Not Sure What To Think Of Test Results

[amyb220]

Hello- We are new here and completely new to Celiac's. My daughter is 20 months and had had problems with diarrhea for almost a year now, along with anemia and she was slow to grow between 12-18mos, but has since started growing again. After switching dr's we finally got one to start the initial testing for Celiac. We got results back today....she tested positive for IgG, her level was 21. She tested Neg. for IgA, her level was 1. Dr. seemed to think that her IgA level is low because she is so young and hasn't had a chance for levels to truly develop. We are going to see ped gi that specializes in celiac. Dr. mentioned that we may want to start gluten free diet, but I am afraid that will affect any further testing she has done. What do you all think about this? We are slo considering Enterolab, but thinking we may wait until we see the gi doc. Anybody have a similar experience??

[azmom3]

I have a 25 month old boy, who also had high IgG, but negative on the others. We are doing the biopsy in 3 weeks (almost 6 months after the blood test...soonest they could get us in here). We have seen both an allergy doctor and GI doctor and both suspect he may have celiac, but are actually leaning towards something called eosinophilic esophagitis or possibly another eosinophilic disorder, which is allergy related. They will be checking for both during the endoscopy.

You can start her on a gluten free diet now and still have accurate tests with Enterolab, but if you are planning on the biopsy route, don't do the diet yet as the biopsy would probably show negative no matter what.

Does your daughter have any allergy problems that you've noticed? Have you done any allergy testing?

Some people will tell you that if the IgG was high, then she has celiac. I'm not an expert, but having both our pediatric GI doctor (who is very knowledgeable on celiac) and our allergy doctor telling us it could be celiac and/or an eosinophilic disorder, I personally want to find out exactly what it is so I can better treat it. If I assume he has celiac disease and put him on a gluten free diet without knowing for sure, it may prolong or worsen his other problems. Eosinophilic disorders require that you remove both food and environmental allergens. We have had a horrible time pin-pointing which things our son's allergic to and have been doing skin and blood testing to better determine it. He's allergic to far more stuff than he's not allergic to so far, and his overall allergy number is 391, when normal is between 0-51. We did more testing and found out his numbers are going up, even though we removed all known allergies from his diet.

I understand in the meantime, that if he does have celiac disease, I am still feeding him gluten, which is very damaging to him. I feel I picked the lesser of two evils in his case (and this is what I was advised to do by both dr's and what I felt most comfortable with). It makes me sick that I may be feeding him the worst possible thing, but if I assumed it was celiac disease and it wasn't, I may be feeding him other things that are doing damage as well. Eosinophilic disorders can be very scary and seeing the asthma attacks, hives, etc was enough for me to make the decision to go this route. I know there are people on this board who may not agree with me, but they aren't walking in my shoes, haven't talked to my doctors, and most importantly, aren't my son's mother. I think the parents know what's best in each individual case and you have to do your research, then make the best decision for YOU and YOUR CHILD. Good luck!

[amyb220]

Thanks for sharing your story...I feel for you! It sounds like you are doing a great job, and truly nobody knows what is better for your child than you do. I hope you get the answers you are looking for, and good luck with the biopsy!

We have had our daughter tested for allergies...wheat, milk, casein, whey, and soy. All came back negative. That is what led us to the conclusion that it is a food intolerance becuase if the high IgG, rahter than a food allergy. We will see what happens, I hope our gi's aren't as booked up as yours are. I am still waitng a call back from docs office to schedule. Hang in there, and again I hope you get some answers. I think the most frustrating thing is not knowing what exactly is wrong, especially when you know something is wrong. We just fired our daughters previous dr. becuase she refused to listen to us when we said knew something was wrong. I have really lerned to listen to my gut, her previous dr. would keep telling us she was normal and not to worry, but that nagging feeling just kept coming back! Good luck!

Amy

[AndreaB]

Keep in mind that biopsy's are often negative even though someone may have celiac. The damage may not be there yet. I have read that for children blood tests are highly unreliable, not sure if it is the same for biospy.

Did you have an ELISA test done. They test for IgG and IgE if you want to pay for the allergy part. IgG is the intolerance part. That's what we had done with our family. You can get false's with that too but it could give you something to work off of.

After the biopsy I would still trial the diet and see if she has a positive dietary response. If not, or if symptoms get better and then worsen again it would be time for testing of other intolerances and/or whatever tests the doctor believes need to be run.

[LauraW]

Hello- We are new here and completely new to Celiac's. My daughter is 20 months and had had problems with diarrhea for almost a year now, along with anemia and she was slow to grow between 12-18mos, but has since started growing again. After switching dr's we finally got one to start the initial testing for Celiac. We got results back today....she tested positive for IgG, her level was 21. She tested Neg. for IgA, her level was 1. Dr. seemed to think that her IgA level is low because she is so young and hasn't had a chance for levels to truly develop. We are going to see ped gi that specializes in celiac. Dr. mentioned that we may want to start gluten free diet, but I am afraid that will affect any further testing she has done. What do you all think about this? We are slo considering Enterolab, but thinking we may wait until we see the gi doc. Anybody have a similar experience??

Hi Amy,

Our story is similar to yours in some ways as well. I have had (I am 34) chronic stomach problems (constipaation) all my life, had several colonoscopies, and basically it was chalked up to IBS. Fast forward to my 2 year old daughter's 2 year check up back in September. Oh, and she has battled constipation ever since she was born (just thought she inherited my stomach). Well, she only weighed 21 lbs and wasn't eating hardly and they put her on miralax for her stomach. Ped wanted to run a blood panel on her for celiac just to make sure she did not have it. At that point, I had never even heard of celiac, nor did I know a thing about it. He got us in to a ped GI that week, who told us that her blood work came back positive, and felt almost 100% sure she had celiac and that we would know for sure if we did biopsy. I later started researching this disease and called back to have them send me her blood work. Turns out her antigliadin IGG was the only number that was positive. It was 33 (>9 is positive), even ttg levels were negative. The more I read on line I found out that the ttg results are the most accurate in determining celiac or not. Well we went back and forth on whether to do biopsy or not, b/c she is so young. My parents and I were in an out right war over this issue. They seemed to think, don't do the diet and don't do biopsy. Well...obviously we are doing one or the other, so we did the biopsy. The actual procedure, no too bad. Pretty short, she did great after waking up...however, they put the IV in her awake which was the worst thing ever. You can PM me if you want more details. Dr says "I don't see any visible damage, however, I think she has a 70% chance of having this". Oh, and I got tested through my ob (Iam 35 weeks pregnant) and they tell me blood is positive for me and to see a GI after baby is born, that I passed this on to her. So I am convinced, totally, that I have it and so does she. Last week GI calls to say test is negative and he doesn't recommend diet unless symptoms get worse. He said "maybe you should repeat the biopsy next year". I wanted to laugh in his face (hell no, we aren't doing that next year). Oh, and before the biopsy I questioned him about ttg levels being negative and he said little ones sometimes don't have those antibodies yet. ANyhow, that's our story. I hope I haven't confused you at all, PM me and we can talk more.

Laura

[rez]

Interesting to know that there are even questions when you are in the "real" medical community. My advice is go for the "medical" diagnosis and then try Enterolab. We did Enterolab after all the doctors screwed up the tests and then out of desperation we put my son on a gluten free diet, which worked. I really don't put that much faith in Enterolab, but it was nice seeing what I thought on a piece of paper. At least it's something. We have since had genetic testing which points to Celiac, but just because you have the genes it's not a diagnosis. That would be one option for you. Person in the previous post, what are you doing now? How's your daughter. This disease stinks!! And the worst is there's so much gray area. It would be easy if it was black and white. We have a great doctor who has Celiac himself. He's a family practice doctor and he says the proof is in the pudding. There's nothing unhealthy about being gluten free. In fact, it's way healthier! Good luck with both your stories. I feel for you.

[chrissy]

azmom, by chance is the other condition they are looking for FPIES----food protein induced enterocolitis syndrome?

[azmom3]

azmom, by chance is the other condition they are looking for FPIES----food protein induced enterocolitis syndrome?

Chrissy,

They haven't mentioned that...one more thing I can research though. Do you have a child with this or know more about it at all or maybe a good website for me to start with? Thanks

[miasuziegirl]

Hello- We are new here and completely new to Celiac's. My daughter is 20 months and had had problems with diarrhea for almost a year now, along with anemia and she was slow to grow between 12-18mos, but has since started growing again. After switching dr's we finally got one to start the initial testing for Celiac. We got results back today....she tested positive for IgG, her level was 21. She tested Neg. for IgA, her level was 1. Dr. seemed to think that her IgA level is low because she is so young and hasn't had a chance for levels to truly develop. We are going to see ped gi that specializes in celiac. Dr. mentioned that we may want to start gluten free diet, but I am afraid that will affect any further testing she has done. What do you all think about this? We are slo considering Enterolab, but thinking we may wait until we see the gi doc. Anybody have a similar experience??

[miasuziegirl]

Hello- We are new here and completely new to Celiac's. My daughter is 20 months and had had problems with diarrhea for almost a year now, along with anemia and she was slow to grow between 12-18mos, but has since started growing again. After switching dr's we finally got one to start the initial testing for Celiac. We got results back today....she tested positive for IgG, her level was 21. She tested Neg. for IgA, her level was 1. Dr. seemed to think that her IgA level is low because she is so young and hasn't had a chance for levels to truly develop. We are going to see ped gi that specializes in celiac. Dr. mentioned that we may want to start gluten free diet, but I am afraid that will affect any further testing she has done. What do you all think about this? We are slo considering Enterolab, but thinking we may wait until we see the gi doc. Anybody have a similar experience??

I'm not sure if my last comment went through, so I decided to write you a quick reply. I have two grown daughters and three grandchildren (plus myself) who have sent stool specimans to Enterolab. They are a very professional lab and we were all pleased with their help in diagnosing our Celiac/Gluten Intollerance.

I disagree with others who state to go ahead and put your daughter on the diet before doing the test. If you remove the allergens from her body then the tests won't be as accurate. All the replies you have received sound very good. Good luck and let me know what you decide to do.

[shayesmom]

Hello- We are new here and completely new to Celiac's. My daughter is 20 months and had had problems with diarrhea for almost a year now, along with anemia and she was slow to grow between 12-18mos, but has since started growing again. After switching dr's we finally got one to start the initial testing for Celiac. We got results back today....she tested positive for IgG, her level was 21. She tested Neg. for IgA, her level was 1. Dr. seemed to think that her IgA level is low because she is so young and hasn't had a chance for levels to truly develop. We are going to see ped gi that specializes in celiac. Dr. mentioned that we may want to start gluten free diet, but I am afraid that will affect any further testing she has done. What do you all think about this? We are slo considering Enterolab, but thinking we may wait until we see the gi doc. Anybody have a similar experience??

Hi Amy! I'm glad that you found your way here as I know you'll get much more support and guidance. If you intend on following up with the biopsy, then going gluten-free now will not be condusive to what you are attempting to accomplish (as in get a positive diagnosis). However, should you go for the biopsy, I would highly recommend trying the diet out for at least 2-4 weeks should the results come back negative. Children are very difficult to diagnose sometimes. And the tests are so highly specific that they don't catch this disease in the early stages. So it's better to be "safe", than sorry. Trust me, you will KNOW if gluten is the problem in a very short amount of time once you try the diet. The results are pretty miraculous....so much so that as difficult as the diet is in the beginning...it will be worth every extra effort.

Since your dd tested negative on all of her allergy tests, I would think that EE isn't a probability for your dd. And it may be of interest to note that gluten directly effects the permeability of the intestines thereby exaccerbating food allergies. Many people find that some of their allergies go away and/or get much better after being gluten-free for a while. To see the info on this, just do a search for "zonulin".

With my dd, we did not opt to do the biopsy and went straight into the gluten-free diet to see if it would help. My dd is definitely intolerant to gluten and can't handle dairy, soy, eggs and food colorings (along with any other man-made chemical additive found in our food supply). It's funny, but once we gave up gluten, the others all were much easier to give up along the way. I think that the hardest part is just letting go of the old lifestyle and habits and finding ways to develop new ones. It was a bit of a roller coaster for 6 months. After that, it got to be second nature. Try to keep that in mind as you go further down this road. It all works out in the end. You just have to re-prioritize a bit and focus on all the positives as opposed to the negatives. It really is a matter of perspective. It's just hard to see the bigger picture while in the midst of testing and then grieving for the loss of certain foods.

Good luck with whichever path you decide to follow. From reading your posts, I truly believe that your gut instinct will get you where you need to go. Trust yourself in this. You will make the right decision!