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What Do I Need To Discuss With My Doc For Follow-Up

ChristieKate

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ChristieKate Rookie
ChristieKate
Posted

The B12 thread got me thinking...

My levels are in the 200s as well. My old doctor gave me monthly B12 shots for this because she said that serum levels weren't the best indicator and she doesn't like to see them below 500...unfortunately my new doctor won't prescribe shots if the level is over 200. Luckily I had a vial from the old doc. After 6 months gluten free I can now go close to two months without a shot. I do take the sublingual nightly as well!

This is interesting. My level was 271 but because it was in the "normal" range I though that was fine. I am seeing my family doc on the 12th for follow up as my GI specialist just moved. (Luckily, he diagnosed me before he left!) Should I ask for B12 supplements even though I'm in the normal range? What's the best route? Oral tablet, sublingual, injection?

While my GI symptoms are starting to improve I am still finding myself awfully tired. (I just woke up from a 3 hour "nap". I crashed after I got home from work today!) I'm wondering if this is related. My ferritin was also low-ish but not flagged. It was 10.2 where the range is 10-204.

The symptoms that led to my diagnosis included a lot of bleeding.

So, I guess I should ask about my ferritin and maybe my B12...is there anything else?

Would speaking with a naturopath be helpful in this regard? Do people better luck with doctors of naturopaths? I live in Canada and I also have excellent secondary coverage, so coverage/insurance costs shouldn't be an issue for me.

Thanks again!

c.

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kareng Grand Master
kareng
Posted

Check your vitamin D levels, too. Also, thyroid problems go along with celiac disease. You can get B vitamins over the counter so do those. When my iron, b and d went up I had more energy. Also, at this time of year pollen allergies can be bad and make you tired.ki

DonaldandAlanda Evans Apprentice
DonaldandAlanda Evans
Posted

I use GNC zipmelt b12 and it works great

Mari Enthusiast
Mari
Posted

I can't comment on B12 but have taken B vitamins in the past and eat foods that have B vitamins now. Naturopaths are very hepful for many celiacs and I think the best way to find a good one is to start asking your friends and acquaintences for recommendations. Their interest and training is in balancing and healing the whole body. I live in the back of beyond and use a book by a naturopath which works for me. See my personal profile.

sb2178 Enthusiast
sb2178
Posted

A ferritin of 10 is low enough that you might want to follow up on that-- doesn't leave you much iron in storage. (Over 25 is where my doc want mine.)

Interesting to see that B12 level, as mine was definitely under 500 despite supplements.

frieze Community Regular
frieze
Posted

A ferritin of 10 is low enough that you might want to follow up on that-- doesn't leave you much iron in storage. (Over 25 is where my doc want mine.)

Interesting to see that B12 level, as mine was definitely under 500 despite supplements.

are you taking the B12 on an empty stomache? that is an hour before or 2 hours after eating...

ChristieKate Rookie
ChristieKate
Posted
  • Author

Back from the doc.

It's complicated...

My GI's report says "small bowel had the appearance of celiac disease" but the GI biopsy came back "no evidence of celiac" . However it also said...

"Sections show 4 biopsies of small bowel mucosa which have normal villous architecture. Brunner's glands are identified in one biopsy. There are a few villi where the tops appear to be artifactually missing and there is no increase in intrepithelial lymphocytes. There is one small area where the villi are not evident and there is dilated crypt with some neutrophils in the lamina propria. This may be a healing erosion."

Diagnosis: Small bowel and duodenum, mucosal biopsies - focal area of acute inflammation but no evidence of celiac disease.

And...my symptoms were never really celiac-like in that I was having acute cramping with copious bloody diarrhea. However - my symptoms have improved on the gluten-free diet. And, my ttg was so high (199.4) that the diagnosis seemed clear. Except that I also have some acute colitis that showed up on colonoscopy. And...crohn's might also raise the ttg levels. And, I have a complicated GI history including hepatitis and pancreatitis in childhood, along with spleen and stomach involvement that was never really understood. And, this all started up after a anaphylactic allergic reaction that led to me going on prednisone which led to me getting a strep infection which led to antiobiotics which is what we originally thought triggered the D.

Ack!

So all this to say, my doc wants to refer me to the major hospital (2 hours away) to see "the best celiac specialist" in the area to clarify the picture. She's thinking right now it's most like one of these three options: 1. Celiac (most likely) 2. Crohn's (both large and small bowel involvement plus the sxs are more crohn's like) This is the least likely or 3. Both Celiac and Crohns!

Sigh. All this and I can't even have my cookies. :(

She's also ordered vit D and B12 and calcium levels again. Wants me to start B12 and D and Calcium supplements and has ordered a bone density test. Plus some other bloodwork.

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