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ohsotired

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About ohsotired

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  1. A designated gluten free kitchen and bakery have opened in my town. I was so excited because I can't seem to eat anywhere and trust that the food is safe. I was given a gift of some beautiful granola from the place and as I went to grab my first handful, I realized that it had oats in it.

    I have had the Bob's Red Mill Gluten Free oats in the past and they caused a flare up so bad that my neck and shoulder were immobilized again from the pain. They also gave me gas and bloating and other stomach issues. That was the only thing I changed. I am convinced it was from the oats.

    I don't think it's fair that they are deciding that their bakery is gluten free and they don't even realize some people are sensitive to oats, too. I have had cookies there and had horrible stomach pains from them.

    Since being gluten free, I have gotten my life back. There is no way I would risk it for a cookie if I had known they had oats in them.

    I think this is irresponsible, but maybe just on my part. Please watch where you go and what you eat. Even well-meaning people can cause you harm.

    I am so sorry that you are ill, but I do want to point something out here.

    YOU need to take personal responsibility also. You said in your post that BRM gluten-free Oats have made you ill in the past, so common sense would say that you should take the time to ask for a list of ingredients before eating anything, or take the risk and possibly have a reaction.

    If this bakery is catering to a gluten free crowd, I would bet that they would be perfectly happy to provide you with an ingredient list so that you can make an informed decision.

    I understand about being excited about trying a new place or product, but if you get so excited that you forget to ask about ingredients, then it's not fair to blame the bakery.

    The reminder to be careful is a good one, but personal responsibility has to come in to play here.

    I hope you recover soon. It sucks to be sick from your food. :(


  2. A new Gluten Free restaurant in Plano!!!!!!!!!!! Whoo Hooo... That's where I work and live close by. Where are they going to have their restaurant?

    Ohsotired: Which PF Changs do you go to? I'm at Plano Pkwy and Preston.

    Actually, I have never been to a PF Chang's either! LOL Been dying to try it, but the hubby isn't fond of the place, so I've never been.

    We should go!


  3. The chemo I am taking is Remicade with lots of drugs thrown in at each session. heavy doses of Prednisone, lots of bendryl, double Venofer, B12.

    I haven't tried PF Changs yet. Do you live in north Dallas?

    Nor_TX I'm sorry your coworkers are so insensitive!

    I DO live in north Dallas, so if you ever want to go grab lunch or something, just holler.

    I don't participate on the boards here much anymore but I do still lurk.

    Kareng - please do let us know about the new restaurant! I would frequent it for sure!


  4. Is it joint pain? I got this too, just before going gluten free. It started in my pinky on my right hand, and then spread to my ring finger, and then into my middle finger. Once in a while my entire right arm will ache - feels-like-my-bones-are-about-to-explode aching. And the pain will radiate down into my thumb too. But only in my right hand/arm with any consistency. Once in a great while, my left side will ache, but nothing like the pain I feel on the right.

    I had xrays done by a chiropractor (he said he would be able to tell if it was RA on an xray) and they said it looked like the beginning of osteoarthritis. I started taking glucosamine-condroitin, and in just a couple of short weeks, the pain is better. Not gone, but better.

    Hope you can figure it out and get it solved soon!


  5. If you can get your doc to test hormones (or find a doc that will), it would be worth it to have them checked out.

    The chiropractor that I work for said this:

    If your hormones are perfectly balanced, you shouldn't have ANY PMS symptoms at all.

    Now I don't know that I believe that I'd have NO PMS symptoms if everything was perfectly balanced, but I certainly DO believe that my PMS symptoms would be less extreme. Unfortunately, I have other things going on in addition to the progesterone/testosterone deficiencies that need some serious attention also.


  6. @Jackpru - thank you for that. I will keep that in mind if I can't find a doctor that can help me.

    @GFinDC - thank you for that as well! With the current shortages of natural thyroid going on, that may be the only option for a bit.

    @pele - thank you for the resources - I am already well versed in STTM and a member at the yahoo group. I may end up ordering the 24 hour saliva cortisol myself, since I have struck out on doctor's thus far. I still have a few doctors to investigate though, so I'm not giving up hope yet!


  7. Deb,

    Thanks for your reply.

    I totally get the "you look fine".......got that just yesterday with a doc that I really thought was going to be able to help me. :(

    I am starting back on iron supplements, and thinking of exploring the iron infusions again (my GI wanted me to have those done back in March, but I resisted).

    Vit D is in the toilet as well. I don't have the energy at the moment to dig out the labs, but I know it was pretty low. So I'm starting on Vit D supps as well.

    B12 hasn't been checked since last year sometime, but at the time it was 612 or something like that. I supp'd for a while, so it may have come up some, but no one has bothered to check it again lately.

    My body temp averages in the low to mid 96's. Yesterday's average was 96.03. I've been charting and keeping track.

    I showed the chart to the doctor I saw yesterday and her comment was "Interesting. Your temp was spot on 98.6 when you came in here." Then she set down the chart and walked out. <_< That appointment didn't go so well IMO.

    If you think your adrenals are in trouble, you should pursue that. It's like pulling teeth with most doctors, but there are some really good ones out there that know how to handle that and get you feeling better. I have tons of information on it if you'd like to do some reading.

    Thanks again for your response!


  8. maile - thanks for responding. You got it right! I posted on a thyroid forum and was told almost word for word what you said. :) But I was also told that I really needed to handle my adrenals first, and I agree.

    I pretty much fired my GP after she looked at my TSH only and told me that I was fine. She gave me the "get more sleep, exercise more and eat better" speech. Hmmmm, well I eat pretty well (not perfect, but pretty darn good), I can't exercise all that much because I'm too freaking exhausted, and I already sleep 10-15 hours a stretch if left alone. Really? There's nothing wrong with me? Hmm, how about the gobs of hair that clog my shower drain every day? Or the fact that my average daily body temp has been as low as 95.8? Or the dry skin, eyes, sinuses and mouth? Does that mean anything to ya? No? Well, I must be fine then! <_<

    Sorry for the rant! I am just so tired of the "everything's normal" routine.

    If your GP won't take you seriously, find one that will. You deserve to be well.


  9. Georgie,

    I'm sorry, I guess I'm not making myself clear - brain fog will do that!

    They did run the specific test for FVL - and that was negative.

    They ran tests for APS (Anticardiolipin Antibodies and Lupus Anticoagulant) - LA was negative, but the aCL's showed a very weak positive on one of them.

    Protein C Activity noted as "functional"

    Protein S Activity noted as "functional"

    Antithrombin III Activity 109 (range76-128)

    ANA 1:40 Speckled, Homogenous pattern

    Homocysteine 7.9 (range 5.0-12.0)

    MTHFR - C677T Mutation, Heterozygous/A1298C Mutation, Heterozygous

    I think that's everything on this set of lab sheets.


  10. What it boils down to really, is that the hematologist that I saw regarding this clotting disorder stuff just plain sucked. <_<

    I did not have paper lab results in hand before going to see the hematologist. Mistake numero uno.

    They did test FVL, and they did test APS, amongst a bunch of other things. That's why I offered to post those test results, to see if you could see something there.

    B12/Folate was last tested in March. B12 was 601 (range 200-1000), Folate was 12.6 (range >5.4).

    I supplemented both for a while, after the discovery of the high homocysteine, and need to have these retested.

    I have not had saliva cortisol, but will be asking the doc about it this week. If she won't/can't order it for me, then I'll just order that myself before starting on any type of treatment.


  11. Georgie,

    I have the results, but had trouble discerning from them exactly WHAT clotting disorder they were saying I had. The handwritten note on the lab results I mentioned above was written next to the results for PROTEIN C ACTIVITY and PROTEIN S ACTIVITY, but those results are within the lab's stated range.

    There's a TON of tests there, but I can post them for you to see if you think you could help figure out what that all means. All I know is that no one mentioned it specifically (not even the hemotologist - he mentioned high homocysteine and MTHFR mutations, and said we just needed to retest in 6 months).

    I am aware that taking cortisone during testing skews results.

    I am also aware that my B12 is/was in the toilet. I was supping for a while, and need to have that retested.


  12. Hi Georgie.

    I've been advised on another forum (thyroid forum) that cortisol is in the crapper. I unfortunately am a smoker, and drink coffee all day - both of which actually raise cortisol - so I can only wonder what cortisol level is truly at. :blink:

    I've also been advised that Free T3 and Free T4 are both low, but I really need to address adrenals prior to doing anything about thyroid.

    I've also found some information tells me that I need to have ACTH tested, as I suffered sever head trauma as a child, and I could have a pituitary issue going on.

    B12 & Iron were last tested in March. B12 was at 601 pg/ml, Total Iron was 34L. My GI recommended iron infusions, but I opted for pill form instead. I'm now considering the infusions.

    To be honest, I'm not 100% certain what clotting disorder I have. I was tested for FVL and something else. The doctor never even mentioned it, but when I got lab results in hand, it said "positive for clotting disorder, but very mild. Recommend 81mg aspirin daily." :o

    Hoping my new doctor can help me put it all together and make some sense of it, and help me feel well again.


  13. Hey gang! I haven't been too active in participating here lately (been reading, but very little posting) due to extreme fatigue and feeling VERY run down.

    I have a TON of hypothyroid symptoms, as well as hypoadrenal symptoms, and I just got some labwork back.

    I know that I need to treat my adrenals first, but I'm looking for input specifically on my thyroid labs so I can be well informed when I go to my follow up to discuss a plan of action with my doctor.

    Latest labs:

    FERRITIN 11 (10-220) - Will be starting supplementation ASAP

    OSMOLALITY, SERUM 281 (270-305)

    CORTISOL, RANDOM 8 (2-25) [blood draw, about 10:30am]

    DHEA SULFATE 220 (35-430)

    PREGNENOLONE HIGH 150 (15-32)

    VITAMIN D, 25 OH 31 (30-60) - Will be starting supplemenation ASAP

    FREE T4 1.31 (0.73-1.95)

    TSH 1.3 (0.3-5.1)

    FREE T3 3.2 (2.3-4.2)

    THYROID PEROXIDASE AB <10 (<35)

    THYROGLOBULIN AB <20.0 (<40)

    I do have some other labs related to thyroid I can post if needed, but they are from 10 months ago.

    Thanks in advance!