Mass Confusion After 4 Years

[laurajojetter]

I'm trying to get an idea from other suffers what might be going on with my Celiacs. I was diagnosed 4 years ago and given ZERO direction, help or information from my doctor. I am currently looking for a new doctor and thinking about starting from scratch. I would also like to get a full allergy test. I believe i am not only allergic to gluten but here recently fish, dairy and beef???? I have noticed what when I've consumed any of these products, even gluten free versions, i react as if I just ate a wheat feild. Does this sound familar to anyone?? The pain and weeks it takes my body to recover is to the point of insanity. Sometimes I feel like my mind and body are fighting me and that maybe i should just give up and eat rice and apples for the rest of my life. I find almost no joy in food and I haven't been to eat out (unless it is totally gluten-free facility) in years. Does anyone else get the intense back pain and constipation for weeks...months on end?? I take a probiotic daily, multi vitamin daily and B12 daily. Every piece of food I eat is either natural or says gluten free. I have not eaten beef, fish and i have almost taken dairy out entirley. I have this bloated tummy that looks like that of a pregnant woman. I am thin all over but this belly i have.....i need help please! direction...advice...a recommmened doctor.... or it would be nice to have someone with my issues as well that is feeling my self disgust with this disease. Thanks all!!

[rosetapper23]

laurajo,

Not to scare you, but because you are a woman suffering with these symptoms, I'm a bit worried that perhaps you need to have an ultrasound of your abdomen. The symptoms you describe are common symptoms of ovarian cancer (and, again, I'm NOT trying to scare you--it's just something that you should consider sooner rather than later). Many women suffer with these symptoms, assuming that they are food related, and then it is too late. I don't have ovarian cancer, but I have several friends who have had this disease, and they described the symptoms as you have.

On the lighter side, however, it IS possible that you have additional food sensitivities. I strongly suspected ovarian cancer 20 years ago....and then it turned out that I was sensitive to the carrots I was putting in my salads. They caused me to bloat up.

Hopefully, others will jump in with great advice....but I hope you will consider looking into the above concern.

[catsmeow]

Hi Laura, this just sucks so bad!!!!! I have nothing more to offer other than what we already discussed on email. I just hope some of the gurus on here that I told you about have some good offerings for you.

About the idea of ovarian cancer. Didn't you just have a Gyno appt? Did they do an exam, or screen you for anything?

Everyone, I would like to introduce my friend Laura. We met at a 100% gluten-free restaurant a year ago. She is a wondeful person and I am so happy she joined the forum. Welcome Laura.

[mushroom]

Welcome to the board, Laura. I hope you get lots of responses because this is a great community of friends helping friends.

I am sure catsmeow has told you that what you have is not actually an allergy, but an autoimmune response to gluten. Your body makes antibodies to gluten that can cause damage to many parts of the body - most commonly the intestine as in what is commonly regarded as celiac disease.

Celiac disease can make your small intestine "leaky", meaning that it becomes more permeable and is not able to keep out some of the more complex amino acid chains of various partially digested foods which would normally be blocked from entering the blood stream. If this happens your autoimmune system can recgonize these as.non-self, foreign invaders and produce antibodies to combat them too. And POW!! you have another food you do not tolerate. You are not allergic to it, mind you, it is just that it is entering the blood stream in a partially digested state.

What many of us have found is that we keep "losing" foods that we tolerate until we heal our leaky guts. This is done in many different ways, but the primary modalities are probiotics, digestive enzymes (since celiac often adversely affects the production of enzymes in the pancreas), L-glutamine supplements, and making sure that we are not deficient in any vitamins and minerals necessary for the proper functioning of the body. If you have not had the benefit of a celiac-savvy doctor, you will want to be tested for all these essential nutrients (among the important ones - and the list is long - are Vitamin D, B12,iron/ferritin, folate, potassium, magnesium, calcium. You should also have your thyroid function tested if you have not already, and if you are low in D you should be checked for osteoporosis. I note that you have done some of this.

It is unfortunate that not many doctors are hep to celiac problems and it is often a lonely battle we fight. While this post may not have answered your primary questions, I am speaking as someone who kept "losing" foods until I addressed these problems.

[nmull #newly diagnosed]

Hi Laura! To answer your question, yes I have The same issues. I will either go Weeks constipated or The complete opposite. I just changed doctors myself and he is in The process of checking me for Leaky gut, anemia and many other things. I have currently been in The bed for a week because I introduced Quinoa into my diet and I have had a reaction. So please do not feel alone. I am not sure where you are located but I am in Georgia. My new doctor will do a phone or online consult If you wish. www.atlantaglutendoctor.com - I drove 2 hours to see him and I will just tell you, he is worth it. He understood everything I am going thru and even cried right along with me. Good luck and I wish you The best

[GFinDC]

Hi Laura, Welcome to the site!

I think it could be another food intolerance causing your issues. Are you eating a whole foods diet? Avoiding restraunts? Have you checked your vitamins and meds, shampoos etc?

Another possibility is a gallbladder issue. They seem to be fairly common with celiacs.

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

Get tested before starting the gluten-free diet.

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.

FAQ Celiac com

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

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

Open Original Shared Link

[catsmeow]

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

I don't know if you noticed this, but Laura has been gluten free for 4 years, she was diagnosed Celiac in 2008. She's new to the forum, but not to gluten-free. She's beyond the basics.

[Celiac Mindwarp]

I think lots of people have found gluten-free in DCs list helpful. Even those with years of experience get caught out by the basics sometimes. I regularly have a 'doh' moment picking up info from the boards or realize maybe I have let something slip.

Don't diss it too easily, make the most of the massive experience here and value the time people take to contribute!!!!

[GFinDC]

I don't know if you noticed this, but Laura has been gluten free for 4 years, she was diagnosed Celiac in 2008. She's new to the forum, but not to gluten-free. She's beyond the basics.

Yep, I noticed, but she said she got no direction from her doctor and was thinking of starting from scratch. Maybe something in there will help her, maybe not. I suppose I could have taken out the line about the first 6 months tho, that is certainly not right.

[catsmeow]

Yep, I noticed, but she said she got no direction from her doctor and was thinking of starting from scratch. Maybe something in there will help her, maybe not. I suppose I could have taken out the line about the first 6 months tho, that is certainly not right.

You are absolutely right, starting from scratch DOES mean just that, starting from scatch, and I'll bet no matter how far out we are, we can read the basics and learn something, maybe something that never clicked before, but clicks now because we are more experienced. Great job putting all that together for her.