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Wondering Where We Go From Here?

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I will start out by just giving some in general family history. The post is about my 3 year old daughter though. My mother has Colitis, Diverticulitis, and IBS. I have IBS and have for about 10 years. From about a year of age my 3 year old started having stomach problems. We and the Dr thought it was an allergy to the proteins in dairy (as opposed to lactose intolerant). She would vomit everytime she was given milk...anytime she ate cheese, ice cream, yogurt, eggs, etc she would get diarrhea that would scold her bottom almost to the point of bleeding. We switched her to soy milk and removed dairy from her diet....even doing this she still had loose stool and diarrhea all the time. At about 18 months we were referred to a GI Pedi Specialist. The Dr did testing for the dairy allergies and also testing for her genetic markers for Celiac. We never heard back from them, so we thought everything came back normal. For the past 2 years my now 3 year old has not had a "normal" bowel movement. She always has loose stool, constipation, or diarrhea to point of being water. She randomly vomits but is not "sick" like she would be with a virus. The vomit normally is completely undigested food....like the food is still in tact and it does not even smell like vomit. Well about 3 weeks ago my oldest daughter (she is 5) was diagnosed Anemic. Even with iron enriched food and a vitamin that provides 100% of her daily recommended iron she still tested Anemic. She is due to be tested again next week. I took my 3 year old in today for her physical and her NP told me that 2 years ago when she went to the GI specialist her genetic testing came back positive for Celiac Diesease AND that her test for allergies to the dairy proteins was negative. ( My rant on why we were not informed of this till 2 years later I will NOT go in to. That is for a different forum lol.) She wanted us to go back to the GI again. She also said we might want to have my oldest daughter tested (Since apparently Anemia can be a symptom?) and possibly myself. Right now my 3 year old is perfectly able to eat dairy but continues to have stomach problems.....diarrhea, vomiting, constipation, gas, and her feces has the worst smell I have ever smelled in my life. I do not have a weak stomach at all and there has been times changing her I have wanted to vomit myself.

I guess what I am wondering is what happens from here. Now that her genetic testing is positive what other test do they perform? I am trying to understand to process in figuring this all out! I am also wondering if this history / problems even seem like Celiac Disease. Any advice would be GREAT and a huge help.

Thanks, JI

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Yikes! With positive genetic markers for celiac and those symptoms, they should have immediately run a celiac panel! Any primary care doc can order those labs though. You don't need a GI doc to order celiac lab tests. If the results are positive for any of your family and they recommend biopsy confirmation, then a GI doc is necessary to do the endoscope procedure.

My celiac was diagnosed, after 30+ years of symptoms, 6 years ago by my primary care doctor.


Western Washington State

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Well I am wondering exactly what the Celiac Panel is? Like what test they run and what is considered normal and abnormal?

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My DS has just been diagnosed w/ celiac at the age of 17 months. No genetic testing ever done. Based on all other blood work and tests coming back normal, and his vomiting, diarrhea, weight loss, lethargy, etc - they finally ran a celiac panel last week. I don't know specifically what they test for, but they drew his blood and there are 4 different things they look for- antibodies, I think. 3 of the 4 have come back and they are all elevated for celiac.

This was all w/ our regular pedi. We actually will now be seeing a pedi GI this Friday for further testing.

Good luck.


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We saw the GI two years ago for her stomach problems because the NP just was not sure what was going on. I am guessing since we were there before is why she is sending us back there. Thank heavens DH is military and we don't have to be out of pocket for any of it. However I am sure that will change if the testing comes back positive from buying all new kinds of food lol. The GI already called today to see her so I am thinking we are not going to have to wait long. I believe all the testing is done there in the hospital so hopefully we won't have to wait long for results either.

Although she has had stomach problems she does still continue to gain weight and height just fine. She is skinny....but so is DH and I. So that is to expected. But her growth chart is pretty steady! So that might be a positive side note!

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You don't have to do more testing at all if you don't want to. A positive response to a gluten free diet is all that you need. There are four gluten-free's in our household. All four were dx'd by different methods. All confirmed the dx by going gluten free and then having an accidental glutening that convinced them never to do that again.

Hope this helps, RA

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Well I am wondering exactly what the Celiac Panel is? Like what test they run and what is considered normal and abnormal?

The celiac panel of blood tests normally is considered to be

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Recently they have been doing a test called DGP (Deaminated Gliadin Peptides) also. It all depends on which doctor you go to what is considered "the normal panel". However, it is really important that they do the Total Serum IGA, because this is a control test. If this is low, it invalidates all the other tests.

Each lab that processes the tests has their own ranges for what is considered normal and will state where you stand on their range.

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    Why....why would your doctor not follow the standard of care for testing celiac disease?  I think you need to think about  finding another doctor.  If you are in the US, you can “walk” into a lab and order the test and pay cash: https://labtestsonline.org/tests/celiac-disease-antibody-tests No, your result does not significantly lower your odds of getting a celiac disease diagnosis.  She ordered the LEAST commonly used test, especially since she only ordered that one alone.  I think she thinks you do not have celiac disease, but that you may have a gluten sensitivity.  But that is wrong!  There is no test for gluten sensitivity.  http://www.cureceliacdisease.org/screening/ https://www.mayocliniclabs.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ https://www.verywellhealth.com/celiac-disease-blood-tests-562694 https://www.niddk.nih.gov/health-information/diagnostic-tests/celiac-disease-health-care-professionals I am not a doctor though.  Perhaps, you can ask her why she did not order the complete panel or at least the screening tests most often ordered for celiac disease. Know that some celiacs are asymptomatic (no symptoms) Some just have one symptom.  Some have classic symptoms.  I presented with only anemia and no GI symptoms with only a positive on the DGP IgA.    I hope this helps.  
    Got the result today, and it is indeed the IgG only, and it is "negative" with a result of: <10.0 Units I have sent a message to my doctor requesting that she at least also order the TTG IGA test. However, I'm assuming that this result does at least significantly lower the likelihood that I have celiac? This is all just a shot in the dark anyhow... but after 8 years of unsatisfactorily diagnosed mystery joint pain, I don't want to only half-explore an option and then abandon it without a reasonably definitive result.
    It sounds like you were not given the full celiac panel. The full celiac panel includes: TTG IGA
    IGA You have to be eating gluten daily for 12 weeks before the blood test. A positive on any one blood test should lead to a gastroenterologist doing an endoscopy /biopsies to confirm a celiac diagnosis.    
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