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Newly Diagnosed And Need Some Help!

madwick

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madwick Newbie
madwick
Posted

I was just diagnosed after Christmas with Celiac after a biopsy. I am sure you are thinking "At least you got a chance to eat Christmas goodies before you were diagnosed!" Sadly, before that, I was on a dairy free diet...so, no...no goodies for me. :(

Anyway, I have been on the diet for about 1 month, and I don't feel any better. I have been told that it takes 2-3 months but I am starting to lose faith.

Can anyone speak to the beginning of their diets and how long it took for all the lovely symptoms of celiac subside?

I appreciate your help and advice!

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confused Community Regular
confused
Posted

Have u replaced alot of ur dairy stuff onto soy, if so i would cut out soy and see if u feel better. I had to give up gluten casein and soy to feel so much better. But then i had a downfall and now know i have a major candida problem going on and had to give up sugar and yeast, and now i feel the best i have in years. Im not saying this is you tho. But i would give up the soy and just see how u feel. Also are u just dairy free or casein free, if u are just dairy free you might have to give up all casein. Many people can add it back in after 6 months tho.

Have any more questions just ask.

paula

cyberprof Enthusiast
cyberprof
Posted
I was just diagnosed after Christmas with Celiac after a biopsy. I am sure you are thinking "At least you got a chance to eat Christmas goodies before you were diagnosed!" Sadly, before that, I was on a dairy free diet...so, no...no goodies for me. :(

Anyway, I have been on the diet for about 1 month, and I don't feel any better. I have been told that it takes 2-3 months but I am starting to lose faith.

Can anyone speak to the beginning of their diets and how long it took for all the lovely symptoms of celiac subside?

I appreciate your help and advice!

One month may be too quick to see resolution of symptoms, so don't give up hope! Some get immediate relief, others take longer. Confused's advice is good- give up all casein, dairy, soy (for now) and give up processed foods. Don't eat the gluten-free treats or replacement breads. I couldn't eat them for a while, and if I ate too much food or fat at once I got into trouble.

Eat mostly whole, natural foods like meats, veggies, fish, chicken, fruits. Add in rice and potatoes if you can tolerate them. Some people do better on cooked fruit and veggies while they are healing.

And if you didn't have your vitamin/mineral levels checked you could do that, because your system may not be absorbing minerals and nutrients properly. Some of us were/are deficient after diagnosis. Many here take sub-lingual (under-the-tongue) B12. Others take magnesium. I started B12, magnesium, calcium and vit D.

Good luck!

P.S. It may take some trying but make sure your vitamins/supplements are gluten-free, casein-free. Also, be careful eating out or eating anything that you didn't prepare from scratch using gluten-free ingredients. That can delay healing too. Read on this forum about cross-contamination and get a list of safe foods.

madwick Newbie
madwick
Posted
  • Author

One month may be too quick to see resolution of symptoms, so don't give up hope! Some get immediate relief, others take longer. Confused's advice is good- give up all casein, dairy, soy (for now) and give up processed foods. Don't eat the gluten-free treats or replacement breads. I couldn't eat them for a while, and if I ate too much food or fat at once I got into trouble.

I am guessing that this might be my issue--anything I eat something with fat, I feel really sick and I have been trying gluten free treats. Do you know why you can't eat those treats when first diagnosed? Is there a reason behind that? It is hard for me to give up everything...I need a little treat here and there! However, I do feel pretty crappy.

My GI gave me the go-ahead to start eating dairy again, and just focus on gluten free. Do you think this was a mistake? Should I avoid all gluten, dairy, soy and casein?

Advice is great!

madwick Newbie
madwick
Posted
  • Author

Did anyone out there start their diets out as purely protein, veg and rice and no gluten free treats (ie, chips, pastas, breads, etc). I would love some advice...still lots of stomach pain and issues and would love some relief!

Jodi Mills Apprentice
Jodi Mills
Posted
I was just diagnosed after Christmas with Celiac after a biopsy. I am sure you are thinking "At least you got a chance to eat Christmas goodies before you were diagnosed!" Sadly, before that, I was on a dairy free diet...so, no...no goodies for me. :(

Anyway, I have been on the diet for about 1 month, and I don't feel any better. I have been told that it takes 2-3 months but I am starting to lose faith.

Can anyone speak to the beginning of their diets and how long it took for all the lovely symptoms of celiac subside?

I appreciate your help and advice!

Hello, I have been gluten free for about 3 months, and only glutened on occasion by accident. I still have all the problems, still bloated, fatigued, BD, stomach pains all the good stuff. I too am losing hope, But I am going to try and cut out the dairy and see what happens. I know this healing process takes a long time though, so just stick with it.

I remember when I was about 1 month into I did notice a change and felt soo much better, but now I am back to not feeling 100%. but i can honestly say I do feel better now then I did when I was eating gluten.

Ursa Major Collaborator
Ursa Major
Posted

Madwick, if you were diagnosed by biopsy, that means that the tips of your villi (at least) are gone. However, those tips are what should be producing the lactase that allows you to digest dairy!

So, if you now cut out gluten but added dairy back in, the dairy will stop you from healing. You will need to give up all dairy for a few months at least to be able to get better.

You can try adding some dairy back into your diet after about three to six months to see if it is okay (it may never be, but you can't tell either way at this point).

And since soy can also cause villi damage, you shouldn't have that, either.

The replacement gluten-free foods are VERY hard to digest, and it is not advisable for people to eat them when they start the gluten-free diet. Wait for those until you start feeling better. Also, it is a good idea to not overdo on them anyway, as they are very high in processed starch and sugars and generally aren't very healthy.

And yes, I had to start out with only cooked vegetables, fruits, meat and fish. I can't tolerate any grains, so rice is out. My diet is a lot more restricted (see my signature) than most people's, and I manage. If I cheat, I pay.

I think if you eat some gluten-free pasta once a week or so, you should be okay. Just don't overdo it. And those breads are first of all gross, and secondly very hard to digest. Not advisable right now.

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madwick Newbie
madwick
Posted
  • Author
Madwick, if you were diagnosed by biopsy, that means that the tips of your villi (at least) are gone. However, those tips are what should be producing the lactase that allows you to digest dairy!

So, if you now cut out gluten but added dairy back in, the dairy will stop you from healing. You will need to give up all dairy for a few months at least to be able to get better.

You can try adding some dairy back into your diet after about three to six months to see if it is okay (it may never be, but you can't tell either way at this point).

And since soy can also cause villi damage, you shouldn't have that, either.

The replacement gluten-free foods are VERY hard to digest, and it is not advisable for people to eat them when they start the gluten-free diet. Wait for those until you start feeling better. Also, it is a good idea to not overdo on them anyway, as they are very high in processed starch and sugars and generally aren't very healthy.

And yes, I had to start out with only cooked vegetables, fruits, meat and fish. I can't tolerate any grains, so rice is out. My diet is a lot more restricted (see my signature) than most people's, and I manage. If I cheat, I pay.

I think if you eat some gluten-free pasta once a week or so, you should be okay. Just don't overdo it. And those breads are first of all gross, and secondly very hard to digest. Not advisable right now.

This is super helpful--thank you! I will try to stick to a more basic menu for now...any good ideas for breakfast when you are dairy/gluten free? I find I really need something in the morning otherwise I am starving come lunch!

Liz

dbmamaz Explorer
dbmamaz
Posted

I was having either grits with ham and eggs, rice cake with almond butter and jelly, or a nut-bar (they are new in the granola bar section, but only nuts) - but i just got back a test from a. l.c.a.t that says i'm medium-reactive to rice (cry) and mildly reactive to almonds and pork. I only have 3 grains i can eat, no dairy except egg yolk, and only meats are chicken, lamb, turkey, venison and pheasant. So now i'm at a loss for breakfast, too - i'm afraid to have grits every day for fear i'll start reacting to corn too!

Cara

ThatlldoGyp Rookie
ThatlldoGyp
Posted

easy breakfast that will last until snack or lunch:

boiled egg, fruit, and some additional protien. It is weird grabbing chicken or some other meat first thing in the morning, but it really helps making breakfast last long enough to make it to lunch. (I'm back to being a vegetarian now, but in the beginning I just had to say "sorry" to the critter and eat some egg/meat to get enough protien without soy in my diet.) (I lived on Bob's Red Mill "Creamy Rice" and an egg and a banana for months! ..it re-heats well).

And btw, Ursa, you give such great advice! I totally agree, no diary or processed foods for now.. but do get on some gluten-free probiotics if you can tolerate them. Also, carry a fruit with you, just in case you run out of calories at 10 a.m.

Think "whole foods".. a crock pot should be your best friend right now. Meat, potato, veg (if you can tolerate them), turn on at breakfast and by dinner time it is ready!

Another helpful tip is to decrease your caffine intake, if you drink a lot of coffee/tea , that is.... the last thing you need right now is to stimulate your gut! I drank A LOT of coffee pre-diagnosis to help with the lack of energy thing, and decreasing caffine intake helped me feel better. (prepare for a HUGE headache, though, lol!)

Congrats on your diagnosis (even though it doesn't feel like it right now)! Glad you can begin to heal and hopefully feel better soon!

Ursa Major Collaborator
Ursa Major
Posted

I will often eat left over supper (yes, folks, that is a GREAT breakfast food - who says it is the law to eat only officially declared breakfast foods like cereals for breakfast?). Sometimes I cook cream of buckwheat from Bob's Red Mill, and for added nutrition and flavour I throw a cut-up apple in.

madwick Newbie
madwick
Posted
  • Author

These are awesome recommendations. The nutritionist I saw, while good at her job, wasn't really knowledgeable on starting the gluten free diet. She didn't tell me that I should avoid things even if they are gluten free. And to be honest, after being on a huge restrictive diet for months, I was psyched when I was told that chips and salsa were gluten free! Oh how I missed them.

So, starting tomorrow, I will cut out all the dairy and "treats". :P Hopefully this will help my insides to relax.

Grits are a great idea...can they be re-heated easily? Perhaps some rice and chicken in the AM and a banana. I train for triathlons, so having energy in the morning (especially on days that I swim at 5:30am) is really important! Otherwise, I find it is 9am, and I am so starving that I could eat my arm (haven't checked yet if that is gluten-free).

Thank you all! It is really nice to have some advice and ideas from those that have been through it before.

dbmamaz Explorer
dbmamaz
Posted

I use quaker (I know, notorious for cc) instant grits in the microwave. If you add in some milk-type liquid and cook 4-5 min, they come out kinda creamy!

Cara

madwick Newbie
madwick
Posted
  • Author

I guess my main problem is that up until now, breakfast has been a granola bar and yogurt on the go...SO, I really have to change my routine! Trying to do as much at night before I go to bed, because when you get up early 3 mornings a week to swim, you take all the minutes you can grab...

Any good breakfasts on the go ideas that would help me stick to the more restricted diet?

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