Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

Gluten Free Girls

Recommended Posts

Gluten Free Girls Apprentice
Gluten Free Girls
Posted

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


christianmom247 Explorer
christianmom247
Posted

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 Grand Master
kareng
Posted

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 Collaborator
dilettantesteph
Posted

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 Enthusiast
Mizzo
Posted

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 Community Regular
frieze
Posted

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

1974girl Enthusiast
1974girl
Posted

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)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


xjrosie Apprentice
xjrosie
Posted

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 Apprentice
Gluten Free Girls
Posted
  • Author

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 Apprentice
dcns65
Posted

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 Veteran
IrishHeart
Posted

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 Community Regular
frieze
Posted

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 Enthusiast
StephanieL
Posted

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 Enthusiast
Cara in Boston
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,552
    • Most Online (within 30 mins)
      7,748
    judytay080
    Newest Member
    judytay080
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.