Recently Diagnosis And Not Feeling Well..

[YPG]

Hi greetings from Argentina, I hope this mail finds you well!

 

After several years of so so so many health issues and with wierd rare autoinmune deseases, Ive been diagnosis with celiac disease, I just hope my son test will not be positive, in sha alla..!

I start the diet by stages almost 10 days ago, however it seems Im still on denial, i did cut almost everything, dairys, grains coffee today only, eating extremely healthy no processed food whatsoever, it has been 10 days with mild diarrhea, reflux and having sound in my stomach al the time, I was continue taking my pollen and royal jelly even if i doesn't say gluten free? not sure if that could be the problem otherwise I don't have energy for getting out of my house....I see my doctor once a week he told me it will take time to adjust to the diet, The Polen, coffee and Royal Jelly may be doing a cross reaction? that what I've heard, there is so much information out there that I don't know what to do? 

So my question to any expert is that if it is normal to still have those symptoms even on a 97% strict diet, except for the pollen and RJelly? Could it be the withdrawal symptoms.....!

Im afraid of having Celiac refractory decease? Any insight or enlignthing would be highly appreciate.

Im sick and tired and somehow anger of having to give up almost everything in my life, everything is a new surrender it never finish..

Tks for reading me. 

[kareng]

It can take months to heal and feel a lot better. Eliminate gluten and maybe, dairy. Dairy is hard to digest for the first few months for many people. You don't have to eliminate all grains. Coffee is harsh on your stomach but does not contain gluten.

There is no such thing as cross- reaction, so don't worry about that. I don't know much about the bee pollen.

Read the newbie thread for some good starting information.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[nvsmom]

Welcome to the board!  

 

I've been using bee pollen for years and I would guess it is safe - mine lists no added ingredients. If in doubt, get in touch with the manufacturers and ask then directly if there is gluten in it.

 

My guess is that you are experiencing a withdrawal from gluten containing foods. I experienced that from about day 3 to day 19 of my gluten-free diet. I felt really poorly: exhausted, slow, grumpy,  not mentally sharp, and had an awful migraine that lasted days and days. It is possible that there is still some gluten in your diet, but my guess is that if you are eating unprocessed foods, it's withdrawal - hopefully it has almost passed for you.  

 

Even after withdrawal is done it can take weeks to months to years for other symptoms to improve. I remember my symptoms (fatigue and arthralgias) backsliding after a few months gluten-free but it evened out eventually and I felt much better overall by 7 months gluten-free.

 

Hang in there. These first few months are difficult as you learn a new way to eat, cook, and bake. I promise it will get easier as the months go by and you get good at knowing how to read labels and how to use gluten-free ingredients.

 

Best wishes.

[YPG]

Thank you very much for your kind words and prompt reply, I guess I will have to be patience...as far as the Royal Jelly and Bee Polen, i don't think my suppliers could really asses if there is any gluten or cross contamination, shame ehh it really help getting started, but since I don't feel that well, is someone tell me to cut one arm in order to feel better I will do it! Maybe Im exaggerating a little bit..! But just to be graphic enough. I will have to start educating my self more and doing trial and error, in Argentina we don't have yet a very strong gluten free culture, what i don't really know is if there is a way to speed the recovery process? Ive heard about probiotics, vitamins and supplements and things like that. 

Deep inside, (but very very very deep I do feel grateful for at least knowing what I have, even if there hasn't been any miraculous changes for me as many people describe almsost as been a really new super creature? Or even knowing that my other type of disorders Bechet ++++ will eventually disappear? I supposed I will have to take it one day at a time and by faith.

No more drama for today...

All the best...

[GF Lover]

You said "So my question to any expert is that if it is normal to still have those symptoms even on a 97% strict diet"

 

It is very normal to still have symptoms when you are 97% gluten free.  Celiac Disease requires a 100% gluten free diet otherwise the immune system will not stop attacking.  Keep working at cleaning up your diet and you should start seeing results.

 

Good luck to you.

 

Colleen

[YPG]

Wow! So I must assumed that my ongoing diarrhea is due a not been 100% Gluten free, even if I think I am doing it well, except for the Polen and RoyalJelly? It has nothing to do with the apparent withdrawal symptoms? Im afraid to cut on the Polen or RJ, since in the past every time, i go down on my body or eating there is something with my immune system and organism that get really unbalance and start having all type of word symptoms? Eyes, skin, mouth ulcers, hair loss, shakes, night sweets more fatigue and the list goes on!! 

Apparently it is a rare autoimmune decease, but I haven't any medical evidence whatsoever y spend years going from doctors to doctor with really no good results, except for corticoides which I hate, So I been treating this weird malady for the past 8 years, with a very decent alternative doctors with bee therapy that means applying my self thousands of bees in my back and but, painful at the beginning plus lots of honey, pollen, propoleous it did work for me, because, my body did get somehow stabilized, less symptoms more energy, bla bla, however hi has very natural products but there aren't any 100% certified bee products down here! yeah a new dilemma. (not sure if it is the right place to post this thread? I do have millions of questions, my Doctor down here is very plain and basic, just do the diet, get all Gluten free products & vaya con Dios, more o less attitude?

On the other side after reading the welcome post of Kareng, by the way fist class, I was looking into Probiotics and Enzymes, however there is only one in Argentina, call BIOFLORA but is not on the national celiac list as approved for Celiacs of gluten free? So the my question even is not Gluten Free, is it worth it to used until the diarrhea goes away?

I know there aren't Doctors in this forum and maybe is not wise to follow all people advise, but so far what I've read is somehow scary but the truth which I hope set me free, some how from all this unpleasant symptoms and be able to regain somehow my life and move on!    

[kareng]

10 days is not enough time to heal. It might be months or a year or more. Give it some time.

As for letting bees sting you - that won't help with Celiac and can be very dangerous.

[Bell232]

I found out that I am not only allergic to gluten but also to Soy and many vegetables and fruit.  My chiropractor did some testing on me and after she told me the things I should not be eating, I did my own little study.  She was correct on all of the vegetables and fruit that was on her list of things that I could not eat.  Something to think about.  Soy is in everything and makes me just as sick as gluten.  You could try avoiding it and see what happens. 

 

[YPG]

Thanks for the advice Bell, I really hope thats not the case, I have no problem with soy but with fruits and veggies? That will be a total disaster!! Whats going on with this decease.....everybody told me I was going to become another Djokovic shortly? and so far it getting worst..! Pathetic..! 

[GFinDC]

Hi YPG,

 

You are are on your way to being a gluten-free expert!  It may  take awhile, possibly years, but you are started.  

 

Celiac disease is an autoimmune condition.  That means your bodie's own immune system is attacking itself.  Can you say self-destruct mode activated? 10, 9, 8..  Ah, it helps to laugh about these things sometimes.

 

I know getting started is hard.  But it takes time for the immune reaction to slow down and stop attacking your gut.  Our immune system is very powerful and keeps us alive every day by attacking germs and nasties that come our way.  It has to be ready to attack even the smallest germ that we can't even see with our eyes.  So it is very sensitive to gluten also.  Gluten is anything with wheat, rye, barley and sometimes oat protein in it.  That usually means flours, but can also mean malt flavoring etc.  It can take weeks for the immune system to stop attacking.  So you need to be careful to avoid all gluten sources all the time.  I had gut spasms for 9 months after starting the gluten-free diet.  It's not an instant fix, because healing takes time.  I hope you feel better soon!

 

 

Some starting the gluten-free diet tips for the first 6 months:

 

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Watch out for cross contamination.

 

Helpful threads:

 

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

 

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[YPG]

Thank you very much dear gluten-free in DC!

 

I will follow through all your suggestions!

 

Sincerely and with gratitude