Quincypp

Your responses are most appreciated, thank you. I was afraid gluten consumption before the test was needed. Predictably, the test results were negative.

I have been relatively gluten-free for over a decade. I say relative because I allow myself to eat non-certified oats daily and drink some beers on the weekends. As others have reported, some beers I seem to handle fine and others not so well. I decided to include a celiac test in my annual physical because I am beginning to fear that if I am legitimately celiac rather than gluten-intolerant, I am doing long-term damage by consuming even the minimal amounts of gluten in non-certified oats and beer.

Unfortunately, it seems the test was a waste of money since I was told eating gluten beforehand was not necessary for an accurate reading. Drag.

Thanks again for your input.

I just got tested by my dr - waiting for results. While I havne't been on gluten free diet - i have had minimal digestion because I am doing Atkins - so no bread, wheat products consumed. May have digested some in other forms - she was aware of that but didn't say it would impact the results - not until i read hear did i realize hey i probably shoudl have consumed before. I spoke with my family dr and he said I may have to be retested if the results don't come out as they suspect - strongly believe celiac due to malabsorbion of vits.
I'll let you know how my tests come back and if she says I need to consume and then retest.

Odd.....since I believe I was infused with 200 mg (ml?) each time.

Hmmm - maybe it was 200 then - i will pay more attention next time. I'll ask when she calls me back.

No, I didn't have any swelling with my infusions of Venofor. I'm curious as to the infusion cycle your doctor has placed you on. Generally, infusions are given weekly for four weeks, and then when a person's ferritin level falls below normal again, the cycle of four weeks of infusions begin again. I don't think one infusion is going to be enough to raise your ferritin level sufficiently. It's possible that your doctor does not have a lot of experience with iron infusions....and he may need to speak to someone at the infusion center to get up to speed on what you need. How much venofor did you receive in your first infusion?

my dr is to call me this week to decide what next steps to take - i agree it will be more than one iron infusion - think she also wanted to see how i would react. i agree will probably need more than one infusion - she's a hema so would think she knows about infusions! Funny after I posted this late last night - today i am not as sore in my hands - so i think its going away. I believe the dose I got was 20 ml (not sure of the ml) but it was 20. This this is the standard starting dosage.
thanks!

Welcome Quincy!

I agree wholeheartedly. It is my belief that anyone with gastro, autoimmune or nonspecific symptoms should be tested for Celiac Disease. So many of us would have been helped much earlier in life if this was commonplace.

Hope your results are clear. Do you know if your doctor ordered a complete Celiac Antibody Panel? If so, regardless of the result it would be wise to remove ALL gluten for at least three months (six is better) to monitor symptoms and re-draw your deficient nutrients.

Good luck to you

Unfortunately i don't know what she is testing - or I should say what she is looking for -she just said that she was testing me for celiac - my concern as I have mention in other posts is I have been wheat free since april - not gluten free as i have learned it is hidden in a lot things - but havne't consumed a lot i suspect. My inflammatory markers have gone down to half of what they were - still very high - but are lower than before. I am waiting her phone call - been a week since she did the test. She said she'd call me with the results (save me the long trip and then next steps - i forgot to ask how long that would take) I also had graves - 1991 i was diagnosed - had the radioactive idodine treament in 92. At my last blood work my thyoid levels were also out of whack - slightly hyper however since i have lost 50pounds (trying) i can blame that as dosage usually changes with my body weight.
Thanks - I'll post what I find out!

Hi there, and welcome.

I am not the best person to answer all of your questions (there are a lot of really knowledgeable people here. But I'll give you my 2¢.

It certainly sounds like you may have celiac. Your symptoms, and you response to the Atkins diet, certainly point in that direction.

As for the impact of your diet on testing results - unfortunately from my understanding, yes, your current diet could lead to a false negative. I think the recommendation is consuming gluten equivalent to two slices of bread per day for at least four weeks prior to testing (please correct me if I'm wrong!).

That isn't to say your test will necessarily come back negative, but it might result in a false negative.

Thanks for the reply! I will consider retesting after going on a normal gluten if the results are negative. There is no reason i should have such low iron or folate based on my current diet. thanks for listening!