How Long Does It Take For Blood Levels To Drop To Normal Range?

[amcclain32]

My son is 8 years old now and was diagnosed with celiac disease on October 2012. His levels were 113. Tested again in March 2013, dropped to 93, May 68, July, 48, October 45, and just tested February 2014 they were 40.

I'm so very frustrated that it has been 17 months now and his levels are still so elevated. He shows none of the typical celiac symptoms. So it is so very hard to know if he is ever exposed. His only symptom is short stature. My question is how long will it take for his levels to drop to normal? and he can start absorbing all the good nutrition he needs to grow? I'm inquiring now about a referral to Lucile Packard Children's Hospital Stanford GI.  Any past experiences regarding this would be very helpful!

Thank you!

 

[GottaSki]

Welcome!

 

I'm assuming these numbers are all for tTG-IgA?

 

113 is a high starting point and each of his checks have consistently come down....it can take a very long time to become normal and the rate of decrease is different for everyone. Most return to normal within the first year -- but not all.

 

Has he had a complete celiac antibody panel during any of these checks?  Specifically, DGP IgA or DGP IgG?  The Deamidated Gliadin Peptide will give a good indication if gluten is still being ingested.

 

Long way of saying...it may simply take more time, but it does not hurt to follow up with a specialist.

 

Hang in there

[amcclain32]

Thank you Lisa! He had a ton of blood drawn the first time he was tested, 15 vials.. So I'm assuming that was all tested. But I will inquire about the DGP IgA. I would love to know if he is still ingesting gluten. Also do you know if exposed your levels would test higher? When I asked his GI if levels spike after an exposure or it is gradual he really didn't have an answer. Thanks again, I am so happy to have found this site and talk to people who know about Celiac!

[KCG91]

Do levels drop more slowly in kids? I've seen a few posts like this - slow reduction in levels with no obvious cause, almost always in children.

[GottaSki]

Thank you Lisa! He had a ton of blood drawn the first time he was tested, 15 vials.. So I'm assuming that was all tested. But I will inquire about the DGP IgA. I would love to know if he is still ingesting gluten. Also do you know if exposed your levels would test higher? When I asked his GI if levels spike after an exposure or it is gradual he really didn't have an answer. Thanks again, I am so happy to have found this site and talk to people who know about Celiac!

 

Again, everyone is different...but generally it takes continued exposure to have levels rise, not one accidental gluten exposure.

 

Just my opinion, is his levels have consistently come down -- I'd be more concerned if they were moving both up and down.  

 

It is tough to know, but getting the rest of the antibody tests may help to pinpoint if there is a problem:

 

tTG-IgG

DGP-IgA and IgG

[StephanieL]

Have you taken a look at all at thyroid issues?  My DS's ttG's were very high still after 2 years. We looked into thyroid issues and found that was an issue (common in people with Celiac as well). Once on synthroid, DS's ttG's FINALLY came down. They did bounce back up so we're trying to figure that out but they are *almost* normal now after 3 years gluten-free and 1.5 years on synthroid.

[GottaSki]

Another thought...perhaps add nutrient testing if the doctors haven't ordered yet.  If he is continually ingesting enough gluten to prevent complete healing, he may be deficient in some nutrients:

 

CMP

B6, B12, D, K, Iron, Ferritin, Copper and Zinc

 

Just another piece of the puzzle.

[amcclain32]

Thank you both for your ideas, I'm going to ask the Dr. for more labs drawn and the thyroid questions..

[RVluvin]

I'm struggling with the same issue, trying to get that score down.  Stop the gluten-free Oats, until the score is down to 20 at least.  I'm starting to eliminate Gluten Free processed food, and ingesting Certified Gluten Free only.  I may eliminate those as well if I don't see the results I want.  I've considered starting to use my own dishware separate from the rest of the family, possible new cookware that's never been used and will never be used with gluten foods.  Just keep persistent in your attempts to eliminate the gluten.

[greenbeanie]

My daughter is 4, and her tTG-IgA is taking longer than I'd expected to come down too. Her level was over 16x the normal value at diagnosis. (It was 65 on a scale with 4+ as positive, which I believe would be about equivalent to 320 on a scale with 20+ as positive; there's another thread I posted about it a couple months ago. Her doctor had been shocked at how high it was at diagnosis, for someone her age.). After 6 months in a totally gluten-free household with constant vigilance about everything, she was still over 2x normal. It really helped me to think about it in those terms, rather than looking straight at the numbers themselves, which was discouraging. It must be really frustrating to still have the numbers up after 17 months, but your son might just take longer to heal. If he didn't really have many overt symptoms except short stature, he might have had celiac for a long time before diagnosis. 

 

Our doctor did not order the DGP tests as follow-up either, so we were left wondering if the continued positive was a result of gluten ingestion, additional autoimmune problems, or just a slower return to normal than expected. We'd only introduced small amounts of certified gluten-free oats a few times, but we've stopped completely for now. We also completely stopped eating at any restaurants. We'd only ventured out to one restaurant since her diagnosis (Chipotle, which has a great reputations among celiacs in our area and seemed to be safe because they always changed gloves and took toppings from new bins), and we only got food from there once in a while, but until we get her tTG into the normal range we've gone back to eating only food cooked at home. So I don't really have any answers, but I do think that kids may just heal at different rates. As long as your son's numbers are continually going down, it sounds like everything is on the right track. Good luck!

[amcclain32]

Thank you for your post about your daughter and yes it is positive that his levels continue to decline. He was diagnosed at age 4 but we were not notified for 2.5 years later, yes 2.5 years later. A Dr.'s negligence.. But that is a completely different story. He is going to see his primary Dr. next week and I am taking all this new knowledge to him. How often do they test your daughter?

[greenbeanie]

Wow, that's quite the delay! We've had our share of negligent doctors too, but nothing that bad...

My daughter was just diagnosed last June. So far we've only had one follow-up (blood was drawn after 6 months, but we didn't see the GI for a month after that). The current plan is to re-test her every 3 months until her levels fall into the normal range, which seems reasonable to me. We are going to do a gluten-free-oat challenge at some point, but not until after her tTG has normalized. She had lots of different blood draws last summer, with allergy tests and other things in addition to the celiac tests, and that was a whole lot more traumatic for her than the biopsy or anything else. However, she seems to have forgotten most of it (thank goodness!), so I feel okay about having blood drawn every 3 months for a while. Our next actual appointment with the GI doctor isn't until June or July, though.

[GwenO]

We're at almost two years with my daughter.  They're going down, but it's a very slow process........

[blmoreschi]

I guess every kid is different. My daughter was diagnosed in April 2013 at age 11. We immediately went entirely gluten free - our entire household. Her initial TtG was 99 on the scale where <4 is normal. She was retested 6 months later and it was down to 6. We just got results yesterday from a bloodtest this week, and she's <1. (we were doing a blood draw for something else, so the doctor threw in a TtG just for the heck of it - it really wasn't time to re-test). So I guess we're just lucky - but also really careful. We are a completely gluten-free household, I got all new cookware, threw out all wooden spoons, etc. But since her first good result in October we have relaxed a little about eating away from home and she still improved, so we're feeling really good about it.

 

Hang in there, and I think the downward progress is really what matters. Every person reacts differently.