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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

    2. - Jacki Espo replied to CDFAMILY's topic in Related Issues & Disorders
      5

      Covid caused reoccurrence of DH without eating gluten

    3. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      1

      New Celiac Mama in My 30s

    4. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,955
    • Most Online (within 30 mins)
      7,748

    Mabelie
    Newest Member
    Mabelie
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • 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.