Numbers Still Elevated?

[crittermom]

Hi Everyone,

I haven't posted in a while since I thought we were doing well. However I just got our bloodtests back from our 1 year checkup and her numbers are still WAY elevated. I am not sure how long the antibodies take to drop. She started at 120, was down to 104 and one year later she is at 80.1

The doctor wants her under 20. The numbers are on a decline but I am not sure how fast they drop. Are they looking for a steady decline? Do some kids take longer than others? \

She is a terrible eater and is also anemic. We were on an iron elixir and got her levels to normal but she won't eat meat and now levels are dropping again.

I have made recalled all companies and double checked that formulas haven't changed. The only thing I can think is the Lactaid. They said "There are no DECTECTABLE gluten levels in our products" they would not say gluten free. Has anyone else had a problem with lactaid? I am going to buy new utensils tomorrow and the pans used for her food are either stainless steal or Gluten free only pans. I have been so careful...anal really and I am so frustrated that her levels are still so high.

Please help!

Thanks

Melissa

[Kaycee]

Melissa, I can't reply in relation to a child, but I can reply in relation to myself. Mine started up reasonably high and they went down slowly, but they went down. At the year stage they had gone down to 48, and were 100 to start with. so I still have a way to go.

I think you should take comfort in the fact that her levels are going the right way, down.

Cathy

[maryjk]

I can only tell you what my numbers did.

Before gluten free my level was 124. Seven months later it was 5.

Could she be eating gluten that you don't know about? I am not talking about having the kitchen gluten free or new everything. I didn't do that. And I still eat out every week.

But is she in school? Could she be eating something there that she thinks is gluten free but isn't? What about at Grandma's? Or friends house's? I am sure that you know about toasters and cutting boards. But double check that no one else in the house is using the gluten free ones for gluten stuff.

I would also be happy that the numbers are going in the right direction. But I understand that you wished you could see a bigger difference.

[Confused in Iowa]

This sounds like my son's situation. He is also diabetic so they check his blood levels for Celiac once a year. The dr. called and said that his levels were still higher than what they want. I was so upset. We've been gluten free for almost a year now.

It's really hard because my oldest child who is 18 is not Celiac so he wants his white bread, etc. So I do keep those things in the house, but I know my son has never cheated...believe it or not, he said the other day that he was glad he was Celiac because he feels so much healthier than he did before.....Even tho he doesn't have any stomach symptoms, his Celiac affects his mental state...He went from a C-D student to an A-B student almost immediately and had such a better attitude and disposition......

But we stopped eating out in restaurants, and when I make meals I make gluten free meals for all of us......Just frustrating - I didn't ask the Dr. what the actual number was. Just frustrating when you are thinking you are doing everything right and to find you aren't.

[LisaJ]

I don't think the lactaid is a problem - I took lactaid for the first 5-6 months after I was diagnosed; and I had my bloodwork repeated at the 6 month mark and it had gone from 24 down to 4 (normal range for our lab is <5).

[gfpaperdoll]

Are you cooking with wheat flour in the house? Or wheat flour cake mixes etc? That wheat flour poofs up & gets on everything. Have you checked the toothpaste & shampoo & soap????

If you have wheat bread in the house, do you have separate mayo, mustard, butter, jam etc that is gluten-free???? One swipe on the wheat bread & then back to the butter is enough to make you sick (& keep the blood levels up)

are the wheat eaters washing their hands after handling wheat? If not then they are spreading the microscopic wheat contamination everywhere. Is the gluten-free person washing hands before eating anything? I would think for kids a big cross contamination would be those game controllers etc.

really keeping a mixed kitchen is just chancy, better to be all gluten free & the others can just eat it when they are out. Plus it shows more support for the person that is gluten free. we need at least one safe haven - a place where we can eat anything & know we are not going to be sick...

If the parent is not gluten-free, then they cannot really understand how easy it is to get contaminated, well unless the parent went gluten-free for 1 year in support of the kid...

If anyone has the room & the gluten free person is a teen etc, I would look into making them their own space in the basement or above garage etc, where they could have their own refrig, sink, toaster & microwave & counter top they deserve a gluten free zone. Although these good kids are not going to ask for it, due to the inconvenience of their parents. They have a medical condition and deserve the proper means to be well, think what you would have to do if they had polio or something...

[ShayBraMom]

From what I understand is, you Daughter is doing good but the Levels are still up, down a bit but up right? If she is doing good then you are doing good! Her levels are going down, that is important! Not everybodys Levels drop the same! It can take anywhere up to 1-2!!! years for the Levels to drop! A year is a long time but it can still take even longer before you see the results you want! Contamination at school can almost not prevented, even if she doesn't eat there! At least her levels did drop even ifnot all of the way, she does nt have physical problems right? I mean you thought you where doing good so far so she must have beenf eeling good!

Hugs!

[Confused in Iowa]

I won't eat things that my son can't eat in front of him..I'm sure it's cross-contamination taking place that is elevating his levels. Cuz for a 12 year old boy - he's such an inspiration - in handling his diabetes and this.....Plus he hasn't let anything slow him down in playing his football, baseball, basketball etc.

So we are just going to re-think the environment and look at cross-contamination.

Oh one more thing - Which to be honest I never thought of. What do people do about their grills for grilling out meat? Ocassionally i'll do like beer brats when my son is with his dad....so was thinking wondering if he's not getting cross-contaminated from that when I grill his stuff...he loves chicken breasts grilled up so usually do several for him so he can eat that for snacks....

And one more thing - you know what is the hardest about this....is now it's time for the football parties, etc. to be taking place with his team members.....and where do they always want to go - but out to a pizza place....UGH how frustrating....and a 12 year old (or maybe it's mine) just isnt' thrilled with the idea of going to a pizza place and ordering salad or drawing attention to himself by bringing in his own pizza. Many times I try to force myself into the lead on scheduling things like this so I can suggest a pot luck so I can take food that he can eat. KNow there's no good answers for this - just venting!

[mouth]

Hi Everyone,

I haven't posted in a while since I thought we were doing well. However I just got our bloodtests back from our 1 year checkup and her numbers are still WAY elevated. I am not sure how long the antibodies take to drop. She started at 120, was down to 104 and one year later she is at 80.1

The doctor wants her under 20. The numbers are on a decline but I am not sure how fast they drop. Are they looking for a steady decline? Do some kids take longer than others? \

She is a terrible eater and is also anemic. We were on an iron elixir and got her levels to normal but she won't eat meat and now levels are dropping again.

I have made recalled all companies and double checked that formulas haven't changed. The only thing I can think is the Lactaid. They said "There are no DECTECTABLE gluten levels in our products" they would not say gluten free. Has anyone else had a problem with lactaid? I am going to buy new utensils tomorrow and the pans used for her food are either stainless steal or Gluten free only pans. I have been so careful...anal really and I am so frustrated that her levels are still so high.

Please help!

Thanks

Melissa

Dear Melissa,

Hi, from what I have been learning, it depends on the child. My daughters numbers were well above the 100 level at 3 months after diagnosis. I dont know exactly, because the lab at the hospital we use just says above 100. That in itself is very depressing.. But, at the 6 month test, her numbers started to go down. She was down to 68. So she had a good drop.. It sounds to me like alot of your other answers, that it may be cross contamination. Have you checked everything? I mean everything.. You really need to. You are lucky I have a girl which means some gluten-free makeup. And it is very expensive. People say you dont need gluten-free makeup, but what happens with lipstick? you eat it? what if you or somebody kisses you on the mouth? It goes into their mouth. Ingestion. I have also been told the same of mascara. It goes on your eyelashes, but when u clean it off, where does some of it go? In your eyes. If you need more info on stuff, email me and I can get you info that Ihave gotten, in fact, I am just doing my 6 month ck on everything..OK?

VVVVVVVVV GLGL

LYnn

[Cam's Mom]

Hi!

I had started another thread in the recovery section addressing this same issue. My daughter is going on 1.5 years gluten-free now and her numbers have gone from 180+ to 80+ to 70+ to 60+ in six month increments. She is also diabetic so I got to wondering if there was something else effecting the tTG or if other auto immune issues could cause the number to remain high.

Sandy actually gave a really nice explanation of antibodies and how they do not disappear from the body immediately. Take for instance a vaccine (ie. rabies) where a virus is introduced into the system so that they system creates antibodies so we don't get the illness. She pointed out that dogs only need to be vaccinated for rabies every three years since the antibodies remain in production for that long. Very interesting way of putting it. (see the other thread for her better and more thorough explanation).

Anyway, I feel that if you think that you are being vigilant and anal, then you probably are. While it feels almost impossible to eliminate 100% of the sources of minute gluten from your world, there are people out there who are being successful and are even still eating out.

We don't eat out, even the cat food and dog food are gluten free, entire house gluten free all new cook wear, cutting boards, soaps, etc., etc. There has to be a point where we're getting it and those antibodies are just hanging on for some other reason!

I asked our endocrinoligist about this issue just today and she had no answer but said she would e-mail someone in Colorado that had some knowledge (because clearly she had none).

Well, I am tired and cranky so I hope this is not coming across wrong. What I am meaning to say is that it sounds like you are doing a great job and I think that there is mounting evidence that there is a physiological component to that number not coming down. Just be strong and keep working your hardest, that's all any of us can do, right?

Barb

[gfpaperdoll]

yes, you can get cross contamination from the grill - highly likely in fact.

you can either get two grills or quit using gluten on the grill but you would have to clean it really really well - you can also get CC from charcoal if it has wheat added...

Not to mention any basting brushes etc.

[Confused in Iowa]

Thanks! I feel soooo dumb! I never thought about the grill until just recently. the little things you do and don't even think about - spend so much time shopping, etc. to make sure everything is safe, and then throw his food on a contaminated grill!

[buffettbride]

We just got back from DDs 3 month follow-up appointment and a blood draw to check TTGs. DD has been largely asymptomatic since we removed gluten and VERY symptomatic when glutened accidentally. We were told that the TTGs can take a while to go down and to not be worried if they haven't gone down a lot. She also said that some Celiacs never have their TTGs go all the way down to what is considered normal. Her concern would be if the TTGs went UP and not DOWN since going gluten-free.

We go in again in six months to meet with a different doctor (our physician's assistant who we have been seeing is having a baby and won't be around then) to talk about when the best time to do a DEXA scan (to check her bone density to ensure she is absorbing enough calcium).

[buffettbride]

Thanks! I feel soooo dumb! I never thought about the grill until just recently. the little things you do and don't even think about - spend so much time shopping, etc. to make sure everything is safe, and then throw his food on a contaminated grill!

I had a serious grill-scrubbinng session since we grill SO much of our food, and much of it covered in what I know now as gluten-filled BBQ and Teryaki sauce.

I can't wait until we can get a new grill and keep it perfectly gluten-free, but DD hasn't been CCd from the grill at all since I scrubbed it.

[buffettbride]

Even tho he doesn't have any stomach symptoms, his Celiac affects his mental state...He went from a C-D student to an A-B student almost immediately and had such a better attitude and disposition......

This has been our biggest improvement as well. DD was always an A/B student, but struggled emotionally and socially. Her poor body was sick so much it was hard to keep good humor about how kids are in school and just felt picked on and singled out a lot. This year she's had a fresh start and a whole summer of getting better behind her. She said it's so much easier now because the little things just don't bother her any more.

[crittermom]

This has been our biggest improvement as well. DD was always an A/B student, but struggled emotionally and socially. Her poor body was sick so much it was hard to keep good humor about how kids are in school and just felt picked on and singled out a lot. This year she's had a fresh start and a whole summer of getting better behind her. She said it's so much easier now because the little things just don't bother her any more.

In My search today I have found out some interesting things. Arm & Hammer Laundry soap cannot guaruntee that their product is gluten free. They do not add gluten however they can't prevent possible CC from manufacturers shipping in ingredients. The same for Palmolive Dish Soap.

[mouth]

Hi!

I had started another thread in the recovery section addressing this same issue. My daughter is going on 1.5 years gluten-free now and her numbers have gone from 180+ to 80+ to 70+ to 60+ in six month increments. She is also diabetic so I got to wondering if there was something else effecting the tTG or if other auto immune issues could cause the number to remain high.

Sandy actually gave a really nice explanation of antibodies and how they do not disappear from the body immediately. Take for instance a vaccine (ie. rabies) where a virus is introduced into the system so that they system creates antibodies so we don't get the illness. She pointed out that dogs only need to be vaccinated for rabies every three years since the antibodies remain in production for that long. Very interesting way of putting it. (see the other thread for her better and more thorough explanation).

Anyway, I feel that if you think that you are being vigilant and anal, then you probably are. While it feels almost impossible to eliminate 100% of the sources of minute gluten from your world, there are people out there who are being successful and are even still eating out.

We don't eat out, even the cat food and dog food are gluten free, entire house gluten free all new cook wear, cutting boards, soaps, etc., etc. There has to be a point where we're getting it and those antibodies are just hanging on for some other reason!

I asked our endocrinoligist about this issue just today and she had no answer but said she would e-mail someone in Colorado that had some knowledge (because clearly she had none).

Well, I am tired and cranky so I hope this is not coming across wrong. What I am meaning to say is that it sounds like you are doing a great job and I think that there is mounting evidence that there is a physiological component to that number not coming down. Just be strong and keep working your hardest, that's all any of us can do, right?

Barb

Dear Barb,

HI, It sounds like you are working your butt off just like the rest of us.. It can take a really long time for the numbers to go down.. My friend it took 3 years to get her daughters numbers down.. There were other mitigating problems.. w/processed foods- even gluten-free ones. Any way, you use an endocrinologist? I use a GI, you might be better there.. It is considered a GI problem or an Auto immune problem. I my self consider it both.. My daughters behavior has not improved one iota. They dont know why.. I am going to take her to a really good neurologist.. Also medications play a big part there too. You are sort of lucky.. you caught it right when she was tiny. MY daugther finally got a sort of positive result just in Dec. after 9 years.. ugh...

well good luck and if there is anything i can do to help feel free

lynn

[mouth]

In My search today I have found out some interesting things. Arm & Hammer Laundry soap cannot guaruntee that their product is gluten free. They do not add gluten however they can't prevent possible CC from manufacturers shipping in ingredients. The same for Palmolive Dish Soap.

I use All Free & Clear.. They list everything on there. And I am finding out that almost every company has been very helpful either in emails or on the phone.. So I spend lots of time doing both.

I use Pamolive dish soap, and it doesnt seem to bother my daughter at all. If you find a dish soap that is definitely gluten-free please let me know..

lynn

[crittermom]

I use All Free & Clear.. They list everything on there. And I am finding out that almost every company has been very helpful either in emails or on the phone.. So I spend lots of time doing both.

I use Pamolive dish soap, and it doesnt seem to bother my daughter at all. If you find a dish soap that is definitely gluten-free please let me know..

lynn

I called Proctor and Gamble this morning and they will guaruntee that both Joy and Dawn dish soaps of all scents are gluten free.

[mouth]

I called Proctor and Gamble this morning and they will guaruntee that both Joy and Dawn dish soaps of all scents are gluten free.

.

THANKS MUCH--- YOU SHOULD POST THIS.. TITLE FYI SECONDARY TITLE DISH SOAPS.. AND PASSS IT ALONG TO ALL. i try to..

lynn

[kevieb]

one of my three daughters' antibody levels were back to normal after 6 months gluten free, but her levels were not as high as your daughter's were.. the other two girls admitted to cheating on the diet and their levels were still slightly elevated. one of them spent 3 months in the hospital supposedly gluten free and came out with her Ttg levels over 100---they had been about 12 when she went in. below 7 was normal on the scale we were using.

[crittermom]

WE FOUND IT!!!!! Mrs. Butterworth's original syrup has apparently changed their formula and consider barley a natural flavoring but since it is not one of the major 7 allergens they don't have to list it. AND Uncle Ben's Roasted Chicken Long Grain 90 second rice is no longer gluten free. Both of these were considered gluten free back in Oct of 06 so I guess I have to check these things more often. Along with the dish soap, laundry detergent (she sucks on blankie) and Lactaid, all the trace amounts must have added up. However I think that the syrup was the true culprit. I am going to put an FYI out as per Lynn's suggestion both here and in the products area based on what I have found in the past few days. I am also going to call that nurse back (for those of you who read my other letter) and let her know which product got us so maybe she can warn or help another confused mom! I told her Katharine didn't sneak food!!!!!

I spoke with her pediatrician today and she said that even if the GI doesn't want to order another Transglutaminase IGA test that she wants one in a couple of months to see if the levels have gone down.

AND some good news.... NO complaints of tummy aches today and she ate Teryaki pork tonight (gluten free of course, called La Choy and they follow FDA 06 guidelines!) Now she has eaten chicken pork and sausage...wow... Now I know, when she doesn't eat and is cranky I need to start looking into some gluten possibilites. This is harder than the doctors made it sound, thank goodness you all are here to help!

Thanks again from my heart and my little ladybugs belly!

[Yellow Rose]

I use All Free & Clear.. They list everything on there. And I am finding out that almost every company has been very helpful either in emails or on the phone.. So I spend lots of time doing both.

I use Pamolive dish soap, and it doesnt seem to bother my daughter at all. If you find a dish soap that is definitely gluten-free please let me know..

lynn

Dove dish soap is Gluten free.

Yellow Rose

[JennyC]

Great. We use Palmolive. I thought that I read somewhere a long time ago that it was gluten free. I will be switching. I do use All laundry detergent. Thanks for the information. I don't know what I'd do without you guys.