While I do not have IBD, I do have issues with gluten - severe issues. In a share post that should be available this week, I detail my near-lifelong issues with illness and misdiagnoses, only to find that eliminating gluten eliminated my maladies. I discuss how much better I felt in a short period of time and how I eliminated the gluten prior to testing for CD, which I believe I have. My gluten reaction is so severe (I have been "glutened" 3 times in 3 years since going GF) that I cannot bring myself to knowingly consume gluten - it is that aversive to me. Your "wooziness", I can relate to - the "gluten veil", I call it - woozy, foggy, just a few degrees off where I should be. Also, I had a series of 15 TIAs approximately 10 years ago, and now researchers are making connections between TIAs and CD. The fact is that gluten can cause a reaction that manifests in hundreds of different ways, depending upon the individual. Gluten intolerance, gluten sensitivity, and wheat allergy are different from CD in that the gut is not ravaged by gluten in the former 3 conditions as it is in CD. Those with CD should never ingest gluten, symptoms or not, as internal damage is still occurring. Great post, very interesting reading. ~Gigi
Hi Gigi.
Thanks for your reply. Just as an update, I've added back all the potential silent migraine trigger foods and the only one I have problem with are bread - i.e. gluten, get that woozy feeling again. Now, some wooziness at certain times I expect because of the damage done to my vestibular nerve from the brain tumor I had on it. But, that wooziness comes from movement - walking distances, being in large box stores, places with fluorescent ligths - and my vestibular rehab therapist and I are addressing retraining my brain for that.
But just being woozy sitting and feeling like I have cotton balls in my brain only comes from gluten. And as for people who have Celiac, some of them have absolutely NO symptoms of it at all.
I am grateful to Dr. Fasano as he is the one who brought CD and gluten-intolernace to America as something serious for doctors to look at. Before him, it was either poo-pooed or just didn't register.
Congratulations to you on figuring out what your body needs. Believe it or not, not everyone is willing to figure it out.
Best to you,
Elizabeth
Great article Elizabeth. Thanks for sharing your story and findings!
I have been trying my best to eat gluten free for a little over a year now. I was diagnosed with Ulcerative Cloitus in 1999 and then Crohn's last year. Whatever I have, it's thankfullly very mild with only occassional flare-ups. I tried the specific carbohydrate diet years ago and then for a while in 2010. I began seeing a pattern of flare-ups when I cheated on the diet by eating wheat. I would become very sluggish and experience some bleeding (sorry for the gory details). I'm not 100% positive that wheat is the culprit but signs are pointing in that direction.
Like you, I was tested for Celiac's disease about nine months ago and the test came back negative. My gastrointerologist is great but, like most medical doctors I've seen, totally dismisses wheat, or any food for that matter, as causes of cloitus and Crohn's (again, if that's what I have). I get a kick when any GI doctor tells me "We have no idea what causes Crohns and/or Colitus." Then I explain that wheat seems to trigger my flare ups and they respond by saying that that is defintiely not it. Really? The logic is so rediculous that it borders on the obsurd. I believe that some day the disease names "Crohn's" and "colitus" will disappear as more specific environmental triggers (foods, pollens, etc..) and their adverse affects are pin pointed and identified.
Again, thanks for sharing your story. It's good to know there are others out there living with similar situations. Living gluten free is no easy task for a wheat and bread lover but it is what it is.
Grant
Hi Elizabeth,
I am new to your shareposts, but will read more from now on. This was very interesting. I visited a college friend some years ago when his doctor told him he was allergic to wheat. I didn't know then how he could avoid it in his daily diet.
I am glad your IBD has been better lately. It’s interesting, isn’t it, that so few incidents – a quarter of a baguette and a little pan here and there – would be so bothersome. It makes us want to stick with our diet plan no matter what.
I wonder, is your bread recipe regular or special beyond the locally grown wheat flower?
I am interested in your whole foods cooking class. Good luck.
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Elizabeth, great posts and insights. One of the things I found interesting about CD versus gluten sensitivity is that the villi in the lining of the small intestine aren't flattened in CD, so whatever immune system response or other protein digestion imbalance must be happening through some other means. Your vertigo symptom suggests, maybe, a linkage in your case to some of your sensory systems or even some kind of neuro-feedback loop. The body is amazing (if infuriating, when we can't figure out what combination of things is making it not work as expected).
I was crushed when I was in Spain by eating their gofre's -- the cream and ice cream on top might've done it too!
BTW, on a product recommendation front, we have had good luck making bread with King Arthur gluten-free bread mix -- not sure if you've tried it. http://www.kingarthurflour.com/glutenfree/
Thanks, Anniston.
I've just this week started a 5 month nutritional cooking class. One of the first things they said was to remove all glutenous grains from all diets, period. Just not good for you unless truly whole wheat from a well sourced supplier.
This is going to be a very interesting class for me both from the nutrition side, but also the culinary and eating side. We make lunch and for the past 2 classes what we've been making and eating have pretty much been foods I've avoided for years and years because they made me "sick." I'm now finding out I'm just not preparing them properly or combining them properly, etc. And it's only day 2.
Best to you,
Elizabeth