant. Got nauseous. My head started feeling fuzzy. I couldn't even make it home. Had to pull into a parking lot and asked my sis in law to pick us up (me and my 3 children).

And this is what happens when I have been "glutened". It doesn't happen that often because I only cook gluten-free. But if we go out or eat at someone's house, if I'm not careful, I feel horrible. And it lasts for about 4 days. I can't even get out of bed.

Does this happen to anyone else? I just hate it. I can't afford to be in bed for 4 days. I don't know what else to do.

Like right now, I'm feeling bad. I thought I was eating gluten-free, because I let someone use my ingredients (soy sauce) to cook so I could eat too. But I just found out that they had to add in more, so they used the "regular" sauce along with my gluten free sauce.

I know I'm not really asking a question, but I could use some advice

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

I don't see how you could know that you don't have Celiac. You were tested while being gluten free. You need to be eating gluten to test for Celiac disease - blood ot biopsy

JacqT Newbie
JacqT
Posted
  • Author

The last blood I had, I was eating gluten for 2 days before getting tested. But from what I read online (multiple sites), you may need to be eating gluten for longer than that. So , who knows...

JacqT Newbie
JacqT
Posted
  • Author

I've also been tested for anemia and diabetes, 3 times each. Negative.

kareng Grand Master
kareng
Posted

The last blood I had, I was eating gluten for 2 days before getting tested. But from what I read online (multiple sites), you may need to be eating gluten for longer than that. So , who knows...

Open Original Shared Link

So you don't know if you have Celiac or not.

JacqT Newbie
JacqT
Posted
  • Author

According to my GI, no I don't. He said my endoscopy showed no signs

kareng Grand Master
kareng
Posted

According to my GI, no I don't. He said my endoscopy showed no signs

I thought you said you weren't eating gluten? Please read the link I sent. That site has lots of good info.

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

Celiac.com Sponsor (A8-M):


JacqT Newbie
JacqT
Posted
  • Author

I will check it out, thanks :)

I ate it for the test. And then again I my moment of weakness (45 minute drive home, and only fast food on the way, which we don't eat).

Well, thanks for listening to my complaining! I really do appreciate any advice

kareng Grand Master
kareng
Posted

I will check it out, thanks :)

I ate it for the test. And then again I my moment of weakness (45 minute drive home, and only fast food on the way, which we don't eat).

Well, thanks for listening to my complaining! I really do appreciate any advice

I guess I missed something. I only saw that you ate gluten for 2 days. If you did a proper gluten challenge before your blood tests and endoscopic biopsy, then you probably don't have Celiac at this point.

LauraTX Rising Star
LauraTX
Posted

Hi JacqT.  Your tests for Celiac were only done with you eating gluten for two days?  If so, that is not long enough (see the link Kareng posted) and your tests could potentially be a false negative.  I highly recommend seeking out proper testing while eating gluten so they can be accurate.

ravenwoodglass Mentor
ravenwoodglass
Posted

I agree with the others. You need to do a proper gluten challenge, a couple of slices of bread a day for at least a couple of months, and then get retested. If your doctor(s) have told you to only eat it for a couple days you need new doctors. It does sound like you could be one of us and seeing as you have children and celiac is genetic it would be a good idea to get properly tested. 

nvsmom Community Regular
nvsmom
Posted

Yes, like Ravenwoodglass said, you need to eat gluten daily for 2 to 3 months prior to blood testing, and 2-4 weeks prior to the endoscopic biopsy.  Eating gluten just a couple of times is not enough. You need to be eating gluten long term so your body starts a full on attack on your intestines, and only then it has a good chance of getting a positive if you are a celiac.

 

If you get the blood tests, get as many done as possible because false negatives can happen. These are the tests: tTG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA, total serum IgA.

 

Not everyone can make it through the gluten challenge.  Good luck to you if that is the route you choose to go.  :)

JacqT Newbie
JacqT
Posted
  • Author

Thanks so much for all the great feedback everyone!

I REALLY appreciate it

SMRI Collaborator
SMRI
Posted

Step one--find a new doctor

 

Step two- decide if you want to do a gluten challenge

 

if yes, good luck for the next 8 weeks

 

if no, just go gluten free and call it a day and don't worry about a "diagnosis".

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):

  • Who's Online (See full list)

  • 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...