If I Knew Then, What I Know Now!

[little d]

Hello all

This is long, so kick back, and hope that ya'll can give me your ideas.

If I knew then, what I know now I would not have gotten teste before starting the diet. Yesterday I went and got my lab results from my GI office, that I no longer go to. It has been almost a year for these labs, 3 dates 6/22/06, 8/21/06 and 9/08/06 I think that I understand these results, even though they say negative.

06/22/06 At this point I had been strickly Gluten free for 3months and the GI told me that it would not make a difference. Everything is in the normal, and seems to be very close to either end.

Celiac panel

Endomysial Antibody IgA Negative

t-Transglutaminase (tTG) IgA 0

Immunoglobulin A, Qn, Serum 284

Metabolic Panel (14)

Glucose 91, BUN 9, Creatinine 0.9, Sodium 140, Potassium 3.9, Chloride 103, Carbon Dioxide 25, Calcium 9.8, Protein Total 7.5, Albumin 4.3, Globulin 3.2, A/G Ratio 1.3, Bili 0.5,

Alkaline Phosphatase 63, AST (SGOT) 14, ALT (SGPT) 12

Sedimentation Rate-Westergren 15

08/21/06 This is my Electrolyte Panel, and CBC before my Endo and colonscope and I had been gluten again at this point. Again everything is normal

E Panel

Sodium 138, Potassium 3.9, Chloride 105, Carbon Dioxide 23

CBC

WBC 5.0, RBC 4.31 Hemoglobin 13.4, Hematocrit 39.1, MCV 90.6, MCH 31.2, MCHC 34.4

RDW 13.3, Platelet count 332, Absolute Neutrophils 2920...Lymphocytes 1580...Monocytes 385...

Eosinophils 95...Basophils 20, Neutrophils 58.4, Lymphocytes 31.6, Monocytes 7.7,

Eosinophils 1.9, Basophils 0.4

09/08/06 At this point when I was told that my scopes where negative I started eating all regular food, gained all weight back that was lost while on diet, and got all my symptoms back in full force.

Antineutrophil Cytoplasmic Ab

Cytoplasmic (C-ANCA) <1:20 Does not give what would be positive

Perunuclear (P-ANCA) <1:20

Atypical pANCA >1:20

Gliadin IgG/IgA Ab Prof, EIA

Antigliadin Abs, IgA 1

> are these the same as from the top or are these totoally differnt?

Antigliadin Abs, IgG 2

Saccharomyces cerevisiae Panel

Saccharomyces cervisiae, IgG

<20.0 negative

Saccharomyces cervisiae, IgG > what does equivocal 20.1 - 24.9 mean ??

<20.0 negative

Thank you to all for all the input of what ya'll think, Now I wish I had done testing before I started eating Gluten Free.

Donna

[sparkles]

I am confused. If symptoms go away when you are gluten-free, why do you need tests and doctors to tell you that you have a problem with wheat or gluten? Would it be easier to stay on a gluten-free diet if you were given an actual diagnosis of celiac disease or gluten intolerance? In my humble opinion, we are the ones who have control over our bodies. We make decisions every day based on what we think and what we feel. Having a doctor tell me that I have no problem with gluten, when I have the big D, stomach cramps, gas, bloating, etc, when I eat it tells me that I do have a problem with gluten and no test in the world is going to convince me otherwise. I don't mean to be unsympathetic but we have problems based on eating gluten and if not eating gluten makes those problems (or most of them) disappear, it seems like a no brainer to me to just stop eating gluten. I know a young man who is 23 with an abdominal aorta anuerism. He is living with a time bomb inside him and there is nothing that he can do to make that time bomb go away. He has to hope that the docs who are treating him are able to make appropriate decisions. Whereas, celiacs or people who have gluten intolerance, have total control over their treatment.... stop eating gluten! There is nothing invasive about the "cure". I know that I have permanent problems caused from gluten.... neuropathy, for one.... and I had colon cancer linked I am sure to the celiac disease but I do have control over my diet. No test in the world would convince me that I can eat gluten again. I know how I feel. The docs don't and the tests certainly do not.

You might consider ignoring the tests and doing what your body tells you is right. A gluten free diet is not going to hurt you. It is a healthy diet.

[mn farm gal]

I am another one that would never go by test results myself. I have doctored for years before even hearing about the disease and my test said neg, but I was gluten light for a year. Not for Celiac but because I was trying to loose some weight so I wasn't eating pasta, bread and baked goods. I know nothing about the test but I am sure someone will.

[little d]

sparkles

Yes you are right it would be easier for me with a diagnosis from a doctor to stay Gluten free and I do feel better when i am eating better for myself, but I am slowly coming to the reality that I not going to get what I am after. My husband is the type of person who will listen to what doctors say and will do what they say, but he is also that way about work issues as well, follow the rules and yes some of that mentallity has rubbed off on me. My mom did not take me to doctors when I was little and I only remember getting shots going to the community health clinic, We did not have a lot of money back then. So if I did go the doctor it was when I was sick with broncitis or the pnomonia. It was only until I got older that I would go to the doctor myself when I had a job in my early 20's that had insurance, that is when I got diagnosed with Karotosis polaris I know that is spelled wrong. I was very small (I'm still small)in stature when I was little maybe to the point of failure to thrive, I don't know but my mom who I love very much was very backwoods back then. She was dirt poor when she was growing up and didn't think that it was too important. But now she takes good care of her health because of us kids who hound her about her health. I can admite that I am learning about celiac disease and understanding more and trying to understand that getting a diagnoses is not important it is my body telling me what it needs not a doctor telling me. If I wasn't for me braking my foot March 20 when my GI called to see if I wanted to go to another GI I may have said yes, but I have to concentrate on getting my foot better so I'm not going to worry about that anymore, If I need any blood work done I'll just go to my Family doctor to check my levels every once in a while, which it has been a year since I last had any blood test done.

Donna

[tiredofdoctors]

Donna -- what were the values that were considered Within Normal Limits for the Westergren Sedimentation Rate? The fifteen caught my eye.

I'm a "neurological celiac". The only damage which has been done is to my cerebellum. All my antibodies were normal with the exception of the antigliadin antibodies, which were high. Those are what were damaging my cerebellum. My biopsy was negative, as well.

What is interesting, though, is that since I have been gluten-free, my "irritable bowel syndrome", or "ulcerative colitis", and all the other things that I was diagnosed with are gone. I haven't had one bout of diarrhea since being gluten-free, almost two years now.

I think if you FEEL better being gluten-free, to heck with the lab values. If your symptoms are decreasing, your energy is increasing and life is better, STAY gluten-free. It can't hurt, and if you're a neurological celiac, it will CERTAINLY prevent some pretty terrible stuff.

[little d]

tiredofdoctors

WOW! I had no idea that the Sedimentation could be a problem nuerologically, I belieave the normal range was 0 - 20 or 25 I can't remember I don't have the results in front of me because I'm at work. What are the neurological problems or symptoms of what you are talking about, I asked someone and now I can't find the post anywhere. But I felt that the Sedimentation rate was a little high myself. Had no idea that could be a factor in anything, I don't know much about chemistry, briefly touched it in Medical assisting school, did one on myself but had to leave for the day before I could see the results.

Thanks for responding

Donna

[jacob'smom]

tiredofdoctors

WOW! I had no idea that the Sedimentation could be a problem nuerologically, I belieave the normal range was 0 - 20 or 25 I can't remember I don't have the results in front of me because I'm at work. What are the neurological problems or symptoms of what you are talking about, I asked someone and now I can't find the post anywhere. But I felt that the Sedimentation rate was a little high myself. Had no idea that could be a factor in anything, I don't know much about chemistry, briefly touched it in Medical assisting school, did one on myself but had to leave for the day before I could see the results.

Thanks for responding

Donna

[jacob'smom]

Have you ever heard of a genetic test for celiac disease? When my son was having trouble with diagnosis, we had a genetic test which confirmed that he carried the genetic component which could cause celiac disease. His case was then confirmed by the fourth or fifth biposy he had had. I guess we finally found the right doctor. I pursued testing and diagnosis because he is still in school and I needed backing to require the school to modify for the diet and to allow our modifications. I also wanted him to never have questions about why we were doing what we were doing for him and to try to avoid the teenage rebellion that I know is coming...

Hello all

This is long, so kick back, and hope that ya'll can give me your ideas.

If I knew then, what I know now I would not have gotten teste before starting the diet. Yesterday I went and got my lab results from my GI office, that I no longer go to. It has been almost a year for these labs, 3 dates 6/22/06, 8/21/06 and 9/08/06 I think that I understand these results, even though they say negative.

06/22/06 At this point I had been strickly Gluten free for 3months and the GI told me that it would not make a difference. Everything is in the normal, and seems to be very close to either end.

Celiac panel

Endomysial Antibody IgA Negative

t-Transglutaminase (tTG) IgA 0

Immunoglobulin A, Qn, Serum 284

Metabolic Panel (14)

Glucose 91, BUN 9, Creatinine 0.9, Sodium 140, Potassium 3.9, Chloride 103, Carbon Dioxide 25, Calcium 9.8, Protein Total 7.5, Albumin 4.3, Globulin 3.2, A/G Ratio 1.3, Bili 0.5,

Alkaline Phosphatase 63, AST (SGOT) 14, ALT (SGPT) 12

Sedimentation Rate-Westergren 15

08/21/06 This is my Electrolyte Panel, and CBC before my Endo and colonscope and I had been gluten again at this point. Again everything is normal

E Panel

Sodium 138, Potassium 3.9, Chloride 105, Carbon Dioxide 23

CBC

WBC 5.0, RBC 4.31 Hemoglobin 13.4, Hematocrit 39.1, MCV 90.6, MCH 31.2, MCHC 34.4

RDW 13.3, Platelet count 332, Absolute Neutrophils 2920...Lymphocytes 1580...Monocytes 385...

Eosinophils 95...Basophils 20, Neutrophils 58.4, Lymphocytes 31.6, Monocytes 7.7,

Eosinophils 1.9, Basophils 0.4

09/08/06 At this point when I was told that my scopes where negative I started eating all regular food, gained all weight back that was lost while on diet, and got all my symptoms back in full force.

Antineutrophil Cytoplasmic Ab

Cytoplasmic (C-ANCA) <1:20 Does not give what would be positive

Perunuclear (P-ANCA) <1:20

Atypical pANCA >1:20

Gliadin IgG/IgA Ab Prof, EIA

Antigliadin Abs, IgA 1

> are these the same as from the top or are these totoally differnt?

Antigliadin Abs, IgG 2

Saccharomyces cerevisiae Panel

Saccharomyces cervisiae, IgG

<20.0 negative

Saccharomyces cervisiae, IgG > what does equivocal 20.1 - 24.9 mean ??

<20.0 negative

Thank you to all for all the input of what ya'll think, Now I wish I had done testing before I started eating Gluten Free.

Donna

[little d]

The sedimentation rate values are for 0-20 I looked it up. Is 15 a little too high

Donna