1 Year In And Numbers Aren't Where They Should Be

[Gluten Free Girls]

Our soon to be 7 year old daughter was diagnosed with Celiac disease almost a year ago. Our 13 year old daughter was diagnosed soon there-after and I followed with my diagnosis a few weeks after that. We are a trio of gluten free girls coexisting with our 8 year old son and my husband who are both, enjoying gluten and negative on Celiac tests for the time being. We have been so diligent and ultraconservative in making sure that gluten is not sneaking it's way into our girls. Our youngest daughter showed severe damage in her biopsy results. Her blood test results were off the charts. At the six month mark, numbers dropped but only minimally. Blood test results from May showed that while numbers are still on their way down, they are not where they should be or need to be. We are 100% certain that she is not sneaking gluten. Our oldest daughter follows the same procedures and eats the same diet and her numbers are beautiful. Any advice?

[christianmom247]

Is she taking any medications, either prescription or over-the-counter? Some of those have gluten in them. Does she feed your pets? Their food probably has gluten in it, too.

Hope she's doing better. As hard as all this can be on us as adults, it's got to be even harder on a child.

[kareng]

Check the meds & pet foods as suggested. Also, re-check the processed foods she is eating regularly. I can't tell you how many people eat stuff like Corn Flakes not realizing they have malt (barley) in them. Also, make sure she doesn't think that Rice Krispies treats are gluten-free if anyone elses Mom makes them, & that sort of thing.

Tell the 2 GEs (gluten eaters) in your family that something is still wrong and drastic measures must be taken. Make sure they haven't been using the same colander for thier pasta or her PB. Maybe they could cut way back or eliminate gluten in the house.

[dilettantesteph]

Though the vast majority of celiacs are safe eating the tiny amount of gluten allowed in processed foods, my son and I continued to have symptoms. If the other suggestions don't work, you could try a diet of produce and meat and see if that helps. That is what my GI suggested, and it worked for us.

About.com has some information about this in their celiac disease section. Their info is veted by a medical staff.

[Mizzo]

Check the meds & pet foods as suggested. Also, re-check the processed foods she is eating regularly. I can't tell you how many people eat stuff like Corn Flakes not realizing they have malt (barley) in them. Also, make sure she doesn't think that Rice Krispies treats are gluten-free if anyone elses Mom makes them, & that sort of thing.

Tell the 2 GEs (gluten eaters) in your family that something is still wrong and drastic measures must be taken. Make sure they haven't been using the same colander for thier pasta or her PB. Maybe they could cut way back or eliminate gluten in the house.

Is gluten still being consumed in the house ? If so something is getting into their diet. As stated above check meds,vitamins, shampoos body wash etc.. check all dressing, marinades and mixed spices.

Make sure shared colanders, toaster, and /or double dipping into open shared jars is not occurring.

Your younger dx may be more sensitive so you have to be extremely careful. If more are celiac than not you really should be completely gluten-free in the house. Majority rules is for safety sake, not inconvenience sake .

good luck

[frieze]

she's 7, how about not being compliant at school? if if it is not willfully...

[1974girl]

Have they ruled out the other stuff that can also increase numbers? Hashimotos thyroiditis, type 1 diabetes, and autoimmune liver problems can all increase Ttg. We have our first repeat blood test in July and I am extremely nervous about it. I am doing the best I can but not sure if it is enough. (she is 11)

[xjrosie]

I would go with checking at school. It's probably easier for the 13 y.o. to comply because older kids don't normally have parents send snacks to school for birthday parties and such.

If you haven't done so already, go to her school and talk to the principal and also any teachers your daughter has. They all need to be aware of her situation. Also, make sure that kids at school do not touch anything she eats, and she can't touch anything her friends eat. It could have gluten on it. Her desk should be wiped down after each time the class has snacks, in case her friends touched her desk while eating. My daughter's school calls me when there are surprise treats, and they send notes home for planned parties, listing everything they will have to eat with ingredients. I then have to okay anything my daughter is allowed to have. I get a lot of phone calls, lol.

Sounds funny, but no lip kisses with gluten-eaters unless they've washed their mouths first. No sharing lip balm or lip gloss. Keep her toothbrush away from toothbrushes that gluten-eaters use. I bought my daughter a toothbrush case to use, until our whole house went gluten-free.

My daughter is super-sensitive, so we've learned the hard way. I have to say, she makes me so proud because she even remembers things that I sometimes forget. She gave away a whole pack of Tootsie Rolls because her friend touched the package while eating lunch.

[Gluten Free Girls]

We don't lick envelopes, or wear lip gloss. Toothpaste, vitamins, prescribed and OTC meds have all been checked. We have not been to a restaurant in a year. We have separate peanut butter and butter. We have checked our baking powder, spices, vanilla....literally everything in our pantry. We bought all new kitchen utensils, cutting boards, colanders, etc. We do not have wheat pasta or wheat flour in the house. Mabel has not accepted an offer of food of any kind at school or from friends and neighbors. Her teachers have watched her like a hawk and I provide gluten free snacks when peer birthday celebrations or school events occur. I am 100% certain that she is not ingesting gluten. We do not have pets in the house. We are extremely dilligent about the foods that we buy.....we have yet to make a mistake and purchase something that contains gluten. Hashimoto's syndrome was ruled out in January as well as other concerns. The only theory that we are working off of is that her numbers were originally off the charts when she was first diagnosed, and therefore her body is taking a lot longer to heal. Being a year into this process, I fear that something else is going on but I have no idea where we should begin. I would just love to know if there is someone else out there that has had similar blood test results.

[dcns65]

My 13 year old son was diagnosed in Jan. His numbers were off the charts like your daughter's. We too have been vigilant and the house is gluten free (except for some crackers). We replaced cookware, pancake grill, waffle iron, toaster, and cooking utensils. He won't eat something if he thinks it might have gluten. We have eaten out but we check the place out carefully before. At his 6 month follow up his numbers had dropped to the low 100's and the GI doctor was pleased. I was told it could take 1-2 years before his antibody numbers come back normal he was so sick. He too has hypothyroid. Our biggest challenge is getting him to gain weight. Only 10 lbs in 6 months. He is still significantly underweight. I'm hoping when we are home this summer (I teach) he can eat more and gain weight.

So I guess, yes, my son is similar. Our GI doctor said as long as the numbers are going down that is good.

Hang in there.

[IrishHeart]

We don't lick envelopes.

The only theory that we are working off of is that her numbers were originally off the charts when she was first diagnosed, and therefore her body is taking a lot longer to heal. Being a year into this process, I fear that something else is going on but I have no idea where we should begin.

The gluten on envelopes is just a myth, hon.

Do not worry about that, ok?

She could just be taking a long time to heal, although, in children, healing is usually faster.

I know many people do fine with GEs in the house, but whenever I hear that someone is not healing after a year, I always suggest that cross-contamination may be the problem. No matter how hard someone tries, if they do not clean up the area thoroughly, it will happen. I cannot explain why your older daughter is different from the younger one, except to say....a 13 year old will be more vigilant than a wee one. Inside the home and out.

What does her doctor say about the high numbers she has upon re-testing?

[frieze]

Our soon to be 7 year old daughter was diagnosed with Celiac disease almost a year ago. Our 13 year old daughter was diagnosed soon there-after and I followed with my diagnosis a few weeks after that. We are a trio of gluten free girls coexisting with our 8 year old son and my husband who are both, enjoying gluten and negative on Celiac tests for the time being. We have been so diligent and ultraconservative in making sure that gluten is not sneaking it's way into our girls. Our youngest daughter showed severe damage in her biopsy results. Her blood test results were off the charts. At the six month mark, numbers dropped but only minimally. Blood test results from May showed that while numbers are still on their way down, they are not where they should be or need to be. We are 100% certain that she is not sneaking gluten. Our oldest daughter follows the same procedures and eats the same diet and her numbers are beautiful. Any advice?

could you post the results? not trying to beat a dead horse, but what about recess?getting to and from school?

[StephanieL]

We had a large drop at 6 months, 2 its at 12 months and only 2 more at 18. We went through diet. Got test strips for things not labeled" gluten-free". We had new pots and pans so we knew that wan't it. He's only allowed food from home at school so that wasn't it.

At 18 months I demanded some other tests and we found wacky TSH levels. After a few appointments he was put on thyroid meds. We are due in for blood work in a few weeks so I am looking forward to seeing what his numbers are at now. We also had a second more specific test that is use for dietary compliance run because we were SURE it wasn't his diet. That test said that he was absolutely WNL and proved it wasn't his diet.

[Cara in Boston]

My son's numbers barely budged after 6 months (mine were within normal range within weeks) so we "stepped it up" . . . no more "processed in a facility that handles wheat", no eating out - unless the place was 100% gluten free, added a placemat to his school lunch routine, etc. etc.

At his 1 year check-up (just last month) there was a significant drop. Not yet in normal range, but much better. The doctor said as long as it is going down, she thinks we are on the right path. Some people just take longer than others.

My next step was going to be testing strips (in case something we thought was safe was not) and hiring a "gluten consultant" to come to our home and find the problem.

We have 2 gluten free and 2 not so I was/am suspicious of things like kitchen sponges, our cat's food, etc.

He does not get GI symptoms - just a change in behavior - so it is sometimes hard to tell if he has been accidently glutened. Is he "gluten-bad" or just "plain-bad."

It is frustrating.

Cara