New Here 12 Yr Old With Eating Disorder And Positive Igg

[desccc]

I have a 12 yr old daughter who was diagnosed with eating disorder (restrictive) in May and has since gained about 10 lbs. She has a history of severe food allergies to egg, nuts, and dairy when younger. She has always been wheat intolerant. She can have bread, but if it's whole wheat or a lot of spaghetti noodles, she will have nasal symptoms. SHe has tested positive in past IgE to wheat, soy, dairy, nuts. She doesn't tolerate a lot of soy or dairy either. In the past few years she has dropped significantly in ht and wt on her growth curve. We did not know she was restricing until early this year..when she lost wt. Before that time, she wasn't growing like she was in past, but no wt loss.

She has been tested in past twice for a blood test for celiac and it was negative. I do not know the specific tests she had.

This week she had a blood test which included Gliadin Antibody (IGG), Gliadin Antibody (IGA) and Tissue Transglutaminase Antibody IGA. She tested POSITIVE to the IGG with a result of > 100. Everything else was within range. She was tested for her iron levels, which were normal and other blood tests were normal. Ceruloplasmin and Transferrin normal range.

Her wt gain has been mostly in her lower body. Her upper body, and esp. her arms are very thin with not much muscle tone at all.

She also has been complaining of left hip pain and right shoulder pain for a good while. It's mostly a discomfort where she says it bothers her to sit long and wants to stand a lot. She has some discoloration of her two front teeth since May or June with staining that never had before. She has also been diagnosed with pyroluria where she needs extra zinc and B6.

She has been taking digestive enzymes for several months now but the doctor wants her to take Glutenzyme by Pharmx starting today.

[ECD]

She also has been complaining of left hip pain and right shoulder pain for a good while. It's mostly a discomfort where she says it bothers her to sit long and wants to stand a lot.

i know this probably isn't what you want to hear, but i just thought i'd give you a heads up that this is also really common with eating disorders. standing burns more calories than sitting, so ed patients often claim various reasons for needing to stand instead of sit. does she fidget or pace, too? i'm all for privacy, but i'd suggest looking into your internet history to make sure she isn't picking up 'tricks' from pro-ed websites which are EVERYWHERE, if you know where to look for them.

that being said, i'm going through testing myself and joint pain is my number one problem, after some cramping pain. it's the same thing - mostly just discomfort- but mine isn't improved by changing position. i hope she gets to feeling better.

as a side note, fear of feeling nauseated or vomiting (that may be phobic or stemming from food intolerances) has been linked to restrictive eating disorders. is it any wonder that if you are constantly nauseated, or perpetually afraid of becoming ill, that you'd be less inclined to eat and become fearful of eating?

[ravenwoodglass]

Has your doctor referred you to a GI for biopsy and celiac confirmation? I have to wonder why this 'doctor' is telling her to take Glutenzyme instead of going gluten free. I don't think that was very good advice at all. Instead of giving her the supplement she should be avoiding gluten.

One thing that is seen with some celiacs is the almost total lack of an appetite. I didn't remember what being hungrey felt like until I had been gluten-free for a couple of months. The last 10 years or so before I was diagnosed it was mainly due to the negative effects of eating gluten but before that I had almost 30 years of eating being something I just needed to do to survive and could go at times a day or two without food and not miss it or feel hungry. I had a lot of nerve damage that began in childhood so for me I think the nerve issues contributed to the lack of appetite. The nerve issues also caused me to be 'figety'. I would sway when standing still and if sitting I had one leg that I tapped constantly very quickly. It was not something I could stop. That leg was also the one that had the most serious nerve damage, when an EMG was done it showed no nerve impulses at all and that was also the side I always fell to when my ataxia was bad. After about 6 months on the diet I had stopped swaying and tapping. I couldn't tap that leg the way I used to if I tried all day. After about a year and a half on the diet my nerves had regrown to the point where I had reflexes in that leg again, I had lost them in childhood.

She needs to be gluten free unless you are taking her for a biopsy then you should wait for the biopsy to be done. A few months on the diet, followed strictly, should show you a very different child. Also do make sure all first degree relatives are also tested, even if they don't seem to have typical celiac symptoms. For some of us neuro stuff and damage to skin and other organs is more dominant than the tummy symptoms, sometimes for years. Just because someone doesn't have daily D doesn't mean they are not being impacted.

[desccc]

i know this probably isn't what you want to hear, but i just thought i'd give you a heads up that this is also really common with eating disorders. standing burns more calories than sitting, so ed patients often claim various reasons for needing to stand instead of sit. does she fidget or pace, too? i'm all for privacy, but i'd suggest looking into your internet history to make sure she isn't picking up 'tricks' from pro-ed websites which are EVERYWHERE, if you know where to look for them.

I already knew about the standing and calorie burning. This may have been the case at early onset. But not now. She complains nightly of her left hip feeling very tight. She's had massage that has helped alleviate it somewhat, so it's a real issue for her.

She does not have fear of vomiting. She does eat at meal times like she is hungry. She's been eating three meals and three snacks for the past 6 months and gets a high calorie shake daily.

[desccc]

Has your doctor referred you to a GI for biopsy and celiac confirmation? I have to wonder why this 'doctor' is telling her to take Glutenzyme instead of going gluten free. I don't think that was very good advice at all. Instead of giving her the supplement she should be avoiding gluten.

No, she has not referred her to a GI for biopsy. She had a consult with GI docs in May when she was hospitalized for eating disorder. The docs said they would not attempt doing an endoscopy with her low wt and health status at that time. She has since gained 10 lbs., but most likely they still wouldn't want to risk it, and neither would I.

Is there other blood work she should have done to rule out celiac..so far the only positive was the IGG Gliadin antibody with a result of >100. IS this alone enough to say take all gluten out of diet? Please keep in mind my d is extremely low wt for her age.

Thanks for your input.

[GlutenWrangler]

I really don't know what her doctor is thinking by having her take Glutenzyme. Glutenzyme is worthless for celiacs. The only time it MIGHT be helpful is to help when someone has eaten something that was cross-contaminted by a small amount of gluten. But even that is questionable. I think her best bet is to try the gluten-free diet, and see how she feels. There doesn't seem to be a biopsy in her near future, so there's no reason to continue eating gluten. You don't need an official diagnosis. And please keep in mind that Glutenzyme will do nothing for her if she has Celiac Disease. Good luck with everything.

-Brian

[DarkIvy]

You know, my understanding is that a positive blood test is good enough. There's really no such thing as a false positive but there's a such thing as a false negative when it comes to celiac bloodwork. If the bloodwork came back positive two different times, that's a pretty strong indicator that she has celiac and NEEDS to go gluten free. Like the others have pointed out, medication isn't going to help. There is no medicinal cure for celiac. Even if you can find something that lessens the pain, it's NOT going to prevent her from damaging her body from all of the gluten.

A biopsy would be kind of moot, I think. You already know she can't have gluten and various other things. Having a "small amount" or "large amount" of bread of spaghetti isn't really going to make a difference, either. A gluten free diet will probably help.

The entire year before I went gluten free, I was having eating issues, too. Looking back I realize that a lot the weight loss was unintentional, and I kind of gave up eating because my stomach hurt all the time. I thought I had an eating disorder, and a lot of other people thought I did, too. When I saw a counselor, she said I didn't have one at all! To this day, when I get gluten in my system, I have a VERY difficult time eating. I'm restrictive not because I want to lose weight, but because I lose my appetite, get nausea, and feel a lot of discomfort in my stomach. She may not realize there's a difference because she's so young. I was in college and I couldn't tell the difference between having celiac and having an eating disorder.

[ravenwoodglass]

No, she has not referred her to a GI for biopsy. She had a consult with GI docs in May when she was hospitalized for eating disorder. The docs said they would not attempt doing an endoscopy with her low wt and health status at that time. She has since gained 10 lbs., but most likely they still wouldn't want to risk it, and neither would I.

Is there other blood work she should have done to rule out celiac..so far the only positive was the IGG Gliadin antibody with a result of >100. IS this alone enough to say take all gluten out of diet? Please keep in mind my d is extremely low wt for her age.

Thanks for your input.

Those are valid reasons for not doing the biopsy and with her blood test results, as another poster stated, the diagnosis is pretty certain. I would agree that yes this is a good enough to take all gluten out. Please don't give her the Glutenzyme, it will not stop the autoimmune process, and also do test all other family members even if they seem asymptomatic.

[desccc]

Thanks everyone for your feedback, it is very much appreciated.

Please clarify regarding the positive blood test result : > 100 for Gliadian Antibody (IGG) with positive being > 17.

It was negative results for Gliadain Antibody (IGA), Tissue Transglutaminase antibody (IGA). From what the nurse told me these two negative results meant she tested negative to CELIAC. Is there any other blood tests we should ask to do like Total IGA and the Endomysial test?

She had a blood test in May and also several years ago for Celiac which came back negative but I do not know the specific tests she had.

The ped thought she had celiac at 9 months old, was referred to a ped GI doc and he said NO she didn't have it. She was always on the low end of growth charts for wt. (had multiple food allergies, with milk, egg and nuts being severe). At age 4 I started giving her a combination of Primadophilus Reuteri (a probiotic), a multi vitamin, and a combination essential fatty acid. For about the next 2-3 years I saw an increase in her weight, then at age 8 or so she started declining again on the chart but no weight loss until this past year. D During that time she was not taking the probiotic and essential fatty acids.

Since May, after being hosptialized for anorexia, she has gained 10 lbs except the last month has lost about 3/4 lb., but grew in height. She doesn't complain of stomach pain, but sometimes stomach fullness and some burping. No other GI symptoms, but back when she was 8-9 when we thought she had a started to restrict she would complain of stomach fullness at meal times a lot.

I do not think the gluten is the only factor for the eating disorder. It's quite complex, but I do think it is a contributer now that she has been tested for gluten sensitivity.

I do not know if I have said this before so pardon if I repeat...but I cannot tolerate much whole wheat bread or I am congested. Same for my daugher and my son. She had severe food allergy and both have had eczema as babies and toddlers. She has very loose joints and her wrists have a congenital defect where the bones are too far apart and will one day require surgery. She has weak wrist strength due to this but doesn't affect her except for softball hitting the ball.

My mother was on a no carb diet for months, and now she cannot tolerate wheat or she has GI symptoms...so I am leaning toward celiac on my side of the family or if not it's a gluten intolerance. I have had IBS in past due to stress as well as my mom and brothers.

This is all new to me so if I ask questions that sound that the answer is already obvsious, I apologize in advance

[happygirl]

I would talk to you doctor about doing the total IgA - if she is deficient, it may explain why she is positive on the IgG based tests (very strongly!) and negative on the IgA based tests. If she is IgA deficient, they may want to run the tTG IgG instead of the tTG IgA.

Unless you know if she is IgA deficient or not, the AGA IgA and tTG IgA cannot be interpreted correctly.

[GlutenWrangler]

I would talk to you doctor about doing the total IgA - if she is deficient, it may explain why she is positive on the IgG based tests (very strongly!) and negative on the IgA based tests. If she is IgA deficient, they may want to run the tTG IgG instead of the tTG IgA.

Unless you know if she is IgA deficient or not, the AGA IgA and tTG IgA cannot be interpreted correctly.

That's an excellent point...It's definitely worth bringing that up with her doctor. It's pretty clear that Celiac Disease has been a pretty central issue for her entire life. It's pretty telling that her pediatrician thought that she had celiac disease at 9 months old. And a positive blood test is enough to put her on a gluten-free diet for good. Don't buy into what her doctors are saying. It's her health, not theirs.

-Brian

[Treen Bean]

You know, my understanding is that a positive blood test is good enough. There's really no such thing as a false positive but there's a such thing as a false negative when it comes to celiac bloodwork. If the bloodwork came back positive two different times, that's a pretty strong indicator that she has celiac and NEEDS to go gluten free. Like the others have pointed out, medication isn't going to help. There is no medicinal cure for celiac. Even if you can find something that lessens the pain, it's NOT going to prevent her from damaging her body from all of the gluten.

A biopsy would be kind of moot, I think. You already know she can't have gluten and various other things. Having a "small amount" or "large amount" of bread of spaghetti isn't really going to make a difference, either. A gluten free diet will probably help.

The entire year before I went gluten free, I was having eating issues, too. Looking back I realize that a lot the weight loss was unintentional, and I kind of gave up eating because my stomach hurt all the time. I thought I had an eating disorder, and a lot of other people thought I did, too. When I saw a counselor, she said I didn't have one at all! To this day, when I get gluten in my system, I have a VERY difficult time eating. I'm restrictive not because I want to lose weight, but because I lose my appetite, get nausea, and feel a lot of discomfort in my stomach. She may not realize there's a difference because she's so young. I was in college and I couldn't tell the difference between having celiac and having an eating disorder.

I had a similar situation. I basically quit eating because it hurt too much and I kept getting sick. I was down to eating nothing but fresh fruit and vegetables. My appetite vanished and I looked like a skeleton. The doctors all thought I was faking my symptoms in order to not eat. They all claimed I was anorexic, etc.... Eventually I found a wonderful doctor who put me on a gluten free diet. My symptoms began to disappear. I was able to eat again without fear of pain or sickness. The weight I had lost slowly returned. Now, I am able to live a happy gluten free life. I can now look back and say that I may have had an eating disorder, but it was not done purposely to loose weight. I was just trying not to get sick, which caused me to severely restrict my diet. I feel for you. I know you must be very scared for your daughter. My family was for me as well. I will pray for you. It's a hard journey, but the end result is worth every tear.

[desccc]

Happy Girl wrote:

Unless you know if she is IgA deficient or not, the AGA IgA and tTG IgA cannot be interpreted correctly.

[happygirl]

Quest can do it also.

Celiac bloodwork info: Open Original Shared Link

[DarkIvy]

I also wanted to add:

In my case, my bloodwork and biopsy both came back negative. My GI thought I was crazy. He only told me to go gluten free because I told him my regular physician says I shouldn't have it. He kind of gritted his teeth and said "well, if you don't have celiac, maybe it's an intolerance." You'd be surprised how many medical professionals do not take celiac seriously. They just don't. My regular physician agrees that I most likely have celiac, but without positive bloodwork or a biopsy I cannot actually be diagnosed as having celiac. It's hereditary though, and my grandma has a very, very bad case of it. Her symptoms are similar to mine, which is why I even started to get tested for these things in the first place. I may not be "celiac" to medical community, but I'm glad I went gluten-free anyway. It did wonders. I gained back all kinds of weight.

It can't hurt for you to put her on the diet for a while and see what happens. If it works, you've got yourself a solution. If not, at least you know what it isn't and can start looking elsewhere. Also, there are people who are not officially celiac, but have gluten intolerance. Either way... I'd suggest trying the diet. You might find that it helps some of her symptoms.

The point is, celiac can be very difficult to diagnose. The bloodwork and biopsy are both subject to a certain degree of inaccuracy. I've met many people who, like me, tested negative for celiac but get sick every time they eat gluten. This is not uncommon, and it is not uncommon to test negative and then have the doctor disregard everything and say that there's no way it could be celiac. It's also not uncommon for doctors to be misinformed about celiac in many ways: my GI told me celiac is not hereditary, for example. If celiac IS the culprit, they could be missing it, misinformed, or unaware. They could be one of many doctors out there that honestly just doesn't get how serious of a condition it really is. If you even suspect that it could be a possibility, I'd stick her on the gluten-free diet and see if it doesn't alleviate her symptoms.

[Bell]

It's an interesting point that there's no such thing as a false negative with bloodwork. The only advantage I can see (in the UK at least, and perhaps with insurance) is that the addition of a biopsy diagnosis allows us Brits to get some vouchers for gluten-free food. Personally I can easily live without "fake" bread, pancakes, porridge, etc and have something else instead. Especially since you need to be making yourself ill by eating gluten in order to test positive on the biopsy. I really do feel for your daughter, especially with the suspicion of an eating disorder that must make her feel very self conscious and ashamed, and also because it is partly true! The effects of this illness do extend to the emotions, and there is an element of not daring to eat anything, because the glutened effect lasts for days after it has happened, and also DEFINITELY affects the emotions in a immediate and very negative way. The sooner she is on a diet that makes her not fear food and helps her to feel well, the less psychological harm will be done. You are being a really good and loving parent, and I hope things work out.

God bless.

[SGWhiskers]

I would also agree with the previous posters and add that according to my lab results summary, a positive IGG "suggests the possibility fo gluten sensitive enteropathies." "Other gastrointestinal disorders may induce circulating gliadin antibodies." I did not come back positive on all of my bloodwork, but I did have more tests done and more were positive. If this were MY body, and the biopsy was not an option, I would go on a diet that eliminated gluten and all allergens for 6 months. Then I might add back suspected trigger foods one at a time. Counseling during this time would be important for both possible ED and coping with the social/emotional issues of a medical diet.

From my experience, I was always just inside the normal BMI, but often forgot or didn't feel like eating. I just didn't have an appetite as a teen. When food was put in front of me or I was reminded to eat, I ate heartily. From 14-25, I was often jokingly (and maybe not so jokingly) accused of having anorexia. As an adult, when I was in a bad stage of undiagnosed Celiac, I almost quit eating for a month. I would force a 1/2 slice of bread down some days so I could take my vitamins. Then end up in excruciating pain. Nuts seemed to be the only thing I could tolerate and that made no sense at the time. I honestly didn't eat more than a handful of nuts or 1/2 a slice of bread or a small glass of juice for the whole month. I wasn't hungry and was terrified to eat.

Undiagnosed Celiac and food allergies may be causing behaviors that look like ED, or they may have set the stage for a true ED. Either way, a diet high in fruits, veggies, meat, and safe grains will be a healthy way for her to eat for a few months and she will probably feel better for it. Get the other blood tests done, but the positive IGG is enough to start a gluten-free diet.

Just a thought, could her diet in the months before testing have been restricted in the amount of gluten she was consuming? We are advised to eat the equivilant of 4 slices of bread daily for 2 months to have a positive blood test and biopsy. I wonder if her ED made the blood tests a false negative?

Good job Mom for taking this all seriously. I wish every child out there had a mom like you.

SGWHISKERS

[desccc]

SGWhiskers wrote:

"Just a thought, could her diet in the months before testing have been restricted in the amount of gluten she was consuming? We are advised to eat the equivilant of 4 slices of bread daily for 2 months to have a positive blood test and biopsy. I wonder if her ED made the blood tests a false negative?"

SHe has been eating at least 3 servings of bread daily, some days 4 slices total. I don't think it would have affected it with her test result being >100 for the IgG Gliadian antibody, would it?

Also, she had moderate to severe eczema as an infant and early toddler. SHe has had the itchy front of the knees for years, and I have noticed it more when she eats spagetti noodles or noodles, the next day she will scratch the front of her knees. She does not have eczema anywhere and the front of knees is not an eczema rash It is not the DH that is in the images on the internet, much less , if it is DH, butshe has had the little tiny red dots on her knees. Last night she was scratching at them and it's a very light colored slighly raised bump. My 9 yr old son does the scratching of the knees and lower thighs as well.

She does have tiny tiny bumps on the back of her elbows but never itchy. Fronts of her knees is only itchy spot.

[DarkIvy]

SGWhiskers wrote:

"Just a thought, could her diet in the months before testing have been restricted in the amount of gluten she was consuming? We are advised to eat the equivilant of 4 slices of bread daily for 2 months to have a positive blood test and biopsy. I wonder if her ED made the blood tests a false negative?"

SHe has been eating at least 3 servings of bread daily, some days 4 slices total. I don't think it would have affected it with her test result being >100 for the IgG Gliadian antibody, would it?

Also, she had moderate to severe eczema as an infant and early toddler. SHe has had the itchy front of the knees for years, and I have noticed it more when she eats spagetti noodles or noodles, the next day she will scratch the front of her knees. She does not have eczema anywhere and the front of knees is not an eczema rash It is not the DH that is in the images on the internet, much less , if it is DH, butshe has had the little tiny red dots on her knees. Last night she was scratching at them and it's a very light colored slighly raised bump. My 9 yr old son does the scratching of the knees and lower thighs as well.

She does have tiny tiny bumps on the back of her elbows but never itchy. Fronts of her knees is only itchy spot.

Funny you mention the itchy knees and eczema. My eczema was horrible before going gluten free, and I had started to get the worst itchiness on the front of my knees. It was not a normal eczema rash, just like you described. It was painfully itchy, though. The gluten-free diet has really helped me control both.