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So Anxious...


Lux

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Lux Explorer

I know this may sound as if I'm jumping to some wild conclusions here, but I've been incredibly anxious about this - to the point at which I don't know if it in fact IS just paranoia anymore.

I am 25 years old and I have experienced bloating/constipation for the past 3-4 years. I have polycystic ovaries and a history of anorexia nervosa. I recently took a blood test, which confirmed that I am intolerant to both wheat and gluten. I have now been gluten/wheat free for one week and my symptoms have not yet changed/dispersed.

I am beginning to wonder if I don't have something really serious/life threatening. My thyroid is apparently slightly underactive (only slightly). But for as long as I remember I've had this awful blockage in my gut, so that I can't recall the last time I felt "normal" in this manner.

Is it worth undergoing a colonoscopy in order to sort this out? And is it possible that I could have been harbouring some kind of growth for all these years? Or is it more likely to be attributed to the gluten intolerance?

I'm so worried...


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Lux Explorer

O! Also - my doctor has been reluctant in referring a colonoscopy. She *has* said that I would be very sick right now were my problem hugely serious. Yet I'm still slightly skeptical...

Ursa Major Collaborator

Lux, for most people it takes more than a week off gluten to start feeling better. Plus, you might right now be suffering from withdrawal symptoms. Because gluten will act on some people's brains like an opioid, they also suffer from withdrawal symptoms as if going off an illegal drug when starting the gluten-free diet. Those symptoms often last about two weeks.

In order to know if the gluten-free diet helps, you really need to give the diet at least a month.

Also, you should, at least the first few months, eliminate dairy and soy as well. They can keep you from getting better.

lizard00 Enthusiast

At least you have learned one very valuable piece of info... you are wheat and gluten intolerant. And congratulations on being one week gluten-free! For me that was the hardest week.

But, you need to give it a little longer. For me, my immediate rxn to gluten is a headache, which went away immediately. The digestive things are still clearing up, and it's been 3 months. But overall I feel better, so I am just having to be patient. It takes a while to undo all the damage that has been caused.

Second, have you tried eliminating diary to see if that helps with the bloating? That may be another underlying cause. Try keeping a food journal for a few weeks and see if you can pinpoint what's causing your symptoms.

But either way, be patient. You've had these symptoms for 3 or 4 years. We all want things to clear up immediately, but it took you that long to get to where you are now. It can't be undone in a week. Give it some more time.

Liz

Lux Explorer

I was advised by a kinesiologist to cut out soy and dairy (way back, before even having my bloods done). I will definitely do so from this point onward.

The notion of having withdrawal symptoms sounds interesting - I have been experiencing chronic fatigue, occassional nausea and weakness this past week.

I tried drinking 1.5 litres every morning to "cleanse" myself out, but my doctor chided me that this was putting too much pressure on my system, and could be considered responsible for the DH I had started getting...is it quite common, then, for people to experience withdrawal symptoms?

Curious...

Ursa Major Collaborator

Yikes, drinking that much water at one time is definitely overburdening your kidneys and is a dangerous thing to do. Your body cannot take up more than one cup of water an hour.

And yes, withdrawal symptoms are extremely common when first eliminating gluten. A lot of us (maybe even most) were addicted to gluten foods. I loved German rye bread and didn't think I could live without it. The same goes for potatoes and tomatoes........ I ate a ton of them. It is true that usually you are addicted to the foods you are most intolerant to.

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    • Samanthaeileen1
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    • trents
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    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
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