New Here....not Sure Where To Go

[WKG24]

Hello-

I joined this site after googling so many different things concerning my 20 month old son---every question kept bringing me back to this site! This may be a long post, but thought I might need to give some background on my son so I could get some help from anyone.

George is our 4th child, born 7 lb 7 oz. I had 4 children in 4 years, none being twins. So at the time of G's birth, I had a 4 year old, an almost 3 year old and a 19 month old. I breastfed him for 4 months and then my supply went way down (imagine why!) and supplemented with formula. By 6 months, he was on solids and the ped told me to put him on formula only since he wasn't gaining weight. He went from 50% at birth to under 5% at 6 months. They were thinking I was just too busy and not making fatty milk to give him. Cow's milk formula did not settle well with him so we quickly switched to soy and/or lacto-free. It worked well.

However, all throughout his infancy, he was a very gassy baby. More so than my other children. He also had major blow-out diapers several times a week, another new thing for me. My other children were fairly regular and had formed stools by the time they were crawling. G never had a formed stool and it was around crawling (8-9 months) that I began to think that it was strange. Not only were they very runny, they smelled so horrible. Not like a typical diaper. If he was my first, I might not know any different. But having 3 others so close in age, I was so used to baby diapers and felt like I knew what was "normal." Anyway, the ped began to worry when he was only 15 lbs at his one year check. They ordered a CF sweat test, which came back normal. They put him on pediasure, which he tolerated but it didn't change his diapers. I tried peanut butter, cream cheese, olive oil on everything, butter, nutella, you name it. I tried everything to fatten him up. Weight check after weight check he just barely gained an oz or two. Finally at 18 months they referred us to a ped GI here in town. They did all the bloodwork and stool testing and it came back normal.

Also, though out all of this time, beginning around 4 months, he developed a very red and scaly patch on his face. This lasted for months. His older brother has eczema, so we have an entire medicine cabinet full of prescription creams and ointments. Nothing really worked. Then the patch cleared up but he began another one on the back of his leg. About the size of a silver dollar. Same scaly, red round patch. Then he developed more on his elbows and his knees. They would get raw and open up and bleed at times (still do). He also began with constant diaper rash (or what we believed was diaper rash) and this was constant as well. Maybe getting better some weeks but then getting very red and patchy and irritated again. The GI ped dismissed the rash as eczema and just said to stay on top of it.

We met with a nutritionist after the GI appt and she was very helpful. She put him on a high calorie fiber formula - soy based. He drinks about 2 cans a day, which is a total of 600 calories and 20 grams of fat. He doesn't eat much else. Nutritionist said this was fine at this point, he's just needing the calories..doesn't matter how he gets them. Around 15 months he had stopped eating much solid food...he would literally shudder and gag with certain foods. He hated bread and pasta..couldn't get him to eat a pb and j sandwich. I was resorting to baby food again. So this formula was great bc I knew he was getting at least some calories and fat. I didn't like that he was on a liquid diet, but I didn't know what else to do (still don't!)

Now he is 20 months, almost 21. His last weight check was last month and he was 19.1 lbs. His height has not gone up very much...looking back at his records, he has grown only 2.5 inches in 11 months. That is scary to me. He is under the 1% ---something like .03.

Since the GI here didn't seem to know what else to do, I've been researching like crazy to figure out what's going on with my son. I have good friends who have celiac in their family and they swear it must be celiac, just not showing up on the bloodwork. We have not scheduled an endoscopy yet bc we are wanting that to be last resort. I worry about the procedure, he is so tiny! This friend of ours suggested taking him off of gluten and seeing what that would do. Amazingly, he has gone from 5-6 horrible diapers a day to maybe just 2 and they are more "stiff"...we get so excited about a formed poop these days! He has been off of gluten 4 weeks now.

In the meantime, I have also checked into getting a second opinion with a dr in Atlanta. We are in SC but I grew up in ATL and have family there, still. This group is supposed to be very good with digestive issues and FTT. I have also set up an appt with an OT person to evaluate George's speech and his eating. He does not like to eat, though in the past month he has gotten better! He also has just a few words. My other children were speaking in sentences by now.

Overall, G is our "easiest" child, he is fun-loving and sweet and happy most of the time. He doesn't act sick or look sick. He just looks like a 9 month old walking around!

One more thing, I had to get the lab work from the GI here so I could take it with me to ATL on the 10th. I was looking over his numbers and some of them looked off to me. They were marked high or low if not in normal range. In particular, his monocyte count was pretty high at 19%. Normal range is 2-6%. Also his lymphocyte count was low and his neutrophil was high. Is this common in celiac?

I'm hoping to get some answers next week. I am aware that I should probably not have taken him off of gluten before getting any kind of diagnosis, but honestly I was so tired of not doing anything about this! I want my child to GROW. My next appt with the GI here in town is scheduled for JULY. They didn't leave me with any answers or tips. Not one word was mentioned about celiac or gluten intolerance or anything else. So I just felt like I should do something on my own.

Thanks for any input...anything! I am worried about my baby!

WKG

[Cara in Boston]

When you say, "they did all the blood work" . . . are you certain they tested (correctly) for Celiac? You should get a copy and look for the specific tests and make sure they were all done.

The symptoms certainly sound like celiac and often, blood tests are falsely negative in young children. If he is doing better on the GFD, you may already have your answer. It will be very difficult to do any additional tests if he is not eating gluten. Hopefully by the time you are seen again, you will have noticed enough improvement that your doctor will be able to make the connection to gluten without doing more tests.

Cara

[WKG24]

When you say, "they did all the blood work" . . . are you certain they tested (correctly) for Celiac? You should get a copy and look for the specific tests and make sure they were all done.

The symptoms certainly sound like celiac and often, blood tests are falsely negative in young children. If he is doing better on the GFD, you may already have your answer. It will be very difficult to do any additional tests if he is not eating gluten. Hopefully by the time you are seen again, you will have noticed enough improvement that your doctor will be able to make the connection to gluten without doing more tests.

Cara

Thank you, Cara.

Here are the tests that were run besides the common CBC labs.

Fecal Fat

Tissue Transglutaminase IgA AB (not sure if I need to put more for you to know what that is)

Lactoferrin

TSH ( thyroid, I had them run this because I have Graves Disease. Got it after 3rd child was born and put on meds, got pg with George while on meds but stopped immediately when I found out...always thought that could be something)

All was in normal range apparently. They also did full metabolic work-up and that was all "normal" though some things were out of range like Creatinine, Sodium, Potassium and Chloride. Nothing was mentioned about any of this and I am just now seeing the numbers since I asked for a hard copy of all his results to take with me on the 10th to the new dr.

[Cara in Boston]

Maybe someone with more experience can chime in, but it looks like you got ONE of the 5-8 tests they usually give for celiac disease. The one you got is the most unreliable because they didn't check to see if he makes enough IgA in the first place (total IgA). My son, age 7 (diagnosed by biopsy) was negative on all IgA tests and only showed "inconclusive" results on the IgG tests - which is why they usually do a whole panel of tests . . . one isn't enough.

The tests are weird . . . my son's blood tests were odd, but not positive, but he had a positive biopsy. My blood was very positive, but I had a negative biopsy. Both of us feel MUCH better now that we are gluten free.

After being gluten free - even for a short time - you need to resume eating gluten for 3-6 months before getting tested . . . and even then you may still get a false negative. Since you have already started the diet, I would talk to your doctor about monitoring his progress and giving you a diagnosis based on a positive response to the diet.

The fact that you have Graves Disease makes it even more likely he may have celiac disease. Were you tested for Celiac? My symptoms did not show up until after the birth of my second child. Pregnancy can be a trigger.

Unfortunately, if you get a doctor who doesn't know much about celiac disease (and there are many) you may be stuck.

In any case, you can't say the possibility of Celiac Disease has been ruled out based on the blood test he had.

Hope this makes sense.

[WKG24]

Thanks again, Cara.

Yes, it looks like just one test was ordered like you mentioned. I'm hoping this dr in ATL will be more thorough. I'm sure he will be, he is supposed to be one of the leading doctors on celiac in the Southeast. I've read such good things about him. He started a support group in GA for celiac kids.

I have never been tested for celiac that I'm aware of. I did have symptoms of celiac when they finally dx the Graves after my 3rd was born. My OB kept insisting I was post partum bc the symptoms were so similar, but when I started rapid weight loss and going to the bathroom all day and night for weeks, they decided to test for something. I have been in remission since George was born. Hate to think that I "gave" him something!

My husband has a sensitive stomach----urges to go at least few times a week based on what he eats. We joke that he has IBS but he's never been tested for anything.

I almost want to get the biopsy done bc I'm wanting an answer so we can get on with it. I hate to go gluten-free around here if he's not really celiac! I know its probably better for us all, but to be honest, we love pizza and breads and pastas. I have tried all the gluten-free kinds of these things and they just don't compare in my opinion. We could do it just fine, its just a huge commitment if none of us really have to do it. And its costly! And high maintenance!

I think I will keep him gluten-free until we see the dr on the 10th. Then if he tells us to go back on, that's fine. If within a few weeks there is marked difference in his health, we probably know the answer.

PS do you have any experience with the skin condition associated with it, HD? George has these scaly scabby places on his elbows, knees and the back of his leg. Sometimes he gets then on his thighs, too. They are tiny blisters and then they scale up and he will scratch them and make them bleed. Nothing seems to help them. This has NOT gotten better with the gluten-free diet, if anything, worse.

[Cara in Boston]

Unfortunately, the doctor in ATL, no matter how good, will not be able to do more thorough testing since you son is already gluten free.

But, the rash certainly sounds like it could be DH (not sure, I don't have any experience with this) and if it is, a biopsy can be done on the blisters and THAT could give you a positive diagnosis.

In the meantime . . . I would suggest again that the rest of the family be tested. Sounds like you have symptoms and if celiac disease is found, it will help with the diagnosis of your son (make it more likely?)

Hope you get some answers, I know it can be very frustrating.

Cara

[rachelh4207]

Yes, it looks like just one test was ordered like you mentioned. I'm hoping this dr in ATL will be more thorough. I'm sure he will be, he is supposed to be one of the leading doctors on celiac in the Southeast. I've read such good things about him. He started a support group in GA for celiac kids.

Who is the doctor? I live about 2 hours north of Atl and have been going to a Pedi GI in Chattanooga TN but I do not believe he specializes in Celiac or gluten issues.

[WKG24]

Who is the doctor? I live about 2 hours north of Atl and have been going to a Pedi GI in Chattanooga TN but I do not believe he specializes in Celiac or gluten issues.

Rachel,

His name is Dr. Jeffrey Green. He is with Children's Center for Digestive Health in Atlanta. I live in Greenville, about 2 hours north of ATL also. I also heard of a wonderful dr. in Winston Salem, NC --Dr. Ivor Hill. I just would rather go to ATL since my parents are there and its a little closer. Our Ped GI here is not very proactive --- wants us back in July and didn't even mention trying gluten free or anything like allergy testing.