Help With Interpreting 3 Y.o. Results

[Pedrose]

Hi. I am a newbie but everyone on this forum seems so friendly I thought I would ask for help. My 3 y.o. son (a non-identical twin) has always had GI issues. The paediatrician ran a series of tests and has diagnosed my son as coeliac off the back of these. I refused a biopsy and she said "I believe it would come back positive anyway." I am after a second opinion on his results because we are moving soon and it could take weeks to find a new Paed.

Coeliac Serology:

Gliadin IgA Abs 3 U/mL

tTG IgA/IgG *41 U/mL

Coeliac Disease: HLA DR & DQ Association

Genotype susceptible for coeliac disease detected. Heterozygous for the .... haploytype, which is consisten with the DQ2 phenotype.

I also wonder about having my other 3 kids tested, especially my 5 year old who is extremely skinny and has had behavioural problems since the age of 18 months.

Thanks I will really value your input.

[sa1937]

Pedrose, sorry you haven't gotten a response to your message yet. Did your dr. run a complete celiac panel or are those two results the only things? If so, it's incomplete. Plus you need to give reference ranges for those readings as they vary from lab to lab.

Personally I'm not knowledgeable of gene testing but they're in no way diagnostic for celiac. And children are difficult to diagnose.

Hopefully someone will chime in to give you a better understanding but I wanted to at least give you a response to your post.

[Pedrose]

Thanks Sylvia. The only tests the Dr ran were coeliac serology (results listed above), HLA DR & DQ Association (results listed above), a faeces examination, and faecal occult blood which was negative. What other tests make up the full panel? I am really confused now and looking forward to finding a new paediatrician when we move. I do not know the labs markers as patients are not privy to that information. I am in Australia if this makes any difference.

[mushroom]

Thanks Sylvia. The only tests the Dr ran were coeliac serology (results listed above), HLA DR & DQ Association (results listed above), a faeces examination, and faecal occult blood which was negative. What other tests make up the full panel? I am really confused now and looking forward to finding a new paediatrician when we move. I do not know the labs markers as patients are not privy to that information. I am in Australia if this makes any difference.

You should ask for copies of all test results on all tests for all your family. The results slip will have the ranges that the lab uses when they run the tests. Copies can be important later when going to other doctors, and also to check that they have not been overlooked or misread. Being in Australia shouldn't make any difference. I am in New Zealand and always get copies of alll test results. I was at a hospital clinic yesterday and they were impressed with the information I was able to provide them. The complete celiac panel is:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

It is important to run the total serum IgA because if this is below normal it can invalidate the other IgA tests. The DGP is considered to be the most sensitive test for celiac, particularly in children. Read about the work of Dr. Rodney Ford in Christchurch.

ETA: Hold off on your other children until you can verify what is happening with this one - that will provide a good basis for making a decision.

[Pedrose]

Thanks Mushroom. I will cut and paste that list onto my pc. I have looked at the serolgy results again and there are numbers in brackets that I am wondering if they are the normal range. It reads

Gliadin IgA Abs 3 U/mL (0-20)

tTG IgA/IgG *41 U/mL (0-24)

I definitely do not have the peptide one or the total serology one.

[Pedrose]

Update: my son has been gluten-free for two weeks and did his first normal coloured, firm poo ever today. He even did it on the toilet and not in his pants which is a major breakthrough. My husband and I went gluten-free with my son. Last Wednesday I ate gluten at a funeral in the belief that I am not coeliac but the next day I had two major bouts of diarrhoea. I am now gluten-free again not wishing to go through that again. My husband says his stools are starting to firm up too. Even though I still don't understand my son's tests, experience is telling me that a gluten-free diet is working.

[mushroom]

I keyed a response to you the other day, but it obviously did not post. Yes, the numbers you posted were the normal ranges. Anything outside those ranges would be considered positive. I am glad your son is responding to the diet and doing well and that you have decided on a gluten-free household. When a child has celiac he got it from at least one parent (and sometimes both - which it sounds like could be the case with your family). It is amazing the number of people who discover they are gluten sensitive once they stop eating it. My hub went gluten free with me (figured it couldn't hurt -- his mom had MS ) and then he started cheating a little bit here and there with beer and sourdough french bread. Not only did his D return, but he also developed dermatitis herpetiformis to confirm the diagnosis

[carecare]

So the tTG was 41 correct when the normal range is (0 - 24). If that is how I am reading it then that would indicate celiac, I believe.

Good luck and glad to hear you guys are seeing positive results on the diet. After going gluten free in the household because my son's blood test was on the positive side I realized I had problems with gluten as well. Now my sister who went gluten free ...doing the paleo diet lifestyle change to loose weight and get healthy gets really ill when ingesting gluten too. I have a sister with pretty severe probably MS who still won't give the diet a chance...which saddens me..and her husband has psoriasis and now arthritic psoriasis...but he too won't give it a try. I'm glad you all see there is a difference for yourselves as well. Here's to getting all getting healthY!

[Pedrose]

Thank you Mushroom and Carecare. Initially I was in a bit of denial because I lost confidence in my Pediatrician after she greeted me with "How's the gluten free diet going?" and I had to reply "You haven't given me the results yet." Tests done in July and follow-up appointment was October. Furthermore, she wouldn't give me a referral letter or results to take to new doctor (we are moving interstate) so I went and got them from my GP. There is no way I would go to a new doctor empty handed. Anyway, I am now facing up to the challenge and have the attitude that the diet is totally manageable so long as I am prepared. Being a vegetarian I am already used to restricted choices, thankfully. Now just to help the kids adjust!