Please Help With Me Understand My Daughters Results...

[vicp]

Hi,

First of all my daughter is a type 1 diabetic. She usually has no problems with her stomach or anything like that. Once in a while she will complain of stomach pains like all 13 years olds but not often at all. We had taken her to get her school plysical and they did some urine tests and blood work since she is a diabetic. Her sugars were out of control a bit in her urine, hence the need for bloodwork. We received a call from the lab that she may have Celiac Disease, which was really shocking to us since we have never heard of this disease. Following are her results:

AGA (IGC) Positive 15.6ml (normal range is <10.0ml)

AGA IGA Negative 4.0ml (normal range is <5.0ml)

TTG IGA Negative 0.7ml (normal range is <4.0ml)

EMA IGA Negative

Total IGA 315 mg/dl (normal range is 41 to 395ml)

The summary Interpretation says:

Results may support a diagnosis of celiac disease, but are not specific.

I would appreciate anyone who has some advice as to what this really means. My wife and I are really concerned about this and have an appointment with a pediatric GI tommorrow....but we would like to get some educated opinions before this as every hour is tormenting us....

All help and insight you can give us will be helpful and we want to thank everyone who responds...

[Guest nini]

first of all, welcome to the board, second, don't panic, a Celiac dx is not the end of the world. Third, all Diabetics should be routinely screened for Celiac because of the high prevalance between the two conditions.

With one elevated number, it shows that at the very least your daughter is gluten intolerant and would benefit from a gluten free diet. If she is referred to a GI dr. they will want to do a biopsy for a dx, but keep in mind the biopsies are not as accurate as the medical community would like us to believe. They miss a large percentage of Celiac/Gluten Intolerant individuals because of either taking too few samples, flawed interpretation in the lab, or person is in early stages of disease and not exhibiting full blown flattened villi yet... So, regardless of what the Dr.s say, at this point consider just putting her on a gluten free diet. With the elevated test results you may be able to get her Dr.s to agree to trying the diet to see if it can help get her other numbers (sugars and stuff) back in line...

I suggest reading Dangerous Grains, and Gluten Free for Dummies

[vicp]

first of all, welcome to the board, second, don't panic, a Celiac dx is not the end of the world. Third, all Diabetics should be routinely screened for Celiac because of the high prevalance between the two conditions.

With one elevated number, it shows that at the very least your daughter is gluten intolerant and would benefit from a gluten free diet. If she is referred to a GI dr. they will want to do a biopsy for a dx, but keep in mind the biopsies are not as accurate as the medical community would like us to believe. They miss a large percentage of Celiac/Gluten Intolerant individuals because of either taking too few samples, flawed interpretation in the lab, or person is in early stages of disease and not exhibiting full blown flattened villi yet... So, regardless of what the Dr.s say, at this point consider just putting her on a gluten free diet. With the elevated test results you may be able to get her Dr.s to agree to trying the diet to see if it can help get her other numbers (sugars and stuff) back in line...

I suggest reading Dangerous Grains, and Gluten Free for Dummies

Thanks for the info...but as far as her sugars being high...she has been eating sweets and lying to us about her blood sugar numbers for the past 2 months. That is the reason her sugars were out of control. Fortunately, they didn't find any ketones in her urine. I hope this helps clear things up a bit. How can I put her on a stricy gluten free diet without any symptoms?

[AndreaB]

My whole family (except infant son) had stool tests done by enterolab. We didn't have any symptoms of gluten intolerance. My infant son broke out in eczema just after he was two months old. I underwent allergy testing and eliminated things that I was high or moderate on which included what is listed in my signature below. The enterolab showed that myself, my daughter and my oldest son all have gluten intolerance and my husband and I have soy intolerance. Just because there are no symptoms doesn't mean that the damage isn't starting to be done. My oldest son has mild malabsorption which we would have not know about until it got really bad. See what your doctor says but going gluten free may be what is best for her and there may be slight symptoms that you aren't noticing that will be more apparent off of gluten.

Good luck and welcome to the forum.

[eKatherine]

First of all my daughter is a type 1 diabetic. She usually has no problems with her stomach or anything like that. Once in a while she will complain of stomach pains like all 13 years olds but not often at all.

I don't think that there's anything about being a child which predisposes one to complain about stomach pain. This is probably a symptom you might have thought about if you hadn't thought it was normal. Did you have stomach pains at that age? Maybe you should get blood tests yourself.

[Rachel--24]

I hope this helps clear things up a bit. How can I put her on a stricy gluten free diet without any symptoms?

Gluten Intolerance is nothing to mess around with it. By the time I had symptoms alot of damage had been done and I'm still not recovered nearly 4 years later. For 30 years I was symptom free and ate whatever I wanted. Now there are hardly any foods I can tolerate. Do you really want to wait until she is presenting with symptoms?? The majority of undiagnosed Celiacs have no symptoms or mild symptoms which can easily be brushed off as "normal". Down the road something may occur to add more stress on the immune system....a virus, surgery, stress, etc....this can set off the symptoms of the underlying gluten intolerance. By then there will be enough damage and stress to the immune system that recovery wont be as swift.

Please dont wait for symptoms to appear...you are very lucky to of had these tests and to be aware of the problem before it becomes full blown. As someone previously stated, autoimmune diseases and Celiac are very common together. Particulary Diabetes and thyroid disease. I was diagnosed with Graves Disease a few years before I got sick from the gluten intolerance. It took more than 2 years to even find out about gluten and over a year now trying to heal. I was off work on disability the first 2 years....it was no picnic.

I wish I could have known what was coming when I was symptom free and eating gluten everyday....I would have gladly went on the diet to prevent what I've had to go through these past few years.

[Guest nini]

many people who test positive for Celiac (because of being screened because a first degree relative has it) don't have any obvious symptoms. The blood tests you hold in your hands are enough to see that she has a gluten intolerance despite not having obvious symptoms. Re: eating candy and sugars and stuff, she is going to have to take responsibility for her health and what better way to start then by being gluten free as well.

Stomach aches are not normal for a child... my daughter NEVER gets stomach aches unless she is exposed to gluten.

As far as putting her on the diet and how can you do it? You just do. I wish that someone had picked up on the early signs of this when I was a child and I didn't have to wait for 34 years until there was so much damage that I almost died from it. The diet is not hard, it can be very easy once you get used to it, and she can still eat "normal" foods...

The lab was wise to point you in this direction, a lot of medical Dr.s are reluctant to dx Celiac based only on one elevated result, but one elevated result is significant. Many of us didn't even have any elevated blood tests (like my daughter) but are obviously gluten intolerant. The link between diabetes and celiac is nothing to be messed with. She is obviously predisposed to it, and if she doesn't have full blown Celiac now, if she continues to consume gluten, SHE WILL.

[ravenwoodglass]

First off I am delighted to here that your DD was tested as a routine test. I am dancing around the chair right now. You are so lucky they found this now. As to the symptom issue there may be things that you think are 'normal' that really are not. In addition to the tummy aches, and no not everyone has them, you may find that she becomes less 'moody' gluten-free, she may have an easier time with PMS, if she has acne that may go away. Does she get a lot of headaches, sometimes have trouble concentateing on her schoolwork? If she is clumsy that could be the early stages of gluten ataxia, my families favorite saying for me was "there's a reason we didn't name you Grace " I bumped into walls, tripped and fell constantly as a child and adult, well until they discovered the gluten intolerance. The spectrum of symptoms from gluten intolerance are myriad and different for all in intesity. The gluten free diet is a challenge at first but it will make such a difference in the quality of her teen years. You may also find, as many diabetics do that she will have an easier time controlling her blood sugar gluten-free. I was recently diagnosed as a diabetic, for me that is a direct result of the years of damage gluten did to my pancreas. Welcome to the board and make sure that she also makes use of it often, the teen section, coping and related disorders in particular may be quite helpful for her.

[Rachel--24]

First off I am delighted to here that your DD was tested as a routine test. I am dancing around the chair right now. You are so lucky they found this now.

Thats exactly how I felt. She is so fortunate to have doctors who tested her in the first place and then to acknowledge that there is a problem....I cant say it enough....very lucky! Some doctors would wrongly dismiss the one positive test. She has good doctors.

I never had tummy aches growing up....matter of fact it was rare for me to even catch a cold. I had no warning signs other than the thyroid disease. I had a job promotion and alot of stress in my life all at once.....next thing you know I'm in a downward spiral with my health...just like that. I'd dropped 25 lbs. and thought I was dying before I ever even heard of gluten.

[vicp]

Thats exactly how I felt. She is so fortunate to have doctors who tested her in the first place and then to acknowledge that there is a problem....I cant say it enough....very lucky! Some doctors would wrongly dismiss the one positive test. She has good doctors.

I never had tummy aches growing up....matter of fact it was rare for me to even catch a cold. I had no warning signs other than the thyroid disease. I had a job promotion and alot of stress in my life all at once.....next thing you know I'm in a downward spiral with my health...just like that. I'd dropped 25 lbs. and thought I was dying before I ever even heard of gluten.

Thanks for everyone's responses....I really appreciate all the advice and support so please don't get me wrong when I make my opinions...Here is the latest....and I would appreciate everyones opinion....

1) Noone in my family or my wifes family has this diesase as far back as we can remember.

2) I understand that tummy aches aren't normal...but when anyone overeats, they may have stomach cramps.

3) My daughter has not had her period yet and has never complained about headaches.

4) she is focused all the time and never has lapses of dizziness, cloudiness in thinking, etc.

5) I have read most of the symptoms from all the people on this board, and to be honest, she doesn't have any of those symptoms.

6) Her GI doc spoke to me last night and told me that she does NOT have Celiac. He did say that a high IGG number is nothing to worry about and the main number to be concerned with is the IGA. Matter of fact, he told me to cancel my appointment with my daughter to come see him unless I was really uncomfortable...

This is a really confusing subject...and I'm trying to get myself educated, without panicking and worrying. But i must say at the same time I am trying to have an open mind and think that it may be possible that we are looking for problems that may not exist...

[AndreaB]

Vic,

Her stomach aches could be from the sugar she was ingesting. I know if I have something that has too much sugar my stomach complains. With her number that was over ten was that IgA or IgG. IgG is the long term allergic response to a food. IgA from what I understand measures intolerances. If you can swing the money and what a basic test to see about gluten intolerance before damage is severe, check out www.enterolab.com. As I said, no one in my family has had symptoms of gluten intolerance. No one is active celiac. I have a gluten sensitive gene and a celiac gene. I got one each from my parents who have no obvious symtpoms. My husband has two celiac genes but does not have an active intolerance. No one in my husbands family has obvious active intolerance even though he has two celiac genes. My oldest son has two celiac genes and has mild malabsorption and active intolerance. He has had no symptoms. My daughter has one of each like me and also has active intolerance with no symptoms. We have gone gluten free within the last month and after about 1 week my daughter was given a gluten cookie from grandma and developed tummy problems and diarrhea. Just because the genes are present does not mean that a problem will develop...it means it could. I highly recommend enterolab since they catch intolerance before it does damage and they also test for genes. By the time the blood IgA levels are elevated there is already some damage. The stool test by enterolab gets the IgA reading from the intestines through the stool. My family would have been none the wiser if my infant son had not reacted to the soy and gluten he was getting through me. Who knows what health problems we may have would up with. By her blood numbers it doesn't show active intolerance (IgA) but she does have an allergic response to something (IgG). Has she had a full panel of allergy tests done. I was both allergice to gluten and intolerant to it. Just another thing to think about. Please keep us posted on your thoughts and any further questions.

To go through your points one by one and repeating myself on some of them.

1. No one in my family has had the disease either that we know of.

2. Good point. Tummy aches can be from too much of something or a big meal.

3. Yeah that she hasn't started her cycle yet and doesn't have problems with headaches.

4. We didn't have any of these either but 3 of us are still intolerant to gluten.

5. We didn't have any symptoms. From what I understand alot of people on this board have a lot of damage done since the disease wasn't caught early enough.

6. IgG is an allergic response and IgA is an intolerant response. Her blood is not showing an intolerance to gluten but what is she allergic too since her IgG is elevated. My allergy results is what prompted the testing by enterolab which I had done for the whole family and found the active intolerance for 3 out of 4 of us. I am thankful we caught this early and can avoid extensive damage to the intestines that many have suffered here.

[Guest nini]

no one else in my family besides me and my daughter have been dx'ed with this... doesn't mean a thing...

no symptoms? don't have to be having symptoms to have damage.

Dr. says opposite of what the MAJORITY of those of us that LIVE with this have come to learn as truth... Dr.'s are sadly misinformed and operating on outdated information and testing methodology when it comes to this.

It is highly unlikely to even be told someone MIGHT have this, if they don't, the opposite is usually true, too many of us have had to go a long time before our symptoms got progressively worse and we eventually got so sick someone FINALLY puts all the clues together.

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