2 Yr 8 Month Old Blood Panel Results- Celiac?

[Erwin Heuck]

Can someone help me interperet the following....I'm wondering if a biopsy and another 3-4 weeks of feeding my son glutin is required.

Lab results for son (2 yrs 8 months):

Anti- tTG IgA 24.4 U/ml, normal <12

Anti- Gliadin IgA 2.6 U/ml normal <10

Anti-Gliadin IgG 64.4 U/ml, normal <10

My son is pale, underweight 26.5 lbs, < 40% height 35", has had low iron (iron stores are good), picky eater and has recently become more irritable/demanding (terrible twos?). He was a good sized baby at nearly 9 lbs and 19.5 inches.

Do I need to continue with glutin in diet for another 3 months for Paed. GI to see hime and potentially do a biopsy that may take 3-4 more additional weeks.

The docs say all his organs are working fine regarding his failure to thrive.

I'd like to help him now, but do not want a false negative on biopsy/endoscopy

[jayhawkmom]

Wow. I'd say those results are pretty conclusive. If it were my child,

I'd bypass the EGD.

If there is a valid reason why you need that "all out gold standard confirmation" then by all means... have the biopsy. But, in order for it to be accurate, the doctor is right... gluten will have to stay in the diet for the time being.

With those bt results, I wouldn't bother.

But, that's my opinion... and nothin' but.

[Ursa Major]

I agree, with those results it is pretty obvious the little guy has celiac disease. If he responds well to the diet, you'll have your definite answer. Just make sure you remove all dairy and soy from his diet as well, at least for the first few months.

[confusedks]

Those are pretty positive. But, if you feel the need for a "true" diagnosis, then do the biopsy. If I could have done it all over, I would have waited and stayed on gluten for the biopsy. But, I don't have a 2 year old, sick child. I don't know if I could see him suffer. It's really up to you!

[Owen'sMom]

With those blood results I would also skip the biopsy and start the diet right away. We went through all the testing and my son suffered so much and still had negative results for both bloodwork and biopsies. Yet his response to gluten free was so great that I really don't need prove via biopsy.

I also agree with taking out soy and dairy for a while. My son is doing so much better now and he actually tolerates small amounts of cheese and yogurt now.

[happygirl]

Keep in mind that an endoscopy looks for other things beyond Celiac, as well.

A biopsy is a good idea to get a definitive idea of what is going on, as well as to determine the level of damage. Currently, it is the "gold standard" for diagnosis. You'll never have to worry about a doctor questioning if your child has Celiac if they have a biopsy positive for Celiac.

Many Celiacs do just fine eliminating only gluten; some others have sensitivities beyond that.

If you decide to do the biopsy, keep your child on gluten until the biopsy.

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[Darn210]

Just to throw in a little more information to help muddy the decision making process . . .

Will you be able to get some sort of doctor's diagnosis (whether Celiac or Gluten Intolerant) if you don't do the biopsy? This may be something you could get the answer to now. I think some doctors would - based on the blood test and a positive dietary response. I bring this up because even though your child is only 2 1/2, you may be fighting the school system for concessions (microwave/refrigerator/whatever) when the time comes without a doctor's diagnosis. This may not even be an issue for you but just wanted to mention it.

[Gemini]

Can someone help me interperet the following....I'm wondering if a biopsy and another 3-4 weeks of feeding my son glutin is required.

Lab results for son (2 yrs 8 months):

Anti- tTG IgA 24.4 U/ml, normal <12

Anti- Gliadin IgA 2.6 U/ml normal <10

Anti-Gliadin IgG 64.4 U/ml, normal <10

My son is pale, underweight 26.5 lbs, < 40% height 35", has had low iron (iron stores are good), picky eater and has recently become more irritable/demanding (terrible twos?). He was a good sized baby at nearly 9 lbs and 19.5 inches.

Do I need to continue with glutin in diet for another 3 months for Paed. GI to see hime and potentially do a biopsy that may take 3-4 more additional weeks.

The docs say all his organs are working fine regarding his failure to thrive.

I'd like to help him now, but do not want a false negative on biopsy/endoscopy

With an elevated Ttg at such a young age, this is evidence of intestinal damage. However, the number is still on the low side so damage has probably just started. Your child most definitely has Celiac so the decision to do a biopsy would really be for your peace of mind. The biopsy could still come up negative, though, if damage is very patchy and they don't hit it right.

For myself, I would be hesitant to do one at such a young age but you may be more comfortable with that. A good Celiac doctor would know his bloodwork and symptoms are proof of the disease and back up the diagnosis. You could always start the diet and keep track of response. Then, if things didn't improve within a reasonable amount of time, you could do the scope to see if anything else is going on. That won't affect anything relating to celiac disease because you already know the little guy has it. Good luck!

[Erwin Heuck]

With an elevated Ttg at such a young age, this is evidence of intestinal damage. However, the number is still on the low side so damage has probably just started. Your child most definitely has Celiac so the decision to do a biopsy would really be for your peace of mind. The biopsy could still come up negative, though, if damage is very patchy and they don't hit it right.

For myself, I would be hesitant to do one at such a young age but you may be more comfortable with that. A good Celiac doctor would know his bloodwork and symptoms are proof of the disease and back up the diagnosis. You could always start the diet and keep track of response. Then, if things didn't improve within a reasonable amount of time, you could do the scope to see if anything else is going on. That won't affect anything relating to celiac disease because you already know the little guy has it. Good luck!

Thanks so much to everyone that responded. I feel that the doctors are waffling on calling these symptoms celiac, simply so that they can be 100% confident in their diagnosis. The Dr's confidence will only come with time, observable damage to the villi in his intestine and undue risk to my sons long term health.

I'm fortunate that there is a forum like this to hear what other people think.

[April in KC]

I am not a doctor - but here are the things I would be thinking about / asking about.

AGA-IGG is an anti-gluten antibody. Ttg is an anti-self antibody. In little kids with Celiac, sometimes you only get positives on the anti-gluten antibodies, but in your son's case he has already developed an immune response to his own body from intestinal damage. I have read that there are some other conditions like Chron's that can cause an elevated AGA-IGG. In addition, I have also read that there are a very FEW other conditions that can cause elevated TTG. They are serious autoimmune conditions - Type 1 Diabetes, Autoimmune Hepatitis, but Celiac is by far the most common autoimmune condition to cause this to be elevated. The combination of both of them and your child's symptoms would certainly seem to point to Celiac Disease. It would be mathematically unlikely that your child does not have it, is one way to look at it.

You can get the biopsy, and it might have positive or negative results - Celiac damage can be patchy unless your child has total villous atrophy. You can get the scope and biopsy for peace of mind that there isn't something else also going on. And you can read up on Type 1 and/or autoimmmune hepatitis to make sure your child doesn't have symptoms of another autoimmune disorder. Type 1 and Celiac can definitely occur in the same child.

Did they test EMA, by the way - endomysial antibodies? It is not included in some Celiac panels because it is an expensive, hard to read test where you have to prepare a slide and a human has to interpret the results rather than a machine. It also involves the use of monkey esophagus and immunofluorescence. You can get false negatives if the results are not read by a qualified lab like Mayo - but many doctor's offices labs often send the results to Mayo to read. If you get a positive EMA, it's Celiac Disease. There is no other condition that causes this to be positive.

My oldest initially had a panel test that included AGA-IGA, AGA-IGG, Reticulin and EMA at six years old - all were positive. We have since then used Ttg levels to monitor him in the past year - he's been gluten-free for nearly a year with no scope - his GI says he has Celiac (based on the EMA) - there is no need to ever give him gluten again in his life. However, he may get a scope soon because he is not fully well and we need to see what's going on - but he also has soy and peanut allergies and so he may have EE (eosinophilic esophagitis). My middle child - I pulled off gluten at 3 years old without a positive blood test and without a scope/biopsy. I still have some small doubts at times, so we might do a gluten challenge sometime in the future. However, we did have the gene test done and he has the genetics necessay to have Celiac disease. My youngest (of three) also lacked positive blood work, but his symptoms were SO improved that I will never reintroduce gluten. He had bleeding eczema that cleared up completely off gluten.

The TTg result as an anti-self antibody is a serious sign that something is very wrong. If you do not accept that as Celiac Disease, then as a parent I would press very hard to find out exactly what it is.

Best wishes! - April