Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Failure To Thrive In Celiac Child
0

10 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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 ~

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

http://www.enterolab.com

God bless,

Mariann

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,667
    • Total Posts
      921,670
  • Topics

  • Posts

    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,665
    • Most Online
      3,093

    Newest Member
    tridoc927
    Joined