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Tamar Ann

Apoligies, But I'm Another Confused Newbie...

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Oh, and apologies for spelling apologies wrong in the post title, lol! [it appears I can't edit the title]

At my son's last visit to the Endocrinologist (he's Type 1 Diabetic), they did a full Celiac blood panel. The results were that he had a 31x greater than normal chance of having Celiacs, and of course, they want to do a biopsy. I am trying to decide what we want to do. He has no symptoms, but he obviously has a history of autoimmune problems (Type 1). He has been eating a 90% gluten free diet for the last several months, anyway (he eats lowish carb, since it helps keep his blood sugars in good range). I suppose it wouldn't be a big deal to go 100% gluten free. The thing is that he likes having treats once in a while. So it may be worth it to find out whether or not he really does have celiac or not. But, of course, to do that, he would need to eat high carb, gluten heavy foods for a few months, right?

I currently eat a 99.9% gluten free diet, since I avoid all grains and processed foods (I eat a low carb diet). I have no idea if I have celiacs, but I do know that I had chronic diarrhea (sp?) for more than a year that cleared up as soon as I went grain free. But, correlation may or may not mean causation, lol. No one else in the family has been diagnosed, either, but now I'm wondering if we all should get tested. None of us have that DH rash, but hubby has a mild, painless rash in the middle of his chest hair that sort of looks like a picture I saw of it. Makes me wonder if it is a mild version (is that possible?).

I've been trying to interpret his results by reading online, and reading on this forum, but it is amazingly hard to compare the numbers, since they don't always seem to correlate! I can't tell just what they all mean, sigh. So, I'm feeling a little stupid, and I'm wondering if anyone out there would like to help me out.

His results:

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Celia Plus: [Reference Ranges]

Anti-Gliadin IgG = 17.5 U/mL [< 10.0 U/mL]

Anti-Gliadin IgA = <1.2 U/mL [< 5.0 U/mL]

Anti-Human Tissue

Transglutaminase IgA = <1.2 U/mL [< 4.0 U/mL]

Anti-Endomysial IgA = NEGATIVE [NEGATIVE]

Total Serum IgA = 82 mg/dL [44 - 441]

He is homozygous DQB1*0201

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From the way their comments read on the results, it sounds like they may be basing his increased risk on the fact that he has the DQ2 allele. I don't know.

TIA!!

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Alternatively, they could be basing their recommendation that he get a biopsy off the fact that he has type-I diabetes and therefor has an elevated chance of having celiacs. The presence of homozygous *0201 means that he's got about a 33% chance of having celiacs (Article), which is very high. Those elevated anti-gliadin results even on a reduced gluten diet mean that he is most likely gluten-sensitive at the very least and would most likely respond well to a 100% gluten-free diet, you wouldn't eat a 90% poison-free diet afterall. The doctors may have disregarded the low IgA tTG and IgA gliadin results because he also has relatively low total IgA levels along with a low overall exposure due to his diet.

Additionally due to his homozygous (two identical) *0201 pairs, that also means that both you and his father have at least one copy of that gene and have an elevated risk as well. Even if the two of you weren't having symptoms (his rash may be eczema related to a food intolerance if it's not DH) you would still benefit from testing with your genetic makeup.

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My son also has Type 1 and Celiac. He didn't have any symptoms of Celiac that I was aware of at diagnosis. They ran the panel because after being diagnosed with Type 1, he didn't gain weight like they expected him to. I decided to hold off on the biopsy. His Gastroenterologist (sp?) said that his numbers were high enough that he had no doubt, and I didn't think it was necessary to convince me. It has been 7 months since going gluten free. His entire personality has changed. He feels better, has more energy than ever, is happier than ever and has gained 10 pounds in that short time.

Now, looking back, I can see symptoms going back his entire life. He had loose/abnormal stools starting around the time I stopped nursing. They came to be "his normal" and Dr.s weren't concerned. He had been very under weight, hovering between the 4th & 10th percentiles. Dr.s said that as long as it was steady, it was nothing to worry about. Well, he's up to about the 28th at this point!

Also, his Dr. explained to me that even a very small amount of gluten would be enough to trigger an immune system response. The tricky part is that there is gluten hiding in so many things that even if he's eating low-carb, there can still be gluten in the foods he's consuming.

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My child just has celiac, but I'm rather pro-scope. I really trusted the peds GI and it was a very smooth experience for all involved. You're in a rather good position to catch it before so many of those awful symptoms set in and it sounds like it may be easy to transition to the diet since you're already most of the way there.

Once you make the commitment to the gluten-free diet, though, you need to stick with it. No more "treats" of traditional pizza. It would send a confusing message to your child, no doubt.

I wish you the best in whatever you decide.

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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
    TTG IGG
    DGP IGA
    DGP IGG
    EMA
    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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