Help With Lab Result From Celiac Panel

[dlmclaugh]

Hi,

I am new here and hope that someone could help me understand what my daughters lab results mean. First I will give you a little background...

My daughter is 7 years old and has had stomachaches for as long as I can remember. She was a very gassy/colicy baby, we eventually put her on a soy formula. That did help but we still had to give her mylicon gas drops pretty much every day. When she turned one, her DR told me to try to introduce milk because alot of babies that have had problems on formula will be okay with regular milk. We did that and it did not go well so we went back to a soy milk and eventually switched her to a lactose free milk. We tried to transition her to regular milk a few times up until she was 3 when her DR ordered a test (cannot remember the name of it......I had to take in a stool sample). From this test, he told me that she was lactose intolerant. We kept her on lactose free milk and avoided foods containing lactose. Over the next couple years she started having more and more stomachaches. Everytime I would go to the DR they blamed it on constipation even though I was not so sure of that. We were still having to give her the mylicon gas drop on a regular basis even at 7 years old....I do not even know if it really helps her that much, I just did not know what else to do. She said that it helps sometimes. So when she turned 7, I took her to a new pediatrician to see what she would say about the stomach aches and she told me that it was possible that it was just her being worried about the upcoming start of the new school year. She recommended that I wait until after the school year started to see if the stomach pain went away. Well, we are now 6 months into the new school year and i was fed up with not knowing what to do for her when she is crying around that her stomach hurts everyday! So I made another appt with the DR. She ran a bunch of tests and told me that she was pretty sure that everything would come back okay but either way she was going to send her to a GI specailist because the pain was going on for too long. I got a call a few days ago with the receptionist telling me that her gluten numbers were high and they were sending her to a GI specialist to have further testing done. Here are what her results show.

GLIADIN IGG, IGA ABS (NOTE)

Analyte

---------------------------------------------------

Gliadin IgG Antibodies 29.9 HIGH

(ref range: < 10.0)

Units: U/mL

Gliadin IgA Antibodies < 5.0

(ref range: < 5.0)

Units: U/mL

TISSUE TRANSGLUTAMINASE AB< IG (NOTE)

Analyte

-----------------------------------------------------

Transglutaminase IgG Autoantibodies < 6.0

(ref range: < 6.0)

Units: U/mL

Transglutaminase IgA Autoantibodies < 4.0

(ref range: < 4.0)

Units: U/mL

I was not sure if having the one positive result within the Gliadin IgG part of the test was enough for her to really have celiac disease or gluten intolerance. I have been reading online and came across something that made me think that it could be nothing or it could be celiac or even another autoimmune gastrointestinal disorder. What are the chances that this is Celiac? Is there anyone that can help me understand this? We do not have our 1st appt with GI for another 2 weeks and I feel like all I am doing is searching online trying to figure it all out. i am just so frustrated with not knowing why she always has to deal with some level of stomach pain. i should add that she has become very irritable and tired lately, I feel like it could have something to do with her always not feeling well. She gets mouth ulcers here and there is another big thing that I have noticed is that she is starting to get stomach aches after eating foods that contain lactose even though she take the lactaid pill prior to eating. Thank you in advance for all of your help.

Denise

[dlmclaugh]

Last night after I posted my question, I thought of a few more things that have been going on with my daughter over the past 3 months.

She has been doing gymnastics/tumbling for 5 years and loves it. over the past few months has has been tiring very easily during her routines and has even gotten to the point where she is gasping for air and out of breath. Her DR told me that it was probably activity/exercise induced asthma and gave her an inhaler to use. Is there any connection with gluten intolerance and asthma? She has also been complaining of headaches. Her WBC is elevated but not too high...it was 14. i assume that could be from inflammation???? Did any of you have a high WBC caused from celiac?

As I said in my first post, we have our 1st appt with the GI DR in 2 weeks. What should I expect from that visit? What if they tell me that she does not need the endoscope? I really feel like they need to do it to figure out what is going on, even if it ends up not being celiac or gluten intolerance.

Thank you again for taking the time to read and respond.

[ravenwoodglass]

It is too bad that they didn't run a total IGA as that would make the tests for gliadin IGA a false negative. It is significant that her IGG was high and you are in the right place. Don't take her gluten free until after the GI doctor is done with his testing. Then give her a trial strictly on the gluten free diet. Chances are good that will take care of her tummy issues. Welcome to the board and ask any other questions you need to.

[dlmclaugh]

Thank you for your response.

Do you think that maybe once we see the GI DR that they will run their own blood tests or is this enough to do an endoscope?

[Cara in Boston]

We are in the middle of the process right now with my 5 year old. I am finding the process to be SLOW and frustrating, but I guess everyone just wants to make certain the diagnosis is correct if we are going to change a young child's diet for the rest of his/her life.

We went to PCP in December, got first blood test results in January, (positive only for IgG and TTG IgG), got in to see GI in February, ran more blood tests (genetic type and newer DGP tests), then we switched doctors because we were able to get someone who specializes in Celiac, saw her this week. She did not have all the results from the previous doctor, but after reviewing them (again positive for the IgG and the gene) I believe she will schedule an endoscopy (another month wait).

I get the feeling they want to do as many tests as they can that may rule OUT Celiac, so they could avoid the endoscopy, but none of them really rule it IN. I just wish they could do them all at the first appointment.

It is frustrating, but I get it. I would hate to make all these changes and still wonder if we got it right.

From what I have read, the fact that the IgG numbers are coming up positive means (at the very least) that my son is gluten intolerant. So we will be starting the gluten free diet no matter what the next tests show.

Cara

[ravenwoodglass]

Thank you for your response.

Do you think that maybe once we see the GI DR that they will run their own blood tests or is this enough to do an endoscope?

That is not a question that I can really answer. One thing you could do is ask the GP to run a total IGA so that you have that test done when you see the GI. Some doctors will diagnose based on positive blood work but others will only diagnose with a postive endo.

[dlmclaugh]

We have our 1st appointment with GI in 6 days. It cannot come any quicker. I had to pick my daughter up from school today because her stomach hurt. I knew she was not really sick but I assume the office staff thought she might have the flu. She came home and laid down for about 20 minutes and is up running around again. It happened right after lunch, she only ate the crackers and a little bit of peanut butter that she had in her lunch. When she got home, she told me that is seems like she always gets the stomachache 5 to 10 minutes after eating. And I am not sure if the stomachache that she is complaining of it a gas type pain or what. she is only 7 so I don't think she can tell me exactly what the pain is yet.

It seems that whatever is going on with her, it is getting worse and worse. would gluten intolerance work this way? is it different for everyone? would the pain come right after eating and pass 30 minutes later? I am really hoping that her GI DRs agree that she needs the endoscope, I am tired of not knowing what to do to make her feel better. This has been going on most of her 7 years of life but has been somewhat manageable but the past year it has been getting much worse to the point where she is missing school because of it.

[Cara in Boston]

I just wanted to add, our doctor reviewed all of my son's test results (positive on only the IgG tests) and is still concerned. His symptoms have basically resolved (except for behavior) so I don't know what to think. The next step is an endoscopy.

The MD said that since he has enough IgA (you daughter didn't seem to have a total IgA test done?) she is not sure what the results mean. He may be just gluten sensitive, he may be in the very early stages of celiac (no measurable damage), or he may not (yet) have celiac and develop it later. We may never find out because once he goes on a gluten free diet, no further damage will occur to measure and diagnose at a later date.

His symptoms were daily stomach ache (usually in school after lunch and right at bed time - about 30 minutes after dinner) for about 2 weeks. At the same time, his behavior went from normal, "spirited" 5 year old to horrible tantrums, melt downs, etc. After the first blood tests came back, I started learning more about celiac disease and realized he had more "symptoms" (dark circles under his eyes, excema, frequent bloody noses, joint pain, etc.)

The stomach aches went away, but in the months that followed, he was definitely low on energy, didn't want to play outside, maybe even depressed? Things he used to enjoy were now "boring".

Now, in the last two weeks, we've seen a return of his sense of humor and he has more energy. Not sure what is going on. Maybe the symptoms come and go? But alas, the tantrums are still with us.

There are lots of false negatives with children. I am pretty confident he has it. After his test came back positive, the rest of the family got tested. I tested positive (to the IgA and TTG IgA but NOT the IgG - weird) too. This is just too much coincidence for me. As soon as the testing is done - no matter what the outcome of the endoscopy - we will all be gluten free.

Good luck - it can be a long and frustrating process.

Cara

[dlmclaugh]

Cara- Sounds like we will be going through this testing process together. I hope we can both get some answers for our children soon.

I do not think my daughter had the total IGA test done. i cannot figure out why they would not do it. Maybe that is something they will retest her for at our appt next wed. Do you have your endoscope scheduled yet?

My daughter has the dark circles under her eyes too.

i will keep you posted on what happens next week.

Denise

[Cara in Boston]

Denise -

Hang in there. Our original blood test was waaaaaayy back in November. Every new step seems to have about a month of waiting in between. Right now we are just waiting (estimated 2 weeks) for the "scheduler" to call us to schedule the endoscopy. Once we get the call, the wait is expected to be another month.

I feel like such a bad mom feeding him gluten when I (probably) have enough information already. I just want to be as sure as we can so that when he is a teenager or freshman in the dorms there is no question as to his status. I'm sure he will be tempted (many times) to give up.

Hopefully, after that, he'll meet a nice, gluten-free girl and they can settle down and live happily ever after.

He just turned 6 - still early enough to make this diet change pretty uneventful.

Cara