Lab results

[cnazrael89]

I got a few more labs drawn today (pictures attached below) . Our local hospital lab had these as an option to order out of pocket so I got what I could. Back story...tTg-IgA 11 (0-3 negative) drawn about 1 month ago. EGD scheduled 10/24. Not able to get B vitamins drawn and provider wouldn't order it. She reluctantly ordered a total IgA and DGP IgG and wouldn't order EMA or DGP IgA for whatever reason. I asked because I plan to go gluten free once all testing is complete. My Mean platelet volume has always been low but it's come down more recently. Total bilirubin has always been slightly high but no other liver enzymes are out of range. TSH is lower than it ever has been but still in normal range. Any insight on how much vitamin D would be okay to take would be helpful and any insight on the labs I posted pictures of below would be awesome! Thanks! 

[cnazrael89]

Also important to note....I've been on a heavy gluten rich diet leading up to my EGD (4 weeks of gluten rich so far and "normal" gluten intake prior to that). I'm having continued very bad headaches daily (worse), irritability is increased, my body feels heavy, steatorrhea intermittently, no energy, slight burning in my stomach area (new). This morning I noticed I'm having pitting edema of my right leg now...I can indent fingers into the swelling and stays that way for a long time (just over my right shin area). That's a new symptom. This is where my last rash was from knee to ankle and is now healed but left those small little bumps all over and the hair mostly fell out where the rash was.

[knitty kitty]

@cnazrael89,

I'm concerned about the edema.  That can be a sign of thiamine insufficiency.  It's so high up your leg!

Since you have increased your gluten consumption, your body may be running out of thiamine. 

Dr. Derek Lonsdale has researched thiamine and says that the body's requirement for Thiamine increases with the amount of carbohydrates consumed.  He's named this high calorie malnutrition (eating more calories than vitamins needed to process them).  

If the edema progresses higher or you start having tachycardia (heart skipping beats or beating irregularly), do contact your doctor or go to the Emergency services.  A simple IV of Thiamine Hydrochloride can reverse it.  Or (500 mg) Thiamine Hydrochloride supplements at home, but then you wouldn't have medical professionals as witnesses.  

When I had edema like yours and tachycardia, my doctor put me on diuretics.  This only increased the rate I was losing thiamine and my health got much worse.  Doctors don't recognize thiamine deficiency symptoms outside of alcoholism.  

Vitamins A and C, Niacin B3, and Biotin Vitamin B7 help repair the skin.  I get DH like that, too. 

Please keep us posted on your progress.

Sending healing vibes.  

[cnazrael89]

5 hours ago, knitty kitty said:

Or (500 mg) Thiamine Hydrochloride supplements at home, but then you wouldn't have medical professionals as witnesses.  

It's safe to say I am in need of vitamin supplementation? From what I've seen on this forum it would be safe to take a gluten free multivitamin and B complex supplement without concern for toxicity as any excess would be removed in my urine. I was hoping to wait to start any supplements until after my EGD as my GI said if Celiac Disease is confirmed they would check for deficiency of things. 10 days until my EGD and then however long to get biopsy results...in your opinion would I be wrong to continue on this trajectory without supplements until I get biopsy results and then hopefully my GI will check for deficiency of vitamins and minerals? At that point start supplementation? I am trying to hold out to do it the "right" way and get labs drawn prior to starting any supplements. With my vitamin D already reported as low I could probably start taking that...seems odd that I have to take this stuff into account on my own and a doctor isn't wanting to help with this...thank you @knitty kittyfor the insight you laid out above; it is helpful to have a path to go down at least! 

[knitty kitty]

I'm saying you need to talk to your GI.  You said he was going to check for deficiencies after your EGD.  Ask him about Wet Beriberi.  

Read the symptoms and more about Wet Beriberi, page 7

https://www.ncbi.nlm.nih.gov/books/NBK537204/

If your symptoms are similar to the description, you make the decision of what you want to do next.

I am not a doctor.  I'm a microbiologist.  I'm not making a diagnosis.  I'm not giving medical advice other than to seek medical advice.

I've experienced thiamine deficiency.  I've experienced these symptoms.  My doctors didn't recognize thiamine deficiency in someone who was not an alcoholic.  But I had learned at university about thiamine, so I started high dose thiamine as Dr. Lonsdale describes.  I had improvement within hours.  The World Health Organization says a thiamine deficiency can be diagnosed if improvement is seen after giving high dose thiamine 500 mg for several days.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Take care of yourself.

 

[cnazrael89]

3 hours ago, knitty kitty said:

I am not a doctor.  I'm a microbiologist.  I'm not making a diagnosis.  I'm not giving medical advice other than to seek medical advice.

Yes, I will talk to my GI doctor. Thank you.