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Got Bloodwork Back, But Just Had Endoscopy Yesterday

joshnjustinsmom

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joshnjustinsmom Rookie
joshnjustinsmom
Posted

So, I am a little miffed I think at the lab personnel. I know my Doc ordered a tTG, Gliadin Antibody, and total IgA, but when I was getting the blood drawn one of the lab ladies commented to the other that she was going to change the order to the complete Celiac panel. Well, it appears she changed it to only the EMA without total IgA. My result for EMA is "negative" (that is all it says). Am I right that without the total IgA this result really doesn't mean much?

The good news (I think) is that I had the endoscopy yesterday, and have an appointment to get the results in 9 days. They were also looking for Eosinophilic Esohpagitis, but the GI said he couldn't see any damage to the esophagus or small intestine. Honestly I have mixed feelings about getting these biopsy results. Celiac really seems to encompass all of my problems, and I really want to finally have an answer for all of my problems so I can work toward feeling well, but it would be nice to think that I could keep enjoying bread all of my life.

I know from my reading that people with Celiac often have low vitamin B and D levels, but I was wondering if these are normally "off the chart low" or if they can be low-normal range. Over a year ago I was told to take Vitamin B6, B12, and D supplements because my levels were at the low end of normals (I don't have the B levels or reference, but the D was 42 (ref 30-100) and I was tanning a lot at that time (should've helped Vit D levels). Now, after taking 5,000IU of D3 daily my D level has dropped to 33 (ref 30-100). The Doc didn't check B levels this go-round, so I don't know what they are. To me it looks like my potassium and sodium are low-normal as well (even though I eat tons of salt because of low BP and pre-syncope) with Potassium at 3.8 (ref 3.5-5.5) and Sodium 137 (ref 135-146).

Anyway, just curious if the mal-absorption of Celiac shows drastic depletion of these things, or if low-normals are common among those with Celiac.

Sorry for the half vent, half needing info/support. All of this waiting and no real, new information to make me know one way or the other is really getting to me.

Thanks!

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shopgirl Contributor
shopgirl
Posted

Damage to the villi can't be seen with the naked eye

ravenwoodglass Mentor
ravenwoodglass
Posted

You need to let your doctor know that the lab person changed the orders. That is not something she should have done.

As the previous poster stated the biopsy is needed to tell if the villi are damaged as the damage.

Now that you have had blood and biopsy done go ahead and start the diet strictly. Your body may give you the answer before you even get the results. Since there are high rates of false negatives you need to do a trial on the diet no matter what the results are.

joshnjustinsmom Rookie
joshnjustinsmom
Posted
  • Author

Thank you both for your help!! I had a follow-up with my PCP and he also told me to go ahead and go gluten-free regardless of biopsy outcome, and I also found out that I have some IgE mediated allergies to many foods including soy and peanuts, so I will be excluding them as well. Hopefully I will see some good results!

Skylark Collaborator
Skylark
Posted

Good luck! Bread is overrated. ;) Welcome to the world of garlic-mashed potatoes, yams, fragrant rice, and old-fashioned cornbread made in a cast iron pan. There's lots of good gluten-free food.

My vitamin D was 28, below the 30-100 cutoff. I was borderline anemic and low-normal calcium, never anything dramatic.

mushroom Proficient
mushroom
Posted

Yes, low normal levels of those important nutrients can make you feel just as bad as levels that are out of range. My folate was the only one that was out of range, but the D, B12 and others I don't recall were barely within range. I still struggle to keep up my magnesium and zinc which they often don't check for, also Vts. A, E and K. Most people feel better when their levels are mid-range at least. I still get a B12 shot every 3 months because I can't take the sublingual, and supplement everything because I just don't seem able to extract what I need from food.

ravenwoodglass Mentor
ravenwoodglass
Posted

Good luck! Bread is overrated. ;) Welcome to the world of garlic-mashed potatoes, yams, fragrant rice, and old-fashioned cornbread made in a cast iron pan. There's lots of good gluten-free food.

Just make sure that is a new cast iron pan. If you have one that has been used for gluten foods you don't want to use it.

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joshnjustinsmom Rookie
joshnjustinsmom
Posted
  • Author

Good luck! Bread is overrated. ;) Welcome to the world of garlic-mashed potatoes, yams, fragrant rice, and old-fashioned cornbread made in a cast iron pan. There's lots of good gluten-free food.

My vitamin D was 28, below the 30-100 cutoff. I was borderline anemic and low-normal calcium, never anything dramatic.

MMMMMMMM! You are making my mouth water already!! ;) Thanks for the info on your labs--that answers my question.

joshnjustinsmom Rookie
joshnjustinsmom
Posted
  • Author

Yes, low normal levels of those important nutrients can make you feel just as bad as levels that are out of range. My folate was the only one that was out of range, but the D, B12 and others I don't recall were barely within range. I still struggle to keep up my magnesium and zinc which they often don't check for, also Vts. A, E and K. Most people feel better when their levels are mid-range at least. I still get a B12 shot every 3 months because I can't take the sublingual, and supplement everything because I just don't seem able to extract what I need from food.

Thank you so much for all of the information!! I think making sure my levels go up to mid-range will be attended to just as much as avoiding certain foods. Hopefully the combination of these things will make me feel human again!

joshnjustinsmom Rookie
joshnjustinsmom
Posted
  • Author

Just make sure that is a new cast iron pan. If you have one that has been used for gluten foods you don't want to use it.

I don't know that I would have thought about that! I guess eventually thinking about all of the possible sources of cc will be second nature. ;)

Also, does anyone know where to buy a cast iron pan that isn't pre-seasoned? I have old cast iron from my grandmother, and before she gave it to me we purchased a pre-seasoned, cast iron pan (wasn't cheap) in which the "seasoning" promptly flaked off. It looked more like a coating of teflon rather than a seasoned cast iron pan.

ravenwoodglass Mentor
ravenwoodglass
Posted

I don't know that I would have thought about that! I guess eventually thinking about all of the possible sources of cc will be second nature. ;)

Also, does anyone know where to buy a cast iron pan that isn't pre-seasoned? I have old cast iron from my grandmother, and before she gave it to me we purchased a pre-seasoned, cast iron pan (wasn't cheap) in which the "seasoning" promptly flaked off. It looked more like a coating of teflon rather than a seasoned cast iron pan.

You may want to post a topic 'cast iron pans' and ask how to degluten a cast iron pan. I seem to remember someone posting a way to do it a while back. If there isn't a way hopefully someone will know where to find a good non-seasoned or seasoned one. I have one that I got a Tractor Supply that was preseasoned that has held up well if you have one of those near you.

mushroom Proficient
mushroom
Posted

Cast iron pans be deglutenized by putting them in the oven and running the clean cycle. They they have to be scoured out and reseasoned. :)

ravenwoodglass Mentor
ravenwoodglass
Posted

Cast iron pans be deglutenized by putting them in the oven and running the clean cycle. They they have to be scoured out and reseasoned. :)

Thanks Mushroom, I knew I had seen a way somewhere on the board.

joshnjustinsmom Rookie
joshnjustinsmom
Posted
  • Author

Cast iron pans be deglutenized by putting them in the oven and running the clean cycle. They they have to be scoured out and reseasoned. :)

Thank you very much!!

joshnjustinsmom Rookie
joshnjustinsmom
Posted
  • Author

You may want to post a topic 'cast iron pans' and ask how to degluten a cast iron pan. I seem to remember someone posting a way to do it a while back. If there isn't a way hopefully someone will know where to find a good non-seasoned or seasoned one. I have one that I got a Tractor Supply that was preseasoned that has held up well if you have one of those near you.

Thank you very much for your help once again!! I may check out Tractor Supply (we have one near us)even after de-glutening my grandma's pan. I have a feeling we will need one gluten-free, and one that can be used with gluten containing products.

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