Could This Be Celiac?

[AngelaMH]

We seem to be taking a long and winding road toward a Celiac diagnosis, and sometimes I'm not sure we're on the right road? Did you have a complicated diagnosing process?

Our daughter has UC, since age 5, and she's done great with treatment; but then she began having stomach pains last October, and that's when we got this crazy path. Since then she's had 2 sets of bloodwork done, a Barium Xray, 3 endoscopies, and 2 colonoscopies: blood says positive for Celiac and positive for Chron's markers (though neither one is a firm diagnosis, they say), biopsies say "doesn't look like Celiac, looks more like Chron's" and "doesn't look like Chron's, can't tell if it's Celiac", Barium Xray showed Reflux which is being handled with Prilosec since last November and her stomach pain has GONE AWAY!! She is strong and healthy, continues to gain weight (is nearly 10, weighs 98 lbs, is 4'8"), and feels fine! Since all these tests have continued to be inconclusive, the doctor has now put her on a gluten-free diet for the next 3 months and then we'll do another endoscopy and see if her duodenum looks better. If so, then doc says it'll be a firm diagnosis of Celiac, if not then doc says it will be Chron's.

In the meantime, I'm watching a healthy, happy child and I can hardly believe that she has either of these possible conditions. What's your opinion: did we get lucky and catch this so early that she hasn't yet had any complications, or...what?

Her Ped GI is a leading DR in the South Florida area, and I have complete confidence in her, which serves to further confuse me.

I would love your feedback!

[Darn210]

A positive blood test is pretty darn conclusive. False positives are rare (and frankly I haven't heard of any at this point but I never say never). The endoscopy can be hit or miss. Celiac is patchy and if they don't biopsy the right spot, they can miss it. My daughter's GI thinks it's just a matter of time (uhhh . . . that will probably actually be years) until they no longer require the endoscopy and the diagnosis will be based on a positive blood test.

Is she still on the Prilosec? My daughter was on prevacid. Her symptoms (acid reflux with regurgitation) went away. Then came back about 7 months later. Then went away. Then came back about 3 months later. Then went away. . . intervals got shorter and shorter and then just stayed. In the intervals when she wasn't having problems, we took her off the medication, but at the end, even when she was on the medication, it couldn't completely stop the acid reflux.

If your daughter is still on the Prilosec, it could be masking/controlling her symptoms but it won't prevent the damage in her small intestine.

About 8 months after going gluten free, my daughter was no longer on any medication.

Good Luck. Welcome to the forum. And ask all the questions you want!!!

[Angels~Exist]

I had a false negative blood test. I haven't heard of anyone getting a false positive one, either. I didn't have an endo but they diagnosed mine by positive results on the gluten free diet and my symptoms.

[ravenwoodglass]

We seem to be taking a long and winding road toward a Celiac diagnosis, and sometimes I'm not sure we're on the right road? Did you have a complicated diagnosing process?

Our daughter has UC, since age 5, and she's done great with treatment; but then she began having stomach pains last October, and that's when we got this crazy path. Since then she's had 2 sets of bloodwork done, a Barium Xray, 3 endoscopies, and 2 colonoscopies: blood says positive for Celiac and positive for Chron's markers (though neither one is a firm diagnosis, they say), biopsies say "doesn't look like Celiac, looks more like Chron's" and "doesn't look like Chron's, can't tell if it's Celiac", Barium Xray showed Reflux which is being handled with Prilosec since last November and her stomach pain has GONE AWAY!! She is strong and healthy, continues to gain weight (is nearly 10, weighs 98 lbs, is 4'8"), and feels fine! Since all these tests have continued to be inconclusive, the doctor has now put her on a gluten-free diet for the next 3 months and then we'll do another endoscopy and see if her duodenum looks better. If so, then doc says it'll be a firm diagnosis of Celiac, if not then doc says it will be Chron's.

In the meantime, I'm watching a healthy, happy child and I can hardly believe that she has either of these possible conditions. What's your opinion: did we get lucky and catch this so early that she hasn't yet had any complications, or...what?

Her Ped GI is a leading DR in the South Florida area, and I have complete confidence in her, which serves to further confuse me.

I would love your feedback!

I don't know if you caught it early or not, if she had been diagnosed with chrons at 5 then she may have had celiac for quite some time and the meds have been masking the symptoms. If her blood tests are positive then you can be pretty certain that she has celiac. Celiac can end up effecting much more than just the gut. It can lead to thyroid issues, gallbladder problems, it can attack the brain, skin well pretty much any organ. I am glad the doctor is having her do the diet for a few months, make sure she is strict with it! You have found a great place for info and support, welcome and ask any questions you need to. One last note, make sure that you check any meds she is taking, OTC and script for gluten statis. Generic drugs are the riskiest and you need to have the pharmacist check at each refill as the binders can change at any time.

I should also note that after I was finally diagnosed the GI at last opened his ears, (I was told for years I had IBS) and told me that 'Gee those weren't IBS symptoms that sounds more like Chrons'. At that point I had been sent back to him for confirmation of celiac after I had a physican guided elimination diet that pinpointed the issue with gluten. He ordered me to do another gluten challenge to confirm with an endoscopy. He never got to do the endo because the challenge gave me such a severe reaction that my intestines were bleeding and I was in such rough shape I couldn't even make it to the exam. If the next endo is still inconclusive and you do put her back on a gluten diet watch her reaction to adding the gluten back in. That can sometimes tell us what the testing can not.

[kcfarmer]

I had 3 false negative blood tests, and a negative biopsy . Finally, after 3 different DRs and 3 different trials, they decided that it was Celiac. I had been sick for years and noone ever knew what it was. If going gluten free fixes the problem then don't mess with it. Just eliminate gluten. I asked why the blood tests were all negative and the DR has said that sometimes weird things happen. Go figure.

[Nancym]

I thought Crohn's was in the lower intestine and Celiac is in the small (upper) intestine. Not sure how they could interchange one for the other.

Some doctors believe that crohn's and diverticulitis are just manifestations of gluten sensitivity in the lower intestines.

[OliveBranch]

I have had Crohn's since I was 12 -- in my case, it manifested entirely in the large intestine, though it can also happen in the small intestine (at least in the ileum -- not sure about other parts). For me, the biggest standout symptom of the Crohn's was bleeding, and the large ulcers from this were very visible in colonoscopies. If your daughter also has ulcerative colitis, it can be really hard to tell these apart -- I was misdiagnosed for several years with UC. But if stomach pain is your daughter's only symptom, I'd be surprised if it were Crohn's -- or if it is, it would have to be quite mild.

I also believe that I have Celiac disease that was triggered a couple of years ago (though I have no diagnosis) and have begun a gluten-free lifestyle; I figure that cutting gluten will be good both for my (definite) Crohn's and (probable) Celiac, so it would probably be beneficial to your daughter, too, whichever she has.

Good luck!

[TrillumHunter]

The current thinking is leaning toward diagnosing with blood work only. Endoscopy can be a misleading in the early stages.

From what I understand, a gluten-free diet is very beneficial to people with Crohn's anyway. I have a friend that follows it for that reason.