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Starting Today (he Said)

ana

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ana Rookie
ana
Posted

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.

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Ursa Major Collaborator
Ursa Major
Posted

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.

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SchnauzerMom Rookie
SchnauzerMom
Posted

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.

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Guest nini
Guest nini
Posted

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.

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ana Rookie
ana
  • Author
Posted

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??

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daffadilly Apprentice
daffadilly
Posted

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.

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Guest nini
Guest nini
Posted

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

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ana Rookie
ana
  • Author
Posted
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.

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      Joint swelling when ill even on gluten-free diet

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      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
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