celiac disease: Hi Im from IRAN 37 year... - Gluten Free Guerr...

Gluten Free Guerrillas

10,828 members4,412 posts

celiac disease

Hedi profile image
Hedi
41 Replies

Hi

Im from IRAN

37 year old woman

I should say since I was 14 I was annoyed by many allergies...and it occurs by Aphthous stomatitis and many other symptoms. 2 months ago I had stomachache and fever and also itching and pains on bones and joint part of fingers, I had endoscopy and they had biopsy on my stomach..the result was :reflux esophagitis Grade A,Hiatal Hernia(Medium Size)-Gastritis- Erosive..the pathology result shows no malignancy..but by using pantaprasole tablets I didnt get better.. dr changed my pills to Nexium ...now for first time I had blood test for IgA ttg...it was 270 ,the normal range should be under 25... so dr told me it is celiac and you should be on a strict diet..you know in my country most of the things are full of gluten..so I have to ommit most of foods...even using toothpaste or cosmetics..there is no a place or store for gluten free..so it is so difficult and the quality of life is decreasing.I should mention that it is near 4 years that I have suffered by Depression..so this disease pushed me to be worse..

my question is that acording to these explanation and also this reality that My father was diagnosed colorectum cancer Grade III 2 years ago,and according to this point that I had the symptoms many long ago and it was not diognosed till now so maybe when I was 14 I had celiac and I was not in diet,so how can I understand if my disease is not going to be cancerous..and how is my chance to be cancerous...I should say recently i feel tingling in my body and also tiredness and numbing in muscles ..is it possible that I am suffering by M.S?

Thank you if u help me in this case.

Written by
Hedi profile image
Hedi
To view profiles and participate in discussions please or .
Read more about...
41 Replies

Good morning Hedi and welcome to GFG, do you know I've been watching the refuge crisis from Syria and wondering how on earth a coeliac refuge copes, so I did a search and came up with this amazing lady who is a Dr and a coeliac living in Kuwait so heres a link to the article, which shows how under diagnosed coeliac disease is in Arab countries so please see:

arabtimesonline.com/hidden-...

Now as coeliac disease (we spell coeliac differently here) is very under diagnosed in Arab states when it almost certainly has the same prevalence in all wheat based cultures.

So my opinion is that you still must be able to buy fresh fruit and vegetables, rice and pulses etc so if you can make all your own food from scratch then you can keep to a strict gluten free diet. And in this article I found it interesting that wheat flour is added to falafels because falafels are made in some countries with just cooked chick peas that are then mashed, have herbs and spices added, formed into little round balls and deep fried, so this is something that you could make at home. You could also make flat breads with naturally gluten free flour like rice flour.

Looking at your other symptoms many coeliac have issues with joint pains and we have many posts in the archives so if you want to search just type in say aching joints in the search box at the top right hand side of the GFG home page and a list of relevant posts will appear, here's an example:

healthunlocked.com/search/a...

As for worrying about cancer and MS I think that you need to get your diet straight as a priority, because when a coeliac ingests gluten it affects more than their gut and makes them malnourished so if you can get your diet straight then hopefully you will reap the benefits and take other ailments in your stride. So take things one step at a time and and one meal at a time and soon it will be second nature.

So good luck and well done for not only joining 'us' but making a post and if you want any advice have any queries or just want to say how hard it is being gluten free in Iran then you carry on as I for one find it fascinating how other coeliac in other countries and cultures cope with all things gluten free.

Best wishes,

Jerry

PS this may also help you:

celiactravel.com/cards/arabic/

Hedi profile image
Hedi in reply to

Thank u really so much for your great kindness and caring..I wish you and your family health..here Dr told me that try to find gluten free products except those from Arabic countries or Turkey...so thats why it is problem for me..yes I am also thinking for those people who are in syria or other places with no security for life..and probably they are in major depression and dont care about ceoliac...so sad and so sorry..

I need to know what will be for me in future..if I obey the diet there is guarantee to say that there will be no problem and no other disease like cancer and MS? and if not Im in danger of which disease??I heard I will be in danger of cancers and many other disease because of ceilac and family history ..my mom also is suffering by diabetes..so sorry if my question is repeated because im so worry and stressful...because the blood test of my son is also IgA 47..so is his future painful??

Thanks Jerry for your reply..

in reply to Hedi

Hi again Hedi, now Regalbirdy is spot on in that if you sick to your diet your chances of cancer are the same as others and in fact if you eat a diet based on fresh foods you could well be healthier and the same goes for your son.

Now just in case you're not aware of it there is a Celiac society of Iran so here's a link:

celiac.ir/en/

Also worth bearing in mind is we all found it hard having to go gluten free as it was like a new world and at first all we are aware of it what we cannot eat but it soon becomes second nature. And our diets can become more varied if we look at all the foods from around the world that are gluten free and foods like onion bhaji's which are also really easy to make and delicious.

We also all share emotions like the fear of eating gluten by mistake and about food prepared by others so you're in good company on here and you will find that we will help you all that we can.

And lastly if we can do it then so can you, so try and think positively as at least you've been diagnosed and know why you were getting ill so on one level you're one of the lucky ones. And are in an excellent position to help your son.

So any more questions queries then you ask away,

Jerry

Hedi profile image
Hedi in reply to

Dear Jerry..

Thank you so much again for your kind guidance...

I am going to be a member of ceoliac society of Iran...my dr. is general manager of that society ..he could diagnose my illness..he is a very kind man..you know wrongly I ate a piece of bread last night..I dont know will be happened..Im calmer by your helps..Im so happy I have you all here..I need to know if I try to obey the diet completely so pains on me fingers will be better in future or not..because I read somewhere that some patients are on a diet for more than 5 years but they said still they are full of pains and they have to use pain killers..

to me dr. told me that I can use just Advil as painkiller..I didnt provide it yet..but if diet will help so why they are still struggling with these things..you know ceخliac society told me that I should not rely on the name Gluten Free on products maybe most of them are fake so they told me to find the original and they send me some brands that the society of Iran accepted them ...for example they told me that all Iranian pills contains gluten ..so for multi vitamin they told me that you should find Multidaily of NATUREMADE brand ..and I should try to prepare everything in kitchen of my self even Yogurt and cheese..I should avoid buying packing things..and so on..there is not a specific place for people who are suffering by ceoliac to buy something..for example if I need milk I should go to a factory miles away..if I need gluten free bread I should go city center far from my house..there is no specific place which you can find everything you need focus there..and by this traffic jam of the capital it is not easy ...thats why Im nagging ...diet is difficult but these things also are unbearable..

Thank u hearing my difficulties...I need a kind ear such as you..

regards

Regalbirdy profile image
Regalbirdy

Hi Hedi,

Welcome here to the Gluten Free Guerillas. I think you have a very good doctor, because he has told you about Celiac Disease (spelt celiac in the United States or coeliac here in the UK).

Being a Coeliac does require you to change your lifestyle and your diet, which is hard but can be done - even if you live in Iran.

The simple answer to your first question is: if you stay on a 100% gluten-free diet for the rest of your life, your risk of bowel cancer reduces to that of a normal person.

The answer to your second question is: you are not likely to have MS. What you may have is a B12 deficiency, caused by your coeliac disease. The tiredness is also caused by the coeliac disease. You could have other vitamin and mineral problems because you have been eating gluten for a long time. If you can, ask your doctor to do blood tests for the things that coeliac's are commonly deficient in following diagnosis, e.g: Iron, Folates, B12 and Vitamin D (if you have not already had these tests). If the doctor says it is your B12 that is low, then ask him if you can have some B12 injections - they will make you feel much better.

How long have you been diagnosed as a coeliac?

When I was diagnosed, I too had issues with depression. It improved a lot when I got my vitamin and mineral deficiencies treated.

In every country many things are full of gluten. In Iran there are many foods that are safe for you to eat and lots of them are the same as we have here in the UK. If you have access to rice, potatoes, lentils and beans, meats, dairy products, fruit and vegetables; then you should be able to eat very well and healthily. Your culture has a rich tradition of foods like kebabs, soups, Dolmar, koresh, meijoo polow, kotlet, haleem baademjam etc. Your culture is also famous for growing fruit such as pomegranates that we find expensive to buy here.

I know you have to avoid all the breads, but so do we. Many of us make our own from rice flour, potato flour, lentil flour, chickpea flour and other gluten-free flours that we have manged to find. The Internet has lots of recipes. Some of the above ingredients are used in indian foods and I often seek out my local Indian community in the UK to buy some of my ingredients in their supermarkets.

Are you able to get cornflour/cornstarch in Iran? Because it is great for thickening stews, gravy and casseroles instead of using wheat flour.

I realise at this point life may seem very hard but if you stay on the gluten-free diet your health will improve over time. Ask all the questions you need to. Being a coeliac can be difficult at times, no matter what country you live in.

Hedi profile image
Hedi

Dear Regalbirdy

wow ..It was amazing for me that you know about the Iranian food and their names ...wonderful..today how Im good by this site..you both made me calm..you know it is 2 months that dr diagnosed ceoliac for me...but it is about 20 years that I have had these symptoms but not this much seriously but the Aphthous stomatitis annoyed me so much and gradually it changed to skin problems and itching mostly when I ate flavors or bananas or walnuts and etc ..I have worried because it is diagnosed so late maybe..infact the drs had wrong diagnose such as IBS and Behjat syndrom and many blood tests and biopsy and colonoscopy except IgA TTG...I studied in a site that if ceoliac is diognosed late over than 10 years so the risk of being cancerous in future will be 36 percent more than a soon diagnosed ceoliac person...

Im so thin about 48 kilograms ..I dont know if this diet help me to increase my weight..

you know my problem is that Im an employee and before this time I always use the restaurant for lunch and during the days always use cookies and other delicious things but now it is so difficult after this time of working when I reach home lately so I have to go to kitchen and be worry about my dinner and lunch..

I used to use Asentra pills for 9 months and I stopped it when I found out the CD problem ..because the sonography told me the liver is a little bigger than normal too..and i heard all pills can damage liver so I prevent to use Asentra..

I should say that I have no concentration and I forgot everything even when im speaking I forgot what I've said and I should think so much to remember..it is one year that Im like that and I should write everything if not I forgot even if it is so serious..I need to know is it because of ceoliac or it is maybe because of MS or it is alzhimer ???it is so sad that I can not talk as before because I forgot everything even the simple things for example what day is it..

thank you so much for your attention and caring

I wish you health and a good comfortable life...

Regards,

Jacks profile image
Jacks in reply to Hedi

What a lot you have going on, no wonder you can't concentrate.

I understand your cancer concern with your weight loss, your father's colorectal cancer and your late coeliac diagnosis. If you have had camera studies (colonoscopy) of your own large bowel as well as small intestine (I think you are saying you have) then you will know whether there is anything wrong there or not. If you haven't had a colonoscopy then get that done when you can to give you some peace. A blood test for inflammatory bowel markers might be useful.

Weight loss, if there isn't anything else wrong, could it be long hours combined with new diet rules and no time, so forgetting to eat? Or are you like me - as a coeliac, unless I load up on carbohydrates I struggle with weight gain.

Anti-depressants don't seem to be contraindicated in coeliac disease though I understand the angst with your liver. There is some evidence that SSRIs can affect your weight so it's worth discussing this with your prescriber. Stopping without reducing the dose gradually can have some adverse affects on your nervous system.

It really is important to make sure you take some food to work with you so that you aren't running on empty. If you aren't nourished you will struggle to think properly and have blood sugar problems. We're all the same on here. I don't leave the house without something to eat later. It's essential.

Hedi profile image
Hedi in reply to Jacks

Hi Jacks

I think you and all people here are Godsend..Thank you sending me your information to help ..and sorry if I am poor in English because of lack of concentration..as you know I have had colonoscopy 2 years ago and also endoscopy 2 months ago..colonoscopy was normal just it mentioned there is prolapse in bowel that I dont know what it means but I understand it is not important..and for endoscopy also pathology result was OK...

I have weight loss ...dr. told me it is because of CD and this fact that the intestine can not have good absorb..also I should mention that actually always I prefer to rest and be in bed even if Im hungry...maybe it is because of depression..

As I told you before I have no concentration and also I forget everything..this is also the reason that I stopped using anti depressant pills...you know I forgot to eat the pill regularly..I had alarm on my cell phone but when it rang I went to kitchen for a glass of water for example, and I forgot what is for..so I missed that..and also vice versa...I ate it and then I again forgot if I ate or not and sometime twice I used it...Thats why I stopped..I dont know if it is Alzheimer or not..or it is because of my depression.. 3 years ago I graduated in master of ancient languages by A+.. so my brain was OK enough..so why am I like this I dont know..

Thank you so much for your efforts and caring toward me..

Regards

Rosie11011 profile image
Rosie11011

Hi Heidi, yes, it's true - stay on a gluten free diet and your chances of bowel cancer return to being the same as the rest of the population. I know how hard it is to change your diet. It's been a real struggle for me because bread was always my favourite food, and even though I eat some gluten free bread I have to really limit it as I think all grains, and oats, have some adverse effect on me. Also I am lactose intolerant, which make it all the more difficult. But hey, seven years after my diagnosis I'm still here and reasonably well. The diet is a nuisance but there are much worse things in life. On the plus side, did you know that being coeliac reduces your risk of breast and lung cancer? Not sure why, but that's what the research tells us. As breast cancer is probably the commonest cancer for women, keep that encouraging thought in mind.

Hedi profile image
Hedi in reply to Rosie11011

Hi Rosie

so it is difficult for you too by this diet..you know bread was my main food..and as you said too when I use gluten free breads also I have problem ..I need too know if vegetable and fruits are free of gluten so why when I eat banana,walnut, kiwi, grapes, and many things my body has reaction and I should use anti allergic pills because itching and paining..so for you it is long time you are on a diet..I need to know if you eat anything wrong by mistake??so what did happened? you mean that during these 7 years you didnt go to a restaurant by your friends and you didnt eat any cake or something in a ceremony??is it possible to eat cake for one time in a year??I am eager to know if just once I do it ,it is asif I have never been on a diet and again my intestine will be damaged completely?

as you said I had a search on net abour celiac and breast cancer..thats true ..it will reduce the breast cancer risk..but for those person who are suffered by celiac without cancer history in the family..genetically Im at risk..because the gens of colon cancer and breast cancer are the same and a person who his parents had colon cancer the daughter is at risk of breast cancer more than a normal person..so celiac reduces the risk of breast cancer but the disease of my dad increase it..

as you said I should think positively and do the things that I like to do ..maybe psychologically it can help...

I wish you health and thank you for helping.

regards

Rosie11011 profile image
Rosie11011 in reply to Hedi

Hi Heidi,

Yes, I've been on the gluten free diet for seven years now, and I do take great care with it. We only very rarely go to restaurants, and only then if we've checked carefully beforehand that the chef understands the diet. I find Indian restaurants by far the best and the most helpful, because they naturally use a lot of different grains in their food, and nothing like as much wheat as in other parts of the world, and I find their chefs are always able to tell me what I can and can't have on their menu. I'm sure that over the years I have made mistakes. In fact, only the other day I had some cooked chicken from a supermarket which I later found out had been basted with something containing barley. I also find I need to take antihistamine tablets at time for itching which I just can't explain.

No, since diagnosis, I have never eaten cake at a ceremony. My own way of dealing with it is to think of anything containing gluten as being like a slow poison. That way it's easier for me to avoid it. You will always find there are some people who think you are making a fuss about nothing, but that's their problem. It's essential that we look after our health. I think that if you've been on a gluten free diet for any length of time, just one piece of cake could give you a very bad reaction. I don't want to take that risk. I don't like being ill, I want to feel well.

I have cut down considerably recently on dairy products, and I think that is helping. I'm reluctant to cut them out altogether as I need the calcium. ( I have osteoporosis, probably due to many years of undiagnosed coeliac disease.) Probably I should see a dietician for advice about this, as on the whole, doctors don't really understand, (unless they have first hand experience with someone in their own family being coeliac!) I have also heard recently that coffee contains a protein similar to gluten, and the immune system can think that it is ingesting gluten and react accordingly. So I'm cutting out coffee altogether for a week to see if it makes any difference. I think being coeliac is a journey of discovery, and I've never been completely well on the diet, even though I stick to it rigidly. I suspect that I had the disease too long so never completely healed, but I stick to the diet because I know things would be much worse for me if I didn't. Like I said before, although it's a nuisance, there are worse things in life. I have much to be thankful for. I wish you all the best on your own coeliac journey.

Hedi profile image
Hedi in reply to Rosie11011

my dear Rosie

your complete explanation was very useful to me...the first think that Im struggling with is that, exactly people around can not understand me and they think that I exaggerate about my needs and also they offer me to eat everything and never pay attention to these spoiled diet or even before the diagnosis they told me you must see everything even if it is allergic one and your body will accepted it finally....or when I say Im depressed they told me you are babyish you are depressed because you are not miserable and other things...you know in these situation I feel so lonley because people not only can not help me but also I they pushed me to an isolation and I learned that stop nagging is my benefit thats why dr think that I am enough patient..

I have also osteoporosis..and I used D3 injection for some months ..I dont have new test recently to see if Im better or not..I heard osteoporosis will not improve but dr. can stop its progress..is it right??I always have pains on bones..

what is the reaction of body toward lactose?how I can understand?

It was very interesting about coffee information..I think it is correct..because when I used it itching began and it was continued for a months...unbearable

I wish scientists can find a better way to treat us..

you know I want to help myself and to love myself too...I have plan to learn playing a musical instrument...I love guitar but there is a problem..my left hand's finger in joints are so painful..and also it can not work as strong as right hand..I need to know using instruments will damage my joints??do you know about that??

I wish you all health and happiness

Rosie11011 profile image
Rosie11011 in reply to Hedi

Hi Heidi,

The lactose intolerance gives me a lot of symptoms such as trapped wind and general discomfort. I couldn't make out what was causing this, but it is definitely less if I don't eat dairy. I too get quite a bit of joint pain, but I think that's due to arthritis. If you have one auto immune, eg coeliac, you are very susceptible to others, so I think instead of blaming coeliac on all my problems I think I have some arthritis, especially in my hands. This causes a problem with writing. Strangely though, I play the flute, and seem to be able to hold it without any problem, and for this I'm very thankful, as I love it!

Hedi profile image
Hedi in reply to Rosie11011

Nice about flute.. I love it too.. Yes I think about arthritis but how I can confirm it...can be clear by blood test? To me also I'm annoyed by trapped wind.. For example I ate some customers camber today and I have trapped wind and also reflux in stomach.. I think because stomach is erosive.. I don't know exactly.. If I use milk I need to know that it may just make me discomfort or also it can damage my intestine and joints.. Is it a serious problem as gluten? I think it is not my recent problem.. Wind trapped was my problem about 20years..

Rosie11011 profile image
Rosie11011 in reply to Hedi

Hi Heidi, I don't think it's anything like as serious as gluten intolerance, more rather a nuisance and very uncomfortable. But I don't think continuing to eat lactose would lead to anything more serious, which even small (by that I mean tiny!) amounts of gluten would do damage to your intestines.

Hedi profile image
Hedi in reply to Rosie11011

I was so bad today.. I could not work at office just tried to be awake.. I had pains in my fingers joint and leg in one side of the body.. I was so tired as if I didn't sleep for a week.. And as if I had mountain climbing.. I didn't know how I can go home.. Why it was like that today.. When I arrived home I've slept for 3 hours and when I woke up it was as if I need more rest.. I became so depressed because I thought whole life I should be worry about what should I eat for tomorrow and always I should take time in kitchen.. I may lose my job.. The quality of work had reduced.. I feel sick.. I'm such an old woman..

Rosie11011 profile image
Rosie11011 in reply to Hedi

Heidi,

I've just re-read your email. I don't think that using an instrument will damage the joints, but I think you should not do anything that causes you too much pain. Could you just play your guitar for a short time, and then have a break to give the joints a rest? How about playing for 15 minutes, rest for 10, play for another 10? Just a thought.

Hope you can sort something out. Doing something that obviously gives you pleasure would be such a boost to you general physical and mental health it would be such a shame to give it up.

Hedi profile image
Hedi in reply to Rosie11011

Yes surely I should manage it to have rest between parts.. I wish all of us health and I wish someday soon the Dr. Should find a pill to control this disease without any side effect

Penel profile image
Penel

Hi Hedi

Fruit and vegetables do not have gluten in them. Unfortunately, is possible to have problems with food other than those containing gluten. I cannot eat foods like aubergine, or foods containing yeast. Perhaps you could keep a diary of what you eat to see which foods are a problem for you? Then you will know which foods to avoid.

I do not eat ready-made gluten free bread. Can you buy gluten free flour and make your own bread? There are many sites with recipes for gluten free cooking. This is one site I have found.

mypersiankitchen.com/catego...

I have been gluten free for about 10 years, I feel very healthy and have all my energy back. If I eat any food containing gluten by accident it gives me lot of pain, so I would never eat any deliberately.

It will take time for you to feel better and to have more concentration, so you really need to stick to the diet, however difficult it may be. Good luck with this.

Hedi profile image
Hedi in reply to Penel

I forgot to ask..I drank a coca ..after that I ate some olive which the seller told me it kept in water and salt mixture...these both used in same day..and at night my body had reactions..I dont know which one was the problem ..the coca or the olive..do you know it??

Penel profile image
Penel in reply to Hedi

It is probably the coca, as some brands often have barley in them. You need to read the labels on everything and if there is no way of doing this, it's probably best to avoid it.

Hedi profile image
Hedi in reply to Penel

Thank you so much..there were not any label on it..so it is because of coca..so I can eat the olive...thank u again

Hedi profile image
Hedi in reply to Penel

Hi Penel

I wrote you a long reply But I dont know why there is nothing here??

Thank you for you great information you sent...I was amazing by persian kitchen link..as Im Iranian all these things are as our main food but I was never learned to provide them and now I can use its recipe..

I cannot eat foods like aubergine too..itching of mouth and some other serious problems will annoy me..I dont know which foods contains yeast..but I heard about that allergic reaction..

as you said I should prepare food by myself because maybe I am allergic with corns,..I am so hopeful by your message ..if you can get your healthy back by diet so maybe I can...but when it started to get energetic?? it is 2 months that I started diet..but I lost weight again and I feel so weak..when I can be better??you know itching is better but not completely improved..it is because of what??maybe there is Gluten on bread??I dont know...

Thanks

Penel profile image
Penel in reply to Hedi

It took about 6 months before I started to feel better, but I was not as ill as you are.

Hedi profile image
Hedi in reply to Penel

So I should try to scan my diet again.. And examine what is OK for me... Thank you

pvanderaa profile image
pvanderaa

Rice and oats grains do not contain gluten, unless it was processed in a factory that also processes wheat, barley or rye grains and was contaminated.

Wash your rice before cooking it to eliminate as much contaminant.

Chickpea and lintels do not contains gluten so hummus and such are good.

Falafal sometimes has wheat flour added so I've had some issues with these.

Any fruit or vegetables are good.

I cook all my own food and eat very little pre prepared foods. One thing we have in the USA is very good government rules on package labeling for allergens and ingredients.

Has your stomach been tested for the bacteria heliobacter pylori? My stomach issues started with this bug. It has also been linked to stomach cancer.

Also has your Dr tested your blood for vitamin B12 deficiency?

For celiac, you also have to eliminate dairy from your diet because the casein protein in milk is similar to the gluten protein. This means all yogurt, even goats milk cheeses. Many snacks include the whey protein which is the casein.

Many gluten free products still include the milk so are still not suitable for celiac diet.

Hedi profile image
Hedi in reply to pvanderaa

Hi pvanderaa

Thank you for the useful information..I dont know if my dr checked me about Helicobacteria ..it is my question too...I should ask it..if I eliminate milk so it will be worse to be able to manage the diet because now milk and yogurt are my main food...so maybe my joint pain is because of milk??

I didnt have any Vitamin test yet...I know that most of them are in insufficiency range..because I feel so tired and weak.. I started multi daily vitamin pill since 3 days ago..

dont worry about the bug of stomach because it will be treated by antibiotics..and also you should know that helicobacter pylori which is not diagnosed and is not under treatment is at risk of cancer just 3 percent ...but the risk of cancer for the person who is suffered by ceoliac the risk of intestine cancer is about 20 percent..

you know I have osteoporosis so I should use milk...what should I do if I ommit it from my diary..

pvanderaa profile image
pvanderaa in reply to Hedi

Calcium pills or a multivitamin with calcium. Try to eliminate dairy from your diet for two weeks to allow your body (liver and gut) to completely detoxify. If you see no results - reintroduce dairy and see how your body reacts. Two weeks will not be so long to affect your osteoporosis.

Also start keeping a diary or logbook of your foods and medications. New symptoms appear and you may seem to get worse before getting better when you change or start new medications. Also there is a 6-24 hour delay from eating something like dairy and the symptom appearing.

For me it is 24 hours later I get brain fog and confusion after eating gluten or dairy.

Hedi profile image
Hedi in reply to pvanderaa

Thank you so much ..I will do that soon..you are a good prescriber ..it is a good idea..I should try to cook bread by myself too..maybe my joint paint is because I use gluten free bread from factory..

pvanderaa profile image
pvanderaa in reply to Hedi

I eat mostly rice dishes - casseroles with meat and vegetables and spices all baked together. I typically try to eat this same thing for several days to experiment with what works for me. This way I don't mix too many foods and try to sort out too many symptoms.

If I suspect a particular food, I eliminate it for two weeks and then reintroduce it to confirm a reaction. The two weeks allows the liver to completely detoxify from it.

The reaction sometimes is immediate but most times occurs 24 and again 48 hours later.

By eating the same food (rice casserole) for several days in a row, I monitor for the reaction to only the items in that food.

As I start to trust certain foods, I can also eat them without fear of having a reaction or symptom.

I keep a logbook for all my symptoms from food and meds and so far for the B12 deficiency, biweekly cyano-b12 injections, folic acid supplements and a daily multivitamin are my medications.

Gluten, dairy, soya and palm oil are my allergens.

Good luck. Not certain how to say that in Persian.

Hedi profile image
Hedi in reply to pvanderaa

again Thank you so much..I will try to ommit bread and milk for 2 weeks soon..and start a diet according to reactions..so I should use vegetables and fruits and rice ...I started the diet about 2 months..itching and symptoms are better..but did not completely removed..I need to know that 2 months on a diet is enough for improving completely??or it is soon to judge??it should be completely ok??I dont know

Polaris profile image
Polaris

I'm so sorry you are feeling so unwell Hedi and I wondered if you'd had your vitamin B12 levels tested? Coeliac disease or absorption problems could put you in the high risk category of vitamin B12 deficiency, causing you now to have neurological symptoms, which should be treated without delay.

Pernicious anaemia/b12 deficiency often runs in families and it could be that your father was not diagnosed with B12 def, and he would then have been more prone to intestinal cancer. Unfortunately very few GPs are familiar with the latest research and guidelines so it is essential to learn as much as possible:

b12deficiency.info/films

The latest BMJ research document with useful summary:

cmim.org/pdf2014/funcion.ph...

Hedi profile image
Hedi in reply to Polaris

Im reading the Pdf you sent...it is so useful..Thank you

Hedi profile image
Hedi

Hi Polaris

wow ..you sent me very good point..I didnt have Vitamins test..Im sure it is my problem...I couldnt download the film as Im at work but I searched about it :

Causes of Vitamin B12 DeficiencyVitamin B12 deficiency can happen if you have certain conditions, such as:

•Atrophic gastritis, in which your stomach lining has thinned

•Pernicious anemia, which makes it hard for your body to absorb vitamin B12

•Surgery that removed part of your stomach or small intestine, including weight loss surgery

•Conditions affecting the small intestine, such as Crohn's disease, celiac disease, bacterial growth, or a parasite

•Heavy drinking

•Immune system disorders, such as Graves' disease or lupus

•Long-term use of acid-reducing drugs. Stomach acids help break down animal proteins that have vitamin B12.

You can also get vitamin B12 deficiency if you're a vegan (meaning you don't eat any animal products, including meat, milk, cheese, and eggs) or a vegetarian who doesn't eat enough eggs or dairy products to meet your vitamin B12 needs.

Babies born to mothers who are vegetarians may also not get enough vitamin B12. Vegans can take supplements containing vitamin B12 or by eating vitamin B12-fortified grains.

The risk of B12 deficiency also increases with age.

so much good information ...I should use vitamin pills??or injection is prefered...anyway my appointment with dr will be next 2 weeks..I should ask him many things

Thank you dear friend

Regards

Polaris profile image
Polaris

A very good summary Hedi !

Injections are better if B12 is not being absorbed and you have neurological symptoms but Sally Pacholok, author of 'Could it be B12? - An Epidemic of Misdiagnoses' recommends covering all bases with injections and supplements. Be aware that supplementing will skew all tests so it is better to wait until tests are done.

I'd been thinking that it's a shame that everyone on thIs site, as well as the thyroid UK site here could not have more access to this information (four in our family have autoimmune thyroid disease as well as B12 deficiency, which is interlinked and symptoms overlap) and many researchers believe that 'leaky gut' is the ground zero of autoimmune conditions.

The PAS society website and here on Health Unlocked is a good source of information as many find they have to source their own injections unfortunately.

I hope your appointment goes well.

Hedi profile image
Hedi in reply to Polaris

So I will stop supplement since now and I will ask Dr to prescribe me blood tests for vitamin.. Exactly I think those symptoms of weak memory and so on is because of B12insufficiency and thank u so much informing me.. Wish you health..

Jacks profile image
Jacks

Taking on board your symptoms and concerns; pain with trapped wind and difficulty maintaining a coeliac diet and feeling it is useful - is it possible you might benefit from following a FODMAPs programme? You'd halt the wind and it would give you something to get your head around. Have a look:

theibsnetwork.org/the-self-...

Hedi profile image
Hedi in reply to Jacks

dear Jacks

thank you for the site you informed me..I had colonoscopy and they didnt told me about IBS...I need to know how does IBS diagnose? by colonoscopy or other tests?when I use corns and some foods I am like this...so these symptoms dont related to celiac and it can be IBS?

last night I couldnt move my left leg..I dont know what is the name of that joint..but the joint of my leg in upper point was painful..I am in diet for 2 months but symptoms are not better I am just improved in itching but the joint pains are worse a little..I called the dr. and changed the appointment to visit him sooner..I hope it is not because of milk..because beside celiac I am allergic to nuts and some of other foods and also because of erosive stomach and reflux I am avoided to eat vegetables and fresh fruits ..so it will be more difficult...

I wish these hard time will pass soon..and I can manage everything

Jacks profile image
Jacks in reply to Hedi

I believe that IBS is diagnosed by eliminating all other possible causes (rather like refractory coeliac disease). In IBS blood tests would not show inflammatory bowel markers and colonoscopy would exclude cancer, crohns and ulcerative colitis.

Angel25 profile image
Angel25

You will need fiber in your diet. Heart health reasons as well as feeling well. I haven't been to Iran so do you have access to other types of milk products such as coconut or coconut almond? I feel better using those. Straight almond not so much liking to my tastes, rice milk is pure sugar. Perhaps you can check into this some way? I know it is difficult as you said above for many depending on situations in Middle East right now and having to go to a different diet must be disheartening if others are not willing to help there. If a health food store in Iran or bigger city would be nice. I've been Googling Iran and Celiac or Gluten Free and yes people know it is difficult. Besides what is there; how is it for vegetables such as Spaghetti Squash or cauliflower, etc? You can do a lot with both in dishes for gluten free. Perhaps some kinds of vegetables available you can experiment. Long term no matter what take fiber or eat enough fiber in things to make up for lack. It is late here so sorry if didn't make sense. Hope for you the best.

Hedi profile image
Hedi in reply to Angel25

Dear Angel

sorry reply you late

I found out that totally milk also makes my fingers painful...but about almond or coconut milk I didnt taste it..I should ask the dr..because he said you can not buy many things from stores because mostly they use adding and preservation to keep the foods safe and health..you know I have other problem so sometimes vegetable also increase my pains in stomach because of ulcer in stomach and refluxing..

I should say last week my son was under endoscopy for diagnosing celiac and some biopsy were done..it was done by propofol..I was so worry..the result was fissuring in D1 and D2...

tomorrow he should have blood test for vitamins...and then after results we should meet the dr..

say prayers for me

You may also like...

Tests for celiac disease

but would like to know if I have gluten sensitivity or celiac disease if I do ill take the results...

8 year old celiac disease

anyone has any tips regarding children with gluten free diets. I have the worlds fussiest child who...

possible celiac disease

a lot of yellow diarrhoea is this a sign of celiac disease?

Celiac disease - Gluten intolerance, what is the difference please?

How should I get tested for celiac disease please? and how can I know the difference between gluten...

Wrongly diagnosed with celiac?

so I had blood tests, stool sample and an endoscopy. The results came back the I had celiac disease...