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Ugh! Negative Celiac Panel Blood Test Result... What Next?

KimKF

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KimKF Apprentice
KimKF
Posted

So... Daughter has to stay on gluten? Her next blood test is for the two genes that carry the predisposition for Celiacs. She will have that done tomorrow. The only relief from the diarrhea and abdominal pain she has had the the past 3 weeks is 1 day after going gluten free for 24 hours (repeat, 1 seminormal stool 24 hours after trying 1 day of gluten free). They told her to go back on the gluten, due to effective testing needs. Diarrhea still. I thought it was odd for her to have one somewhat normal stool a day after our attempt at gluten free. So... Dr. calls today saying her Celiac Blood Panel test was negative. She is so despondent, as she was so hoping to have some answer, even though we know this is so typical.

How does she find relief of the diarrhea, abdominal pain and bloating through this testing process? Dr. told her to go buy some Maalox and stop the pasta and bagels (high carbs) and stick to toast (any other suggestions?)! After her blood tested for the two genes tomorrow, the next step is the endoscopy (if necessary). Does anyone suggest I order any test from Enterolab? Or, are all those the same thing?

I want to tell her to just go Gluten Free right now! At least for the time being, what can it hurt. It can't effect a blood test for an inherent gene. And, if she feels some relief in the next couple of days, doesn't that suggest something?

She is at her wits end! Goes nowhere, sees noone! The toilet is her best friend!

Important to note here... she has Hashimoto's Thyroiditis which has been strongly linked with Celiacs (we found that out on our own), as well as her looooooooooong history of Gastroenteritis, Appendicitis, IBS diagnosis when nothing else could be determined. She has dealt with ADD, depression, hair loss, bloating, etc!

I say, gluten free now. Someone convince me otherwise.

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mushroom Proficient
mushroom
Posted

It is possible to have a positive endoscopy with negative blood work. She does need to stay on gluten for the endoscopy if she is going to have one. The genetic test, of course, is unaffected by whether or not she is eating gluten.

Skylark Collaborator
Skylark
Posted

I hope your doctor is working with you to get an endoscopy scheduled really fast.

You could order Enterolab and it will probably come back positive. It's extremely sensitive, but not the same as a celiac diagnosis. The E-lab genetic test is the same as your doctor will do, so no sense getting that part. All you would really need to order is the stool anti-gliadin IgA. E-lab won't help her as far as doctors notes for school and whatnot. Also if she's positive at E-lab it mostly means she needs to try the diet, which you're planing on anyway.

I don't know about relief during a gluten challenge. As an adult, I had no need for a formal diagnosis so I never did one.

ravenwoodglass Mentor
ravenwoodglass
Posted

If I was going to do a genetic test I would pick Enterolab over most of the ones the doctors order. Typically doctors only test for the 2 most common celiac associated genes. The results in my family of having the test for just those 2 genes was disastorous and resulted in one of my children going back on gluten and blaming all symptoms now on stress. Enterolab tests for all the known ones associated with intolerance or celiac.

Skylark Collaborator
Skylark
Posted

If I was going to do a genetic test I would pick Enterolab over most of the ones the doctors order. Typically doctors only test for the 2 most common celiac associated genes. The results in my family of having the test for just those 2 genes was disastorous and resulted in one of my children going back on gluten and blaming all symptoms now on stress. Enterolab tests for all the known ones associated with intolerance or celiac.

Except that they label everything but DQ4 "associated with gluten intolerance". :lol:

Agreed it is a more thorough test, as they're identifying all the different beta chains.

missceliac2010 Apprentice
missceliac2010
Posted

Forget the tests...go gluten-free now before she has a nervous breakdown! Unless she needs them for school, etc....of course that's your call.

That's my honest opinion!

Good luck,

Marz Enthusiast
Marz
Posted

Tough call :( When is the endoscopy scheduled for? Hopefully your doctor can schedule it soonish so that she can go on the diet asap.

I'm not sure how quickly the small intestine heals - perhaps if it's in a weeks time she can start going gluten free a few days beforehand? The villi aren't going to heal overnight...?

Even being "gluten-light" might affect the results... But you can try avoiding pure wheat, and just have wheat starch in her diet to keep the inflammation up... for what it's worth...

** Edited to say - it may be that intolerances to other foods are causing the worst symptoms at the moment, though gluten is probably the cause of these food intolerances in the first place.

I know that for myself, chicken, egg, turkey (for example), causes violent reactions in my intestine, sometimes only 2 days after I've eaten it. And they are 100x worse than just gluten by itself.

If the endoscopy is only a few weeks time, she might want to try an elimination diet to see if she's reacting very badly to certain foods. Of course if it's gluten itself causing the violent reactions, she won't get relief :( And wheat is usually eliminated first, so again... affecting the test results...

Look up leaky gut syndrome regarding food intolerance and the link with gluten.

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SJD Rookie
SJD
Posted

Hi,

I'm new here, but I recently (3 months ago) put my 7 yr old daughter through NUMEROUS testing, including an endoscopy and a colonoscopy only to get ALL negative results. The day after the procedures I took her off gluten and within 48 hours she was perfectly fine! I have struggled with this her whole life and still to this day I have NO doctor that will tell me she has celiac. It is still a constant struggle figuring out all the hidden gluten, because she'll be doing great and then all of a sudden her symptoms are back. I'm getting to be a very good detective. I now believe that I and possibly my other two children have it as well.

I would URGE you to stop doing the testing and just go gluten free. It's NOT worth the pain.

I will pray that whatever you do will work fast. :)

nora-n Rookie
nora-n
Posted

Here in Europe we recommend to stay on gluten til the endoscopy and testing is done.

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      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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