9 replies to this topic

[lilleroy family]

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.

[ryebaby0]

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]

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]

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]

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]

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]

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

[flagbabyds]

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]

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]

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