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

Failure To Thrive In Celiac Child

lilleroy family

Recommended Posts

lilleroy family Rookie
lilleroy family
Posted

I have concerns questions and hope some one out there can help me. My daughter was diagnosed in Mid february this year with celiac disease and hashimotos thyroiditis(hypothyroidism). Since the initial diagnosis we have been in and out of the hospital totaling now three of the five months since diagnosis. Our most recent hospitalization was due to failure to thrive and she now has engy tube feedings and will regain weight but when the doctors start to decrease of fiddle just a little bit with her medications she loses the weight gained. Now the most recent doctor to take over her case believes there is some other prevalent disease or manifestation that is complicating her disease. Does anyone know of articles regarding failure to thrive or anything that might help us. I am really searching for some solid information at this point as our doctors are about tapped out. Also does anyone know if there have been any family studies regarding the genetics of celiac as I have it my daughter has it yet neither of my parents or my daughters siblings have it.

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

Celiac.com Sponsor (A8-M):


ryebaby0 Enthusiast
ryebaby0
Posted

What meds are your daughter on, and how old is she? Has her liver function been checked, and has she had a biopsy (endoscopy or colonoscopy?). At this point you need to be at a major medical center -- are you? Not to be so nosy, but we landed on this board because my son, though dx celiac/jra continued to fail despite being gluten-free and ended up on ng tube feeds as well. He was given large doses of steroids and something called FK506 (tacrolimus) since they feel he has a very rare disorder called autoimmune enteropathy (his gi system is being attacked by his antibodies). Children's Hospital in Boston can be found on the web and they have information about a lot of gi problems. Once his immune system was suppressed, his arthritis symptoms disappeared, and he began to gain weight but he was hospitalized for 7 weeks, on tube feeds for 3.5 of those. So I'm a little sensitive about failure to thrive!! Let us know how she is doing ~

lilleroy family Rookie
lilleroy family
Posted
  • Author

She's eight, we are currently dealing with Children's Mercy in Missouri but they don't seem to know what to do. She is on Leventhryroid,calicitriol,(recently stopped also)calcium supplements(3000mgdaily)(changed to a bicarbonate instead of a carbonate)Magnesium(recently stopped ),Zinc sulfate,Pertinzole(steroid)Prevacid, PotassiumK and a daily childs vitamin, she has two engy feedings a day for a total of 1300 cc's daily. She had a pic line when we first got her home, but her level of protein and potassium leveled out at the time, her potassium just bottoms out for no real reason. I would like to get her to Texas as there are specialist this way but right now she is visiting her real father whom refuses and believes this doctor at CM has the answers in the mean time her weight is only at 58 varily and it flucatates lots still. Plus she has hypothyroidism or hashimoto's thyroiditis.

gf4life Enthusiast
gf4life
Posted

Wow, I am so sorry both of you and your children are having to go through so much.

I have an 8 year old who is gluten/casein intolerant and has other health problems, he is only 53 lbs.! I'm surprised that they are considering your child "failure to thrive". It must be that she can't keep the weight on. My son has actually gained 5 lbs and 3/4 of an inch during the first two months on the gluten-free/cf diet, which we are all so happy to see that much improvement.

I don't know how the hypothyroidism or hashimoto's thyroiditis affects the system, but it sounds like you are trying your best to get her the treatment she needs.

I will keep all of you in my prayers.

God bless,

Mariann

ryebaby0 Enthusiast
ryebaby0
Posted

We had a picc line too when he first got home. In my head I knew it was a good thing, but I felt so much better when it was pulled! Protein typically takes quite a while to rebound from profound malabsorption, and potassium levels are often (from what I read) impacted by medications. We had started ng feeds around the clock but are now down to 250-500cc a day plus a regular gluten-free diet. He takes all the supplement (Peptamen Jr.) by mouth -- that's unusual, but he really hated the ng process and convinced the doctors in hospital to let him try -- and he did it!

I too, am surprised at her weight. It doesn't seem terribly alarming for her age, but that doesn't mean anything, you would know best. Comparing kids only makes you crazy. What percentage of her original weight has she lost? How far is she from a 50th percentile weight? My son is nearly 11 and weighs 72 lbs. (He was admitted at 48lbs -- about 25% underweight). At 72 pounds he seems so robust to us, but he's still in the 25% -- but that's where he was "normally" (What the heck is normal, anyway? :)

You might want to check out the Rare Diseases page of the NIH; they must have stuff about Hashimoto's that might make you feel more secure. Or try the University of Maryland's celiac research center. It sounds like you are dealing with a lot and doing a good job of it -- it's always good to ask questions and keep records and advocate-- a good doctor/hospital will be pleased that you are interested. Celiac and it's "partner" illnesses are so much more recongized now, I'm sure doctors will be able to help her.

We'll be hoping your journey turns a good corner soon. Keep us up to date ~

Joanna

lilleroy family Rookie
lilleroy family
Posted
  • Author

I have seen so many people saying they wer diagnosed by enterlob what is that exactly, my daughter and I both had blood antigens done and then an endoscope and biospies done to confirm we were positive for celiac disease. My blood came back 92% positive and after the scope even I could tell from the pictures I had full blown celiac yet no symptoms because I have never liked breads or pastas, So if you can tell me what enterlob is I am interested. Thanks.

Oh on the doctor note now he's saying it would be helpful to compare the results as it will better give him and his staff a course of direction. Okay that doesn't sound truthful at all and again he mentioned the studies so I think he's trying to sham me into our being his guinea pigs. Plus I found out he's not a specialist with this just a pediatric GI interested in studying it and doing the 30 year case study.

gf4life Enthusiast
gf4life
Posted

Enterolab is a private laboratory that specializes in a stool test for gluten sensitivity as well as sensitivities to milk, eggs, yeast. They also do a gene test for the main genes that cause Celiac Disease and some other genes that cause gluten intolerance.

Since you were diagnosed using the standard method of blood test and biopsy, you would not need to be tested by Enterolab, but many people who are having a problem with gluten test negative on the standard tests, but are obviously having problems with gluten. Others simply don't want to have the blood tests or the biopsy, or they don't have insurance to pay the bills for the more expensive diagnostic methods. These people are able to order their own tests and confirm that they are gluten sensitive or not.

The disadvantage is that the tests are relatively new and not yet accepted by many doctors. 4 out of 6 doctors my children and I have seen have accepted the results. GI doctors seem to be the most reluctant to accept them.

Open Original Shared Link

God bless,

Mariann

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

Celiac.com Sponsor (A8-M):


flagbabyds Collaborator
flagbabyds
Posted

You doaughter sounds a lot like I did when I was sick. I was only 17 months when I got sick and was diagnosed @ 20 months with 3 months in the hospital. I also have thyroid disease. It took me about a year to fully recover. I was on engy tubes too and a feeding tube when I went home. Try cutting out lactose out of your daughters diet. We did that for 2 years and then reintroduced it slowly and I was fine.

taneil Apprentice
taneil
Posted

I am gluten intolerant and have Hashimoto's. I have not gone on any perscription meds for Hashimoto's. I do know that if they don't have the dose correct on her med's for Hashimoto's they can cause her thyroid to go in to Hyperthyroidism and speed up her metabolism, thus she would lose wait instead of maintain. I am taking a supplament called Thytrophin PMG for my thyroid. If you type that into a search engine you will get information about it.

I would recommend that you get to a hospital in a larger city if you think you should. However, I agree that "normal" is very relative. Both of my children were in the 3rd percentile for wait at nine months...but they were not failing to thrive.

celiac3270 Collaborator
celiac3270
Posted
Also does anyone know if there have been any family studies regarding the genetics of celiac as I have it my daughter has it yet neither of my parents or my daughters siblings have it.

I am the only one in my family who has celiac disease. Although my mother and brother show slight signs of having it and my grandmother seemed to definitely have it based upon symptoms (she is really thin and has the worst osteoporosis her doctors have ever seen!!), blood tests revealed that nobody in my family has it....I am unconvinced, since it isn't uncommon to have a negative blood test and a positive biopsy.....anyway, according to doctors, I'm the only one in my family.

Even though I am the only one in my family who has it of the most recent three generations, my great-grandparents could have had it, or some other relative...it is genetic so there is no way that nobody throughout your entire family history has ever had it and your daughter is the first. Somebody had it, but it may have been before they even knew what it was....or it could have been a silent Celiac (no symptoms).

I don't know if they've done a study into the genetics of Celiac....they probably have but I don't know about it... :)

-celiac3270

Archived

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

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


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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.