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Need Help With Tests Results Please
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131 posts in this topic

Great!

Let us know :)

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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!

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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 :D

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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 :P

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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 :)

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

Wow...very close to my blood at dx -- I had a few more borderline lows, but in general about the same. The good news when I compare yours to mine is your liver has great numbers. It is common for us to have elevated liver enzymes as the body is working overtime trying to clean things out.

Good Thyroid numbers -- did they run Free T3 or Thyroid Antibodies? Can't remember if that was on your list.

Are you supplementing B12? Nice strong number there.

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Wow...very close to my blood at dx -- I had a few more borderline lows, but in general about the same. The good news when I compare yours to mine is your liver has great numbers. It is common for us to have elevated liver enzymes as the body is working overtime trying to clean things out.

Good Thyroid numbers -- did they run Free T3 or Thyroid Antibodies? Can't remember if that was on your list.

Are you supplementing B12? Nice strong number there.

Free T3 was requested, but it wasn't included, however the thyroid antibodies were not requested. I was going to wait to see what the GI says about things on my follow-up on Thursday. I did have TSH and T4 tested last year, so here's a comparison:

April 2012 Results

TSH 2.490 with ref range of .450-4.5

T4, Free 1.09 with ref range .82-1.77

February 2013 Results

TSH 1.330 with ref range of .450-4.500

T4, Free 1.15 with ref range .82-1.77

Am I correct in thinking that a lower TSH means moving away from the hypo end of the spectrum towards hyper?

The only thing I can think of is the B12 already included in my multi-vitamin, but I'm not taking any extra supplements for that. Is it absorbed in a different part of the intestine than D and K?

Since seeing I'm deficient in Vitamin D and K, and researching them...I thought random bruising was from low iron, and bone pain and muscle spasms from low calcium...turns out I was wrong :) I can rationalize the Vitamin D to winter time in the northeast, but there is no reason I should be deficient in Vitamin K since I eat salads and leafy greens all the time :mellow:

For my GI follow-up on Thursday, here's what I'm thinking:

-let the doctor tell me what he thinks...he is the one with the degree after all ;)

-ask him if he will run the celiac panel again to see if there are any changes in numbers, and ask him to order the gene tests. I ate gluten the entire week and at every meal before my initial appointment, but before that week I would eat it sporadically throughout the week but would have considered myself gluten light. Since my initial appointment, I've been eating gluten at most meals.

-due to low Vitamin D and K and the link to bone mineral density, would it be out of the question to mention something about a bone scan?

-he had already said that if my initial tests turned up nothing, he would order an endoscopy and colonoscopy, but how many samples should I ask him to take for the biopsy?

I'm glad to hear my liver numbers look good because to be honest there was a lot on that report I didn't understand :P

I'm learning lots of new things each day!

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That is great that your TSH improved -- you are not moving towards Hyper -- close to "1" is recommended as the best TSH.

Not sure about B12 -- just know it is good that it isn't low.

Bone scan is a great idea -- my celiac doc ordered for me when freshly diagnosed...haven't had a follow up, but can tell you after nearly four years gluten-free -- my very bad back that I've had since early teen years has vanished -- back is stronger than every in my life :D

And yes, let the doctor lead, but do have your list of questions and tests you'd like at the ready -- I always do much better with a written list in my hand.

Yes, follow up celiac antibodies are important -- I had them at 3mo, 6mo, then annually after that.

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"That  is great that your TSH improved -- you are not moving towards Hyper -- close to "1" is recommended as the best TSH.

Not sure about B12 -- just know it is good that it isn't low.

Bone scan is a great idea -- my celiac doc ordered for me when freshly diagnosed...haven't had a follow up, but can tell you after nearly four years gluten-free -- my very bad back that I've had since early teen years has vanished -- back is stronger than every in my life  :D

And yes, let the doctor lead, but do have your list of questions and tests you'd like at the ready -- I always do much better with a written list in my hand.

Yes, follow up celiac antibodies are important -- I had them at 3mo, 6mo, then annually after that."

 

Thanks so much for the quick reply, Lisa  :)

 

glad to hear if I would ask for a bone scan it doesn't sound out of the question.  the ob/gyn only gave input about my low vitamin D level, and when I asked if anything else was low, I was told that a copy was sent to the GI so he can follow-up with the other results.  I wouldn't have know about the low K without seeing the report, and now seeing the connection between D and K and bone density is concerning since I've always thought bone density shouldn't be a concern until my 50-60s  :mellow:

 

I definitely agree about having things written down.  It helps me organize my thoughts, shows the doctor I'm taking things seriously, and helps me from getting tongue tied since my pulse starts racing when I enter any doctor's office  :)

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Bone scan -- usually folks don't get one until later -- my celiac doc recommended and it wasn't pretty -- I was 43 and had the bone density of a 80-90 year old -- good news is bone replaces itself completely in about 5 years -- looks like mine is -- am planning to repeat scan at about 6 years gluten-free -- should have the bones of a 20 year old by then ;)

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Ok, so after I listen to what the doctor thinks...here are my questions.  anything else I should add?

 

-Can I be retested with the complete celiac panel since I’ve been consuming a lot more gluten over this past month and was gluten light prior to the week before my initial appointment when I ate it at almost every meal?  Can I also have the gene test for celiac ordered? (Celiac Disease HLA DQ Association Test to check for HLA-DQ2 and HLA-DQ8)

 

            -Labcorp test #s CCP (165126) and GT (167082)

 

-Why do I have elevated DGP IgG if there is no other know cause to elevate theses antibodies other than celiac disease?

 

-Why am I deficient in Vitamin K if it is supposed to be rare?  I have not taken antibiotics for awhile. 

 

-Even though my calcium level is normal, because of my vitamin D and K deficiency, should I be getting a bone scan since deficiency in K and D is linked to lower bone mineral density?

 

-OB/GYN said to take 2000iu of Vitamin D per day.  What else should I be taking for Vitamin K and low potassium?

 

-Why do I have high neurtophils and borderline low lymphs?

 

-Endoscopy with Biopsy and Colonoscopy Requests

 

            -At least four samples, but the more the better since the damage can be patchy.  At least three samples taken from the duodenum distal to the papilla, and at least one from the duodenal bulb.  (I copied this info from the 2012 World Gastroenterology Organization Global Guidelines report...kind of looks like Greek to me  :))

 

-Thoughts on capsule endoscopy?

 

 

Tests requested: 

 

-New celiac comprehensive panel

 

-Gene testing

 

-Bone Scan

 

-Endoscopy with Biopsy and Colonoscopy

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I had my follow-up today and am pretty happy with how everything went.  First thing I asked about was my liver/gallbladder ultrasound results.  GI doc said everything looked normal and there were no blocked bile ducts.  My initial sitz marker x-ray showed a lot of stool, but then by day 4 it looked a lot better and I had passed out all the markers.  He did comment on the high DGP igG result, but since the EMA and iga TTG were normal, he seemed to think it wasn't too bad, but because I still feel bloated, he was going to order the endoscopy and biopsy anyway.   I said that I could not find any research for an elevated DGP igG level besides celiac, and he couldn't either but would look into it.  anyone have a good answer?

 

However, then I mentioned that I had vitamin testing done and was deficient in Vitamin D and K.  When I said Vitamin K, that really peaked his interest :)   He said D deficiency was common, but that he hardly sees anyone with a K deficiency.  He asked about antibiotics, and I said I hadn't take any in quite awhile.  Here are causes that I found for this deficiency from University of Maryland Medical Center website: 

 

 

 

  • Health problems that can prevent your body from absorbing vitamin K, such as gallbladder or biliary disease, cystic fibrosis, celiac disease, and Crohn's disease
  • Liver disease
  • Taking blood-thinners, such as warfarin (Coumadin)
  • Long-term hemodialysis
  • Serious burns

To me it seems that the kind of doctor that would normally see K deficiency is a GI doctor.  My multi-vitamin, Every Woman's One Daily by New Chapter Organics, has 1000 iu of Vitamin D, so I'm going to supplement with an additional 1000iu a day, but my vitamin also has 80mcg of Vitamin K which is listed as 100% of the daily value, but the GI doctor said that it would be safe to take 5mg a day of K.  

 

He didn't seem to think I needed a bone scan, and said the gene test wasn't really necessary, so I didn't get those.  However, I did ask to have another celiac panel drawn, and although he wanted to wait a few months, he did agree to that.  I've been eating a lot more gluten over this past month, so I'll see if anything changes.  

 

I did take a copy of this report http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf  with me and showed him the diagrams on pages 8 and 12.  I just happened to have an additional copy of the paper  :P and offered it to him, so hopefully he will read it!  

 

so the outcome...during the first week of March, i will be having an endoscopy with at least 4 biopsy samples though he is willing to take more, and I will be loading up on the gluten this weekend and getting my blood drawn again Monday.  still moving forward!!

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Great Work PositiveThinking!!!

 

It really does help to be prepared and be partners with our doctors.

 

Have a wonderful weekend :)

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Wow...very close to my blood at dx -- I had a few more borderline lows, but in general about the same. The good news when I compare yours to mine is your liver has great numbers. It is common for us to have elevated liver enzymes as the body is working overtime trying to clean things out.

Good Thyroid numbers -- did they run Free T3 or Thyroid Antibodies? Can't remember if that was on your list.

Are you supplementing B12? Nice strong number there.

 

so i realized that T3 was tested, but it was labeled Triiodothyronine,Free,Serum on my lab report and not T3, Free, which would have been much easier for me to understand :)   the level was a 2.7 with a ref. range of 2.0-4.4.

 

so i've been doing some more thinking, while keeping in mind i haven't been diagnosed with anything yet.  what if I am in the early stages of developing celiac, and it's only affecting portions of my duodenum?  I am deficient in Vitamins D and K.  Although Vitamins A and E are within the normal range, they're right in the middle.  My iron serum is normal, and so is my ferritin, but my ferritin is 61 out of a 13-150 range, so I don't have really high ferritin stores.  I've got good levels of folate and zinc, which seem to be absorbed throughout the intestinal tract, and my B12 is in the higher normal range, and when researching, I found out that it is absorbed in the ileum. Maybe it's only affected a portion of my duodenum?  

 

just some more thinking  :)   

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initial test results:

Celiac Disease Comprehensive done by LabCorp

Deamidated Gliadin Abs, IgA 7 units which was negative

Negative 0-19, Weak Positive 20-30, Moderate to Strong Positive >30

Deamidated Gliadin Abs, IgG 43 units which was flagged as high

Negative 0-19, Weak Positive 20-30, Moderate to Strong Positive >30

t-Transglutaminase (tTG) IgA was < 2 which was in the negative range

Negative 0-3, Weak Positive 4-10, Positive >10

t-Transglutaminase (tTG) IgG was < 2 so it was also in the negative range

Negative 0-5, Weak Positive 6-9, Positive >9

Endomysial Antibody IgA Negative

Immunoglobulin A, Qn, Serum 243 mg/dL 91-414 is in their negative range of 91-414

 

just got back my second round of blood testing, and the results are very similar.

 

Deamidated Gliadin Abs, IgA 6

Negative 0-19, Weak Positive 20-30, Moderate to Strong Positive >30

Deamidated Gliadin Abs, IgG 41 which is still flagged as high

Negative 0-19, Weak Positive 20-30, Moderate to Strong Positive >30

t-Transglutaminase (tTG) IgA was < 2 which was in the negative range

Negative 0-3, Weak Positive 4-10, Positive >10

t-Transglutaminase (tTG) IgG was < 2 so it was also in the negative range

Negative 0-5, Weak Positive 6-9, Positive >9

Immunoglobulin A, Qn, Serum 239 mg/dL 91-414 is in their ref. range of 91-414

 

EMA Negative

 

 

 

so I've been eating a lot of gluten over this past month, so I'm surprised the DGP igG fell by 2 points, but at least I know it is truly positive.  Am I correct in thinking that if I was non-celiac gluten intolerant or gluten sensitive, I wouldn't be producing any antibodies at all?    

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so my initial diagnosis from my EGD this morning is GERD and a hiatal hernia.  I really appreciate that my GI doctor seems to be listening...keeping my fingers crossed that this continues...to my questions and requests.  He said normally he would take four samples, but we could take 6 or 8.  I requested 8  :P  He said that my intestinal mucosa looked normal besides one inflamed spot, but we would wait to see what the biopsies show.  

 

I also asked him before the procedure if he was able to find another reason for an elevated DGP igG besides celiac, and he said he was not able.  He must have done some checking, maybe he read the article I gave him at my last appointment :) , but he said that the high DGP igG result did seem very specific to celiac.  That was great to hear him say!  It was nice to also hear him say that there is a lot of ongoing research with celiac and food intolerances in general.  He said that for a long time doctors have told patients that their symptoms were all in their heads, but now the medical world is trending towards that theses symptoms are not in patients' heads but instead the problems lie in their GI tract.   

 

He also talked about gluten intolerance, but I did ask him that if I did have gluten intolerance vs. celiac, that shouldn't be raising my DGP igG antibodies, and he said that was correct.

 

My follow-up is April 11th.  I did ask him if I could start eating gluten free, and he said that I can, so now I'll start making some permanent changes since my testing is complete!

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This seems to be going well.  I especially like the part of being able to go gluten free now!  Well, wishes to you, Positive.

 

Diana

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Great job -- welcome to your new gluten free life!

It takes some work - but I know you'll do just fine.

Let us know if you have questions during your transition or you just need to vent a bit.

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Ah well in waiting for your result too as we share done symptoms. I'm glad all went well though! Can I ask why your follow up is so far off? Does it take a month to check the biopsies? I thought it was about a week?

Hope you're feeling better gluten free now too! Can't wait to try it myself once my referral is over! Lol

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Ah well in waiting for your result too as we share done symptoms. I'm glad all went well though! Can I ask why your follow up is so far off? Does it take a month to check the biopsies? I thought it was about a week?

Hope you're feeling better gluten free now too! Can't wait to try it myself once my referral is over! Lol

*this was suppose to be a short response, but I got a little carried away.  Thanks for listening!

 

I was told to make my appointment 3-4 weeks after my biopsies were taken.  I was supposed to wait two weeks after my sitz marker and liver/gallbladder ultrasound, but I ended up waiting three since the GI was out of the office at my two week mark.  I know the GI is at the location I've gone to on Thursday and Friday each week, I'm guessing at the hospital doing procedures one or two days a week since I was offered a Tuesday or Wednesday appointment for him to do my EGD, and then I'm guessing at their other office location the remaining days.  A lot of guessing about his whereabouts here  :)  He won't be in the office three weeks after my EGD because, from hearing the nurses talking, his wife will be having a baby, so I'm thinking that's a good reason not to be in  ;)

 

I am planning on calling the office the first week of April to see if anyone will read the results to me, so I have more of an idea before my appointment.   The last appointment I had gathered all my research, and realized that my Vitamin K deficiency could be linked to a blocked bile duct, so I thought maybe my ultrasound would show a blocked bile duct, but he said they looked perfect, so that didn't add up.  

 

I get extreme anxiety in doctor's offices, which is why I put off going to them, and not knowing what he would say at the last appointment made it even worse.  I'm thinking calling ahead would be a better choice this time  :) When the nurse asked how I was doing the last time, I said well I feel really anxious, and I'm pretty sure my blood pressure is going to be really high.  It was 170 over ?.  I don't know the second number because all I heard was 170 and knew that was a personal record in a doctor's office.  My previous record was 160 in the OB/GYN's office.  I'm not looking to make records for my BP, but I think this illustrates how anxious I get  ;) The OB/GYN made me come back for a recheck, because continuous high blood pressure is a serious condition, so I bought a home BP checker and logged my results for them, and it is rarely above 125/80 at home.  When I went for my recheck at the OB/GYN, it was high, but since I had my log, she decided I have white coat syndrome, which I completely agree!  The last OB/GYN appointment was at 135, and that's a great number for me in a doctor's office.  I think the whole method of taking blood pressure is contradictory.  Let's constrict your arm, then constrict it more when we add pressure into the cuff, and ask you to relax, as we're constricting your arm some more  :lol:

 

The GI asked me if I wanted something for anxiety, and I declined.  I had told him I thought I had acid reflux but had never been diagnosed with it.  I frequently get a bad taste in my mouth, and he offered something for reflux, but I asked him to wait until after the EGD because I wanted that to be checked out pre-meds, and I'm sure glad I did!  Now I've been diagnosed with GERD, so I know that it's real.  I had started reading Why Stomach Acid is Good for You a few weeks ago because I really do enjoy reading health books for fun, and someone on this forum had recommended it!  I thought it would be an interesting read regardless if I had reflux or GERD or nothing but had stopped mid-way to prep with more celiac reading for my follow-up.  Now I'm getting back to it, so I can gather the info I need to plan my gluten free and GERD eating plan.  

 

Soapbox warning :lol: Medicine is a tricky thing.  Sometimes you really need it, but I'm more about finding the underlying cause than popping a pill.  It's just how I roll and my opinion...take it for what it's worth  ;) If I've exhausted my options, I will take something, and sometimes it really is truly necessary.  When I first started having a rough time mentally and my GP gave me a prescription for Wellbutrin, I had exhausted my options and was still feeling terrible.  I will absolutely say that helped level me out!  I only took it for three months, and called up my GP to ask about how to go off it correctly.  I will be taking Vitamin D and K supplements, the Ks should finally be arriving today, because I know that I truly need them based on my blood work.  After taking Yaz and then switching to Gianvi, the generic of Yaz, and going on an emotional roller coaster, I am in no rush to put meds in my body if it is not something that is truly needed.  I stopped the BC previously to starting Wellbutrin, and then didn't get a period for 5 months, so again meds were helpful in inducing one and now I'm just trying to get it regulated.  

 

Whatever set me off on that downward emotional trend, be it my substantial weight loss through healthy diet and exercise, being switched to generic BC when my body was used to Yaz already or something else, I will never quite know, but I did need Wellbutrin at that time.  

 

This post makes me look like a mess, but this has what has been happening for the past two years.  Physically on the outside, I look like a happy, healthy 27 y/o female, but my mechanical workings on the inside are still not cooperating.  Today is my last day of gluten, so that at my GI follow-up I can give him an honest assessment of what changes I have seen.  I have been cleaning, and researching about which products to switch, so that I can give it my best shot.  I have had trouble with perfectionism in the past, and know that trying to be absolutely perfect during this transition will make me upset if I fail, so I can only try to do my best each and every day.  Tomorrow, March 10th is the start of my gluten-free journey.  Here's to the start of trying to heal my body with the right foods for me  :)

 

thanks for listening!

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You do not sound like a mess to me - you sound like a Celiac ready to take on her new healthier world ... keep it up :)

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I have been absent IGA all of my life.  The physicians used my anti-gliadin IGG as the metric to diagnose with.  My IGG was elevated so we did a biopsy of my small intestine that confirmed my diagnosis.  It is highly possible that you have celiac disease.

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I was gonna say I don't think you sound like a mess either! I'm just sorry to hear you've even through so much. I too suffer with anxiety, but unluckily not just in the doctors office :P. Please do keep us updated with how the diet is going! And of course when you receive your results. All the best :)

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You do not sound like a mess to me - you sound like a Celiac ready to take on her new healthier world ... keep it up :)

 

 

I was gonna say I don't think you sound like a mess either! I'm just sorry to hear you've even through so much. I too suffer with anxiety, but unluckily not just in the doctors office :P. Please do keep us updated with how the diet is going! And of course when you receive your results. All the best :)

Thanks for the encouraging words!!  At this point, I'm waking up with a full 8 hours of sleep but feel exhausted.  Only been gluten-free since Sunday.  I think it's a combo of daylight savings time and gluten withdraw  :)

 

I have been absent IGA all of my life.  The physicians used my anti-gliadin IGG as the metric to diagnose with.  My IGG was elevated so we did a biopsy of my small intestine that confirmed my diagnosis.  It is highly possible that you have celiac disease.

eers03,

 

When you say IGA absent, does that mean you're IGA deficient?  When you had the procedure done, did the doctor say visually everything looked fine, but then the biopsies showed damage?  I am not IGA deficient, and my doctor said visually everything looked pretty good.  Thanks!

 

 

 

 

I found this an interesting read regarding mild enteropathy called Mild Enteropathy Celiac Disease: A Wolf in Sheep's Clothing?

 

http://www.cghjournal.org/article/S1542-3565(12)01307-9/fulltext

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I enjoyed this this thread.  I am so glad that Positive was given what  she needed to take in to the doctors.  It struck me that the tests may only have been asked for because Positive had been here reading.  The diagnosis happened because people here helped.  It is really too bad that we have to fight doctors to get tested, but good we have a place to go for support!

 

Positive, you put in alot of work to type all of the information in.  Sometimes I want help like in this thread, but typing everything is a deterrent to me.  I like to type, but it takes time.  I am glad you were able to get help.

 

Sorry, Positive if you are a he.  I just went with my best guess.

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    • So far I've had no problems with gluten-free Cherrios and I've been eating them since they started producing the gluten-free line. Generally I will have some reaction to gluten if there is contamination in the product I'm eating. But I'm sure someone has gotten a bad batch or is simply very sensitive to trace amounts of gluten. It's up to each individual to decide whether you want to chance trying them. The article mentioned by squirmingitch sheds light on the problem with anything listed as gluten-free. Contamination can occur at any point in the harvest or processing, and testing may miss it. I also eat Chex, Nature's Path cereals and have tried other brands w/o any problems. I do miss gluten-free Rice Krispies, they made for a nice addition to meat loaf, shame they discontinued the item.
    • Here is another point.  My hubby went gluten-free per the poor advice of his GP and my allergist.  It worked.  A tough first year, but he got well.  Thirteen years later, I got diagnosed with celiac disease.  I was shocked!  😱.   Does he have celiac disease?  We will never know because we can not afford to have him do a challenge.  He refuses and I can not blame him.  He knows he will be very sick!   The point?  I am so lucky that we both can not have gluten.  I never worry about him making me sick or vice versa. We made the house completely gluten free for  1) our health and 2) the fact that our kid started helping in the kitchen. Kids make mistakes and I personally need a safe haven.  She wants gluten?  I buy prepackaged stuff and she takes it to school.  All parties and events at my house are gluten free.  Lots of work, but we stay healthy.  She does not have celiac disease.  When she is preparing for a celiac test,  I send her on the porch to eat cookies or bread or whatever floats her boat.  We travel in a gluten-free RV.  I have five sizes of ice chests.  We just have to be prepared for any event.   How can we live this way?   We love feeling good.
    • Freize is right, you need to think about your environment.   Based on that a study I posted for you, you will note that the patients who were diagnosed with refractory celiac disease and THOUGHT they were diet compliant found that they WERE NOT diet compliant.  How is this possible?   This is way out there, but unless you are growing all your own food, you don't really know if it is gluten free.  In the US, we do have laws to help protect our food supplies (no perfect, but a start).    I can not speak for India.  For example, what about your soy?  It can be contaminated by the farmer as it is often rotated with wheat.  Here is an article by Jane Anderson who has celiac disease.  She is very strict as she has DH (celiac rash), but she cites Trisha Thompson who tests foods for gluton contamination, The gluten-free WatchDog (like Consumer reports).  She found that soy which is naturally gluten free, but can be cross contaminated by wheat: https://www.verywell.com/is-soy-gluten-free-562371 so, start thinking about your food supply. As far as a negative TTG IGA or TTG IGG?  I test negative to both.  Only the DGP IGA has ever been elevated in my blood tests (even repeats), yet I had a Marsh Stage IIIIB on my biopsy.  Have you had a DGP IGG?  (I do not see this in your posting).   http://www.cureceliacdisease.org/screening/ These additonal celiac tests might help you feel confident that you have celiac disease and not something else that is damaging your villi.  But remember, some  folks have celiac disease even with negative blood.  I am not IGA deficient, so this is an area I have not researched.  Not to mention that some celiac researchers do not think that the celiac  antibodies tests are good for diet compliancy.   I wish I had better answers for you.  Try a grain free, whole foods diet of meats, fish, eggs, and vegetables for a while.  All food prepared by you. Who cooks your food now?  Is your home gluten free?  Cross contamination at home?  Kissing a loved one.  We had a doctor with celiac disease who was getting glutened by her little children who were consuming gluten!  
    • I won't say I will never eat out but I can't see me eating out for the foreseeable future. Even then, I will most likely only eat at a dedicated gluten free place. I am extremely sensitive to the tiniest amount of gluten and it's just not worth the risk to me. Eating out is playing Russian Roulette as far as I'm concerned and I'm not ready to play that game yet.
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