Newbie! Negative Blood Work. Diagnosed With Ibs. Need Endoscopy? Pls Help!

[Mia'smommy]

I was diagnosed with IBS when I was 12 years old. I am 37 now. I have what I call "IBS episodes" of diarrhea, SEVERE pain, sweating, chills when I eat certain foods. I can't pinpoint it to wheat alone. It doesn't happen all the time, but I suffer from these "episodes" at least 4-5 times a week.

My 4-year-old was just diagnosed with Celiac. She was asymptomatic. She has a genetic disorder that we were about to start HGI in her. One of the tests they run before starting HGI is a celiac panel. Her numbers came back as a "weak positive." Had the endoscopy done. Showed early stages of celiac. Her gene test also came back as the highest, 31x, and he said she had the gene also. She has been gluten-free since January now.

I got tested when we got her diagnosis. Mine tests were negative. I know he tested the Iga (I think that is what it was) to make sure I was producing enough for the test to be valid, something like that. I don't have the values. Now he wants to do a colonoscopy to check for other things, and says he wants to do an endoscopy also since I will be under anyway.

Question is could I possibly have celiac if blood work was negative?

Thank you for all your help and advice.

[frieze]

short answer? yes.

[Mia'smommy]

short answer? yes.

And that would show in the endoscopy? What if endoscopy comes back negative, then I for sure don't have celiac, right?

[GottaSki]

And that would show in the endoscopy? What if endoscopy comes back negative, then I for sure don't have celiac, right?

 

I wish the testing was this perfect.

 

No -- it does not mean you do not have celiac -- it only means one of two things:

 

1.  the damage is early and not advanced enough to classify as celiac

 

2.  the doctor took biopsies from areas that do not yet have the level of damage to call it celiac with certainty

 

Welcome...would normally respond with more detail to both your posts...sadly can't right now, but will check back.

 

Hang in there

[greenbeanie]

Welcome to the forum! My situation is similar - daughter diagnosed with celiac last summer at age 4, and decades of symptoms myself but negative celiac tests (including negative biopsy, though they only took four samples and none from duodenal bulb, and didn't check for lymphocytes, so I'm not entirely confident about the results). More info is in my signature and in previous posts, which you can see by going to my profile and clicking on "Find Content" if you're interested. I generally didn't have episodes of acute pain, but I did have awful sweating episodes after eating, and often had drenching night sweats multiple times per night. I'm 38 but the sweats started years ago, and hormone tests pretty much ruled out perimenopause (and also thyroid problems) as the cause then. I've had tons of tests but always got negative or inconclusive results, so I still don't have a clear diagnosis.

However, I've had tremendous, life-changing improvements on a strict gluten-free diet. Decades of daily diarrhea disappeared within a week, insomnia that had previously not responded to any treatment (including medication) improved dramatically, rashes got much better, and memory and balance problems improved. The sweats stopped quickly too - I forget exactly when, but within a couple weeks, I think. When I had one bite of gluten about five months into the diet, amid skepticism from my doctors that was making me start to wonder if this was all the placebo effect, the night sweats and balance problems returned immediately (and the sweats lasted for eight awful nights).

Anyhow, I hope you are able to get clear answers yourself. But if you're not, I'd strongly urge you to have a good long trial of a gluten-free diet yourself, being as careful as you would be with a celiac diagnosis. Good luck!

[Mia'smommy]

Welcome to the forum! My situation is similar - daughter diagnosed with celiac last summer at age 4, and decades of symptoms myself but negative celiac tests (including negative biopsy, though they only took four samples and none from duodenal bulb, and didn't check for lymphocytes, so I'm not entirely confident about the results). More info is in my signature and in previous posts, which you can see by going to my profile and clicking on "Find Content" if you're interested. I generally didn't have episodes of acute pain, but I did have awful sweating episodes after eating, and often had drenching night sweats multiple times per night. I'm 38 but the sweats started years ago, and hormone tests pretty much ruled out perimenopause (and also thyroid problems) as the cause then. I've had tons of tests but always got negative or inconclusive results, so I still don't have a clear diagnosis.

However, I've had tremendous, life-changing improvements on a strict gluten-free diet. Decades of daily diarrhea disappeared within a week, insomnia that had previously not responded to any treatment (including medication) improved dramatically, rashes got much better, and memory and balance problems improved. The sweats stopped quickly too - I forget exactly when, but within a couple weeks, I think. When I had one bite of gluten about five months into the diet, amid skepticism from my doctors that was making me start to wonder if this was all the placebo effect, the night sweats and balance problems returned immediately (and the sweats lasted for eight awful nights).

Anyhow, I hope you are able to get clear answers yourself. But if you're not, I'd strongly urge you to have a good long trial of a gluten-free diet yourself, being as careful as you would be with a celiac diagnosis. Good luck!

WOW! Your store is VERY similiar to mine. Thank you for replying and sharing. I, too, have joint pain. I've been to the orthopedic doc several times getting x-rays trying to figure out why. First he blamed it on back-to-back pregnancies, then early stages of arthritis, then cardio exercise.

 

I did try a two-week strick gluten-free diet when my daughter got diagnosed, and honestly felt great. I just felt like without the "true" diagnosis, it was just because I was eating "better." Going to have the endoscopy and colonoscopy done. He said he will look in the duodenal bulb also. That is where they found my daughter's damage. That is why her gastro said it was early stages.

 

Thanks again. And good luck to you

[Mia'smommy]

I wish the testing was this perfect.

 

No -- it does not mean you do not have celiac -- it only means one of two things:

 

1.  the damage is early and not advanced enough to classify as celiac

 

2.  the doctor took biopsies from areas that do not yet have the level of damage to call it celiac with certainty

 

Welcome...would normally respond with more detail to both your posts...sadly can't right now, but will check back.

 

Hang in there

Thank you for replying. For those two reasons, I feel like I shouldn't waste my time and money (whatever ins. doesn't pay) on these procedures! But will probably have them done. Good luck and thank you again.

[NoGlutenCooties]

FWIW... I do think it's useful to have the endoscopy even though there is a chance of a false negative result.  They check for other possible issues, not just Celiac, and it's good to know that there isn't something more serious going on.  (Don't mean to suggest that Celiac isn't serious... but they check for certain types of Cancer too - which in my book is more serious.)

[Fenrir]

The problem with celiac is it can be very hard to get a definative diagnosis. All the blood tests can be negative and you can still have celiac. You can have and EGD done and come back negative and still have celiac. Some people just end up resorting to self treating with a gluten-free diet. However, you should attempt to get a definitive diagnosis for several reasons.

 

#1- In the future, if you need other treatement or testing due to celiac disease, it will make it more likely that the insurance company will pay the claimes.

 

#2- If you have an official diagnosis you can write off a portion of the cost foods/products that you buy that are gluten-free when you do your taxes.