Jump to content



Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


ohsotired

Advanced Members
  • Content Count

    352
  • Joined

  • Last visited

2 Followers

  • Live2BWell
  • JesikaBeth

About ohsotired

  • Rank
    Star Contributor
  1. hannahp57 - I'm so sorry you were so sick! Glad you got a dx and are on the road to recovery! My first few periods after going gluten-free were a breeze as far as PMS symptoms went (bloating, cramps, moodiness, etc). Then I had the month long ordeal, and since then everything is like it used to be. Cramping in my lower back/lower abdominals, bloating, extremely irritable, etc. I sure hope it goes back to little or no PMS symptoms, because this is the pits!

    fripp07 - Thanks for posting! Sounds like you had quite the ordeal as well! Glad you're on your way to recovery! My doctor has advised against me going on any form of BC that contains any type of hormones (pills, IUD) - I'm 34, still a smoker (working really hard on that part) and have a "mild clotting disorder" so blood clots are a risk. I'm actually leaning very heavily towards Novasure/Essure (endometrial ablation, permanent BC ie tubes tied). That won't help at all with symptoms, but it will help with the heavy, long periods.

  2. Di_gfree,

    Thanks for posting. :)

    I went ahead and started on a sublingual B12 (methyl type), but that is more of an effort to see if I can bring down my homocysteine levels with it (taking folic acid too). I'm taking 1500 mcg a day right now of the B12, and hopefully that will help some.

    How often are you having bloodwork done to check your levels?

    I still haven't heard anything from the hospital regarding the iron infusions. <_<

  3. Thanks for replying, kvandorselaer!

    I still haven't heard from the hospital about the infusions (scheduling, insurance, etc). I'm getting a little antsy about it.

    I went to the health market yesterday and talked to one of the guys there that is super knowledgeable about all the products, and knows quite a bit about Celiac and all the things that go with it, and he recommended an iron supplement that's an "organic whole food complex". He said it was the easiest thing on the stomach there was. I think I'm going to try it and see how it goes.

    Does anyone have any input on the bloodwork results I posted? I'm just thinking that perhaps they didn't do all the testing they should have.

  4. Got the paper copy of the latest blood tests. I'm thinking we're missing a few things. What do you think?

    Iron, Total....................34 L (Ref 40-175 mcg/dL)

    Iron Binding Capacity......406 (Ref 250-450 mcg/dL)

    % Sauration..................8 L (Ref 15-50%)

    Vitamin B12.................601 (Ref 200-1100 pg/mL)

    Folate, Serum..............12.6 (Ref > 5.4 Normal)

    I don't see Ferritin listed - that's not the same as the Iron Binding Capacity, correct?

    And my hematocrit hasn't been tested since last July, and then it was 45.5, which the lab flagged as High.

    My B12 and Serum Folate were tested last July, and they were 634 and 24, respectively. So there's definitely been a change there.

  5. I guess I'm sorta concerned about the plan to try infusions first, rather than something you swallow. There will always be more risks associated with putting something directly into your bloodstream through a needle.

    I'm not trying to second guess your doc, just make sure you've considered all angles before making your choice.

    My guess (and it's only a guess, since I don't have copies of the labwork in hand yet) is that my iron is low enough that he thought the infusions would be a quicker way to get the iron back up.

    At my appt , he expressed concern that supplements may not absorb properly and that they may cause GI distress.

    I haven't made my decision yet as to whether or not I'm having the infusions done. I'm leaning towards a yes, but I'm still open to hearing pros/cons, and I also want to know how many they think I need and how often, so I can see how much of my life I will need to re-arrange to have this done. :)

    I have had 11 infusions of Venofer. I feel so much better. Make sure to tell the nurse if there is any kin of reaction. I got an excrutiating headache and the chills from the infusion until they started running it over a longer period of time.

    DakotaRN - I will definitely note ANY type of reactions, if I do this.

  6. TrilliumHunter - How often are your treatments? Once a week? Once every few weeks? (Again, I know it will vary from person to person......just curious.)

    It would be nice not to have cold hands and feet any more! Mine are always ice cold, and have been for as long as I can remember.

    I can definitely see how having treatments done at a chemo center would change your perspective on things. My visit to the hematologist a couple weeks ago sort of did that for me, and that was just a few minutes in the waiting room.

    Thanks for sharing! Hoping they call soon to set this up!

  7. Thanks for the responses!

    Really, I think the possibility of an adverse reaction is my ONLY concern, and as long as I am in a hospital and being monitored for it, I think all will be ok.

    TrilliumHunter - not thrilled to hear about the yucky taste, but can deal with it, for sure.

    I realize it probably depends on the severety of the anemia as to how many treatments and how often, but would you mind sharing how many/how often you are getting?

    j - I think she's just genuinely concerned, and is relaying the bad things she's heard because she doesn't want it to happen to me if there's another way. She forgets that people with celiac disease have absorption issues, and I think that's why she's been pushing the nutritionist and the supplements. She knows how tired I've been and the issues I've been having, so I really do think she just wants to see me get well again. (She's not going to talk me out of it! wink.gif)

  8. I was just told I have a pretty bad iron deficiency (due to Celiac malabsorption and/or crazy irregular menses) and my GI has suggested I go for iron infusions rather than bother with pills. He just doesn't think those will absorb properly, and that the infusions will get my iron levels up faster.

    I've been doing some research (as always ;)) and reading about possible side effects, what to expect when I go for the first infusion, etc and so far it doesn't seem like a big deal. I'm a tad concerned about an adverse reaction to the drip, but know that the first infusion is typically done in a partial dose and very slowly to watch for reactions, and then proceeds if no reaction is noticed.

    I mentioned the anemia and the infusions to a friend of mine (via text conversation) and she said this: "Iron tastes bad and stains - also can have a very bad effect on your kidneys fast"

    I wrote her back and said I could deal with the staining and the bad taste if it made me better, and that I hadn't found anything indicating possible damage to the kidneys.

    She writes me back again and says "They will shut down and have to get blood transfusions"

    So my first thought is to call BS and that she doesn't know what she's talking about because I haven't seen anything in my research that said ANYthing about possible kidney issues.

    (She's pushing me to go to her NP for nutrition counseling, and I plan to, but I don't think this will be easily fixed with nutrition alone - at least not very quickly.)

    Buuuuut.....I want to be fully (and correctly) informed about this before making the decision to do it. Is there any truth in what she's saying? Are there other adverse effects I might not know about?

    I'd like to hear from those of you that have had this done and are in the know.

    Thanks!

  9. Another update.......

    My iron is apparently low enough that they're suggesting iron infusions.

    They say my B12 is fine.

    Haven't seen actual numbers yet, but they're on the way in the mail.

    So this could be the reason for the weird dizzy spells, the fatigue, and the recent RLS type symptoms. I have no idea yet how many infusions they will want to do, but should hear something in the next week or so.

    In regards to the 'female issues', so far no other really weird cycles (knocking on wood - can feel symptoms of the next one coming on).

  10. I just wanted to report back on our experience at Fogo de Chao.

    Phe-NOM-inal!!! :)

    They seated us as soon as we walked in. We ordered a bottle of Riesling (oh so yummy) and even before the wine arrived, one of the hostesses arrived at our table and said "I understand we have someone here that requires gluten free?" (My husband was floored - I made the reservations, online no less, and he had no idea that I had mentioned this in the comments when I made the reservation). He just looked at me with wide eyes, and I told the hostess that it was I that required the gluten-free foods.

    She informed me about the chicken, and certain items on the salad bar (really only the dressings I think, weren't safe) and then some dessert items, but of course made sure to tell me which ones were ok. She was very knowlegable about the gluten free diet.

    She never mentioned sausage, but I never saw sausage being brought around either, so it must be different at each location.

    The Pao de Queijo (Brazilian Cheese Bread) was SO delicious! The hostess told us that it was made with Yuca flour (which after some research appears to be similar to tapioca?). Warm and crispy on the outside, and a little gooey on the inside - just wonderful. I was thrilled that I could eat it!

    So we stuffed ourselves silly with steak, parmesan pork, lamb chop, and more, with sides of crispy fried polenta, mashed potatoes, Pao de Queijo, fried bananas, and wine. Then we shared creme brulee for dessert.

    Somewhere throughout the course of the meal someone asked if we were there for a special occasion, and I mentioned hubby's birthday. The creme brulee came out on a big white plate with the words Happy Birthday written around the edges in a fruity syrup, with berries on top, and a single birthday candle. :) And to top that off, when we received the bill, they had comped the creme brulee. :)

    Oh, and as we were leaving, another hostess came out with our coats, and they even helped us on with them! The overall service at this place is just amazing!

    The hubby and I don't get to go out very often when it's just the two of us, so this evening couldn't have been more perfect. The service was top notch and the whole experience was five star.

    We will definitely go back - once our tummies and our wallets have recovered. ;)

  11. Yes, I think the one in Addison is the only one here, and that's where we're headed! :)

    What you mentioned as far as prices sounds about right. I've never been there, but my hubby has eaten there several times (on his company's dime ;)) and he said that lunch is a little less expensive but that it's totally worth it whether it's lunch or dinner.

    I may indulge in some wine, but it won't be much! I think I'm more of a lightweight now than ever before! LOL

  12. Still waiting on the results from the iron/B12 testing, but got my test results that indicated the MTHFR/homocysteine/ANA issues.

    And I'm PO'd. There are notes written on these lab results (although not sure who wrote them), and no one ever mentioned ANY of what was written here!

    Such as..........

    Anti-Nuclear Antibodies...............POSITIVE

    SPECKLED PATTERN

    HOMOGENEOUS PATTERN

    H 1:40

    (handwritten notes say "we can retest in a year and she can tell her PCP about it")

    Ummm......yeah. If no one tells me, how can I tell my PCP?

    And this, written next to the Protein C Activity and Protein S Activity results........

    "Tell her she is + for a disorder but a very mild one. I would recommend 81mg of aspirin daily & have her tell any doctor before any surgery"

    The hematologist never mentioned any of this, so I'm thinking he didn't see these results. He just took the 'wait 6 months & see' stance. But he mentioned 'elevated homocysteine' levels, which there are no notations next to on the lab results at all. (Homocysteine was 7.9 with a ref range of 5.0-12.0)

    So what do I do with this information? Should I seek another hematologist's opinion, with all my lab work in hand? Or should I make that appt with the Rheumatologist and go armed with all this info?

    Oh, and the MTHFR mutations I mentioned were C677T and A1298C, both heterozygous. Whatever that means. (I did some research but can't wrap my brain around it at the moment......)

    :blink:

  13. Yep. From what I read (and it was just super quick reading), folic acid and B12 supplements can help bring it down. He didn't say how elevated it was though, just wanted to wait 6 months and test again. My thinking is that I suffered with the digestive issues for so long before figuring out what it was, I'm not real keen on the "wait and see" attitude. I'd rather be proactive about it.

    But I'm not a doctor so what do I know, right? ;) Hmmmmm.......is 34 too old to go to med school? LOL

    I know I'm not lazy. But dang do I feel that way a lot lately. And I'm not great at expressing just how tired and run down I'm really feeling, so the family doesn't quite get it. Which doesn't help any.

  14. I think that's a big part of what's compelled me to post about all of this, Jestgar. If it could somehow help someone else jump through less hoops, or spark some questions they hadn't thought of to ask their doctor.......

    I have to admit, though, I'm tired of this. I'm tired of seeing doctor after doctor, and I just want some answers. But I feel guilty about feeling that way too. I know there are members here who have more serious and more debilitating symptoms than I do. I think about that, then I doubt myself......"maybe I'm just lazy, not exhausted". Oh that lovely mental merry-go-round in my head. LOL

    Anyway, I'll keep posting updates on this until we figure it out.

    Oh, I remembered another thing the hematologist said. Apparently I have two mutated MTHFR genes. I don't remember which particular genes though. I have lab results coming in the mail, and hopefully I can decipher it all. He didn't seem to think this was a big deal either.......

  15. Saw the GI yesterday.......love this guy more every time I see him. He's obviously done his research (he knew very little about Celiac when I first saw him, but he was willing to learn, and obviously has).

    I explained to him some of the things that had been going on (the irregular period, the extreme fatigue, the ice eating - think I forgot to mention the dizzy spells though) and he had his PA do a blood draw to check for low iron & B12. He's also referring me to a rhumetologist (again - he referred me back in August after I mentioned joint pain in my right hand, but that went away and I never made the appointment) because of some other things I mentioned to him (extremely dry, itchy skin, dry gritty eyes and dry mouth, among other things) and the 'elevated ANA' the hemotologist mentioned.

    So I'm waiting on blood test results and will be making an appt with a rheumetologist.

    Sigh. I just want to feel good again. I hope we figure this all out soon!

  16. Whoops.........one small typo in my last post.......B12 was 634 (not 34). But again, that was last August, so it could be very different now, especially after the whackiness my hormones and total body seem to be going through.

    I think I will have it checked again, along with the ferritin too. And I think a visit to the endocrigologist may be a good idea.

    Funny you asked about restless legs and leg cramps......

    The restless legs started a few months back, and I didn't think much of it except that it was really annoying. I've had pretty severe leg cramps the last few days, but only in my right leg.

    So I'll mention all this to my GI on Wednesday, but I think I'll be calling either my GP or that nurse practioner in the morning to see when I can get in. I sure don't want to wait the six months the hematolgist recommended. :blink:

  17. Thank you for responding, and for the link, disneyfan.

    RE: this being the beginnng of menopause, it may well be. My mother went through it very early, and she keeps telling me that alot of what is going on sounds familiar.

    In response to your questions.....

    In all the testing that was done, did anyone check your thyroid levels?

    My GP tested my thyroid (along with a bunch of other stuff) this past October. Doc said numbers were fine, but after getting test results and posting here, some said that my numbers were low.

    I tried to approach that subject with my GP, and she promptly referred me to an endocrinologist (to which I haven't been to see yet). I got the feeling that she was referring me not because she thought I needed it, but rather to appease me.

    Results as follows....

    Thyroxine...............6.6 (Range 4.5-12.0)

    T3 Uptake..............33 (Range 24-39)

    Free Thyroxine..........2.2 (Range 1.2-4.9)

    TSH......................2.012 (Range 0.450-4.500)

    [TSH was also checked last July, with results being 2.238 (Range 0.350-5.500), if that matters]

    ANA, Anti-dsDNA, RA Factor, Sed Rate and C-Reactive Protein levels were checked at this time as well. All those also came back "normal" (can post numbers if you like).

    Also, have your iron levels (ferritin) been checked?

    In all of the test results that I have in hand, I do not see a test (or tests) that specifically say iron or ferritin. I don't have the results in hand from this last round where they were checking for the clotting disorder, but I don't think that's something they tested for. Won't know for sure til I see the paperwork.

    The only other thing I see here that may be relevant (outisde of the CBC tests I initially had done back in July) are Folic Acid and B12, done in August of last year at the same time my Celiac Panel was run.

    Folate (Folic Acid), Serum............>24.0 (Range>5.4)

    B12................34 (Range 211-911)

    I am not currently taking any vitamins. I know I should be, but I was a little leery about making the decisions myself on what I needed - I guess I wanted a dr. to tell me what I should be taking, but my doctors have never brought this up. I'm not sure any of them really knows much about Celiac and all the stuff that goes with it. :(

    A good friend of mine just referred me to a nurse practioner that she sees, thinking maybe the NP can help me put this puzzle together. She does everything from nutritional counseling to lab work to gastrointestinal disorders. Maybe it's worth a shot to go see her.

    Any other thoughts are welcome. I'm at a point where I think I've got the Celiac/digestive issues in check, but I'm tired.......so tired (physically, emotionally) of these other seemingly random things that are going along with it.

  18. Back from the hematologist, and wanted to update before I forgot anything he said. ;)

    Homocysteine levels are "elevated, but not enough to be concerned with right now" (I haven't seen actual blood work results on paper yet) and ANA is "on the lower end of high" (haven't seen those results either). He doesn't think either of these are things that require immediate attention, but that should be retested in six months.

    Not sure what to make of this information. On one hand I'm a little concerned about waiting 6 months to re-test and then go looking for additional issues if my numbers are still high. On the other hand, I don't know which doctor to express these concerns to (GP, GI, OB/GYN, or other?).

    I don't know if any of this is related to Celiac or the female issues I was/am having.....

    I think I'm a little overwhelmed at trying to figure out what else my body is trying to tell me. :(

    Thoughts?

  19. ang1e0251 - I think you may be on to something in regards to the iron levels - I just realized that I've been eating ice constantly for the last several weeks. I realized it as I was sitting here, you guessed it, eating ice! I know that is believed by some to be a symptom of an iron deficiency.....

    Not sure if I'll run by there tomorrow or just wait til Monday and ask the hematologist - I know he will have copies of this last round of blood work. I'll be sure to take all my results from all the testing I've had over the last 6 months so he can compare numbers if he wants to.

    Will be back to update as soon as I know more.......

    Thanks for all the input everyone!

  20. Thanks for posting that link, Jestgar.

    These dizzy spells are kind of strange......they're not like the 'head rush' type where you feel lightheaded and see stars or darkening vision. They're very brief (3-10 seconds or so) and it's like my head is 'buzzing' (think of an off air TV station or radio station with the white noise, and add in a buzzing, and that's the best way to describe it - or like a hive of bees). My field of vision doesn't darken or get 'starry' but it almost feels like my eyes are moving quickly back and forth (horizontally - think rapid eye movement when someone is sleeping, but faster). Really loud noises can trigger it. Too quick change of direction or quick head turns can trigger it. And sometimes it just happens while I'm sitting and talking to someone. But it's not constant, or predictable.

    I can't really link it to blood sugar levels/being hungry, although sometimes I do get episodes like that if I don't eat as soon as my body says I need to.

    I'm going to try to keep track of when it happens over the next few days and see if I can narrow down any other triggers for it. And I'll be mentioning it to the hematologist on Monday, and my GI on Wednesday, and then my GP if necessary. (Geez......how many doctors do you have? :blink: )

  21. Another update.......

    Day two of this period was pure hell. The worst I've ever had (or that I remember anyway). Cramps were so bad, I ended up taking 10 ibuprofens throughout the course of the day, and I rarely take them for anything anymore. Bleeding/clotting was really heavy, and I was convinced that my uterus was going to fall out. :( Day three wasn't so bad, and I think I'm almost done (knocking on wood).

    However there's another twist to this. All the testing that I thought was normal, isn't.

    What I got in writing was only the results of the biopsy and the pap, which were fine.

    The blood work wasn't back yet.

    The blood work I was sent for was to check for a clotting disorder. The doc recommended it based on some family history (sister had a clot a few years back) and she thought it better to be safe than sorry. So I get a phone call yesterday, and the nurse tells me "there were some abnormalities on your bloodwork, we're referring you to a hematologist to have it checked further." I'm seeing the hematologist on Monday afternoon.

    I don't know if this is a big deal, and if I should be worried - but I am. :(

    I have some other weird things going on too (namely, strange dizzy spells that hit several times a day but never last more than a few seconds) and I don't know if it's all connected somehow.

    Maybe it's just random, isolated weirdness. Or maybe it really is the beginning of menopause.

    *Sigh* I'm not real fond of being a female right now.

×
×
  • Create New...