Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Starting Today (he Said)


ana

Recommended Posts

ana Rookie

you need to be gluten free...

i went to the gastroentrologist today.. he was great, I really liked how friendly and personable he was. He looked at my test, which really what i'd read here wasn't all that definitive, and said without taking a biopsy, you have it, i'm sure.. even if I got back a biopsy result and it was negative, i'd say you still had it considering you ahve the symptoms and there is no other reason to have these anti gliidian results you ahve. this is so different than what my GP said, she didn't think i had it and said there are many other reasons to get the test results i have.

my biopsy is dec. 8, but he said as of today, you need to be gluten free. that also goes against what what i've read here about the biopsy results but he wasn't concerned, he just felt i have to start feeling better. (yay i have an advocate finally)

that sort of was a relief and also wasn't in a way. I am not relieved that i ahve a reason i've felt so terrible most of my life, but now it's going to be a tough road in staying gluten free. i looked at every can i have in my pantry and box and got rid of half of it all .. i still could probably get rid of more of it. I just don't know what to eat. I have looked at nini's starter kit. i don't know what to make of it. i am really confused today becaue i think all i can eat is bananas, eggs and tuna... i really would like crackers. my small town grocery store doens't have anything gluten free. guess i'm going to thebig city tomorrow.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Ana, you can eat potatoes, rice, vegetables, meat, fish, fruit, all the normal, ordinary plain foods other than things made with flour.

Cook yourself a normal dinner, just don't thicken gravy (if you want to have gravy) with flour, but rather with cornstarch. You can use simple herbs and spices (be wary of mixes).

It is easier to not try to replace all your gluteny things with gluten-free ones at first, because first of all, they're fattening, and secondly, it's easier on your healing villi to eat simple foods for starters.

It will be better if you don't buy anything canned, as that is where all the hidden ingredients sneak in. If you cook it from scratch, you know what you're eating, and there is less risk of getting glutened.

SchnauzerMom Rookie

I'm becoming very good at reading labels. Also, I found a great cook book that has a bunch of great receipes. Concentrate on what you can have rather than on what you can't have. Also remember that gluten makes you sick and it's just not worth it.

Guest nini

it's normal to feel overwhelmed right now. Start simple... you don't have to be limited to just bananas, tuna and eggs right now... In the newbie kit look at the file for Naturally gluten-free menu suggestions and that should give you some idea where to start.

What are you used to cooking? If you aren't used to cooking then start with the gluten-free menus in the newbie kit... in the beginning I relied a lot on McDonald's side salad with ranch dressing, a plain hamburger patty (requested with no bun and no toppings), apple dippers, fruit and yogurt parfait (without the granola), hot fudge sundae... for breakfast I would stop there and get a side order of scrambled eggs and sausage... now yes there is a risk of cross contamination so you have to decide if you want to make that risk... in the beginning it was just easier for me to take that risk than to starve. I put the newbie kit together after about a year because I wished I'd had a lot of that info in the beginning. I hope you can weed through it and find something to help you not feel so overwhelmed.

Also, the Delphi Forums list is verified gluten-free mainstream items most of which should be able to be found at your local grocery store.

ana Rookie

well, i've been gluten free since Saturday the 18th... i've had bad headaches, lightheadedness and just odd feelings, like my body is acting up on me. I can't identify what i've been feeling. I had an appt. for a physical and I talked to my GP about all this and she genuinely seemed happy that we discovered what my life long health problems have been. and she took my blood pressure, which is normally about 130/85. i'm on meds for it because there was a point it was 200/125. it was terrifingly high. so yesterday it was 110/70. what she says, let's do an EKG, and everythign is ok. i am extremely tired and still light headed. my question now is, could this lowering of BP be due to the celiac withdrawal? I"m in shock.

today, Thanksgiving day, I'm thinking i got glutened on something, i was trying to be careful but i am back with a bad stomach ache. I didn't have any desserts because those seem to be the biggest problem areas to find where gluten is. I didn't have bread (sigh) and didn't have gravy. .. but i am feeling back to what normal was before. .. is this what being full of gluten is like? it's how i've felt all my life, almost a little anxious and always with a feeling that i've forgotten something somewhere. I'm going to have to watch all this, perhaps keep a food diary.

but this post in the end is about, can my Blood pressure have gone down because i'm off of gluten??

daffadilly Apprentice

re blood pressure, yes it could go down when you quit eating gluten, and yes, it sounds like you got some hidden gluten in one of the foods that you ate. I hope you are better soon.

Guest nini

sounds like you are going through gluten withdrawals... boy I remember those well... hang in there, keep with it and eventually you will start to feel better. My blood pressure was also scarily high before my dx and I was on bp meds, now my bp is hanging around 117/70...

in the beginning it is still possible for you to be getting into hidden glutens because there is a pretty steep learning curve in figuring out where all the gluten is hidden... and even then you may have found something you are sure is safe, may have been safe at one time, but isn't safe because of an added ingredient or cross contamination. When you find the hidden glutens, don't beat yourself up, just move forward.

I


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ana Rookie
sounds like you are going through gluten withdrawals... boy I remember those well... hang in there, keep with it and eventually you will start to feel better. My blood pressure was also scarily high before my dx and I was on bp meds, now my bp is hanging around 117/70...

Nini,

are you off of the meds now? that's so great about BP. that's anohter benefit of feeling good.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,991
    • Most Online (within 30 mins)
      7,748

    ZENken
    Newest Member
    ZENken
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.