new celiac and struggling help!!

fagosteph

Hi,

So i have always known that I have an intolerance to wheat and starchy foods as the symptoms have been going on for ya while, ya know the headaches, cramps, swollen tummy, constantly feeling tired for no reason, oh I could go on.

Well I got a book called 200 gluten-free recipes and read the first few pages. Boy did I get a wake up call reading that some of the long term effects could cause infertility, recurrent miscarriage and osteoporosis! I can safely say it was the kick up the arse I needed and started my diet that day.

Only I am always hungry!!! Its very annoying. apart from the diet been next to impossible to follow on the days I am in work. (I started taking my own lunch's which is easier said then done sometimes.) I am still always hungry!!

I don't find the pasta's filling, the bread is filling for a short period but doesn't last. As for the rice cakes and crackers I could eat the hole pack in one sitting if they weren't so dull.

Am I the only person that finds this or do others, and if so how have you managed this? I am extra cautious of over eating as I know a lot of the breads and pasta's are bit more carb heavy then " normal" bread and pasta and been 5 foot nothing those few little extra pounds make a difference. (one of my symptoms is dramatic weight loss or gain depending how my body wants to react to the wheat at any particular time)

Any advise would be grateful, and thank you in advance!

Stench Blossoms

It's actually not that hard.

Do you really need bread and pasta?

Plan your meals around a source of protein and then fill the rest of the plate with veg.

Sample diet:

Eggs + bacon /omelet for breakfast
Chicken Salad and soup for lunch
Fish + veg for dinner.

siblers

There's loads of gluten free alternatives out there, gonna take a while for you to figure out stuff that is safe to eat and what isn't to eat. If anything Celiac disease can be a blessing in disguise, as it does force you to eliminate a lot of processed food and start eating whole foods instead.

micko4

fagosteph wrote: »

Hi,

So i have always known that I have an intolerance to wheat and starchy foods as the symptoms have been going on for ya while, ya know the headaches, cramps, swollen tummy, constantly feeling tired for no reason, oh I could go on.

Well I got a book called 200 gluten-free recipes and read the first few pages. Boy did I get a wake up call reading that some of the long term effects could cause infertility, recurrent miscarriage and osteoporosis! I can safely say it was the kick up the arse I needed and started my diet that day.

Only I am always hungry!!! Its very annoying. apart from the diet been next to impossible to follow on the days I am in work. (I started taking my own lunch's which is easier said then done sometimes.) I am still always hungry!!

I don't find the pasta's filling, the bread is filling for a short period but doesn't last. As for the rice cakes and crackers I could eat the hole pack in one sitting if they weren't so dull.

Am I the only person that finds this or do others, and if so how have you managed this? I am extra cautious of over eating as I know a lot of the breads and pasta's are bit more carb heavy then " normal" bread and pasta and been 5 foot nothing those few little extra pounds make a difference. (one of my symptoms is dramatic weight loss or gain depending how my body wants to react to the wheat at any particular time)

Any advise would be grateful, and thank you in advance!

If your from Dublin or near enough enough ring Wiltshire farm foods? They deliver ready made meals for celiac and diabetes and all sorts of stuff..takes all the guessing out of it.. cooked in the oven or microwave but probably Better from the oven.heard of people taking them for weight loss too,the hearty ones are a decent size some of them are small enough probably to suit the elderly people which are popular customers you'd need to try see which one suits ya

Dingle_berry

Have you actually been diagnosed as coeliac or are you self-diagnosing based on general GI symptoms? Because if you were coeliac the results of not sticking to the diet would be a big help to sticking to it!

You're in a habit of eating a certain way and feeling a certain way afterwards. It will take time to break those habits. Just like it will take time to get used to preparing lunches and planning meals. Perseverance and will power will get you there.
AFAIK Foods with better GI/GL and more protein rich foods should be more filling.

The most successful diet, weight watchers, is so successful because it makes people plan and keep track of their meals versus exercise, encourages more filling foods & allows for little breaks/lapses. Try incorporating some of that into your own diet.

Aimeee

Stench Blossoms wrote: »

It's actually not that hard.

Do you really need bread and pasta?

Plan your meals around a source of protein and then fill the rest of the plate with veg.

Sample diet:

Eggs + bacon /omelet for breakfast
Chicken Salad and soup for lunch
Fish + veg for dinner.

This is a good plan. I cut out wheat a few years ago and the one abiding memory (apart from having to get into the habit of planning meals) was the hunger. However I really think it was due to not eating the right foods at mealtimes.
Also don't focus on what you can't eat (ie bread/pasta etc) think of all the things you can eat. Really you can fill your plate with lots of lovely food once you get rid of the wheat.
It's a change of habit.
The hunger thing does pass.

Bull76

Hi,

I'm a coeliac, and found it hard at the beginning to get used to the foods and the foods I couldn't have anymore. Thankfully with the help of my partner who without her I would be hopeless, we got used to the diet. You need to plan inadvance what you will have for meals and what to have to snack on. Lots of fruit and nuts to snack on and lots of veg with you main meal....
It takes time and lots of patience. The Coelia society of Ireland are very helpful. You should look them up. They also have a bible which is very helpful as it lists products that are gluten free and takes some of the guess work out for you when searching.
All the supermarkets have a free from range, some of it is okay others are just full of the wrong stuff. Again it's down to personal preference.
Good luck with your challenge....

Regards,
Bull76.

fagosteph

Thank you for all the info,

I was tested a few years ago and it gave an intolerance reading, however at the time I had been a month off wheat but was in college at the time so when term started again it became to expensive to follow, so as the years have gone on the symptoms have worsened and also now include starchy foods i.e potatoes.

I also have high cholesterol so that doesn't help meaning I shouldn't really be having egg's to often which cuts out a lot of my options for the days I work.

The idea of those meals from Wiltshere sound good for working day's (they are my problem really as I do eat very healthy at home having the time to plan and prepare) I will most defiantly be looking them up.

Also can anyone help in clearing the following up for me.

Does wine contain gluten and if so anyone know of a wine that may not? I have read so many conflicting articles saying no and a lot saying yes it does. Some report that it depends what filtering agent is used during the process and other stat it depends on how it was first stored. On the Irish coeliac site they state it is gluten free yet others don't.

I am asking this as I was just under 2 weeks into been gluten free (even after a few days in work) when we decided to open a bottle. I had one glass which i didn't even finish, by the end of film I couldn't move with the cramps and pain and I looked six months pregnant all within an hour or so if having a glass of wine. This is not the first time I have felt like that after a glass or two of wine in the evening.

Stench Blossoms

fagosteph wrote: »

I also have high cholesterol so that doesn't help meaning I shouldn't really be having egg's to often which cuts out a lot of my options for the days I work.

Eggs don't cause high cholesterol. Eat them.

fagosteph wrote: »

The idea of those meals from Wiltshere sound good for working day's (they are my problem really as I do eat very healthy at home having the time to plan and prepare) I will most defiantly be looking them up.

If you can plan you evening meals what's stopping you planning your lunch meals? Make double portions and have what you previously had for dinner for lunch.

I'm not sure about the wine issue as I don't drink it. I wouldn't have thought there would be gluten in it though.

cmyk

fagosteph wrote: »

apart from the diet been next to impossible to follow on the days I am in work. (I started taking my own lunch's which is easier said then done sometimes.)

Next to impossible? You can't find 10-20mins in the evening to make some lunch? As others have said, cook extra with your dinner and bring it with you the next day, sometimes it really is that simple!

fagosteph wrote: »

I don't find the pasta's filling, the bread is filling for a short period but doesn't last. As for the rice cakes and crackers I could eat the hole pack in one sitting if they weren't so dull.
Am I the only person that finds this or do others, and if so how have you managed this? I am extra cautious of over eating as I know a lot of the breads and pasta's are bit more carb heavy then " normal" bread and pasta and been 5 foot nothing those few little extra pounds make a difference. (one of my symptoms is dramatic weight loss or gain depending how my body wants to react to the wheat at any particular time)
Any advise would be grateful, and thank you in advance!

Just cut out any food that makes you react like that. Search for the paleo diet, as a generalisation it just cuts out grains and processed foods.

That tends to swing more towards the low-carb scale of things, but you really shouldn't have an issue with your carbs coming from non-starchy vegetables unless you're doing a good amount of intense physical activity.

Dingle_berry

fagosteph wrote: »

I was tested a few years ago and it gave an intolerance reading, however at the time I had been a month off wheat but was in college at the time so when term started again it became to expensive to follow, so as the years have gone on the symptoms have worsened and also now include starchy foods i.e potatoes.

Where and how were you tested? Because the screening test is for antibodies that are either there or not. The definitive test is a duodenal biopsy taken during an endoscopy that shows villus atrophy. There's no intolerance result. Saying youve coeliac disease from symptoms alone is like saying youve MS because you have pins & needles.
Are you sure it's not IBS which would explain why things like red wine would aggravate it as well as other foods. Though this would still mean sticking to a diet or suffering.

Orla K

Dingle_berry wrote: »

Where and how were you tested? Because the screening test is for antibodies that are either there or not. The definitive test is a duodenal biopsy taken during an endoscopy that shows villus atrophy. There's no intolerance result. Saying youve coeliac disease from symptoms alone is like saying youve MS because you have pins & needles.
Are you sure it's not IBS which would explain why things like red wine would aggravate it as well as other foods. Though this would still mean sticking to a diet or suffering.

I should point out that it's possible to get a negative result with the biopsy while still having coeliac disease. If someone has found that they feel better without eating wheat/gluten then why not cut it out of the diet.

Dingle_berry

Orla K wrote: »

I should point out that it's possible to get a negative result with the biopsy while still having coeliac disease. If someone has found that they feel better without eating wheat/gluten then why not cut it out of the diet.

Nope. Coeliac disease is an autoimmune condition, the result of which is villus atrophy of the duodenum. While there are serology tests to screen for the disease the gold standard, 100% sensitive test is biopsy. If the biopsy is taken from someone already on a gluten free diet it may come back as a false negative.
There are other conditions that make people more sensitive to wheat in their diets such as IBS, UC, Chrons, etc. the maintenance of these conditions are all different.

If there are things that don't agree with you, of course you should avoid them. But you can't self diagnose based on a few general symptoms.

Orla K

Dingle_berry wrote: »

Nope. Coeliac disease is an autoimmune condition, the result of which is villus atrophy of the duodenum. While there are serology tests to screen for the disease the gold standard, 100% sensitive test is biopsy. If the biopsy is taken from someone already on a gluten free diet it may come back as a false negative.
There are other conditions that make people more sensitive to wheat in their diets such as IBS, UC, Chrons, etc. the maintenance of these conditions are all different.

If there are things that don't agree with you, of course you should avoid them. But you can't self diagnose based on a few general symptoms.

The main flaw in the biopsy to test for coeliac disease is that the villi have to be completely destroyed if they are half gone then it's a negative. There's also the problem of one part of the gut could have some villi intact while the other part is destroyed. It's the best indication of coeliac disease but isn't 100% accurate.

The op did mention coeliac in the title probably to just get the attention of the people who know most about avoiding wheat/gluten in the actual op they said that it didn't agree with them.

Stench Blossoms

Dingle_berry wrote: »

If the biopsy is taken from someone already on a gluten free diet it may come back as a false negative.

I think that's what Orla meant.

It's what happened me anyway. No gluten, no problems.

searay

fagosteph wrote: »

Hi,

So i have always known that I have an intolerance to wheat and starchy foods as the symptoms have been going on for ya while, ya know the headaches, cramps, swollen tummy, constantly feeling tired for no reason, oh I could go on.

Well I got a book called 200 gluten-free recipes and read the first few pages. Boy did I get a wake up call reading that some of the long term effects could cause infertility, recurrent miscarriage and osteoporosis! I can safely say it was the kick up the arse I needed and started my diet that day.

Only I am always hungry!!! Its very annoying. apart from the diet been next to impossible to follow on the days I am in work. (I started taking my own lunch's which is easier said then done sometimes.) I am still always hungry!!

I don't find the pasta's filling, the bread is filling for a short period but doesn't last. As for the rice cakes and crackers I could eat the hole pack in one sitting if they weren't so dull.

Am I the only person that finds this or do others, and if so how have you managed this? I am extra cautious of over eating as I know a lot of the breads and pasta's are bit more carb heavy then " normal" bread and pasta and been 5 foot nothing those few little extra pounds make a difference. (one of my symptoms is dramatic weight loss or gain depending how my body wants to react to the wheat at any particular time)

Any advise would be grateful, and thank you in advance!

Dear Op, I was diagnosed as a coeliac 12 months ago aged 41. It takes a lot of getting used to but when you understand the implications of the condition, you'll stick to it.

It is very important to be properly diagnosed by means of a blood test and scope and you should stick to regular food until after the scope to ensure correct diagnosis.

Other posters have mentioned possible issues with scope accuracy but its best to have the scope and let the consultant explain your particular results.

Assuming you are diagnosed, you should sit down with a coeliac and ask them about what they eat and how they cope. They'll tell you which products are good and bad. They may tell you how they deal with lunch time. I still can't get over that you can't just grab a sandwich in a centra.

Some of the food is rotten but even in the year since I was diagnosed there have been big improvements. Supervalu have their own range of breads and bthree and purebread are in Dunnes and tesco.

Good luck.

Dingle_berry

Orla K wrote: »

The main flaw in the biopsy to test for coeliac disease is that the villi have to be completely destroyed if they are half gone then it's a negative. There's also the problem of one part of the gut could have some villi intact while the other part is destroyed. It's the best indication of coeliac disease but isn't 100% accurate.

Partial or patchy atrophy isn't ignored, it's correlated with clinical (gluten consumption) & other lab data (IgA levels, specific antibody titres, HLA type, etc) and interpreted to diagnose the patient. Also any duodenitis in the biopsy is factored in also. The accuracy relies on the patients diet pre endoscopy and clinical correlation.
What I'm saying is that the OP shouldn't self diagnose and self prescribe a diet for a medical condition, even if it seems to work. The other conditions I've mentioned should be ruled out and the OP should receive monitoring and support if they do have coeliac disease. Keeping a food diary with details of symptoms would be more beneficial.