81 replies to this topic

[GottaSki]

Lisa, great video!! i'm going to post the link in this thread I love how they explain things in easy to understand terms. very helpful!

Yes, this video was very helpful to me -- Dr. Harmon gave me a DVD of it when diagnosed -- then I found on youtube when I wanted to show others on the forum.

Note for anyone reading along -- the video is over an hour long -- Drs K and H are worth listening to...the dietician -- not so much

[powerofpositivethinking]

i've also been browsing this report from the World Gastroenterology Organisation. IMO, my GI doc should see this report as a very credible source since it's published by his peers! http://www.worldgast..._long_FINAL.pdf

at the top of p. 7 it discusses Nonclassic symptoms, which have bloating and constipation listed, so I will definitely be highlighting that

on the top of p. 8 it has a great diagram I will be sharing with my doctor at the follow-up which says that since I tested high for DGP igG he should perform a small bowel biopsy

more info to add to my file

[powerofpositivethinking]

so i've completed all my tests for my follow-up GI apt on February 21st, and so far I don't know the results of my gallbladder/liver ultrasound, but I've gotten outcomes on the other two. I've posted already, but for the full celiac panel, I scored high on the DGP igG test only, and I ate gluten at almost every meal in the week leading up to it, but I was eating gluten light before that week, so I bet my score would have been higher. I've been consuming a lot of gluten for my follow-up. I was supposed to be x-rayed three times for my sitz marker exam, but on the second x-ray/4th day, the radiologist said everything had come out so I wouldn't have to come back for the third x-ray

so i may be passing things in a timely fashion according to the medical world, but i've decided I'm continuously bloated, and as I saw in another thread, "always feel a little bit pregnant." this feeling used to only happen before my time of the month, but now it sticks with me constantly

[GottaSki]

so i've completed all my tests for my follow-up GI apt on February 21st, and so far I don't know the results of my gallbladder/liver ultrasound, but I've gotten outcomes on the other two. I've posted already, but for the full celiac panel, I scored high on the DGP igG test only, and I ate gluten at almost every meal in the week leading up to it, but I was eating gluten light before that week, so I bet my score would have been higher. I've been consuming a lot of gluten for my follow-up. I was supposed to be x-rayed three times for my sitz marker exam, but on the second x-ray/4th day, the radiologist said everything had come out so I wouldn't have to come back for the third x-ray

so i may be passing things in a timely fashion according to the medical world, but i've decided I'm continuously bloated, and as I saw in another thread, "always feel a little bit pregnant." this feeling used to only happen before my time of the month, but now it sticks with me constantly

Congratulations on passing the sitz marker exam

I failed miserably -- trust me -- you don't want to get to the stage that nearly all markers were present and accounted for at day five -- xray tech did a double take, asked me if I had waited the full five days and said she never saw that many markers remain.

In my case, the severe bloat was not just my abdomen -- it was more prominent there - I looked between 6-9 months preg each evening the year or two before I was finally dx'd -- but now that my inflammation is finally leaving my body it is obvious that every part of my body had inflammation -- although I failed every blood test for inflammation over the past 30 years.

I'm curious -- What was your Total Serum IgA?
Any nutritional defieciences - have they all been checked -- Vit Bs, D, K, Iron, Ferritin, Copper and Zinc -- Along with a CMP (Complete Metaboloic Panel)?

[powerofpositivethinking]

Congratulations on passing the sitz marker exam

I failed miserably -- trust me -- you don't want to get to the stage that nearly all markers were present and accounted for at day five -- xray tech did a double take, asked me if I had waited the full five days and said she never saw that many markers remain.

In my case, the severe bloat was not just my abdomen -- it was more prominent there - I looked between 6-9 months preg each evening the year or two before I was finally dx'd -- but now that my inflammation is finally leaving my body it is obvious that every part of my body had inflammation -- although I failed every blood test for inflammation over the past 30 years.

I'm curious -- What was your Total Serum IgA?
Any nutritional defieciences - have they all been checked -- Vit Bs, D, K, Iron, Ferritin, Copper and Zinc -- Along with a CMP (Complete Metaboloic Panel)?

Lisa, I'm glad you were diagnosed and are on your way to recovery!! The abdominal bloating frustrates me the most. I do ab exercises, but when you can never pull your stomach in the whole way, it gets frustrating because it never feels like I am doing it the best I can I can also tell when my face bloats because my eyelids get droopy, and I get a lot of water retention above my knees.

My Immunoglobulin A, Qn, Serum was 243 mg/dL which was in their normal range of 91-414. In my first post I have it incorrectly labeled since I realized the negative was referring to the EMA result. I haven't had any nutritional testing done. The only thing I know is my hemoglobin level was 13.0 last year, which meant I was alright to give blood, but that was last March. It was the first time I gave blood and almost fainted. It was not a plesant expierence...

I haven't come across anything about a Complete Metabolic Panel. What does that consist of?

[GottaSki]

Lisa, I'm glad you were diagnosed and are on your way to recovery!! The abdominal bloating frustrates me the most. I do ab exercises, but when you can never pull your stomach in the whole way, it gets frustrating because it never feels like I am doing it the best I can I can also tell when my face bloats because my eyelids get droopy, and I get a lot of water retention above my knees.

My Immunoglobulin A, Qn, Serum was 243 mg/dL which was in their normal range of 91-414. In my first post I have it incorrectly labeled since I realized the negative was referring to the EMA result. I haven't had any nutritional testing done. The only thing I know is my hemoglobin level was 13.0 last year, which meant I was alright to give blood, but that was last March. It was the first time I gave blood and almost fainted. It was not a plesant expierence...

I haven't come across anything about a Complete Metabolic Panel. What does that consist of?

CMP is a simple blood test -- usually one of the first docs run for any health concern. If you have not had a recent CBC, CMP or nutrient testing -- I highly recommend doing so ASAP. These will give a good snapshot of where you stand with regard to absorbing nutrients -- celiac disease prevents proper absorbtion.

[powerofpositivethinking]

CMP is a simple blood test -- usually one of the first docs run for any health concern. If you have not had a recent CBC, CMP or nutrient testing -- I highly recommend doing so ASAP. These will give a good snapshot of where you stand with regard to absorbing nutrients -- celiac disease prevents proper absorbtion.

I will certainly ask for one at my follow-up. Thanks!

[powerofpositivethinking]

CMP is a simple blood test -- usually one of the first docs run for any health concern. If you have not had a recent CBC, CMP or nutrient testing -- I highly recommend doing so ASAP. These will give a good snapshot of where you stand with regard to absorbing nutrients -- celiac disease prevents proper .

i have my lovely ob/gyn appointment this week and thought I would ask that doctor if she would be willing to order the CMP for me. I have to use LabCorp for my insurance, and this is what their CMP covers: Alanine aminotransferase (ALT/SGPT); albumin:globulin (A:G) ratio; albumin, serum; alkaline phosphatase, serum; aspartate aminotransferase (AST/SGOT); bilirubin, total; BUN; BUN:creatinine ratio; calcium, serum; carbon dioxide, total; chloride, serum; creatinine, serum; globulin, total; glucose, serum; potassium, serum; protein, total, serum; sodium, serum

Based on other posts, I also wanted to request Vitamin A, B, D, E, K, iron/ferritin, magnesium, zinc, thyroid with TSH, T3 and T4.

Anything else I should ask for??

Mine as well ask for everything, and see what I get

[GottaSki]

Good List -- Make sure you request Free T3 and Free T4 -- that "free" is important.

CBC - Complete Blood Count

For Vitamin B -- I suggest you request B1,B2, B6 and B12.

I think you have had all your celiac antibodies -- just double check:

Total Serum IgA
tTG - BOTH IgA and IgG
DGP - BOTH IgA and IgG
EMA
AGA - if you have both DGP's that is usually enough, but if you haven't had AGA - BOTH IgA and IgG - it can't hurt.

Oh - Inflammation markers CRP, SED and RF

Good Luck!

PS...I forgot to add Copper to the list

[powerofpositivethinking]

Good List -- Make sure you request Free T3 and Free T4 -- that "free" is important.

CBC - Complete Blood Count

For Vitamin B -- I suggest you request B1,B2, B6 and B12.

I think you have had all your celiac antibodies -- just double check:

Total Serum IgA
tTG - BOTH IgA and IgG
DGP - BOTH IgA and IgG
EMA
AGA - if you have both DGP's that is usually enough, but if you haven't had AGA - BOTH IgA and IgG - it can't hurt.

Oh - Inflammation markers CRP, SED and RF

Good Luck!

PS...I forgot to add Copper to the list

Lisa, thanks for the info! I had my ob/gyn apt today and asked the doctor to order the following:


Complete Metabolic Profile
Complete Blood Count
Vitamins A, B (B1, B2, B6, B12), D, E, K
Ferritin/iron
Magnesium
Folate
Potassium
Calcium
Zinc
Copper (I couldn't get this one, because they didn't have the proper storage equipment required to send it off to the lab, but I thought if they were able to do all the rest, it wasn't so bad )
Thyroid (TSH, Free T3 and Free T4)
Inflammation Markers CRP, SED and RF

I was happy that the doctor had no problem ordering all of these for me, and I will report back with the results when I find out!

[GottaSki]

Great!

Let us know

[powerofpositivethinking]

so I'm still waiting for results of my vitamin/nutrient testing, but as I was reading some more on Dr. Ford's site I came across this info http://drrodneyford....ac-disease.html

I will be printing this out!

[powerofpositivethinking]

Lisa, thanks for the info! I had my ob/gyn apt today and asked the doctor to order the following:


Complete Metabolic Profile
Complete Blood Count
Vitamins A, B (B1, B2, B6, B12), D, E, K
Ferritin/iron
Magnesium
Folate
Potassium
Calcium
Zinc
Copper (I couldn't get this one, because they didn't have the proper storage equipment required to send it off to the lab, but I thought if they were able to do all the rest, it wasn't so bad )
Thyroid (TSH, Free T3 and Free T4)
Inflammation Markers CRP, SED and RF

I was happy that the doctor had no problem ordering all of these for me, and I will report back with the results when I find out!

out of all those tests, the only one my ob/gyn doctor said was abnormal was low Vitamin D, and I've been told to supplement with 2000 iu a day, and then get it checked again in three months. the results are also being sent to my GI for next week's appointment, but I don't have a hard copy yet. Hoping they show up in my Labcorp online account soon!

[GottaSki]

even "normal" results can be helpful to have. for instance I was on the border of deficient in every nutrient that I tested in the "normal" range for decades -- now that we have figured most of my puzzle out and I am absorbing nutrients -- all the low or low end of normal results are in the high normal ranges

[powerofpositivethinking]

My results showed up in my Labcorp account this morning! I already knew about the low vitamin D, but turns out I have a few other low and high results. Any input would be greatly appreciated


Name of Test/My Result/Reference Interval/Low or High Result Flag

Thyroid
TSH 1.330 .450-4.500
T4, Free (Direct) 1.15 .82-1.77

CBC Tests
White BC 7.2 4.0-10.5
Red BC 4.54 3.77-5.28
Hemoglobin 13.1 11.1-15.9
Hematocrit 39.3 34.0-46.6
MCV 87 79-97
MCH 28.9 26.6-33.0
MCHC 33.3 31.5-35.7
RDW 13.0 12.3-15.4
Platelets 255 140-415
Neutrophils 76 40-74 High
Lymphs 15 14-46 *this is not marked as low, but it's close
Monocytes 8 4-13
Eos 1 0-3
Basos 0 0-3
Immature Granulocytes 0 0-2
Immature Grans (Abs) 0.0 0.0-0.1

CMP Tests
Glucose, Serum 90 65-99
BUN 14 6-20
Creatinine .75 .57-1.00
eGFR If NonAfricn Am 110 >59
eGFR If African Am 126 >59
BUN/Creatinine Ratio 19 8-20
Sodium 139 134-144
Potassium 3.4 3.5-5.2 Low
Chloride 100 97-108
Carbon Dioxide 25 20-32
Calcium 9.4 8.7-10.2
Protein 7.4 6.0-8.5
Albumin 4.5 3.5-5.5
Globulin 2.9 1.5-4.5
A/G Ratio 1.6 1.1-2.5
Bilirubin .6 0.0-1.2
Alkaline Phospatase 50 25-150
AST (SGOT) 17 0-40
ALT (SGPT) 16 0-32

Vitamin B12 824 211-946
Folate 18.5 >3.0
Vitamin K1 <0.13 .28-1.78 Low

RA Latex Turbid <0.1 0.0-13.9

Vitamin E 11.2 4.6-17.8

Vitamin D 25.3 30.0-100.0 Low

Iron 103 35-155

Sedimentation Rate-Westergren 4 0-32

Magnesium 1.9 1.6-2.6

Zinc 106 56-134

Ferritin 61 13-150

C-Reactive Protein 1.6 0.0-4.9

Triiodothyronine, Free 2.7 2.0-4.4

Vitamin A 46 18-77



Additional information on my report:


Vitamin D deficiency has been defined by the Institute of
Medicine and an Endocrine Society practice guideline as a
level of serum 25−OH vitamin D less than 20 ng/mL (1,2).
The Endocrine Society went on to further define vitamin D
insufficiency as a level between 21 and 29 ng/mL (2).

So the standouts are low Vitamin D, K, potassium and high neutrophils. geez that took me a long time to write-up