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Looking For Some Reassurance
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3 posts in this topic

Hi there

I am looking for a little reassurance. I come from a family where digestive problems are rife...we have IBS, reflux and all sort of problems on that front and we have always had issues digesting bread and pasta.

For the past 10 years, I have been ill for at least 50% of the time. Lots of sore throats, fatigue, poor immune system, digestive problems, indigestion, reflux, nausea, the big "D" on a daily basis, hypoglycaemia, bloating, gas, itchy skin, gum problems, I eat very little (less than my 8 year old child) but I am a bit overweight despite this, I have also had problems with anxiety and constant issues with headaches and "brain fog". I thought for a while I was going mad, because the doctor kept telling me there was nothing wrong with me and it was all in my mind.

Recently, my sister was diagnosed as celiac. I decided then to try stopping gluten myself after reading up on the symptoms, which I seemed to have. I was initially worse for 2 weeks - almost like all my symptoms were magnified, with night sweats, hives, bloating, gas, major mood swings. Then after that I felt much better. Lighter, more vital and stronger.

After six months on this diet, I feel MUCH better. My toilet habits returned to normal for the first time in 10 years after only 48 hours on the diet, the bloating and gas went, my reflux went, I don

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Yes, this is because of your exposure. You are almost definitely celiac. What happens is the longer you are off gluten, the more you heal, the stronger your immune system becomes. All those colds and viruses you used to get? That was because your immune system was too busy attacking your intestines to be bothered fighting off germs. But now it has reccovered, it is no longer constantly distracted with gluten, and so it is like a vigilant soldier, patrolling your bloodstream for offenders! And because it is basically unnoccupied, save for the occasional germ that gets in, when even a teensy weensy particle of gluten gets is WHAM, full fledged attack. All the troops are called in to kill it. Of course, gluten isn't a germ, so the real attack is on your body tissues, which happen to be in proximity to the gluten. And so now you get much sicker, much faster and much more violently then you ever did in your pre-gluten free world.

What you described is very, very typical amongst us celiacs. And while I wish I could say you will feel better tomorrow...probably not going to happen. For the lucky, a gluten reaction lasts a few days, for the majority, you feel lousy for a week to 10 days after, and slowly return to normal. For a few, the reaction can last for weeks.

From here on out, consider yourself a celiac. Be very vigilant about everything you come in contact with, even when it seems you are overreacting. It is necessary to not only save your life, but also to prevent you from a continual low-grade lousy feeling.

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Thanks very much for the reply, I really appreciate it.

After 9 days I started to feel better. Now almost 3 weeks in I feel closer to normal.

It

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    • First, do you have celiac disease?  I assume you do.  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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