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beachymama

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beachymama Newbie
beachymama
Posted

Hi everyone!

I'm new here. :) I apologize if this ends up being muddled wall-of-text, I just have so much to say!

I am a 33 year old female, struck with "tummy troubles" sometime around when I started high school. I managed to get through most days by simply not eating until I was safely home and near my bathroom. My parents took me to a gastro, who did (I believe, this was a long time ago) an upper GI only. I had no lower GI or colonoscopy. The gastro prescribed something called Levbid, which I ceased taking shortly thereafter because it didn't help.

From my teen years until now, I just managed to do the above -- I didn't eat. I didn't eat while I was at school, I didn't eat when I worked a full time job, I didn't eat when I had to leave the house. Yet, somehow I'm 5'6" and 230 lbs.

I did have my gallbladder out in 2008. They had done an ultrasound which showed no problems at all with the gallbladder. They removed it anyway and found it was completely full of gallstones which hadn't shown up at all on the images. When I tell people I had my gallbladder out, they assume my urgent bathroom habits are a side effect of that. Having my gallbladder out did nothing but ease the excruciating pain I was getting. I just chalked everything up to miserable untreatable IBS.

I never knew much about celiac until my BFF said my symptoms sounded a lot like it. I always assumed celiac was something like a nut allergy or something - consume gluten and you end up in the ER with anaphalaxis. Not so much, it seems. I looked at the symptoms of celiac, and I have MANY even beyond the bathroom issues -- iron deficient anemia, ADHD, tooth problems (this could be a whole other ranting post in itself about my tooth issues), nosebleeds, migraines, easy bruising, insomnia, it goes on and on.

I went to my regular doctor back in March in hopes of having a celiac panel done while I was having my normal yearly cholesterol and other fun tests done. I received a letter in the mail saying that my results were "within normal limits" and I decided to see a gastro for further testing.

I will spare you the nightmare which has become the gastro, and suffice to say I will be switching doctors as soon as I get the results of my latest genetic testing (which the lab screwed up TWICE) My father, who has ulcerative colitis, sees a wonderful doctor I should have seen to begin with.

So, it seems that the "comprehensive celiac panel" only consisted of these two results:

IgA, Serum --- 146 --- 88-410

tTG IgA AUTOAb --- 4 --- <20

Shouldn't there have been more to it?

I don't know what I'm hoping for.. I just want answers. I'm tired of being sick, I'm tired of not being able to do the stuff I want to do.

Thanks for any advice/insight/anything. :)

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beachbirdie Contributor
beachbirdie
Posted

Hi everyone!

I'm new here. :) I apologize if this ends up being muddled wall-of-text, I just have so much to say!

So, it seems that the "comprehensive celiac panel" only consisted of these two results:

IgA, Serum --- 146 --- 88-410

tTG IgA AUTOAb --- 4 --- <20

Shouldn't there have been more to it?

I don't know what I'm hoping for.. I just want answers. I'm tired of being sick, I'm tired of not being able to do the stuff I want to do.

Thanks for any advice/insight/anything. :)

Hi beachymama, welcome to the forum!

Don't apologize for a long explanatory post, it's perfectly fine!

As for testing, you are correct. They did not do a very complete job of testing. In addition to what they tested, they should have done:

Deamidated gliadin peptides, both IgA and IgG version

anti-EMA (anti-endomysial antibodies)

Some people only test positive on ONE of the types, and if they don't test all, they might miss a diagnosis.

You certainly have a lot of symptoms that COULD be celiac related, hopefully your new doc will help sort things out.

Be sure you get paper copies of all your labwork as the results come in, and share them if you are comfortable sharing. Doctors so often will say "normal" when you aren't really in a good place lab-wise. There are quite a few experienced people here who can give educated insight on your tests.

You've come to a great place for support and information. Folks here are very friendly and very helpful!

MitziG Enthusiast
MitziG
Posted

Well, the panel is typical, as in it only included one actual celiac test. Though they at least tested total IGA which is important, cuz if that is low, it negates the other test anyway.

You still need:

Ttg IGG

Deamidated Gluten Peptides

Endomysial Antibodies

Do not be surprised if those are negative too though. Celiac is notorious for false negatives. And then of course, gluten intolerance, which is far more common than celiac, can not be tested for at all.

The gallbladder is a big red flag for celiac- google the connection.

Weight gain is as well, but most drs do not know this and will completely dismiss the possibility of celiac in an overweight person.

For now, keep eating gluten until all testing, including biopsy is done. Then go on a strict gluten-free diet and find out for yourself if gluten is your problem!

beachymama Newbie
beachymama
Posted
  • Author

Thank you for the warm welcome and information!

I'm very excited about seeing my new doctor. My dad talked to him on Tuesday (he had an appointment scheduled for his own stuff) and the doc was appalled at the way I was being jerked around by my current doctor. He sent home some helpful handouts for me and said I should call to set up an appointment immediately before my current doc does "any more damage" ! I was just tickled that he not only knew what celiac was, but is apparently a pretty big deal around these parts with research and stuff.

I'm still waiting on my genetic test to come back. They said it will take about 10 days to get the results and I'm so not patient.

If the genetic stuff comes back as a screaming positive, does this mean I should have my children tested as well? I have 3 - ages 12, 8 & 6. My 12 year old had awful GERD as a baby, the 8 year old is ADHD like me, and the 6 year old went through several years of unexplained high fevers which they finally just diagnosed as periodic fever syndrome (PFAPA) because that's what they dub it when every test in the book comes back negative. It blows my mind that perhaps my ADHD child could just be having a gluten reaction and could possibly get off his stimulant meds. None of them show any kind of tummy symptoms like I have, but my BFF is celiac and hers manifested as terrible migraines - so I'm guessing anything is possible.

ETA: My paternal grandfather died from lymphoma, which is another reason the new doctor is all "get in here now" with me. I never even realized celiac could cause cancer. :unsure:

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