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Member Since 29 Nov 2012
Offline Last Active Dec 07 2012 04:19 PM

Topics I've Started

Well The Dr Called...

06 December 2012 - 06:58 PM

I am so mad at myself. I was in a meeting with my boss and my phone rang - of course it was the dr calling me back. She said the blood tests came back negative for celiac - however the best way to diagnose is biopsy doing an edoscopy (which i had done last year but not checked for celiac - i don't htink they did any biopsy of the intestine. Also I haven't really been digesting a lot of gluten since on the atkins diet. She was surprised the iron infusion she gave me didn't give me a "big boost" of energy. I said yeah i feel a little better but its not like I suddenly feel great. I asked if i would be getting any more iron and she said no the dosage she gave me will bump up my hemaglobin to 140 and thats enough - i was at 128. However I thought the point of the iron was to get my iron and iron stores up which were both at 5. Anyway the reason I'm mad is cause I didn't ask her my questions - guess I was caught off guard with calling while i was with my boss. I also didn't say much to her - i was like a deer in the headlights! So i go back on March 1 for my follow up. She wants a copy of my last endoscope and a celiac disease copy of the actual gallium scan that came up positive for inflammation in my marrow - not the summary but the actual test so it can have a second opinion. I do see my family dr in January i will talk to him too - he also said if i wasn't consuming gluten it could come back negative. I wanted to ask for a copy of the blood results but forgot - so will call back to get a copy faxed to me - so I can see what she tested for. i did ask how long for the folate to kick in (I am on supplements) she said that would take a month - so i might just have the double whamny of o low iron and low folate causing the fatigue. Mind you - still don't know why i have such low values since my diet is very rich in both. I also wanted to ask to test my other vitamin levels to see if any other levels are low. Guess just more waiting.

Iron Infusions

01 December 2012 - 09:03 PM

i had an iron infusion 8 days ago - had the Venofor. My iron level was 5 and my ferritin was below 5 (was at 5 in May and the most recent test just said it was less than 10 but not a specific number) with my saturation levels my dr said I was on fumes!
Anyway - had the iron infusion - no symptoms - just some facial flusing. No problems at all. the first 3 days after the infusion - i felt great - felt like a fog had been lifted off my head. Then this past Wed - so about 5 days after th infusion noticed my hands were stiff and sore in the morning and then just kept being sore. They were also a bit puffy - rings felt tight. They are still sore - my thumbs in particular. Never noticed this before. I saw my family dr on thursday to get new thyroid dosage and mentioned this to him - he said yes its common after the iron to have swelling. Just wondering how long will this last? Anyone have this with their iron infusion? Its not dibilitating - but uncomfortable.

I Found This Very Interesting

01 December 2012 - 06:30 PM

Before the doctors brought up celiac for me (still waiting on my results) i heard on the news that in Europe it is part of their regular work up to test for gluten allergies in children. Now - I don't recall if they are looking for the DNA test or searching for the anitbodies or just doing it as an allergy test but found that so interesting. Its a shame in North America it seems so hard to get them not only to test for it - but so hard for doctors to even consider gluten as a cause. I don't have anything diagnosed yet - but have been suffering from low iron for years - put on supplements, shots and no help. My hemaglobin got so low once I was very close to transfusion level. However my dr just kept pumping me with iron and not looking for a cause other than blaming it on heavy periods. Finally had a dr who ordered a check on my folate - go figure low in folate and just over minimal values for B12 - even though I eat a diet very high in folate and iron.
Anyways -thought I'd share that - i hope it becomes common place here to help others avoid what we go through prior to diagnosis (official or self diagnosis).

My Long Journey Here....

29 November 2012 - 07:30 PM

My journey began around 2 years ago - went to the dr cause i had swollen lymph nodes, night sweats extreme fatigue and fequent low grade fever and just general feeling like crap. I went from an active (overweight yes but very active) person - worked out 3 times a week, have 3 kids doing stuff to barely able to just go to work. they ruled out some obvious things like TB etc. At that time my hemaglobin was low and had high CRP/ESR values. Dr sent me for CT scan and lymph nodes were swollen so sent for biopsy - neg but reactive. sent to another dr who did gallium scan - came back positive for inflammation in bone marrow. First hema didn't do much except blame my low iron - put me on iron pills (again - have been on before no help and even had shots - no help). CRP was still climbing. Also had a positive FLC test. This all came about in May. CRP was at 41 (not to be higher than 8). Iron was at 6 needs to be at least at 12. I started doing atkins to loose weight - started April 21. so that means no pasta, bread, flour etc. Now I know you can get gluten in other items but had a drastic reduction in my gluten. Since April I have lost 50 pounds. My night sweats have stopped, fevers have stopped. Still very fatigued. Got sent to a new hematologist - who found my ferritin levels were below 10 (paper didn't give a number just the <10) iron had dropped to 5, low folate levels, and my TIBC, saturation and MCH and MCV were out of whack (can't remember which one was high which was low) all indicating I had iron anemia. I had been on the pill for more than 2 years which made my period pratically non exisitant so its not menstral related. i just went off of it last month. I also eat a very healthly diet for iron and folate - big green salads daily or rapini, brocoli, aspapagus and lots of meat etc. Miraculously my hemaglobin has been the highest its been in years at 128! I'm usually never over 110. My CRP had decreased to 20. The dr brought up Celiac - I'm thinking this makes sense and with my CRP dropping with my diet change might make sense. Now I wonder the testing they are doing for celiac if it will show up with this diet change - as I said i am not doing a gluten free diet as i know its hidden in other foods. oh and I have had graves disease so not a newbie to these "wonderful" autoimmune disorders. She gave me an iron infusion as she was very concerned with my low iron levels and put on a folic acid suppliment. She is calling me this week and I will mention about the diet again - i don't think she realized the timing and ask her if she thinks the CRP decline is a co-incidence or not. I went to my family dr today to get a new dosage of my thyroid meds cause it was too high - i guess due to weight loss i need to decrease my meds. My hema was really concerned with the CRP - wondered what was causing all this inflammation and where it was in my body. I also get diarhea frequently for no known reason (never put this together with the initial symptoms that took me to the dr) as i have always had it on and off for years - blamed bad stomach. If i have had minimal gluten for the last 6 months - will this affect the blood results? Does this sound like it good be Celiac? Thanks for any input!

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