As I am researching celiac big time since Curran is a candidate for it and is being tested right now I am curious as to how many on the board have had this disease come up for their GERDling?

Andrew was tested for it due to his Chronic Bowel Issues, but thankfully was negative.

When do you get Curran's results?

Eliana was tested for Celiac's but it came back negative. check out www.celiac.com (http://www.celiac.com) it's a great site. even though she tested negative doesn't mean she doesn't have celiac. the test isn't very accurate under the age of 6.

Man, you are FAST! lol

I was posting the poll to this as you were responding!

Curran has already started the bloowork and with any luck it will be back within a month. We are awaiting his scopes (upper and lower) for Sept 11. Nice date, eh? Gee.

I know my ped is receiving other bloodwork results already and I am just waiting to see her in a few weeks to see what they are.

I agree it is not accurate for under age 5 from what I have come across. This is Curran's first scopes for it (and for GERD) but his second bloodtest for it which was negative over 2 years ago.

To my understanding all testing does not rule it out at all, you can only rule it IN if positive. Does that make sense?

Has anyone gone gluten free and seen a difference despite testing negative for celiac? We are going to do a 2 week gluten free trial to see how it goes. It will be agonizing if he improves on it as it will skew the scopes and we do not want to do that. Nor do I want to put him back onn foods which have been causing him pain either. We will cross that bridge when we come to it though.

i've been meaning to do a gluten/casein/soy FREE diet for both of us but haven't had a chance yet. plus have to get rid of all the bad foods first can't just throw them all out

Catherine's test was negative although there was zero chance of it being positive as she hadn't consumed a material amount of gluten in her life at that point. She was tested because her GI found one of the two markers for celiac during her scope.

There has been no testing for it for us... mind you we haven't really had any bowel issues either..

No testing for us either, but Jackson has not had any tests thus far.

We have had it tested, he is not celiac, which I would have known anyway there is no family history whatsoever, however in saying that, we haven't eliminated wheat but decreased it and it has helped a lot, so I don't know which part of it is actually affecting him if you KWIM?

B's GI thought very strongly that she had celiac early on and ordered a blood test. I am Irish and there are a couple of celiacs (distant cousins) in our family, but I wouldn't say it's a strong family history.
B was found to have low levels of IgA in her blood, so the blood test for celiac was inconclusive. Her GI found no sprue when he did the endoscopy, so he ruled out celiac as a possibility for her. However, he did say that she "looks like a celiac kid", citing her long eyelashes, pale complexion, small size and frequent illnesses. He told us that if she continues to have issues with growth/weight gain into early childhood, it wouldn't hurt to test again.

She doesn't seem to have any other symptoms that would point to celiac at this point, so I'm going under the assumption that she does not have the disease.

Never been tested for it, although she does have her first GI appointment tomorrow and its hard to say what he may want to test her for. As far as I know, no one in the family on either side has this but I could be wrong. Bethanysmom, you mentioned that the doc said your little girl looked like a celiac kid, do kids with this really have long eyelashes, look pale and are on the small side? sounds just like Linda-Marie. Although I believe she got her long lashes from her daddy. she is petite looking. don't see how she would have gotten this though.

Where do I begin?

My son had FTT issues starting around 8 mos, about the time we started solids. He was almost walking and then just stopped progressing and just scooted everywhere until 17 mos. when he finally started walking. Some of his teeth came in with no enamel in places, causing lots of cavities even though I am very particular about brushing. He's even having to have dental surgery on Friday for all the problems. He started having geometric patterns on his toungue. LOTS of gas and diarrhea (5-10 x per day). He started having lots of nasal allergies and asthma with dark circles under his eyes. His speech was delayed and he was sooooo skinny. He had reflux and just plain refused to eat most of the time. I weaned him at 20 mos. just after having an endo to biopsy for celiac that came back negative. They labeled him as having Toddler's Diarrhea and sent us home saying it would improve with time. It got worse instead.

At 28 months he was still in the same size clothes and hadn't gained any weight in 9 mos. His sister was born with a major heart defect and we were away from home for 6 weeks while family cared for him and our daugther underwent open heart surgery from which she did not recover well from. She was starting to show similar symptoms and I mentioned that we had tested our son for celiac, but was dismissed multiple times. After going home, she started projectile vomiting, retching, constipation, and not gaining any weight. She underwent a barium swallow test that showed severe reflux. Against my better judgement she underwent a fundo and got a G-Tube, but still did not gain weight.

During this time our son's diarrhea continued and he still did not grow. Potty training was impossible since he couldn't control his bowels. We took him back to the GI and he did blood work for celiac. His IgA and IgG were elevated, but the other antibodies were normal. This was considered "inconclusive" so we went back for another biopsy, which was again negative. I just knew in my gut it was celiac, but was told it wasn't because of the negative biopsy.

Our daughter continued to have issues, so I tried a gluten free diet while nursing her. The results were amazing in that she gained 17 oz. in just 2 weeks. The blood from her stomach disappeared and her vomiting stopped. We tried to get drs. to test her, but they refused, saying she was just sick because of her heart. After she improved so dramatically, they wanted to test her, but I wasn't about to put her back on gluten. She was too fragile.

Meanwhile, I found out that testing in kids under 5 is usually inconclusive or false negative because the damage is not yet severe. At 3 I decided to try the diet with our son. The results were so amazing. His attitude improved in a few days, he started sleeping through the night for the first time in his life. His D stopped in 3 weeks and he was potty trained in 4 weeks. His toungue cleared and he has grown a lb. and an inch a month since then. His asthma stopped (he was on nebulizer, inhaler, singluair, and claritin every day), the dark cirlces disappeared.

We are talking miraculous improvement in both kids. If any of you have had negative tests, but have a kid with consistent symptoms, please try the diet. My kids really helped to diagnose each other and I don't think my daughter would have survived if we hadn't tried the diet. I'm really not exagerating here, either.

The weird thing about all of this is that I never considered myself as having a problem with gluten. A few months into the diet I noticed that a skin rash I has always had was clearing. I have also had terrible joint pains since childhood that could not be diagnosed. The drs. called the growing pains, but I still had them at 30. They are now gone too. Turns out that these can also be symptoms.

We have no history of celiac on either side of the family, but lots of autoimmune diseases. My husband and his brother are both type 1 diabetics. My side of the family has thyroid disease and rhuematiod arthritis. Fibromyalgia and type 2 diabetes are also rampant. I now think 2 aunts and 1 uncle probably have it and my grandmother probably had it due to stomach issues.

Celiac is the most underdiagnosed disease in the US. There are so many false positives and the symptoms are so varied. It makes it really hard to diagnose. I know this has been long, but I wish I had known a long time ago what I do now.

Chelsea has a lot of symptoms. Wouldnt know with Gavin, he is on neocate but I know he has some kind of trouble with foods--we just dont know which yet. Chelsea has been tested once, it came back negative but it is still being considered. She has a lot of symptoms--and to comment on what Bethany's mom said (mary--right??:wink: ) she has really long eyelashes, is very small for her age and pale! She is 4 years old and weighs 30 pounds and is 38 inches. She dropped off slowly around age 2 and hasnt picked back up. She has lots of symptoms. I will say though that she really does not eat a whole lot of gluten containing foods. I have wondered if she ate more, if it would be worse. If her next scope comes back clear, I have considered doing a neocate only trial to see which foods cause her symptoms. She is intolerant to too many things to just cut out gluten. We wouldnt know if it was another food or not.

I am adopted and dont know my medical history but my hubbys side is clear for this.

Both my kids have the really long, thick eyelashes too. They're just beautiful, but I'd just as soon they not have them if it means celiac!!!:razzing:

My son had also self eliminated a lot of gluten containing foods. He would take the meat and cheese out of the middle of a sandwich and eat the bread. He wouldn't eat cereal or crackers. I guess his body was telling him he didn't need it. I also wondered if this was skewing his test results.

My mom left when I was little, so I don't have any info on her side of the family, but I think we have it on my Dad's side.

Celiac was mentioned several times by different doctors, and a few months ago, he was tested. The test results were negative, but yesterday, his NP at his peds office brought it up again! Who knows, right? I know, bad attitude, but I have a serious chip on my shoulder at the moment... :x

Getting tested right now, but there s no family history of any digestion problems.
My brother had bleeding ulcers and tummy troubles when he was a teen, but this was most likely because he ate some rat poison when he was 7 years old.
But My sister has asthma, allergies, and pain. She sees a chiropractor monthly.
After all the testing is done and it's still a mystery as to why Eric feels so bad, I'm trying the gluten free diet for him. I have already decided.

It would be great if they could come up with a more dependable screen for the kids.