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NancyL

Holy Smokes Batman!

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Ok, I know this is a small achievement but it feels HUGE to me. Only 4 days gluten free and for the first morning in a year and a half (maybe 2 years) and I didn't have "D" this morning! I know it's tmi, but it's not like I can make this my Facebook status update and I HAD to tell someone! LOL

I am untested for gluten allergies or Celiac so I have a call into my Dr. to see if she thinks I should do the Celiac tests or if I should just continue going Gluten Free to see if this is my ticket to gastro freedom. Since I'm only 4 days gluten free, I could always revert back to gluten this early on if she thinks I should be tested for Celiac.

UPDATE: I jumped to celebration too soon. :( My "D" did not leave me today. It was just delayed by a few hours. I should've known better. I had the stomach cramping and all the signs that this mornings trips to the bathroom would eventually be the return of the big "D". I've spent 4 days pouring through all details and the trials and tribulations that you all have been through of trying to recover and I should have known that success would not come in as few as 4 days. Disappointed? Yes. Discouraged? No. I'm still going to give it my all.

Edited by NancyL

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Congrats! That IS something to celebrate!

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Ok, I know this is a small achievement but it feels HUGE to me. Only 4 days gluten free and for the first morning in a year and a half (maybe 2 years) and I didn't have "D" this morning! I know it's tmi, but it's not like I can make this my Facebook status update and I HAD to tell someone! LOL

I am untested for gluten allergies or Celiac so I have a call into my Dr. to see if she thinks I should do the Celiac tests or if I should just continue going Gluten Free to see if this is my ticket to gastro freedom. Since I'm only 4 days gluten free, I could always revert back to gluten this early on if she thinks I should be tested for Celiac.

Congrats! I think that would be a great FB status! Poop is always a popular topic on this site!

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That's a really good sign. If you are going to get tested get back on gluten today. If you can stick with the diet without a doctors diagnosis then just stay off it and heal.

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I still have a lot of abdominal cramping/bloating and discomfort so I haven't stumbled onto the cure all yet (well just haven't given it enough time yet). My plan was sticking with Gluten Free for at least the next 3 months.

I just got off the phone with my Dr's nurse. He's going to talk to her. He (the nurse) gave me the ok on Friday to try gluten free and did NOT ask the Dr. first. GRRRRRR I asked him then to dig through my records and determine what I've been tested for. He was able to tell me that my biopsy results from last week were in. I was negative for colon cancer (from the polyp) and the large intestine biopsies showed negative for Inflammatory Bowel Disease. I didn't even know until today what they were checking for.

I made the decision after joining this board to not keep my head in the sand but to be more involved in finding out what's wrong with me and what I'm being tested for. I asked the nurse specifically about Celiac Blood Panel and he's going to check to see if I've been tested and if not he will ask my Dr. what she thinks. If she wants me tested, I'm still in this gluten free thing early enough that I don't mind going back off to help with an accurate diagnosis. BUT I will not be willing to go back to gluten in a few weeks for testing after having invested that much time and effort. They need to decide now if they want to test me or not.

In the meantime, no "D" this morning was so uplifting that it's made me more determined than ever to keep going with this Gluten Free diet to see if my other symptoms will slowly fall by the wayside as well. I have "HOPE" now and I have never had that before.

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Welcome to the gluten free world :) Many of us know we have a problem and have had to float around in the purgatory of "non-diagnosed" (whatever-your-current-doctor-thinks-it-might-be), and then go gluten free based on a hunch... whether it's diagnosed or not, it's great to feel better, and good for you for not losing heart!!

I hope you continue to feel better.

Has anyone mentioned to you that many with gluten intolerance also have problems eating dairy for awhile after going gluten free, until some of the damage heals? If you keep having stomach issues you might try losing dairy, too, just to see if that helps.

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Updated top.... I rejoiced too soon.

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Updated top.... I rejoiced too soon.

Do be sure to protect yourself from all the many sources of CC that we often don't think of in the beginning. Things like needing new pans if the others are scratched, new colander, toaster and cutting board. Not baking with flour for others. A check of all meds and supplements and be aware that barley and wheat grass are not safe even if the label says gluten free.

It does take some time to heal and hopefully you will hear back soon as to whether or not you have had the celiac panels yet. If you are going to have testing do go back on gluten as you want the best chance you can get of accurate tests.

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It does take some time to heal and hopefully you will hear back soon as to whether or not you have had the celiac panels yet. If you are going to have testing do go back on gluten as you want the best chance you can get of accurate tests.

I just heard back from my GI doc. She said my primary doc ran a celiac panel one year ago. I called my primary doc and his nice nurse just emailed me the results, which I'll paste after this.

I don't know if I should start a new topic or just keep this one running. I love the support I've already received from this board and I'm SO confused! My doc when asked if I can go on a gluten free diet she said "yes but don't go full board. You do not have Celiac". She's basing this on my one year ago blood panel. When I mentioned to her nurse that there are a lot of false negatives he said "yes I know, but you can't tell "HER" that". All of her nurses are afraid of her. She's treats me (patients) well but supposedly is a terror to work for. She goes through nurses quickly and 2 now have confided in me that she's a bit... ummmmm mean.

HUMAN ANTI-GLIADIN IgA

1.1 U/mL <5.0

HUMAN ANTI-GLIADIN IgG

0.7 U/mL <10.0

T-TRANSGLUTAMINASE IgA

0.8 U/mL <4.0

Reference Range Interpretation

Negative <4.0 U/mL

Weak Positive 4 - 10 U/mL

Positive >10.0 U/mL

T-TRANSGLUTAMINASE IgG

0.8 U/mL <6.0

Reference Range Interpretation

Negative <6.0 U/mL

Weak Positive 6 - 9 U/mL

Positive >9.0 U/mL

Tests: (2) CBC W/ AUTO DIFF (85025)

WBC 8.8 K/mm3 4.0-10.0

RBC 4.53 10*6/mm3 4.20-5.40

HGB 14.7 gm/dL 12.0-16.0

HCT 42.0 % 37.0-47.0

MCV 92.7 fL 81.0-99.0

MCH [H] 32.3 pg 28.0-32.0

MCHC 34.9 g/dL 32.0-36.0

RDW 12.8 % 11.5-14.5

Platelet 278 K/mm3 150-450

MPV 7.1 fL 6.0-9.5

NEUT% 72.9 % 37.0-80.0

LYMPH% [L] 20.2 % 20.5-51.1

MONO% 5.0 % 1.7-9.3

EOS% 1.6 % 0.0-6.0

BASO% 0.3 % 0.0-2.0

NEUT# 6.4 K/mm3 1.6-7.7

LYMPH# 1.8 K/mm3 1.2-3.4

MONO# 0.4 K/mm3 0.0-1.0

EOS# 0.1 K/mm3 0.0-0.7

BASO# 0.0 K/mm3 0.0-0.1

Tests: (3) COMPREHENSIVE METABOLIC PANEL (80053)

Sodium 141 mmol/L 134-144

Potassium 4.0 mmol/L 3.3-5.0

Chloride 106 mmol/L 98-109

CO2 31 mmol/L 24-34

Glucose, Blood 89 mg/dL 70-110

BUN [L] 5 mg/dL 6-20

Creatinine,Serum 0.55 mg/dL 0.50-1.40

Calcium 8.7 mg/dL 8.7-10.0

Total Protein 6.8 g/dL 6.2-8.6

Albumin 3.6 g/dL 3.2-4.8

Bilirubin, Total 0.5 mg/dL 0.2-1.3

AST /SGOT 19 IU/L 10-42

ALT /SGPT 17 IU/L 8-60

Alkaline Phosphatase 43 IU/L 38-126

eGFR Non-Black >60 ml/min1.73 sq m

eGFR Black >60 ml/min1.73 sq m

REFERENCE TABLE FOR POPULATION MEAN GFRs FROM NHANES III:

AGE(years) AVERAGE GFR

20-29 116 ml/Min/1.73 square meters

30-39 107 ml/Min/1.73 square meters

40-49 99 ml/Min/1.73 square meters

50-59 93 ml/Min/1.73 square meters

60-69 85 ml/Min/1.73 square meters

70+ 75 ml/Min/1.73 square meters

Interpretative Notes: (ml/Min/1.73 square meters)

Chronic Kidney Disease <60

Kidney Failure <15

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Just because your celiac panel was negative a year ago doesn't mean it will be negative today. Ask to be retested if you need a diagnosis before you go gluten free. If you don't feel you need a firm diagnosis then continue on the diet strictly and see what happens.

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I would also ask that they run the DGP IgA and IgG (Deamidated Gliadin Peptide). Newer test, seems to be better??

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I would also ask that they run the DGP IgA and IgG (Deamidated Gliadin Peptide). Newer test, seems to be better??

I will definitely ask them to. They are considering repeating the panel. I may go to my primary care for it since he is SO nice and thorough.

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I don't pick out a Total IgA in that list, make sure they include that on the re test

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