New To Board - Bad 6 Mo Bloodwork Frustrated!

[KaybugsMom]

Hello, I am new here, and lost for answers. My 11 year old has celiac, diagnosed in Dec with bloodwork and biopsy. Our initial visit her GI doc said that her case wasn't so severe that she couldn't "cheat" now and then. Well she has a little anxiety problem to go along with all this and she does NOT cheat, she has done such a good job, she eats so well, makes such good choices, has not complained. She likes most all her food. Her initial test that sent her to GI was one that was >100, not sure which one, but it was supposed to be less than 4. So we knew she had it pretty much. When we went for her recheck last week, the doctor asked how it was going. I felt proud to say she was doing great! No more mouth sores, no skin lesions (her only symptoms we knew about) things were great! They called her their poster child! He said he wanted her number to be less than 40 on this bloodwork, if it was near 80, we were in trouble and had to make drastic changes. I laughed and said I don't see how we could! Well, I had the labs faxed to my job and I felt like I was hit by a truck because her number was 138!! I actually sat there and cried over it. What do we do? I feel like a fool, like I sat there in his office like a moron! I am a nurse, I work with a nutritionist, I am not stupid about it, I can't figure out what is going wrong?? She is going to be crushed when we tell her. Anyone have any ideas why this number is just as high? It is a total waste of the past 6 months in my opinion. Sorry to whine. You just try to do the best for your kids and when you think it hasn't helped a darn bit, it is defeating. -Kathy

[jmd3]

Hello, I am new here, and lost for answers. My 11 year old has celiac, diagnosed in Dec with bloodwork and biopsy. Our initial visit her GI doc said that her case wasn't so severe that she couldn't "cheat" now and then.

I Never heard a doc say you could cheat if you have celiac disease??? Please know that is incorrect.

When I was first dx'd please know that ups and downs happen and are just part of learning the diet and what is safe and what isn't. Don't beat yourself up, just learn and move forward positively.

Start with naturally gluten free foods, meats, veggies, and fruits, then slowly add other things in. Also it helps to keep a notebook/food diary so you can look back over what you may have eaten if there are any questions.

I am sure others will post to help, I just had to post to the fact that the only OFF switch for celiac disease is strict adherence to the gluten free diet.

[Lisa]

Start with naturally gluten free foods, meats, veggies, and fruits, then slowly add other things in. Also it helps to keep a notebook/food diary so you can look back over what you may have eaten if there are any questions.

Excellent advise. A food diary can be very helpful. Watch meds, vitamins, a private toaster and any shared jellies or jars with non-gluten free eaters. Check on snacks when your child is out of the house. Gluten is very tricky and it can be found everywhere.

This is a great place for support and shared information.

[Juliet]

FYI, if she's in school with others, she can make all the right food choices and still get gluten if she's not diligent with washing her hands before eating (we also have our son wash his hands after recess so that if he puts his hands near his mouth while working in class, it's less likely to have any trace amounts of gluten), having a clean space to eat, and limiting how often she puts her hands near her mouth during the day. Also, look into lotions, soaps, hair products, lip balms, etc. It's amazing how many products have oats and wheat germ oil. There's now even a shampoo touting the hair health benefits of wheat, one of their advertised ingredients. All of these things, especially if she puts her hands near her mouth or twirls her hair a lot, can be reasons why she may be still getting some gluten.

And some people just take a much longer time before their numbers go down, too.

[Lisa16]

Maybe try this checklist.

Is you entire household gluten-free?

Do you have pets that eat gluten?

If your household is mixed, what practices are in place to avoid cross contamination (CC)?

Are other members of the household aware of CC issues or are the lax?

Do you have other children that are not gluten-free?

Did you go through your cooking supplies and eliminate everything that is potentially problematic? (Cutting boards, scratched pots and pans, teflon, grills used for buns, pizza stones, etc.) Did you thoroughly clean the kitchen (no lurking crumbs in the utensil drawer, say?)

Do you only eat at home or go out often?

Does she eat in the school cafeteria? Are you certain her friends don't share food? Even if a kid eats a bun and reaches into her bag of chips (for example,) this could get her. All it takes is a crumb. Sometimes even less than that.

Have you started using any new products? Have you looked at condiments, broths and spices with regard to both cc and gluten?

Have you considered toiletries-- especially things like lotion used on hands or the face that might get ingested? What about your own-- your lipstick if you kiss her, for example?

The thing is, she is definitely getting it somewhere so you are going to have to go into hypervigilance mode.

Good luck!

[Lisa16]

I forgot to say a couple of things--

-Check your sponges. They hold gluten.

-check your dishwashing soap and laundry detergent

-do you bake with regular flour? That stuff moves!

-check handsoap in the bathroom-- if other people use it to wash their hands after eating gluten and she uses it, she will have gluten residue on her hands

Honestly, a mixed household is very hard. It will take longer that 6mos. for people to change their habits and become fully aware of CC issues. You need to educate everybody.

And please don't blame yourself. This is damn hard. Just got back in and look at every aspect of her day to try to figure out where it is sneaking in.

You are a great mom.

[MaryannG]

I can't believe your dr said she could cheat. That is insane. My dr says absolutely no gluten. Any little bit still destroys the intestines. Please don't listen to that dr. In my opinion you might want to shop around for a new one. I have been to 3 gastros. The first told me she didn't have celiac, it tunrs out she didn't look at the blood work correctly. The second was good but didn't know enought about celiac so referred me to a nutritionist as well. Then I found a celiac center and figure why not stick with the experts. Not all GI dr's know that much about celiac. My friends dr said don't eat bread, yeah ok! Like that is enough! Crazy!

Anyway, at the celiac center they said that they do the bloodwork after 6 months, BUT that it takes time for the levels to get where they should, and not to let it frustrate you. My daughters levels were not perfect. We'll see what they are in August when we do it again. Also, I thought my daguther was completely gluten-free but thne I kept finding secret sources of gluten. It took 6 mos to a year to finally get it right (or so I think...) Please feel free to send me a private message if you want to talk more about it. Good luck and don't get too frustrated. Also, I would suggest finidng a nutrionist that deals with celiac. Mine actually has celiac which really helps because she knows brands to trust as well!

[NewGFMom]

I'd make them re-do the test. Perhaps her results got mixed up with somebody else's. It took my son two years for his TTG to go back to normal, and his doctors knew that was normal and they are experts. (Head of the Celiac group at Children's Hospital in Boston)

If your house isn't gluten free, or nearly gluten free, I'd strongly suggest that you do that for a while. It's really, really difficult to keep things separate, and you really don't need it for anything.

[Darn210]

Hi Kathy,

Lots of good suggestions above. I would go through everything with a fine tooth comb . . . food and toiletries and possible cross-cantamination. . . keep in mind that formulas change on a regular basis so that something that was gluten free when you checked 6 months ago may no longer be gluten free now. Does she eat anything from her school cafeteria? That was what got my daughter. The one meal that I had checked out and verified as gluten free had a vendor change mid-year and was no longer gluten free. Of course, I didn't know until she got off the bus looking like something the cat dragged in.

Of course, No Cheating . . . but your initial post sounds like she wasn't cheating . . . at least not intentionally.

Don't get too down . . . you guys are obviously on the right track since she has had a reduction in her symptoms. Do you know what her initial numbers were? 138 could still be less than where she started and thus showing progress. Some people take a while for the numbers to become normal.

[KaybugsMom]

THANKS TO ALL!! I really appreciate the support. I honestly do. I have been in tears about it all day since i actually got the phone call today. At first the nurse just told me a generic "stricter diet" and I broke down, said I don't understand, why not do this freaking test BEFORE to office visit, now I have tons of questions....she had no answers, didn't even know which doc in the practice I saw!!!! It was bad. I was crying like a whacko. But the doc called me later and we are going to meet with the dietition I guess and try to to figure it out. I am taking all your advice and starting a journal of sorts. I "thought" I was doing things right, but I guess I have been missing things. Thanks again! Kat

[seezee]

Hi Kathy,

Lots of good suggestions above. I would go through everything with a fine tooth comb . . . food and toiletries and possible cross-cantamination. . . keep in mind that formulas change on a regular basis so that something that was gluten free when you checked 6 months ago may no longer be gluten free now. Does she eat anything from her school cafeteria? That was what got my daughter. The one meal that I had checked out and verified as gluten free had a vendor change mid-year and was no longer gluten free. Of course, I didn't know until she got off the bus looking like something the cat dragged in.

Of course, No Cheating . . . but your initial post sounds like she wasn't cheating . . . at least not intentionally.

Don't get too down . . . you guys are obviously on the right track since she has had a reduction in her symptoms. Do you know what her initial numbers were? 138 could still be less than where she started and thus showing progress. Some people take a while for the numbers to become normal.

My nephew was diagnosed and it took two years for his tests to return to normal. He sees a celiac specialist at Children's Hospital Boston and it is normal for it to take that long. It sounds like she is doing better and that maybe your GI isn't all that knowledgeable about celiac specifically - especially since he advised you it was OK to cheat every now and then. Many GI's don't specialize in celiac and don't know too much. That sounds like a big red flag. My daughter was recently diagnosed too. She is ten and is super diligent as well.

[JennyC]

You have already gotten excellent advice. I thought that I would tell the reason my son's tTG became elevated. Wellshire's gluten free brand products, such as chicken nuggets and corndogs, have been shown to contain high levels of gluten. For a year he was eating them frequently and his tTG jumped from 4 to 17. After he quit eating their products his tTG went down to 3.

[elle's mom]

I'm confused by the antibody levels being mentioned, maybe it's a different test or something........my daughter's ttg was over 1000 when she was diagnosed (OUR lab report said that under 20 is normal) so I don't get why your daughter's was so low and they pretty much knew she had it.....

just for your comfort though, we have been at this almost two years like I said over 1000 at diagnosis....we are super strict with everything everyone else had mentioned......at 3 months she was still over 300........most recently she was 44 (not perfect, but getting there I guess)

you sound like me though-i freak out too