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

Frustrated With Co-Parent

Christina.V

Recommended Posts

Christina.V Apprentice
Christina.V
Posted
  • Author

I am one of the "silent" cases for sure, so I did voice the same concerns as you all are pointing out. Not only is she not showing severe symptoms, but she is also on track for her growth charts and her numbers are slightly above normal (not in the 100s). The decision to hold off was not made lightly! The hope is that her numbers may normalize. 

 

The co-parent does need some education on it, however, without very strong direction from the specialists at Children's nothing is going to change. I can give him as much information as possible, I can preach until I'm blue in the face.

 

Thanks for caring! It's so nice to have a community like this!!

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

I am one of the "silent" cases for sure, so I did voice the same concerns as you all are pointing out. Not only is she not showing severe symptoms, but she is also on track for her growth charts and her numbers are slightly above normal (not in the 100s). The decision to hold off was not made lightly! The hope is that her numbers may normalize. 

 

The co-parent does need some education on it, however, without very strong direction from the specialists at Children's nothing is going to change. I can give him as much information as possible, I can preach until I'm blue in the face.

 

Thanks for caring! It's so nice to have a community like this!!

 

How frustrating for you.  :(  I hope he realizes that he is not the centre of the universe soon.

 

I hope you and your daughter are feeling better in the meantime.

beth01 Enthusiast
beth01
Posted

What do the numbers mean anyway?  Her tests results are 27.6, isn't it supposed to be <4.0?  Mine was 35.6, and I have a TON of health problems, my daughter's is >100 and she has little symptoms. Isn't a positive a positive?  I am not trying to sound b%$@#y, just asking.

beth01 Enthusiast
beth01
Posted

Another thing, what kind of custody agreement do you have?  Could you go to mediation to try and get your ex to change his mind? Maybe with the help of a judge you could get him to comply.  It has to be some sort of abuse to your daughter feeding her foods that are going to harm her later in life.  I know I told my ex-husband after my daughter's diagnosis that if he wasn't going to change her living conditions so it was safe for her, she wasn't going home with him. He changed his tune immediately.  Of course, I am sicker than hell right now and told him if he didn't change her lifestyle, she would end up like me.  He has seen me, knows I am not well.

I kind of want to slap your ex myself!

nvsmom Community Regular
nvsmom
Posted

Another thing, what kind of custody agreement do you have?  Could you go to mediation to try and get your ex to change his mind? Maybe with the help of a judge you could get him to comply.  It has to be some sort of abuse to your daughter feeding her foods that are going to harm her later in life.  I know I told my ex-husband after my daughter's diagnosis that if he wasn't going to change her living conditions so it was safe for her, she wasn't going home with him. He changed his tune immediately.  Of course, I am sicker than hell right now and told him if he didn't change her lifestyle, she would end up like me.  He has seen me, knows I am not well.

I kind of want to slap your ex myself!

Her daughter does not have a diagnosis yet, and the doctors are dragging their feet, so that makes it hard, if not imossible, to make him comply.  :(

DinaZ Newbie
DinaZ
Posted

I am one of the "silent" cases for sure, so I did voice the same concerns as you all are pointing out. Not only is she not showing severe symptoms, but she is also on track for her growth charts and her numbers are slightly above normal (not in the 100s). The decision to hold off was not made lightly! The hope is that her numbers may normalize. 

 

The co-parent does need some education on it, however, without very strong direction from the specialists at Children's nothing is going to change. I can give him as much information as possible, I can preach until I'm blue in the face.

 

Thanks for caring! It's so nice to have a community like this!!

Christina-I feel for you guys. Is there anything you can do through legal channels?

DinaZ Newbie
DinaZ
Posted

I think it's time for a new doctor and get her tested. There should be no reason for a doctor not to test if there is suspicion that she has celiac.

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

Celiac.com Sponsor (A8-M):


Christina.V Apprentice
Christina.V
Posted
  • Author

Labs have different ranges. In this case <15 is a negative. So the 27.6 number on the TTG IgA is not "highly" elevated. The recommendation is coming from two of the top specialists in Colorado. I think I said this before, but the worry is that we actually have caught it too soon to tell, and that long term a false negative diagnosis will be more detrimental than holding off. I agree, because IF she does have celiacs and gets a false negative, the co-parent will fight me on getting her re-tested in the future.

 

I am actually comfortable with waiting for 6 months. We share custody 50/50 and have shared decision making as well. I don't see how a judge would dictate that the endoscopy be ran with so much medical advice to the contrary. I was extremely frustrated a couple months ago BEFORE we met with the doctors. They said they've seen these numbers go back to normal over a short period of time, hence the 6 months. I'm hopeful that they do.

beth01 Enthusiast
beth01
Posted

I think that people are going to have different opinions for two different reasons:

1. They have children with celiac and have been through the testing before ( some with a co-parent).

2. The degree in which they are sick if they are Celiac themselves.

 

I don't know much about Celiac and it's testing, I was just diagnosed two months ago.  I was a lab tech for 16 years but didn't work in immunology so I didn't deal with a lot of testing dealing with autoimmune disorders. I know different labs use different methodologies and instrumentation so that could be why the normal values are different.  For Mayo in Rochester the values are <4 - >100.  I don't know if my doctor would consider a 12.6 increase from the normal range significant or not.

 

I can't state if I would be comfortable with the waiting six months, but I would be asking questions like:

Should we be trying to figure out why her tTg IgA is elevated ( if even only slightly) when only disorders and conditions like chronic liver disease, diabetes, crohn's, colitis, thyroiditis, and serious infection can cause the slightly elevated test result if it isn't Celiac?  Won't these conditions and disorders also cause long term health problems ( if not death) if not caught, or is it fine in 6 months to do that testing also?  One lab draw would at least rule out the liver disease, diabetes, thyroiditis, and infection.  Those would be the ones to worry about waiting 6 months for a diagnosis. Just my opinion.

 

I understand you wanting to wait since you have problems with the co-parent and I feel your pain and I am glad you are comfortable with it.  Thankfully when I called my ex to first tell him I wanted the kids tested he didn't fight me on it, and when I called him to tell him my 11 year olds test was positive he let me take the reigns and help him figure out to go gluten free( which I wish I wouldn't have done and waited until her tolerance test but I didn't know she needed one). I asked the GP if I should have her gluten free and he told me yes. I didn't now until the ped's GI called two weeks after her diagnosis to schedule an appointment that they want the endoscopy. The said we would discuss it at her appointment if they want her to do the challenge, by then it will have been two months for her gluten-free. I had a biopsy and blood drawn all on the same day and didn't know just how they went about it in patients that weren't in the hospital. But then again I think he gave in so easy since I have been sick for years and am slowly wasting away still even after a diagnosis, he sees it.

 

Good luck to both you and your daughter and Welcome to the club.  I hope you get the answers for her and it causes the least discomfort for her and in turn you.  It's rough to see your children sick.

nvsmom Community Regular
nvsmom
Posted

I didn't reaize the upper limit of her lab was 15 - she's almost double the upper limit.... that's getting beyond slightly elevated

beth01 Enthusiast
beth01
Posted

My thoughts exactly. 

Christina.V Apprentice
Christina.V
Posted
  • Author

Per the docs it's "slightly elevated" -- they are looking at >100 as being "highly elevated"

 

It's all in the interpretation I suppose!

come dance with me Enthusiast
come dance with me
Posted

If you reduce the gluten intake, that could also skew results.  I'd be keeping her on a full gluten diet and getting it done ASAP, that advice sounds absurd.

Archived

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

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


  • Member Statistics

    • Total Members
      131,555
    • Most Online (within 30 mins)
      7,748
    JMF
    Newest Member
    JMF
    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.