How Fast Should Antibody Levels Drop?

[chilligirl]

So the bloodwork at the start of October, which led to my celiac diagnosis, had me with IgA anti-tissue transglutaminase antibody levels of over 200. A strong positive. Because I got pregnant, the specialist didn't do the scope and biopsy, said my clinical presentation, combined with the extremely high antibody levels, were sufficient for diagnosis.

Now I have been eating gluten free since November 9th. I know of 3 instances where I've accidentally ingested gluten in restaurants. While I'm really careful, I realize there could well be other times I don't know about. Also, while I eat gluten-free, and all the dinners I cook for the family are gluten-free, the rest of my family and house is NOT gluten-free. I'm careful of cross-contamination (have my own food cupboard, wash surfaces before using them, certain things I use for cooking are always kept gluten-free in our house, etc.), but recognize it may happen.

I had my recheck bloodwork done February 9th. My IgA levels dropped from over 200 to 80. This is an improvement, but is obviously still much higher than "normal". My paperwork from the blood test says "This result is somewhat lower than typical for untreated celiac disease. Results in this range are usually seen after dietary gluten restriction".

My question is, after 3 months eating gluten free, should my levels have been even lower (like in the negative/normal 0-19 range)? Does a result of 80 indicate I'm still getting significant amounts of gluten in my diet? Or am I right on track? My GP didn't really know - he saw the result being high and thought it meant I hadn't stopped eating gluten. I don't see the specialist until March 15th.

[gfgrandma]

the tTg test measures inflammation. The fact that your levels have dropped this much is very positive. How long it takes to heal is a relative answer. The longer the disease process has been active, how old you are, and your general health will determine the speed. Some people never do have o antibodies. I don't know of any research about the effects of pregnancy on this process. I would suspect that the stress of pregnancy would slow the healing process.

Be sure that your obstetrician is aware of your condition. You may need some additional tests and nutritional support. Untreated celiac disease has a statistically higher rate of problems in pregnancy. Incidentally that risk goes down to the prevalence in the general population after about 4 yrs on a gluten-free diet.

Keep working on maintaining the diet, but truthfully few people are truly gluten-free for at least 3-6 months. The minor cross contaminations and even lapses are not as big of an issue as we used to be told.

Good LUck GFGrandma

So the bloodwork at the start of October, which led to my celiac diagnosis, had me with IgA anti-tissue transglutaminase antibody levels of over 200. A strong positive. Because I got pregnant, the specialist didn't do the scope and biopsy, said my clinical presentation, combined with the extremely high antibody levels, were sufficient for diagnosis.

Now I have been eating gluten free since November 9th. I know of 3 instances where I've accidentally ingested gluten in restaurants. While I'm really careful, I realize there could well be other times I don't know about. Also, while I eat gluten-free, and all the dinners I cook for the family are gluten-free, the rest of my family and house is NOT gluten-free. I'm careful of cross-contamination (have my own food cupboard, wash surfaces before using them, certain things I use for cooking are always kept gluten-free in our house, etc.), but recognize it may happen.

I had my recheck bloodwork done February 9th. My IgA levels dropped from over 200 to 80. This is an improvement, but is obviously still much higher than "normal". My paperwork from the blood test says "This result is somewhat lower than typical for untreated celiac disease. Results in this range are usually seen after dietary gluten restriction".

My question is, after 3 months eating gluten free, should my levels have been even lower (like in the negative/normal 0-19 range)? Does a result of 80 indicate I'm still getting significant amounts of gluten in my diet? Or am I right on track? My GP didn't really know - he saw the result being high and thought it meant I hadn't stopped eating gluten. I don't see the specialist until March 15th.

[chilligirl]

the tTg test measures inflammation. The fact that your levels have dropped this much is very positive. How long it takes to heal is a relative answer. The longer the disease process has been active, how old you are, and your general health will determine the speed. Some people never do have o antibodies. I don't know of any research about the effects of pregnancy on this process. I would suspect that the stress of pregnancy would slow the healing process.

Be sure that your obstetrician is aware of your condition. You may need some additional tests and nutritional support. Untreated celiac disease has a statistically higher rate of problems in pregnancy. Incidentally that risk goes down to the prevalence in the general population after about 4 yrs on a gluten-free diet.

Keep working on maintaining the diet, but truthfully few people are truly gluten-free for at least 3-6 months. The minor cross contaminations and even lapses are not as big of an issue as we used to be told.

Good LUck GFGrandma

Thanks!

I'm 30 years old, and, looking at my medical history, have likely had celiac since birth. It's not something commonly tested for around here, and the only reason I got tested was because I was looking at almost 5 years of unexplained infertility, including unsuccessful fertility treatments, and asked for the test since I'd read that untreated celiac can cause infertility. I got the positive bloodwork back on October 13th, but continued eating gluten on my doc's directions, as he wanted me to wait until after the scope/biopsy before going gluten free. Then I unexpectedly (wonderfully!) got pregnant, "au natural" later that month. Went gluten-free as soon as I found out.

No obstetrician - my regular family doctor oversees my pregnancy and will deliver the baby, unless complications arise. Because I'm eating gluten free (cross contamination aside), the celiac-related risks to pregnancy go down dramatically. I make sure to eat a well-rounded diet and take a good prenatal vitamin. I also take extra folic acid (on top of the folic already in my prenatal vitamin), to make up for not getting folic acid from all those "enriched" gluten-y products (breads, pasta, etc.). There is a risk that I have absorption issues, since my gut certainly hasn't had time to heal, but I really can't see that there's anything I can do about that. Thankfully, baby is developing perfectly so far (just had my 20 week anatomy ultrasound), and is actually measuring a week big, so is clearly getting enough nutrients

My internist (who officially diagnosed me with celiac) said that as long as I eat gluten free, there's no real risk to the pregnancy. He warned me that if I DIDN'T eat gluten free, I risked miscarriage, as the antibodies which attack my intestines will also attack the placenta. So I've been really diligent about going 100% gluten free right off the bat.

You mention that few people are "truly gluten free" for at least 3-6 months, and I've heard this before. What is this based on? Does it take that long for gluten to completely clear your system? Or is it assuming there's a learning curve to eating gluten free? I was really, REALLY prepared before going gluten free, as I had already learned a ton about celiac before getting back my blood test, and then had almost a month between the positive test and finding out I was pregnant, during which time I knew I had celiac disease, but was still eating gluten.

I actually don't find eating gluten free all that challenging - I've never been much of a bread person anyway, and for everything else there are so many tasty alternatives. I eat a lot of legumes, fresh veggies, eggs, dairy, and lean meats. To thicken sauces, I use cornstarch instead of flour. Hubby got me my own deep frier, so I make batter using rice flour and make all sorts of yummy gluten free deep fried treats. Everything I buy, I check the label on first. Grocery shopping takes a bit longer, but I find for almost everything I like to eat, there's a gluten free version. If I'm at someone's house, if I can't find out EXACTLY what's in something, I don't eat it. And if it contains mayo or butter or something? Unless the host assures me it was a brand new jar, I don't eat it (double-dipped knives - eeek!). In restaurants, I ask what's in things and let the kitchen know "I have a wheat allergy" (not exactly accurate, but easier than trying to explain celiac). I don't eat out nearly as much as I used to, and have memorized what I can eat and where. The "whoops" in restaurants, one was when my soup was supposed to have gluten-free pasta and the kitchen messed up and used regular pasta (they caught the mistake, but only after I'd hoovered half the bowl), another was when my milkshake came with chocolate sprinkles on top (I scooped them off with a spoon, but it clearly was not enough - bad me!), and the third was when I ordered potato skins (after asking about the ingredients), only to later find out that this restaurant actually deep fries their potato skins (no wonder they were so yummy!) in oil they also do gluten-y stuff in.

My general health is pretty good I think, much better since cutting gluten out of my life! I was also severely, chronically anemic at the time of diagnosis, so that may have slowed down healing a bit. On top of celiac disease, I have a long history of environmental allergies, asthma, and juvenile RA. Although now, with the celiac diagnosis, I'm wondering how much of my past issues was a "symptom" of untreated celiac...