Newly Diagnosed 2 Year Old

[Piggottc]

My son was diagnosed about two weeks ago with celiac after a lengthy hospital stay. We are feeding him a completely gluten free diet right now and he is still not gaining weight. He's having trouble eating more than 500-600 calories a day and often throws up. I just want to know if is is normal. My docs don't seem too concerned and have given him zofran to help with the nausea.

[psawyer]

Welcome aboard!

You don't say how he was diagnosed, but a lengthy hospital stay suggests celiac disease in an advanced stage. The damaged intestines will take time to heal on the gluten-free diet. Two weeks is not enough time to heal, although the process should be underway. Give it time. In my own case, pronounced symptoms persisted for a couple of months after going gluten-free.

[Piggottc]

Welcome aboard!You don't say how he was diagnosed, but a lengthy hospital stay suggests celiac disease in an advanced stage. The damaged intestines will take time to heal on the gluten-free diet. Two weeks is not enough time to heal, although the process should be underway. Give it time. In my own case, pronounced symptoms persisted for a couple of months after going gluten-free.

Thanks for he fast reply. Jack was fine until about 1 year when we began feeding him food rather than formula. He's had a big tummy, diarrhea, failure to thrive since about 9-12 months. In August of this year he started having what I assumed was a chronic stomach bug bu he couldn't shake it. We wound up at children's hospital at Vanderbilt in Nashville for 18 days, they got his weight up, put him on formula through an ng tube in his nose and sent us home. We came back a week later because of persistent vomiting and because they got his genetic panel back with two markers for celiac present. They scoped him and found out that he definitely has celiac. Now it's just the issue of getting him to eat enough to gain some weight. Currently he weighs 23 pounds and looks like a skeleton. I'm hopeful that soon he will start gaining weight and feeling better but honestly right now I'm very scared and anxious.

[shadowicewolf]

Its only been two weeks. It can take time for any gain in weight. Depending on how much damage he has, it could take quite some time for him to heal.

[1desperateladysaved]

Celiac damages the villi of the small intestine.  These villi should absorb the nutrients needed to nourish the body.  The villi also tell the pancreas when to fire, according to my functional medicine nurse.  If the villi have major damage pancreatic enzymes may be helpful to break down the food while the villi are healing.  The good news for you is that damage to the villi is reversible.  Have your son's nutrient levels been accessed and is some supplementation being done?  Healing is a bit tricky in my opinion, one needs the nutrients to be able to heal and the healing to absorb nutrients, but healing is programmed in to the body!  Do all you can to optimize healing by following the diet and such, 

 

I returned to good nutrient levels after 30 years of celiac symptoms.   I hope to hear glowing stories of your child's recovery in the near future.

 

(An MD, chiropractor, and osteopathic doctor told me to use pancreatic enzymes when there are damaged villi.)

[tommysmommy]

My son had a similar situation at a 1 1/23rd old with constant vomiting, profuse diarrhea, rapid weight loss - for us it came out of right field because he had not had any indications of a problem before that - in and out of the hospital - doctors insisted it was a virus. Long story short, when he went gluten, dairy & soy free - his issues resolved quite quickly but he was starving. For about 6 weeks, I fed him ever 3 hours - and the meal sometimes lasted an hour. It was a lot of work! I kept the food simple but hearty & filling stuff like lots of mashed potatoes, rice, chicken, homemade chicken soup, roast beef, applesauce, gluten-free pasta. His need to eat constantly subsided as the weight came back in & about 6 months in he was back to eating on a normal schedule. Don't be afraid to overfeed him, he is only absorbing some of the nutrients you are giving him now. And be really cautious to avoid cross contamination - a tiny crumb can set him back. I made our whole kitchen gluten free for his safety & as it turned out, my little family of 5 was better for it (we learned gluten was the cause of all kinds of problems we were facing). My Tommy turns 3 next week & is happy, healthy & growing like a weed. Your son will be too! It's gonna take a little work from super mom but I promise, it will get easier than it is now. Feel free to message me if I can offer any advice or if you need someone to vent to (been in your shoes). Stay positive!

[africanqueen99]

For reference, my youngest is 1.5 and has been gluten-free for a month. She hasn't gained any weight, but her face is looking fuller as if the weight is right around the corner. Right now I'm just letting her body repai itself, but don't withhold food when she wants more.

[Piggottc]

For reference, my youngest is 1.5 and has been gluten-free for a month. She hasn't gained any weight, but her face is looking fuller as if the weight is right around the corner. Right now I'm just letting her body repai itself, but don't withhold food when she wants more.

Thanks so much for all the replies! All of this is making me feel much better. I started him off this morning with a little rice, banana and applesauce and he seems fine. I guess I don't need to stress so much about his calorie intake and just let him eat what he can tolerate right now.

[mommida]

The damage should be healing, but there really is no proven timeline to tell you.  He may be casein intolerant for a while (casein is the protein chain of dairy).

 

Since you are starting with  B.R.A.T. diet, may I suggest when you get to toast that you start with an "allergen free" bread like Enjoy Life rice bread.  (It seems free of most top 8 allergens).  Keep a food journal of all the foods as they are reintroduced to help identify any other food intolerances.  To "challenge" a new food, use the simplest form of the food.  egg ~ boiled egg, not pistochia/ chocolate/ custard with whipped cream with an anchovy on the side.  ( If there was a reaction after this meal what was the reaction too?  Egg, dairy, nuts, or fish?  Challenge the simplest form of the food for 3 days and observe any symptoms.  (if an eosinophilic reaction happened the eosinophil can actively damage normal tissue for 12 days)  Food journals are also to note BM's weight gain, overall well being during daily activities and the locations the individual was at, and even in some case airborn allergens counts.

 

If any other adverse symptoms don't seem to get better (I would give it about 3 months healing on the diet) go back to the doctors and work with a pediatric gastroenterologist

[Piggottc]

Well our doctor just called me.shes concerned that jack's gi tract is so damaged that he really can't absorb the amount of nutrients that he needs right now. So we are going to put in an ng tube again and feed him via pump overnight with peptamen jr . It's easier to absorb. She thinks that once he can get some nutrition in him he will start to heal more quickly.

[mommida]

You never stated if your son had an endoscopy with biopsy.  (They obviously can't do one while your child is too ill.)  Have the doctors ruled out Eosinophilic Esophagitus?  There is a connection with Celiac and EoE (or EE) .  Eosinophils can cause damage anywhere or throughout the gastro track.  Usually the eosinophils are "triggered" by food, but are sometimes airborn ~for lack of a better word allergens.  (A true allergy is different as in the case of Celiac or Eosinophilic disorders it is an auto-immune disorder.

 

onset of the extreme vomitting started in August?  There is also a connection to most cases of EE being dignosed late summer - early fall.

 

There are some helpful sites for allergies and tube fed individuals and a whole list of "non food" that can hopefully help got through the ng tube.  There is also amino acid formula to get some nutrients with out causing any more "allergy" damage.  (My daughter was on Splash for a while.)

 

Some of the non-foods are Dum-Dum suckers and cotton candy.  My daughters go to thing was lettuce.  She could chew and it soothed her throat.  But really 7-11 Slurpees are a lifesaver!  So most of the non-foods are basically sugar, but honestly at that point you just want them to get some calories!

 

My daughter was diagnosed with Celiac when she was 17 months old.  (positive blood panel and DQ2 and DQ8 genes)  too sick for the endoscopy with biopsy

She did great on a gluten free diet until late summer when she was 5.  It seemed like all gluten symptoms started up again, but much worse.  She was vomitting 5 times a day.  Extreme headaches and malnourishment symptoms.  (Also very large tonsils, irritated with cream speckels and some seriously bad breath.)  She was hospitalized quite often for dehydration for about 4 days on an IV.  (She was even vomitting blood, they said it was just a virus  )

Diagnosed with Eosinophilic Esophagitus when she was 6 years old.  (I can go into details at the point anyone needs information for just diagnosed.)

She just turned 11 this week!  She's doing very well and has not been on a feeding tube.  She does public school on-line.

[Piggottc]

Hi

Yes they did an endoscopy with biopsy and found no damage in his upper digestive area just in his intestinal tract. They are 100% sure he's got celiac. He's been on the formula for about an hour now and I sleeping soundly for the first time in weeks. Hoping for a restful night.

[shadowicewolf]

Hi

Yes they did an endoscopy with biopsy and found no damage in his upper digestive area just in his intestinal tract. They are 100% sure he's got celiac. He's been on the formula for about an hour now and I sleeping soundly for the first time in weeks. Hoping for a restful night.

Hoping he gets feeling better

[Piggottc]

Well. He made it till 2am and grew up all the formula. We are taking him into e hospital first thing in the morning. We feel like we've run out of options here. He's lost so much weight and I can't just let him sit here and starve to death while we wait for him to heal. I'm so scared.

[africanqueen99]

I hope he starts to heal now. Please take care of yourself while he's getting care in the hospital.

[mommida]

My thoughts and prayers are with you and your little one.

 

Get a copy of the pathology report from the endoscopy with biopsy and take notice of the eosinophil count.  (if it was even ordered.~ eosinophils are detected by the use of red dye on the cells and the pathologists only does the test if it's ordered.)