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So Frustrating...

JacqT

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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

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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...

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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.

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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".

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