Celiac Diseae

Discussion in 'Fibromyalgia Main Forum' started by louiesgirl2, Jul 5, 2005.

  1. louiesgirl2

    louiesgirl2 New Member

    Have to be tested for this. Turns out this also can be a cause of FM. I have been having difficulty with gluten. Seeing PCP on 22 of July. He will test. In the meantime, I am taking myself off of anything with gluten. Only flour I can have is corn or rice or millet. Oh my, I love whole wheat and rye.

    Let you know what happens.
  2. tracii

    tracii New Member

    It surely isn't fun & I may not be as "up" on my research as I should be. I have had Celiac for years now so if you have any questions or just want to vent, whatever, I'm here for you.

    There are many other flours you can have! Have you found a good health food store that carries GF products? You'll find you will be amazed at what you actually can have. Though, I have to admit the "real" thing is so much better. I'm just dying to have the time to binge on all of the foods I can't have & pay the price of being so very ill for a few days following.

    I was not actually dx'd with Celiac as at the time the Gastro. wanted me to go back to eating gluten for 2 weeks. (A few years ago there was no blood test mentioned to me).

    I knew what was going on though & after having a Grand Mal seizure from malabsorbtion & malnutrition there was NO way I was going to go back to ingesting gluten.

    Well, again, if you have any questions, etc. just let me know! :) ~Tracii~
  3. louiesgirl2

    louiesgirl2 New Member

    It is times like these I wish we could e-mail of IM each other. I have sooo many questions. Yes, I have a store called Whole Foods and I will be there Friday evening researching the GF foods.

    I feel so bad, because my hsuband made me a batch of whole wheat pancakes so I can have breakfast b4 I go to work every morning. Now I won't be able to eat them. Oh well, he will have to.

    Thanks again.

    Phyliss
  4. monicacat

    monicacat Member

    If you stop consuming gluten before your doctors appt. they won't be able to measure any antibodies in your blood. I made that mistake, and now I'll never get a definite diagnosis, because there's no way in He!! I'd ever eat it again.

    Seriously, I'd rethink forgoing the gluten before your test.
  5. angelkisses6

    angelkisses6 New Member

    hi i was told that i have celiac about 4 years ago now,yes its hard but beleave it or not you find ways to cope and new food to eat,mind you you will try some that taste well like use your inmagination,lol and then theres some that are really good and more stores are carrying more g.f. food, i also have fibro,chronic fatigue,diabetis,arthritis,cornanary arterie desise,and cant spell for crap,lol,anyway with supoort groups like this it really helps,take care and i hope all gos well for you,marieann
  6. pam_d

    pam_d New Member

    I'm surprised your docs told you to stop wheat consumption---yet. They usually tell you TO EAT wheat/gluten before the test, otherwise you won't get an accurate reading.

    I was tested routinely at my allergist, along with many other typical allergy tests. I came back negative for celiac, but my doctor said it was probably because I seldom ever ate it---I'd been avoiding it for several years, actually, because I can tell it makes me sick with a whole host of symptoms. My allergist said to get a true reading I'd have to start eating wheat for a couple of weeks, then test. I just opted to continue a gluten-free life anyway, though I make mistakes occasionally.

    Let us know what you find out at your appt., but don't stop the wheat til after the test. There are a lot of great celiac websites with good suggestions, recipes....

    Hugs,
    Pam
  7. louiesgirl2

    louiesgirl2 New Member

    if I continue to eat wheat and still get sick. I work, and have been late several mornings because of my spending time in the bathroom in the mornings, and not sleeping well because of the side effects.

    Is there anything I can do right now to help? I understand the reasoning behind continuing to eat gluten until tested. I will continue to do so. Just need to know what I can do to make things easier.

    THANK YOU ALL FOR YOUR HELP.
  8. monicacat

    monicacat Member

    Maybe you could call your doctor and ask if he could give you the order for the test now. That way you could have your blood drawn, and then you can stop the gluten. And, as an added bonus, he'd already have the results by your visit.

    Good luck!
  9. Empower

    Empower New Member

    How do they test you for celiac? What are the symptoms?
  10. louiesgirl2

    louiesgirl2 New Member

    Monica-I will do that. Good idea.

    Thanks
  11. neen85

    neen85 New Member

    and am having a "live blood" done by another practitioner to find out for sure if there are problems (apparently the live blod analysis tells what kid of shape your upper intestines and lower intestines are in.

    Somone else posted an article about it,saying that both the biopsy and blood test could be negative and you could still have a "gluten allergy".

    Anyway I AM STARVING....I live in the boonies..a bunch of very small towns in southeast Kansas. We are about 2 1/2 hours away from any major city that would have any alternative flours or gluten free products or cook books.

    I have no options for ordering on line and I hear they ar very expensive (is that true?).

    I don't make it to the end of the month as it is. My naturopath diagnosed me....."tested" and said I could have the protien shake (MetRx)that I use (by kinesology testing),but I thought we COULDN'T have maltodextrin????? Anyone know?? Daneen

  12. tracii

    tracii New Member

    You CAN have. Malt & I believe Dextrin you cannot. Maltodextrin is not malt or dextrin. Ooh, where is that link! Try celiac.com. I *think* it is the site where you can print out a list of "Safe" & "Forbidden" foods & ingredients to stay away from. Gluten has many different names. You will find yourself reading labels of EVERYTHING.

    Remember to NOT lick envelopes or stamps (the glue contains gluten).

    It surely isn't just giving up the obvious foods. Most all soups have gluten (there went my easy chicken & cream of mushroom soup cassaroles! + green beans with cream of mushroom soup!) I have been meaning to write to Campbell's about the need for gluten in their products. Also finding bullion (sp?) or "stock" is very hard.

    You have to make sure all of your medications & vitamins are GF too.

    Check out celiac.com though, I'm pretty sure that is the site with the "safe" & "forbidden" food lists are. They are extremely helpful to bring to the grocery store with you. Oh yeah, anything that says "modified food starch", "modified corn starch", etc. ~ put it back on the shelf, as well as "artificial or "natural flavorings".

    The lists I mentioned above will help greatly & answer most questions about what ingredients you can & can't have.

    Hope this helps! Good luck! ~Tracii~

    PS: A small loaf of bread goes for about $6.50 ~ & trust me, the premade bread, well, I wouldn't count on eating sandwiches. There are some bread mixes that are much better but it's tough to make sandwiches. Toasting the bread, making grilled cheese sandwiches or french toast are your best options. One exception is (I forget the brand name but I think you can find it online) "Favorite Sandwich Bread" ~ it's a mix but you can get a decent amount to make sandwiches with & it does taste good.
  13. louiesgirl2

    louiesgirl2 New Member

    My doctors will be on vacation until end of month. So, what am I to do. I had a colonoscopy in April, however, if they were not looking for Celiac they would have checked. Neither my PCP or gastro believe a blood test is the best way to test. UGH! another colonoscopy. Sheesh.
    I just may forget it and go on the GF diet and see what happens for myself.
  14. tracii

    tracii New Member

    As I said before, it took a grand mal seizure due to malabsorbtion & malnutrution (I can't spell today!) before getting an appointment for the test. I kept telling the stupid doctor in the ER to check me for malabsorbtion & malnutrition due to gluten but he wouldn't! He was more concerned that I had a brain tumor! (I guess I should have put this in the pet peeves post!) :)

    I say do what you have to, I was absolutely bedridden (actually pull-out couch ridden!) for several months prior so I was VERY ill & refused to risk another seizure.

    If you can make it, continue consuming gluten. If you can't ~ then don't.

    You have to make the right choice for yourself.
  15. louiesgirl2

    louiesgirl2 New Member

    that vitamin B-12 difficiency can also cause celiac. Guess what, ta day, you guessed it. Know why, had gastric bypass surgery in 1999, talk about malabsorbtion (spelling). Also tend to be anemic. Went to Dr. Weil and found out a bunch on this disease. Interesting.

    The only treatment is a gluten-free diet – for life. Eating even a small amount of advertisement

    Other causes of B12 deficiency include gastric surgery, abnormal bacterial growth in the small intestine, certain infections (especially tapeworms from fish) or intestinal disorders such as Crohn’s disease and celiac disease.

    Symptoms of vitamin B12 deficiency tend to come on so slowly that they may not be recognized for some time. They include fatigue, weakness, shortness of breath, dizziness, heart palpitations, bleeding gums and mouth sores, a red, beefy-looking tongue, nausea or poor appetite and diarrhea.

    also

    Other causes of B12 deficiency include gastric surgery, abnormal bacterial growth in the small intestine, certain infections (especially tapeworms from fish) or intestinal disorders such as Crohn’s disease and celiac disease.

    Symptoms of vitamin B12 deficiency tend to come on so slowly that they may not be recognized for some time. They include fatigue, weakness, shortness of breath, dizziness, heart palpitations, bleeding gums and mouth sores, a red, beefy-looking tongue, nausea or poor appetite and diarrhea.

    Nice huh!
  16. neen85

    neen85 New Member

    I don't think I can afford the bread,but it sure sounds good. I will check the website. Daneen
  17. tracii

    tracii New Member

    Please keep me informed on how you are dealing with the Celiac, what you have learned, etc.

    I could use a "Celiac" friend! :)

    Take care!
    ~Tracii~
  18. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    they only pick it up if you have more extensive damage to your intestines. So it's too easy to come up w/ a false negative. Listen to your body, as sme have already done.

    there is a stool test you can order yourself from Enterolab.com they will send a test kit in the mail for you. They can tell if you carry the genetic predisposition, and if you are actively reacting to and getting damaged from gluten too. They do lactose, yeast, eggs and a few others too. Prices start about $100 for more basic, up to several hundred for deluxe tsting packages. My env. doc is really pushing me to get it done.

    I'm definitely reacting to wheat again, but that's because the Questran treatment did such a number on my digestion. I suspect I was getting intestinal bleeds. So some of my old food sensitivity has come back. So far it seems to just be wheat, I'm fairly sure I'm not fully gluten intolerant. but I've been going wheat free lately and my painful ear problems have resolved. Not sure me and oats have ever been on the best terms, but seem to be fine w/ rye and barley. Haven't cut them out and I'm good. I bought some rye crispbreads and I enjoy them w/ chamembert cheeze, yum.

    The gluten free stuff readymade is outrageously expensive. I paid $9 for a 6 pack of gf muffins. but I paid only $4 for a loaf of kamut sourdough bread, and I seem to be good. You could try switching to the less common forms of non-hybrid wheat, like kamut and spelt. Many that are wheat sensitive can tolerate them well. Also, even gluten intoleratn people apparently may tolerate sprouted wheat grains quite well, like Ezekiel bread, it does something to change the gluten into something digestible.



    Jeanne