Blood Test Results And Another Question!

[Luvbeingamommy]

I managed to get ahold of some of my records, to maybe help get a more clear answer. I pretty much can't ask any questions to my GI until i see him mid Feb. I tried to ask the nurse and she told me I had to wait.

With the scope I had....this was said.

Final Diagnosis:

A. Small bowel random biopsies

1. Small bowel mucosa without specific diagnostic alteration

B.Gastric Antrum/body biopsy

1. Minimal chronic gastritis, nonspecific

2.No helicobacter organisms idenified in immunostained sections.

Blood tests

Gliadin IgG Antiboties- 12M

>10 is positive

Gliadin IgA Antiboties- 9M

>10 is positive

TTG IgA was 2

again >10 positive

I've decided that I am so tired of feeling terrible, my symptoms only started after I had my 3rd child in August/Sept. I've felt horrible since then and had a stroke for an unkown reason. I've had TONS of blood tests to check for lupus, connective tissue...EVERYTHING. I asked them to this test, but this the ONLY thing that has come up. Besides when check my panels I've had a few weird readings like high bilirubin....just today they told me I had high liver enzymes and my electorlytes were off and had protein. They said they weren't worried just repeat the test in a month.

So my take on all of this is I had a negative scope, but I haven't symptoms that long so maybe there just wasn't enough damage?? I just started day one of no gluten, I was holding on hoping to find an "official" diagnosis, but who knows if that will happen and I am tired of feeling so terrible.

Fussy baby or I would write a little more.....am I crazy for thinking this?? I was thinking I could eat gluten and eventually my numbers might go up and might show up, but do I want to do that??

I am considering enterolab, would that be helpful with what information I've been given??

[ravenwoodglass]

Did they give you the reference ranges for the blood tests? If so it would be helpful if you post them here.

Since you have had the biopsy you don't have to wait for the doctor to give you the results to start the diet.

As far as Enterolab is concerned I would consider it. They check for antibodies in the stool which seems to be a bit more sensitive than the blood tests.

[Luvbeingamommy]

  On 1/29/2010 at 10:55 AM, ravenwoodglass said:

Did they give you the reference ranges for the blood tests? If so it would be helpful if you post them here.

Since you have had the biopsy you don't have to wait for the doctor to give you the results to start the diet.

As far as Enterolab is concerned I would consider it. They check for antibodies in the stool which seems to be a bit more sensitive than the blood tests.

Okay added ranges, didn't realize they were different. I know the doctor wrote I had positive gliadian IgA and IgG but negative TTG.

I guess my theory was I didn't want to make a life changing choice if I don't have celiac, but like I said doesn't seem to be anything else? My doctor said my blood results are "not reccomended for dx". Again I thought well if my body is making any antibiodies that that can't be real good. I am just confused.....

ETA I have two boys 4 and 2, both have had GI issues since they were little and nursing. My 2 year old has chronic loose stools. We just did the blood test with him a few days ago. I really want to probably do the enterolab on him for sure. My 4 year old isn't as bad, but he has always had chronic constipation and we still struggle with that often. I am not just not sure I can afford 3 full tests, although I am praying our tax return is good and we can use that.

[Annie-Claude]

Your test result say that you are sensitive to gluten but you don't seem to have damage to your intestinal mucosa,so no celiac disease for the moment.You should respond very well to the gluten free diet, you just have to stick to it. It is not easy especially at the beginning.Enterolab if you do the genetic testing, will tell if you have the genes for celiac or only a sensibility to gluten. Either way , the answer is a gluten-free diet.My daugther was very sick and she was neg in her blood test but positive in the stool test even one year after a gluten free diet.She responded to the diet within a week. It was very evident that gluten-free diet was the solution.She have the genes for gluten sensitivity but not those for celiac disease.Even if a life long of gluten-free diet is quite something for an 18 year old,I am sure she would have develop some kind of autoimmune disease and I am very happy that she is now full of energy and enjoying life.Gluten sensitivity can make a child very cranky and irritable so if their are sensitive to gluten your life will be much easier if they are on the diet.Hope this is helping.

Good luck

  On 1/29/2010 at 3:08 PM, Meagan Mandl Booke said:

Okay added ranges, didn't realize they were different. I know the doctor wrote I had positive gliadian IgA and IgG but negative TTG.

I guess my theory was I didn't want to make a life changing choice if I don't have celiac, but like I said doesn't seem to be anything else? My doctor said my blood results are "not reccomended for dx". Again I thought well if my body is making any antibiodies that that can't be real good. I am just confused.....

ETA I have two boys 4 and 2, both have had GI issues since they were little and nursing. My 2 year old has chronic loose stools. We just did the blood test with him a few days ago. I really want to probably do the enterolab on him for sure. My 4 year old isn't as bad, but he has always had chronic constipation and we still struggle with that often. I am not just not sure I can afford 3 full tests, although I am praying our tax return is good and we can use that.

[Luvbeingamommy]

  On 1/29/2010 at 6:26 PM, Annie-Claude said:

Your test result say that you are sensitive to gluten but you don't seem to have damage to your intestinal mucosa,so no celiac disease for the moment.You should respond very well to the gluten free diet, you just have to stick to it. It is not easy especially at the beginning.Enterolab if you do the genetic testing, will tell if you have the genes for celiac or only a sensibility to gluten. Either way , the answer is a gluten-free diet.My daugther was very sick and she was neg in her blood test but positive in the stool test even one year after a gluten free diet.She responded to the diet within a week. It was very evident that gluten-free diet was the solution.She have the genes for gluten sensitivity but not those for celiac disease.Even if a life long of gluten-free diet is quite something for an 18 year old,I am sure she would have develop some kind of autoimmune disease and I am very happy that she is now full of energy and enjoying life.Gluten sensitivity can make a child very cranky and irritable so if their are sensitive to gluten your life will be much easier if they are on the diet.Hope this is helping.

Good luck

Okay that is helpful, it's hard to just have a yes or no answer sometimes??

I guess I could do the gene test and if I have the gene figure it will probably turn into it eventually. Like I had only had symptoms for 4 months and then had the scope. However, had I not had a stroke, it probably might have been longer before I pushed testing, which might have been better to show more. Although I had a stroke, which I think was linked to my terrible nausea/stomach issues (2 months after it started). Of course we will never know why I had the stroke, but I really think it was all linked. I am very healthy- blood pressure, weight, heart, nothing would have put me at a risk for a stroke. Never took birth control, had NO predispositions to a stroke. I guess I just need to quit looking for an answer to all my troubles probably. If only life could be that simple....

[ravenwoodglass]

  On 1/29/2010 at 8:06 PM, Luvbeingamommy said:

Okay that is helpful, it's hard to just have a yes or no answer sometimes??

I guess I could do the gene test and if I have the gene figure it will probably turn into it eventually. Like I had only had symptoms for 4 months and then had the scope. However, had I not had a stroke, it probably might have been longer before I pushed testing, which might have been better to show more. Although I had a stroke, which I think was linked to my terrible nausea/stomach issues (2 months after it started). Of course we will never know why I had the stroke, but I really think it was all linked. I am very healthy- blood pressure, weight, heart, nothing would have put me at a risk for a stroke. Never took birth control, had NO predispositions to a stroke. I guess I just need to quit looking for an answer to all my troubles probably. If only life could be that simple....

If you had positive blood work you likely have the answer. False negatives are not uncommon in endos. You have 22 ft of small intestine and the damage can be patchy or missed. I should note that the rate of false negatives for children in blood and biopsy is even higher than for adults. After you are done testing I would strongly encourage you to put both yourself and your little ones on a good strict trial of the diet. Although loose stools like one DS has is typical many of us also have had issues with constipation as the other one does. Be sure also to keep in mind that if gene tests show GI genes rather than Celiac associated genes that does not mean one needs to be less strict on the diet. The effects of what many call Gluten Intolerance rather than Celiac can be just as life altering. Some, like myself consider them to be one and the same.

[nora-n]

High liver numbers are typical for celiac.

[Luvbeingamommy]

Is dizziness a common symptom??

[Takala]

I don't know if it is really common, but it definitely is a symptom for some of us. Some of the neurological symptoms can imitate MS, but few doctors in the US recognize this.